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Spinal Cord Disorders Message Board


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Hi,
I am scheduled to have a 5 level cervical laminectomy and fusion c3-4 to T1 at the end of this month. I keep looking on line but cannot find others who have had more than 3 levels fused at once. The PA at the doctors office said it is rare.
I have myelopathy at 2 levels (3-4 and 4-5) and spondelytis throughout. I have a bulging disc at C2-3 and C6-7 and C7-T1. My neck is straight instead of the normal curve. I have no pain really, and pretty good range of motion in my neck. But numbness in my hands, weakness in wrists, tingling in arms.

I have been to two orthopedic spine surgeons and both say the same thing.
I'm scared, of course, and wondering if anyone has experience with something like this, with so many levels. I'm wondering if I should still try for a 3rd opinion, perhaps from a nuerosurgeon, although that might mean posponing this surgery. The symptoms are increasing, but very slowly. So, has anyone else been through this at so many levels? Thanks in advance for any advice you can offer.
Hi,

I just had the same procedure done on Jan 11, 2010. My fusions were from c-2 thru T-1, and yes I could not find anyone else who had so many levels. I had mine done by a nuerosurgeon and I had gotten 4 opinions that ranged from new york to south florida. I am a 45 year old male. Yes, it is a scarey procedure and be prepared for a rough first week. I am finding the most difficulty is the sleepless nites and I have been very bored as I am a very active person. Get yourself plenty of movies and books to keep yourself busy. It all started with a stiff neck and about a month later I was in surgery due to the servere spinal cord compression. Be patient and things will improve daily. It is to early for me to tell you anything else as I am still in the recovery process. Good Luck...
Hello - there are people around here who have had this many levels, mostly not done all at once, the people I know about had fusions over many different surgeries. There are lots here with multiple levels fused and are trying to avoid the full cervical spine being fused. I am C4-7 and they want to do the other levels but I will not at this point. I suggest you get a 3rd opinion from a neurosurgeon who is non-related to the practice of the people you have already seen! Do not tell that surgeon what you were already told. What I found is sometimes once you go to one surgeon - if the 2nd opinion knows what the first said they may generally not offer a different solution. I am not saying this is always the case but in some cities this is the practice - they may just say yes they would agree this is a surgery that could be done for you.

Do you live in a large, metro city? I think this is a pretty big deal and if you have the capability get a couple more opinions.
Thanks for your quick reply. Yes, I agree, and now am scheduled to see a 3rd neurosurgeon at Mass General in Boston. They have a clinic that specializes in 2nd opinions for spines. I did not tell the 2nd ortho I saw about the 1st one, because I wanted his opinion to be as independent as possible. But he said the same thing as the first one, and in fact he added a disc! So, I would be fused from c3 to t1, which would essentially mean my neck and thoractic spine would be fused together. OMG. I am looking and looking on line and not finding anyone talking about such an extensive procedure. The doctor did say I had diffuse myelopathy which I took to mean it was spread over a wide area. This is so hard to figure out. I am trying. Thanks for your help and encouragement.
[QUOTE=tl1446;4178047]Hi,

I just had the same procedure done on Jan 11, 2010. My fusions were from c-2 thru T-1, and yes I could not find anyone else who had so many levels. I had mine done by a nuerosurgeon and I had gotten 4 opinions that ranged from new york to south florida. I am a 45 year old male. Yes, it is a scarey procedure and be prepared for a rough first week. I am finding the most difficulty is the sleepless nites and I have been very bored as I am a very active person. Get yourself plenty of movies and books to keep yourself busy. It all started with a stiff neck and about a month later I was in surgery due to the servere spinal cord compression. Be patient and things will improve daily. It is to early for me to tell you anything else as I am still in the recovery process. Good Luck...[/QUOTE]

Wow. Thanks for writing, especially after having surgery so recently. At this point, I hope that you are getting a little better and a little less bored. I'm a bit older, 59, female, and probably less active, but I do work full time, walk, drive, travel, etc.. I'm already storing up books and movies.
Can I ask you, did you have a quick onset of symptoms? Where did you finally have your surgery? When you went to different places to get opinions, did everyone recommend the same thing?
I also have not had much neck pain, and so when I went to see the doctor about the numbness in my hands I was dumbfounded by the results of the MRI and the idea of surgery. When they started to examine me I had all these little random things that I had never attributed to spinal cord damage. I've kinda felt like a deer in the headlights these last few weeks. It feels like I went in to pay a parking ticket and got a 30 year sentence.

I really hope that you are feeling better and would love to hear about your progress, if you feel up to it.
That is a great place for a 3rd opinion! I am wondering if you might consider discussing this next item with the surgeon on adding that T1.

I feel my thoracic problems came on after my cervical fusions. I knew I was destined for the lumbar to go bad soon, but previously my thoracic wasn't showing the signs of DDD. I had immediately felt the static position of my spine after the cervical surgeries, even though it didn't impair my ability to turn head etc, I did feel the new alignment. I feel the static position in the cervical put more pressure on my thoracic and helped speed up the problems I am having there. I would recommend you really push on why this level (T1) needs to be included and discuss the pros/cons of excluding it from the surgery! You will have a lot of levels, maybe by keeping T1 free it will help the pressure off the thoracic???

I saw your post to tl1446 and I wanted to add that I never had neck pain other than from too much computer here and there. I woke up one day in extreme arm/shoulder blade chest pain and that is when I found out about my problems. Originally they screened me for heart a week before they figured it out. I too ignored some warning signs I had for the year prior - because I never thought I had anything wrong with me! From symptom onset for first surgery and second surgery I waited about 6 months. I actually wish I had done it immediately because I have perm nerve damage from letting the impingements continue to rub while I waited - now they send pain signals 24/7 because the cells are all mixed up - I have some arm muscle function loss but nothing that impairs my ability. There are so many muscles/nerves the others pick up the slack.

You will blow this up way more than it will be, I don't want to minimize it, but we all make these things way bigger than they end up being. With yours though I think you should be prepared for a longer recovery time, maybe a little more pain early on. If lucky it will go fast, but at least you will be prepared if you take more weeks than normal! Plus all the friends you make will be here cheering you on and ready to share hints.

Generally I have not met too many people who are made worse by their surgeries. Usually it is at least the same or better than it was. Sometimes symptoms don't all go away, the key is to stop the immediate damage that is being done!

Good luck and I will be praying and wishing for a speedy recovery for you.
Hello Neckpatient, Once again, thanks for your quick and thoughtful reply. I am concerned about all the issues you bring up. I have seen 2 ortho spine surgeons. Both said laminectomy. #1 said fuse c-3 to c-7. #2 said fuse C-3 to T-1. #2's Reason: because the thoractic level is already rigid, leaving the one level unfused between (C7-T1)will create a lot of pressure on it and hasten it's deterioration. Made sense at the time. However, it seems to me that Im going to be essentially fused from C-3 right through the thoractic area, given the rigidity of that area. I wonder if there are any unknown problems in my thoractic area. They never took a picture of that. And, also, I wonder about the pressure on the C2-3 levels above that big ol' fusion.
I would like to hear the details of your story/case, but I will look back through your old posts so you don't have to repeat yourself.
Have you ever considered artificial disc replacement, single or multi-level (yes, I know multi-level is not approved...but I see on line that some people do it ine Germany, etc)?

Regarding the recovery, don't worry, you won't scare me. I'm already scared :-).
Again, thanks for your time and your kind thoughtful words.
You don't need to go reading my old posts I can pretty much summarize it pretty simply here - I type faster than it will take you to go read. Artifical replacement isn't for me, I have too many levels in all parts of the spine bad - I am waiting on some much bigger science advancement - I hope it comes soon! I was generally a very active, healthy person who worked a high stress, wonderful career and raised a family.

I had a surgery in 2004 from C4-6 and that was a very bad impingements at the nerve roots and very small cord indent. I didn't have a choice as it was bad. I had a choice between lamni surgery and the acdf. I chose acdf because it sounded like a speedy recovery. The boards were not too developed back then and patients were only begining to share their experiences. I rushed back to work. I was 100% great for about 9 months and then boom it hit again. They took out the old fusion, cleaned it all and extended it to include C7 but we left the T1 junction free, and we also left C2-3 free. THose levels need it also but not as bad and they are probably not the ones making my symptoms so we decided to leave them alone unless my cord gets indented there. I have a congenitally narrow spinal canal so it compounds my problems. Well over the next few years my discs have degenerated in lots of parts of my spine and bulge out and herniate - causing lots of bone spur ridges that are pressing on the thecal sac and nerve roots in all the areas. The thoracic was first after my cervical problems, then finally a really bad central herniation in my lumbar which I have been avoiding surgery, but am now seriously considering going back and doing it because it is finally putting me back down in bed lots of days with bad back pain and bi-lateral sciatica. Along the way I had Thoracic Outlet Syndrome from guarding my arms from pain, problems with bladder retention from the lumbar problem, and also curiously developed unknown effusions around heart and lungs for no reason that they can find. I have lots of nerve pain - I do cycles of gabapentin - can't stay on it long stretches I get goofy. Something really stupid along the way - I also stopped processing vitamin D correctly and that shot my pain levels through the roof. Finally they have been treating me with high doses and now I have only normal pain which for me hangs around 5's even treated, but on daily basis if I am too active can easily get to 7s and even and 8 here and there.

I have a large 2 level hemangioma but it doesn't worry them - and honestly not one of the doctors can really explain how they know if it is really causing symptoms or not because I have such widespread problems it gets complicated. I go to pain management, use fentanyl patch and other meds, I get regular cycles of epidurals and stopped my career and watch my activities. I have been to lots of surgeons, even Mayo and haven't found my golden ticket yet.

I am not really a rush to surgery advocate, but if there is a reasonable plan to at least stop the immediate damage being done I try to encourage people to do the surgery, but keep in mind pain symptoms might not completely go away. The good news is the pain usually does go down a few levels, and when you are talking difference between 8s and 9s to 5s that is a big difference. Also talking about neurological problems not getting worse - then it is a good thing to do surgery.

I have spent the last 6 years researching and studying trying to become a layman expert on the spine and the surgeries. Going as far as reading the surgical books because I keep hoping I might ask the right question for myself that will open the lock. I share what I have learned and if it helps good, and if it doesn't help someone then that's ok too - at least I put it out there.

Please do keep posting here, my next cervical surgery will be the lami because I have grown bone ridges in the acdf that is going to been to be fixed in the next 5-7 years and I would really like to have someone hang on here and post their laminectomy experience for me and others in the future.

Regards, NP
Thanks so much for your reply and all that good info. Sorry I didn't reply promptly, I've been busy doing my own investigations. It is difficult and time consuming. And I'm still not a doctor! As you probably are aware, there are not too many alternatives available for me. So, I have kept my surgery date, but in the mean time I will keep on digging. I'm trying to find more info on who does multi-level cervical artificial disc replacement, especially in this country. Yes, I know it isn't common, but I think it is done, I just don't know where exactly. I'd also like to know if it's possible to just fuse a couple of levels then replace one disc, or some other mixed technique that doesn't leave me fused from top to bottom. I am thinking of asking the surgeon for an MRI on my thoractic to see if there are problems lurking there that might be aggrevated by a big fusion, just as you say. Anyway, thanks. I'll try to keep in touch and let you know. Next week I'm going somewhere warm for a few days, so probably won't be reading anything but novels (;).
tl1446 Just wondering how you are feeling, now you are a few more weeks out from surgery? Hope you are doing well.
[QUOTE=cotton1;4178658]Wow. Thanks for writing, especially after having surgery so recently. At this point, I hope that you are getting a little better and a little less bored. I'm a bit older, 59, female, and probably less active, but I do work full time, walk, drive, travel, etc.. I'm already storing up books and movies.
Can I ask you, did you have a quick onset of symptoms? Where did you finally have your surgery? When you went to different places to get opinions, did everyone recommend the same thing?
I also have not had much neck pain, and so when I went to see the doctor about the numbness in my hands I was dumbfounded by the results of the MRI and the idea of surgery. When they started to examine me I had all these little random things that I had never attributed to spinal cord damage. I've kinda felt like a deer in the headlights these last few weeks. It feels like I went in to pay a parking ticket and got a 30 year sentence.

I really hope that you are feeling better and would love to hear about your progress, if you feel up to it.[/QUOTE]

My goodness - your story is so like mine and we are the same age, same interests in travel and walking etc. I am just waiting for a date for my surgery. Difference is I do have pain - in my arms and some days are worse than others. I am expecting to have the surgery at the end of this month or early next. I was told it was urgent but it seems not enough to take place immediately. In the meantime my NS said it was OK for me to go on the holiday I booked some time ago which involves a 3 hour flight (to Portugal). I am really looking forward to it. I am only away for a week. I just wonder how long I have had this problem and if some of the odd symptoms I have had in recent years are down to the spinal compression. Likening the situation to a 30 year sentence is exactly what I feel - for example not going out in bad weather, limiting use of the car, changing my pillow and sleeping position, using a walking pole in icy weather if I do go out. I have become a real couch potato. And the shock of it all and the pain has resulted in me taking time off work - for more than the odd day - first time I have ever had so much time off.

Hope you get better.
[QUOTE=cotton1;4175755]Hi,
I am scheduled to have a 5 level cervical laminectomy and fusion c3-4 to T1 at the end of this month. I keep looking on line but cannot find others who have had more than 3 levels fused at once. The PA at the doctors office said it is rare.
I have myelopathy at 2 levels (3-4 and 4-5) and spondelytis throughout. I have a bulging disc at C2-3 and C6-7 and C7-T1. My neck is straight instead of the normal curve. I have no pain really, and pretty good range of motion in my neck. But numbness in my hands, weakness in wrists, tingling in arms.

I have been to two orthopedic spine surgeons and both say the same thing.
I'm scared, of course, and wondering if anyone has experience with something like this, with so many levels. I'm wondering if I should still try for a 3rd opinion, perhaps from a nuerosurgeon, although that might mean posponing this surgery. The symptoms are increasing, but very slowly. So, has anyone else been through this at so many levels? Thanks in advance for any advice you can offer.[/QUOTE]
I just had a multi-level 4 ACDF done on Feb.15 and from what I gather, it is not common to do so many levels at once. Today is Friday and I am just now able to sit up without assistance. A lot of post-op info for multi-level is according to your own pain levels. I am having to sleep in a recliner due to the swelling on my neck and shoulders being so swollen I am unable to lie comfortably. I also had a hip graft done because I am at high risk for non-fusion. Did anyone mention the CervicalStim to you? I have consulted with 5 doctors and suffered through this for 2 years. Thing is, when one level is done, it puts pressure on the joints above and below and the chances are you having to go back for more surgery is almost a given. In my case, I had a c6 compression with c3,4, 5, and 7 starting to protrude. I was also sick of being in pain, so I thought carefully about having them all done at once. It hurts a lot post-op but I can also keep in mind no more numbness, etc. and having to wait till it ruptured for something to be "done". Hope this was somewhat helpful to you and good luck. A second or even a third opinion never hurts and check carefully any surgeons.
Hello All, Thanks for posting. I have been away a few days, plus very busy researching, talking to doctors offices etc. As it stands I have postponed the surgery I was due to have this week. It would have been C3 to T1 fusion. I may still wind up having that done, but I felt like I knew nothing about what was happening to me o r why. Till this Jan. I didn't know I had spine problems. As it stands now, I am going to see my original surgeon with a list of questions on Monday, then a 2nd surgeon on Weds. I have to know more, make sure this is my best/only option. But I feel like I am playing with fire because of the spinal cord compression too. So, whatever happens must happen pretty soon.
Eleanor, thanks for writing and sharing your story. I hope that you are doing better by now. I was told to expect about a month to get feeling semi ok, even with the collar and restrictions.
NP thanks for sharing your story. I too am very concerned about starting a cascade of back problems lower down if they fuse my c spine to my t spine. I/they don't have any idea what is going on down there, as no one has ever looked. I'm going to ask for an MRI of that regiion, at the very least.
In your reasearch have you ever lookd at artificial disc replacement? I'm looking now at ADR at multiple levels, and wondering if it is a possibility for me. I have been looking on those forums and reading in pubmed (like you, NP, trying to educate myself) This stuff is all consider experimental, so would not be covered by insurance, I don't think. So, if I were to do it, it had better work, because then I'd need to go back to work to pay it off!!
I guess it's possible to do it one or 2 places here, plus overseas. A lot of people seem to go to Germany.
Again, it's hard to track down people who have done it and lived with it for several years to see how they feel, if they are happy they did it, etc. Just like a 5 level fusion, they are rare ducks I think.
Thanks everyone for you responses. I'll try to keep you posting. Please do the same.
Hi cotton,

I had a fusion in june 2008 from c2 -t2, although my problems of spinal chord damage and thinning were only in the cervical spine. two of the three doctors i saw including the one who did the surgery beleived the fusion needed to be extended into the thoracic area to protect the neck and spine from further injury.

the operation was ten hours and i exercised like a mad woman for months to make sure i was in tip top shape to cope with that amount of aneasthetic. because of the amount of levels fused my doctor took two bone grafts from one of my hips, which caused more discomfort after than the neck brace, which was on for seven weeks.

recovery was difficult i have mild spasticity which makes everything more complicated but the work paid off. my surgeon a spinal reconstructive surgeon, said to me the day he took off my brace, "you need to work hard for this, about 5 -6 hours of exercise a day to get yourself back on track" I have to say he was right and today I walk better than before and my neck feels much better than it did preop. I thought I had no pain but now I realise I did because I have absolutely no tension in my neck now.

I hope you find the answer you are looking for, for me it arrived when i found a surgeon that I had confidence in who demonstrated to me that s/he could provide some solutions. I am glad I had the operation and I hope this post has been of some help to you.

In relation to your concerns about further surgery I know how you feel, I had a laminectomy in 2000 which in some ways contributed to the 2008 surgery needing to happen, but as corny as it sounds you can't control life and the future - you can only make your decisions on the information you have now.

I am 37 I have a friend my age who is fused everywhere I'm not and she has had no revisions since the original operation at 16. I have an aunt who 30 years ago had three to four levels fused in her back and to date no one has had to touch her. So one spine operation doesnt mean there will necessarily be more.....

All my best to you,

GB
GB
hi cotton,

i also just wanted to add a couple of things that concerned me before the operation that might help you:

1. I have 50% rotation either side of my neck, thats because C1 - C2 give you 25% for each vertabrae - so if its from C3, you will have 60% because every level under C2 gives you an extra 10%. I think you will find the limitation in movement an adjustment but something that you get used to comfortably. In terms of looking down I cant see my toes if I dont bend from the hips, but I've decided toes are overrated!!

2. I am now back at work fulltime and coping well.

All the best again,

GB
<-edited->

I posted a link to a government site for clinical trials and I posted a message from another message board with information about doctors who do the multi level ADR. Sorry about that.
Hi Cotton,

I have researched spinal soutions since 2002. This info is a mix of my own experience, research, what I have learned from Doctors here in the US and in Europe. So, please don't take it as gospel, just a learning curve.

I have had 3 Prodisc in my Lumbar L3-L4 L4-L5 L5-S1 by Dr R. B. in Vienna, Austria with great results since 2004, and a fusion at C5-6 by Dr. J. Y. in 2004 at Yale New Haven Hosp, Ct. Both at 37 yo.

The cervical fusion was successful, because it fused, yet within 2 yrs the fusion herniated 4 other cervical discs. So, I return to my US Dr. and he recommends 4 Prodisc-C, which he can do even though ADRs are approved for one level. Drs. can use multi-level ADRs legally under what is called "Off Shelf" procedure. Now the trick is getting the insurance to pay for more than one disc. They will pay for the surgery for all the disc levels needed, but may only pay for one disc. Any other disc needed may cost you 6k each. So, it might cost me 18k. The hospital does have affordable financing if needed. I still hope they will agree on Germany with Dr. R. B. instead which they are entertaining.

I am in the appeals process with my Massachusetts B's insurance now because they approved me for the 5 level fusion at 187k but are a little slow on the 4 ADR surgery for 60k. Yes, reread that again because it doesn't make sense to me either.

This is what I have learned. Fusions are expected to cause adjacent segment syndrome within 5-10 yrs. What this means is the neighboring disc(s) to a fusion may fail, resulting in more surgery. For every disc level that is fused add 10 % more stress on the disc above and below the fusion length. So, a 5 level fusion will put 50%more stress on the disc above and below. Mine was one level (10%)and adjacent segment syndrome happened in 2 years. Keep in mind that my fusion is still considered successful even today because it fused, and it resolved my symptoms of that disc level. Disregard that it ruined the other disc.

If you look at the back as a whole, it was intended to bend, and once you prevent that it has the potential to cause problems. So, there has been good results with ADR-Fusion-ADR, because it restores full range of motion on both ends. Since you would only have a 3 level fusion with an ADR on top, and the bottom then it reduces the stress to 30%. ADRs can handle 30% stress easily. I know because I have been weight training (carefully around my neck issues) but very heavy on my abs, low back, and legs since 2004, with no issues. So, maybe a mix of both may work for you. I also question the T-1 fusion, that is a very good point.

Also, seek out surgeons that do both Fusions and ADRs to get there prospective on it. One of my Drs told me ADRs will never work, as I sat in his office surrounded by awards and patents for his fusion technology.

I hope some of this can help you. I know you are very uncomfortable, and I wish no one had to suffer.

It sounds like you might be from New England, and if so Ct. shore is beautiful this time of year if you know what I mean.
Wow. Newbackguy! Thanks so much for your thoughtful reply. I'm reading this as I sit at a Holiday Inn, just a little north of New Haven, CT. If you know where I mean :-). I am going to see a dr. j.y in the morning. I don't know if I'm a candidate. I have been also looking at Germany. The info about the costs is and insurance is also really helpful. Do you know about how many of these multilevels our guy has done? It seems from my reading, the more experienced, the better. I will let you know how my appt goes.
Everybody. Thanks so much for your thoughtful responses. I'm really grateful for all the info on both sides. I have found 1 or 2 clinical trials for multi level adr. And I think I've tracked down the rew places where it is done in this country, as well as Germany.

I went back to my first surgeon yesterday, and got some answers to my questions re: fusion. Tomorrow I see another surgeon, and will try to get more info re: fusion vs adr, or even if I am a candidate for adr.

It is very heartening to hear that some people do well with fusion and go on to lead their lives. Within a few days I will need to zero in on a choice, as I am concerned that my weakness, etc will spread or be irreversible after a certain amount of time goes by.

None of this stuff is for sissies is it?
Again, thanks to each of you.
[QUOTE=cotton1;4175755]Hi,
I am scheduled to have a 5 level cervical laminectomy and fusion c3-4 to T1 at the end of this month. I keep looking on line but cannot find others who have had more than 3 levels fused at once. The PA at the doctors office said it is rare.
I have myelopathy at 2 levels (3-4 and 4-5) and spondelytis throughout. I have a bulging disc at C2-3 and C6-7 and C7-T1. My neck is straight instead of the normal curve. I have no pain really, and pretty good range of motion in my neck. But numbness in my hands, weakness in wrists, tingling in arms.

I have been to two orthopedic spine surgeons and both say the same thing.
I'm scared, of course, and wondering if anyone has experience with something like this, with so many levels. I'm wondering if I should still try for a 3rd opinion, perhaps from a nuerosurgeon, although that might mean posponing this surgery. The symptoms are increasing, but very slowly. So, has anyone else been through this at so many levels? Thanks in advance for any advice you can offer.[/QUOTE]
I have not been through this many levels, I had C4 through C7, but the most important thing I was told by my neurologist is NOT to let an Orthopedic Doctor do this type of surgery. He was adament that this only be performed by a qualified Neurosurgeon.
If you have not already had this operation, I would suggest doing your homework and finding a hoghly qualified Neuro for this operation.
Good luck...:)
cotton one ..

thanks for asking... however i have had such a hard recovery, i am still in pain, not getting any sleep and feel like i was not prepared for this... i feel i should have been directed to a pain mgt doctor much quicker.. i just got referred about two weeks ago..i have been presribed over twenty different types of meds in the past ten weeks.. my lowere extremeties are extremely weak.. i have short term memory loss, and a buch of other complications due to the meds... i am border line depressed and very very frustrated at this point... i am not even sure if i would have done the surgery and took my chances but all 4 doctors said i would wind up in a wheel chair if i did not have it... so here i am today feeling only about 10% better and still have sleepness nites due to pain and stifness..i can only hope my pain mgt dr gets me on track ... i also just started pt but that doesn't seem to help at this point ...i am trying to remain optomistic but have to tell you ...i wasn't prepared for this both physically and mentally....hope your doing well ....sorry it took so long but i haven't been reading this at all..
tl1446
Nothing to apologize for. I'm so sorry to hear how rough it has been and continues to be for you. It is my understanding that this is a hard surgery to recover from. I trust that you are taking it very slowly, not pushing yourself. It is much harder if you have to go back to work, or if you expect too much of yourself. Can I ask, where is most of your pain? In the surgery area, or in the areas that were effected by the compression? Has anyone explained to you what you might be feeling, or why? If it is caused by your nerves regenerating, then perhaps there is a time frame for when that will end? If the pain management doc can help you manage the pain, then you might be able to make quicker progress. It is exhausting to be in pain, to not get a good night's sleep because of pain, etc.

I have yet to have my surgery! In the course of setting it up, long story short, my new surgeon took an MRI of my thoracic spine just to see if there were problems, and found a tumor. They think it is possibly benign, but it is on the spinal cord. My symptoms are probably still coming from my neck, but now they want to take the tumor out first. So, in about a week I'll be having surgery, but still not fixing the neck. Oye!

I understand what you are saying about not being prepared, but I have to tell you, being prepared still only gets you so far. Don't push yourself too much, and remember to include whatever progress you have made in your thinking--give yourself lots of pats on the back for coming this far. I wish you the best of luck in your recovery. Please keep me posted.
tl1446

I am sorry to hear about your recovery being so difficult. I only had a C4 to
C7 fusion, but I had been going to a pain clinic for about a year prior to the surgery. I do not think I would have survived the last 11 months since my surgery without him. The surgeon was no help in the pain management department.
Like you, I was told by 3 doctors that without this fusion I had less than a year or I would be in a wheelchair.

I hope you have a much better outcome than I had. Needless to say my surgery was less than successful and I am now facing 2 more surgeries to repair my neck.

They want to do another anterior and remove everything they did, clean up and remove the huge bone spur that has grown directly in to my thecal sac and re-fuse from C3 to C7. The next day they want to perform a posterior C3 to
C7 de-compression and put rods and screws through the back as well.
I live in constant pain, although the pain clinic does everything they can to help. I have never made it back to work and am now in the process of filing for disability.

Listen to your body, if something does not feel right, than it probably isn't. I had a few months of relief after the first surgery and that was it. Like you, I was not prepared either physically or emotionally for this surgery and often wonder if I made the right choice to begin with. I am no better off now, in fact worse than I was a year ago.

Most good pain clinics are run by Neurologists, they will listen and if you feel something has not worked or you cannot control the pain they will move you in the right direction. Trust them, I do, much more than any surgeon I have ever listened to.
I wish you well and would be interested to hear back on how the pain clinic works out for you.
Hi cwherry - I am so shocked by your story. Having only had C6/7 op and with still pain in my arms I am horrified by what you have faced and continue to face. Mine has been bad enough and using my arms difficult. I wonder about a return to work. I wish you well and hope you can look forward to a time in the future that is pain free.
[B][/B]
I am fused 4-7, had a cervical laminectomy in 1994 and now am suffering from another bone spur at C2-3 with disc protrusion. I have the expected head lean. They say they need to do a discectomy and fuse 2,3,4 and then insert a rod posterior from 4-t2. I am scared to death. Im 50 years old.
The doctor says the complications are tongue paralysis, and swallowing problems. Im not sure what to think. He says we can wait until I start dropping things to do the surgery, but my thought are Im not getting any younger so maybe do this and get it over with? Anyone have thoughts on this?
Hi Cotton....I've been lurking on this thread and wondering how you made out with the thoracic tumor removal? I am fused from C3 to T1 and had it done at New England Baptist in Boston. It is a long recovery but after 3 years, I feel pretty good.

Let us know how you are.

Jenny
I also am looking at a multi-level fusion in my neck. I have no curve in my neck at all and have numerous symptoms - headache, shoulder pain, tingling/numbness in hands & arms. Some days I feel better than others, so I am debating surgery.

Cotton, I hope you are doing well since your tumor surgery. My surgeon also said it is rare to have multi-levels fused in the neck. I am just not quite ready to do the surgery yet, but I know the longer I wait the worse it will get.
Saucer,

I would seriously, if you have not already consider another opinion. If you read my earlier post you will find I am fused C4-C7 only 11 months ago and now they want to do 2 more surgeries very much like you. Up another level anterior and rod 3 to 7 posterior.
Recent CT scan shows moderate bone spur C5-6 with moderate encroachment on the thecal sac and foramin closed as well.
It is fantastic that you recovered from your 1994 surgery, may I ask what that was for?

I went for a second opinion a few days ago since I am not to happy to rush in to 2 more surgeries less than a year later and was told that much further testing would be needed to even render an opinion on the value of a re-op.
Let me know what you decide to do and if you do have this upcoming surgery, I would like to hear the outcome.

I am scared to death and at 47 yrs old never imagined I would find myself where I am today. It was something the surgeon said to me when telling me I needed the 2 further surgeries that promted the 2nd opinion. It is amazing that the opinions were polar opposites between the 2 surgeons.
[QUOTE=Saucer;4222362][B][/B]
I am fused 4-7, had a cervical laminectomy in 1994 and now am suffering from another bone spur at C2-3 with disc protrusion. I have the expected head lean. They say they need to do a discectomy and fuse 2,3,4 and then insert a rod posterior from 4-t2. I am scared to death. Im 50 years old.
The doctor says the complications are tongue paralysis, and swallowing problems. Im not sure what to think. He says we can wait until I start dropping things to do the surgery, but my thought are Im not getting any younger so maybe do this and get it over with? Anyone have thoughts on this?[/QUOTE]
Dear Saucer,

Like you I am fused at the same levels as you and now find the surgeon wanting to do another anterior to include C3 and also a posterior decompression with rods and screws.

At least you had success with your 1st fusion and if you do not mind me asking what was the original reason for the fusion? Mine was 11 months ago and as you can see it did not work for me.

I am 47 yrs old and never thought I would find myself in this position, but something my surgeon said when discussing the re-op prompted me to run and look for a second opinion. I am not sure if you have done this or not, but if not I would certainly suggest it before agreeing to this next surgery. I have now received 2 opinions and they are from one end of the spectrum to another.

Recent CT showed large bone spur at 5-6 with moderate encroachment on the thecal sac and foramin closed.

I would be interested to hear what you decide and also know how it progresses if you do go through with it. I am not rushing to get back on the operating table since I have still not recovered from the 1st fusion.
Good luck in whatever you decide and please keep me posted as this progresses.
[B][/B][SIZE="3"]cwherry[/SIZE]
Thank you for your response. I have what they call congenital fusion. I believe the fusing started when I was 18 years old. Started with only 2 then went to the 4-7. Had a stiff neck all that time and then started feeling clumsy, pain in arms and legs. First diagnosed with carpal tunnel until the MRI which showed severe stenosis at C2-3 and C3-4. The laminectomy was done to relieve the stenosis. I have never been the same since the surgery.
I'm stiffer now, have problems with the muscles in the back of neck (they are hard), and surgery has caused my head to lean forward. I have headaches all the time and since then the back is failing.
Back has fusion showing at T1-T2 and bulging discs at L-3, L5-S1.
Was going to back pain center for back only (since my neck scared her).
Dr there said my back is doing all the work my neck is suppose to do.

I will have the surgery eventually. I dont want to be in a wheelchair.
I went for a 1st opinion and was told of the 2 same procedures. The 1st one wasnt sure if she should do just the fusion on C234, or both, with the rod, so they both said the same thing.

I too cannot believe this is happening to me. I'm sorry to hear your story is so similar. I have been in pain for so many years, I try to ignore it and move on, but now is becoming unbearable.
I found out that excercising helps with the stiffness but they say now to take it easy.
CW, Please let me know how you are doing and what you decide to do.
CW: I forgot to ask you what happened to you?
Hi Gooseberry, I'm facing what sounds very much like your situation. Will be fused from C2-T2. I am already fused C4-7. I was wondering how you are doing, can you drive, do you still have pain, numbness? It's a lot of fusion but I dont believe I have a choice here.
Hi Saucer,

I just got your email. You are right our stories are similar. Please excuse the long reply but I remember when I was going through what you are now I would have liked to have known someone who had been there. I only discovered healthboards after my 2008 operation.

I was fused in one go from the back (posterior) in 2008. I have a congentially narrow spinal canal, and like you had a laminectomy in 2000 because they found a bump, which turned out to be clogged a tangled veins, that they had to get rid off because it was dangerous to everything. 11 months later they found my spine had destablised from the laminectomy so they kept an eye on it and in 2007 they found that there was more to the story, a bulging disc at C6 that was flattening my chord. Hence what my diligent doctors agreed was going to be a little fusion turned into a big one.

In answer to your questions, no I don't drive but this is not because of my surgery its because I also was born with spasticity so I have been trying to learn to drive but not with great success, because of the spasticity. My spinal reconstuctive surgeon would LOVE IT if I could get my licence.

I am doing well since the operation! My doctor says my walking is better now than before the operation. I can see this objectively too because there are things I can do now like walk on a treadmill unaided that I could never do before the surgery. For me I don't think there is anything I do worse than before the operation, I am really lucky in this - as you know every one is different :-).

Recovery was pretty darn hard work, and scary, but my surgeon made it clear to me that to know that I've got the best results that I could get I needed to work 6 -8 hours a day on myself doing exercises and rehab. I had to take six months off work and it made me poor but it gave me the time to commit to myself. I think its normal to expect after a spinal fusion, particularly when you are wrapped up in a brace and also if you have bone taken from your hip, that its going to be a challenge and painful to get yourself walking again, my problems on this front were exacerbated by the spasticity, but even if you didnt have it I think you need to consider taking some good time off from your employer. The pain from the bone graft is much greater than from neck in my experience.

I am not sure what sort of pain you are experiencing but I was unaware of any pain before the operation because I had got so used to it. My doctors before the operation said that the operation would release all the muscle tension in my neck as a result of the energy I was expending on having to hold my head up. I thought what are they talking about??? Once the brace came off I knew, as my head and neck felt much lighter - I wasnt having to do all the work. I still have minor tingling and sometimes arm pain but its intermittent and I find that if I exercise - even go for walk it usually diminishes.

Being fused from C2 gives you 50% rotation - I can still cross roads and function normally, though I tend to turn my whole torso these days, its just easier. I cant see my toes though and I have to bend from the waist to acheive this!

I can imagine how concerned you are balancing all the pros and cons, the risks there are so many things to think about. I went through months of it - trying to find the right surgeon wondering how it was going to go. My surgeon was concerned too that I might have fused naturally at C2 -C3 because of the destabilisation - they decided to put my in traction for 4 days beforehand to see if they could straighten the spine that way, it did to some extent and took time off the operation. I dont know if this is an option or appropriate for you. My surgery lasted ten hours.

In the end, and before I had the operation, I was glad I made the decision to do it, because I was so exhausted by the worrying and I knew that if I didnt make a decision to take the control I could at the time, I was leaving myself to the inevitability of being in a wheelchair. I remember my surgeon the night before the surgery said to me "Gooseberry trust me I have seen this time and time again, and in ten years you will be in a wheelchair if we dont try and intervene".

I can tell you from the moment I woke up a couple of days after the operation (they kept me sedated) and I knew I could wriggle my fingers and toes I was soooo releived - it was done.

I can tell you once I got to rehab (i had rehab as an inpatient and outpatient for six months) I was scared but still releived I had made the decision and it was done. I did exactely as my doctor said and committed to hours of exercise a day, and to this day I still try and walk and move my neck every day to keep myself from stiffening. By the way after your brace comes off this includes moving your neck because it helps prevent stiffness etc. I find things like pretend boxing helps loosen up my stiff shoulders.

And now? I work four days a week because through all the time off I learnt to live off less money. I do fatigue more easily but I am still glad I had the operation sooner rather than later, because it allowed me to get on with my life, and once I had found a surgeon I felt confident with who had done the procedure before and provided me with proof of his experience I thought the recovery, which was in the end extremely hard work, would be better done at a younger age than at an older age.

The surgery will be a life changing experience - hopefully and I pray for the better.

I wish you all the health fortune in the world.

Take care GB.:angel:
Thank you so much Gooseberry. The information you provided is very encouraging for me. I have had this problem for so long (and of course thought I was the only one) LOL.
I believed my life would not get any better.
I've had the natural fusion since age 18 or 19, it was just me, no big deal. But then as you said, the symptoms of something bad started happening at age 36. The laminectomy I believed would resolve the spinal cord issue and I would just be as I was before, stiff. I was never told of the neck collapsing, and wonder why they didnt put the rod in at that time.
I feel comfortable about making the decision now, I thank you for that. I realize everyone is different and can only pray my surgery goes as well as yours.
I wish you health, and wellness, and again THANK YOU.
Dear Saucer,

I am really happy to help you. I know how you feel about the "why didnt they put the rod in in the first place" but the fact is that destabilisation although it appears common on this website is not common enough for dr's to a preemptive strike! One other thing I was going to suggest is that before you go to hospital you get bars set up in your shower etc to help you keep safe while washing and lots of frozen soft food in the freezer so you don't have to cook.

All my best to you, email at any time.

GB
[B][/B]Dear Gooseberry,
Thank you for the information, I will do that.
[B][/B]Dear Gooseberry,
Just wanted to let you know they have postponed my surgery. After the catscan showed bones growing through ligmaments in neck. Doctor telling me this is going to be a very complicated surgery, and very hard on me.
He says since only have headaches and a little numbness he wants to wait.
He has involved the head of neurosurgery who agrees this surgery needs to be mapped out. Im nervous at the delay, but I feel it's better to know what you are going to do, not just go in there and try to figure it out.
Will let you know. They're talking about 4 months.:dizzy::dizzy:
Hi, Just had the same proceedure done 0n 8 March 2010 by a neurosurgeon. First week is rough, but it gets better as time passes. Hardest part is not being able to be active during the recovery period. Like another poster said...get plenty of books and movies. The sleep part is rough on me...I can't sleep in my regular bed so I'm regulated to my "Lazy Boy" recliner...where I get a few hours of sleep a night. Just went to the Dr and it looks like everything is healing up fine.....we'll see...at least the pain and numbness is gone in my arms and fingers.

I'm looking forward to following everyone's progress as we go through this together.
Well hello again. I'm just home (Sunday ) from surgery to remove the spinal cord tumor. The tumor was benign, and they were able to remove the whole tumor without causing any spinal cord damage(big worry). There were several kinds of monitoring going on, and a neurosurgeon plus my ortho surgeon, plus several other folks. I wound up with a 3 level laminectomy t6-t8. But no fusion. I guess it is a pretty big incision. I don't know, I can't see it. I felt confident in my drs., and pleased with the hospital care. 6 days in hospital then 5 days in rehab. I had to lie flat for 3.5 days, to be careful not to cause a leak or tear in the dura. Not a picnic, but I'm glad I did it and got that tumor OUT. I have to be rechecked every 3, then 6, months, as they can grow back. I'm wiped out, but confident my strength is returnning.
Now I still have to look forward to the fusion. The ortho doc wanted to do 3 days after the 1st surgery but I was worried about the impact of 2 surgeries so close together. However, waiting to heal then go back and do it again is it's own special torture. And, I don't feel as certain about the neck fusion. My ortho specializes in multi-level artificial disc replacements, but he doesn't think I'm a good candidate. He did knock off a level, so I'm down to 4level C3/4 to C6/7. I guess that's something.
I guess I was hoping I'd wake up from the first surgery and find all my symptoms magically had disappeared. Uh, no.
So, that is what's been going on with me. Thanks to all of you for asking.
So glad to hear you are okay. I was lurking on your thread and didn't introduce myself until after you went for surgery.

I had a posterior fusion from C3 to T1 with the Vertex Reconstruction System. It allows the surgeon to place the screws under fluroscopy so they know that the screws are in the right place and not impinging on anything and then titanium rods are attached to the heads of the placed screws. They are bent and matched to your needs. Once in place, they allow for some movement of your neck and aren't attached directly to the vertebrae so the threat of infection is lower. My vertebrae where then packed with a bone putty that used my own pulverized bone and bone morphogenic protein to speed the building of bone to fuse the area.

I have been very happy with the whole thing except for why I needed it in the first place. I have good movement and very little discomfort. I am 3 years post-op. I have no anterior fusions at all....just the posterior. I can drive and lift and do all sorts of things. I was partially paralyzed from the injury that caused me to need the fusion and even that has primarily resolved except for my left arm.

I just wanted to pass along other options for a long fusion. My doc has a whole practice of fixing what other docs have messed up and I was one of them. It is so important to have a world class spine doc. Just glad you are okay and I don't blame you one bit for wanting to wait on the fusion. I would have waited too!

good luck...............Jenny
I can't believe there are so many people who have the same problems I'm having. I do feel for you. My neck problems started when I was in my early 30s (I'm now almost 50). Lumbar problems started in my 20s. I'm fused from C3-C7 and L5-S1. Having disc/stenosis problems at C7-T1, T7-T8, as well as L3-L5....not to mention the arthritic problems at all but maybe 5 levels of my spine.

My problems have caused radiculopathy in all peripherals. Half of one of my hands is permanently numb from a botched laminectomy. I've now found a spine specialist who I have confidence in seeing. I feel its only a matter of time before C7-T1 has to be permanently fixed.

The worst thing I'm going through now is finding the right medication to take care of the pain in all my extremities.
I had a number of cervical spine surgeries. The last one was in 2000 for "Kyphosis" They had to do the surgery in 2 stages. The first part was putting in Harrington Rods from C3 to T4 if I remember correctly and the second part was done a week later. The first part they went in from the posterior the 2nd part they went in to do the surgery from the front. Three levels were done. Total surgery time for the 2 surgeries was 12 hours. Then wore a cervical collar for about 5 months or so. Long healing process. Good luck.
[QUOTE=MrBack;4287364]I can't believe there are so many people who have the same problems I'm having. I do feel for you. My neck problems started when I was in my early 30s (I'm now almost 50). Lumbar problems started in my 20s. I'm fused from C3-C7 and L5-S1. Having disc/stenosis problems at C7-T1, T7-T8, as well as L3-L5....not to mention the arthritic problems at all but maybe 5 levels of my spine.

My problems have caused radiculopathy in all peripherals. Half of one of my hands is permanently numb from a botched laminectomy. I've now found a spine specialist who I have confidence in seeing. I feel its only a matter of time before C7-T1 has to be permanently fixed.

The worst thing I'm going through now is finding the right medication to take care of the pain in all my extremities.[/QUOTE]

GRR! Didnt post last time.
Mr. Back, I too was surprised how many people this has happened to. I am still waiting for surgery, they want "to wait" until they have to do this.
They have me on Vicodin, Soma and Valium (at night). I was concerned because I didnt want to take narcotics but the doctors say this is what is left to help my pain. They want me to take the Vicodin 4 times a day but I only take it twice.
I too have been doing this for a long time, Im 51 now.
I wish you luck.
Saucer
Mr. Back:
It is amazing how many stories you will hear on this board. You are not alone. I come here for support and to vent at times. We need to stick together. Good luck to you. Keep us posted on how you are doing.
I worries me that I won't be able to drive much longer. I've already lost a lot of range of motion in my neck and am sometimes pretty nervious when driving without someone else in the car as an extra set of eyes. I do office work but that's still a lot of neck work and feel I'm no longer too productive.

Is there anyone around that has their entire cervical spine fused?
Hi Mr Back,

I've had from c2 -t2 done for two years now and am feeling well. c2 gives you 50% rotation and in my part of the world that allows you to drive with extra mirrors fixed to the car to assist with visability, but you need to demonstrate that you can control and manouevre the car like a standard driver. i appreciate what you are saying about the office work, i think all the screws in my neck sometimes make me tired but there are occupational therapists here that can assist you in managing tasks in spite of your neck, to help conserve energy and increase productivity. Have you thought about a "refresher course" with your physios or therapists?

When I was recovering from my operation and in therapy the rehab therapists did talk about people that have their whole neck fused, and talked about it in terms of the fact that they just had to move there whole body more than an unfused person, I don't know about you but I am already doing that to some extent :-).

I hope my little thoughts helped, and that you have a lovely day.

GB
Thanks gooseberry,

Wow, C2-T2! How'd the doctor go into the thoracic spine to fix you? My wife got me a Honda Pilot with a rear camera for me last year. It helps a little with backing up.

Yes, I'm already using my whole body to turn for things like crossing the street or trying to get a better look when driving and making a turn and now I have to bend my entire body over just to get the silverware out of the drawer to eat dinner. By using the discs in my thoracic and lumbar (that are already bad) a little more to compensate for my neck, I'm afraid I'll make them worse before long and have to have surgery on my deteriorating again.

I used to be very atheletic (surfing, bicycling, hiking, running, etc.). Now I get my exercise walking on a treadmill like a hamster.

Thanks again, I'm glad I found this place.
[QUOTE=Saucer;4287582]GRR! Didnt post last time.
Mr. Back, I too was surprised how many people this has happened to. I am still waiting for surgery, they want "to wait" until they have to do this.
They have me on Vicodin, Soma and Valium (at night). I was concerned because I didnt want to take narcotics but the doctors say this is what is left to help my pain. They want me to take the Vicodin 4 times a day but I only take it twice.
I too have been doing this for a long time, Im 51 now.
I wish you luck.
Saucer[/QUOTE]
Saucer,
I've tried nearly all the antidepresent pain meds out there for nerve pain and they all turn me into a zombie. Lyrica works very well but it messes my head up more than any of them which makes it difficult to work.
MrBack
Hey, Mr.Black...I'm Jenny with the C3 to T1 fusion. My neurosurgeon has been contemplating going back in to fix more but now thinks he has to turn to my lumbar. Already told me never wanted to touch my lumbar as it looked like a mind field. And I have a wedge fracture at T7/8 that is slowly causing more and more problems.

I have seen x-rays of folks whose entire backs are fused, segment by segment with rods. Met a man at my doc's who was fused from C3 to T7 or 8..forget which. Another woman was fused from her waist up.

So it does happen, unfortunately. It gets tiring , doesn't it.

And lucky me! I have over 40 drug allergies and I tend to run families(many are asthma drugs...I just ran the entire family of drugs)and one of the families I already ran was anything with oxycodone in it. And then I lost the morphines. So I can't take any narcotics unless I am a 10+ because I run the risk of developing more pain drug allergies and I can't afford to do that. I run out of pain meds and I can't have anymore surgery. So I do what I have to to cope.

So I understand your frustration.....there myself right now.

gentle hugs...........Jenny
Hi again Mr Back,

Yes its a large fusion - 7 vertabrae and my spinal ortheopeadic surgeon did all the laminectomies from the front and then the fusions, including the thoracic area from the back. I never would have thought that someone putting sixteen screws in my neck would make me feel better but it did thankfully, even though it was a long haul back.

I think part of the problem of being fused is that it doesnt feel natural to turn your head, you automatically want to turn your whole body because your neck is rigid, but my surgeon says its very important to keep moving your neck as much as possible. Be deliberate about it - go the full range side to side, and up and down whenever you can to keep the stiffness at bay. In terms of trying to not wear out your disks, I have been told until I'm blue in the face "always bend at the knees and try to keep your spine as neutral as possible". Apparently bending from the knees takes the pressure off your spine oh, and don't sit down too much.

Its a lot to take in and keep on top of, but I am happy to do it. I too spend a lot of time on the treadmill but also try and enjoy the outdoor hills when I'm up for it.

All the best to you, GB
jennybyc
What are your semptoms at T7-T8? I just hurt in that area and at times have pain on both sides of abdomen just underneath the ribs.
Thanks
My T7-8 problem gives me muscle spasms that go around my lower chest. Squeezes me so it's hard to breathe. Sometimes I can't tell if it's the muscle spasms or I have a kidney infection (if they are in the back) or a liver problem or they have even sent me to the hospital to have my spleen checked as that is the area that hurts and I have an aneurysm in the artery to the spleen. I guess you'd say it around the lower edge of the rib cage and it can hurt like the devil. It can hurt all the way around at the same time or just hit one area in the whole distribution of the nerve.

Wonder when they'll try to fix that one? Hhhmmmmm.

Jenny
Jenny
Oh my goodness, I've had ultra sound on my liver, pancreas, kidneys, and gall bladder thinking there was something wrong with them because of the pain I was having in those areas. Ultra sound came up good. At that time, I didn’t know my thoracic spine was going south like my neck and lumbar. Fortunately the pain isn't as severe as what the lumbar and neck peripheral pain. Seems that after sitting a long time the pain in the abdomen acts up. I'll have to mention that to the doctor when I see him next week.

Take care



gooseberry,
Thought I'd let you know that I visited your part of the world 25 years ago this summer (Perth, Sydney, and Canberra).
Mr. Black...I went running to the ER thinking I was rupturing an aneurysm only to find out it was the nerves from that thoracic injury. Felt like an idiot. Doc finally got it through my head that the aneurysm was found "by mistake" and has probably been there since birth. Oddly enough, it was thanks to my spine that it was found. A thoracic MRI reported possible pleural fibrosis and recommended a CT. The CT ruled out the pleural fibrosis but found the aneurysm....a mistake.

So now I know to test and see if any kind of movement makes it better or worse before I go running off to the ER. I literally twist myself into a pretzel to see if movement does anything and if it does...it's my back.

However, it does make me nervous that someday I might rupture that aneurysm and I might not know because I'll be so positive it's my back.

We walk a fine line, don't we.

Hugs.............Jenny
Hi everyone,
I am supposed to have surgery this coming Friday for anterior cervical three-level fusion (C4-C7). I created a new thread ( http://www.healthboards.com/boards/showthread.php?t=759843 ) last night, but haven't gotten any responses, so thought maybe I'd ask on here.

I included the general findings of my MRI on my thread, but all my other discs above and below those three appear to be great. I've heard from another neurosurgeon that the more fusions you get the more stress it puts on the remaining ones (leading to more rapid degeneration).

From reading a lot of posts on this thread it appears that many have had multiple surgeries to address different discs. My question would be: when you had your first surgery, did the other discs appear fine? Did they only begin to degenerate after your first surgery, or did the surgeon just choose to not address those other discs when he performed your initial surgery?

Thanks.
Hi, search my name and see my post today to someone else. I've described my experience with 4 level cervical fusion. Best wishes and prayers.
Lest,
My C4-7 fused naturally, anterior and posterior. I had the laminectomy done in 94 and was told they made the space between C3 and C4 larger to keep them from fusing.
Due to this though the other discs in my neck and back are bad. With the neck being so stiff, I use my back to turn. Now need C2to C3 fused to C4 and T1-T3 fused. Lower back has bulging discs now. You are having anterior only so hopefully other discs will be ok.
Good luck,
Saucer
[QUOTE=Saucer;4293184]Lest,
My C4-7 fused naturally, anterior and posterior. I had the laminectomy done in 94 and was told they made the space between C3 and C4 larger to keep them from fusing.
Due to this though the other discs in my neck and back are bad. With the neck being so stiff, I use my back to turn. Now need C2to C3 fused to C4 and T1-T3 fused. Lower back has bulging discs now. You are having anterior only so hopefully other discs will be ok.
Good luck,
Saucer[/QUOTE]

Thank you Saucer. I'm sorry about your other discs going bad. You think that it is due to the fact you had posterior surgery, and their making the space between C3 and C4 larger to keep from fusing?
Lest,
Thanks, no I think they went bad from the laminectomy and the using of my back to turn. Not sure what happened to C2-C3, they were good ( I thought). Doctors now saying have bone spurs growing through ligaments in neck. You should be ok I think because not a total fusion. It's so hard to say since Ive been doing this for 16 years now.
They scare me when they tell me no surgery until "they have to". Doctors say this will change my life forever so not sure what to think. Good luck to you.
I believe the laminectomy screwed things up pretty good, no support to hold up head, havent been able to work since.
Lest
All other levels were normal when I had my first surgery. My first surgery was in '94. I just happened to herniate a disc at a level where there was a huge bone spur. The disc and the bone spur tried to share the same space with the nerve. I had indications before I herniated the disc that there might have been problems, since my hand went numb when I rode my bicycle or when I turned my head a certain way.

Nearly two years after the first surgery I blew out a disc at the level directly above the fusion. This fusion failed. Since thyat time nearly all discs in my spine have begun deterioriating and nearly all vertebras in my spine show arthritis.

I don't think it has anything to do with my surgeries, except that those levels above and below fusions do appear to be deteriorating more quickly.

Best to you!
Hi Lest, how did the surgery go?
Lest,
I feel your pain. I have emergency surgery scheduled for tomorrow on c6-c7 disc that is compressing my cord. I am very nervous about the operation. If anything goes wrong, I could be paralyzed or even worse. I am in Florida and I just learned about a new insurance product, Complication Insurance, which would cover someone if they had a catastrophic outcome from the surgery. I went to buy a policy but they don't sell in Florida yet. If you are worried about the surgery, you should google Complication Insurance and see if they are selling policies in your state.

My disc is so bad that they want to do neurological monitoring during the procedure, which is why they have to wait till tomorrow to do it. I am very scared but just want my functionality back. Good luck to you.
Hello everyone,
First I want to thank everyone who replied to my thread. Thanks for sharing your experiences and I wish all of you well and hope that for those of you still suffering that things improve quickly.

To answer Saucer's Q about my experience, the surgery went well. I had it done on the 30th and it's now the 18th, so I'm going on three weeks recovery.

After the surgery I couldn't keep any food down in the beginning, but that eventually stopped. I didn't really feel nauseated on an ongoing basis, I would just instantly feel so right after eating, vomit, and then the feeling of nausea went away.

I was up and walking within 18 hours of the surgery (while in the hospital).

I've been taking a muscle relaxant and a high dosage of percocet (pain killer) since then along with over the counter laxatives. As such I've experienced little pain, but I've been incredibly tired/lethargic/depressed. Some days I just stay in bed for most of the day.

For this reason, I've been lately cutting back on the pain killers/muscle relaxants and the pain has been minimal -- mostly a mild soreness in my neck and shoulder(s).

I've had no shooting pain in my left arm/shoulder/forearm/hand like I experienced before surgery so that's good. However my index finger is still very numb (though a little better). The thumb and middle finger seem slightly less numb. The surgeon said the index finger (being the worst in numbness) said this would take the longest to fully recover, but he assured me it eventually would.

I'm wearing this Orthofix cervical-stim (bone growth stimulator) device around my neck for four hours per day and will apparently have to do this for the next six months.

So anyways, to sum it all up, the pain is minimal. When I'm off the meds my range of motion has been slightly impacted (like I feel some soreness if I look down at my feet, or if I try and spin my head around to see something behind me).

Mostly, these days I'm just tired all the time and depressed, but the surgery appears to have gone well.

Thanks again everyone. I wish all of you well with what you are experiencing.
[QUOTE=Badback95;4309904]Lest,
I feel your pain. I have emergency surgery scheduled for tomorrow on c6-c7 disc that is compressing my cord. I am very nervous about the operation. If anything goes wrong, I could be paralyzed or even worse. I am in Florida and I just learned about a new insurance product, Complication Insurance, which would cover someone if they had a catastrophic outcome from the surgery. I went to buy a policy but they don't sell in Florida yet. If you are worried about the surgery, you should google Complication Insurance and see if they are selling policies in your state.

My disc is so bad that they want to do neurological monitoring during the procedure, which is why they have to wait till tomorrow to do it. I am very scared but just want my functionality back. Good luck to you.[/QUOTE]
Badback,
I'm sorry to hear about your condition. Hopefully, you've found a very good doctor whom you trust and everything will go well.

My thoughts and prayers go out to you for a successful surgery and quick recovery.
Lest,
All other discs were fine when I had my first surgery on cervical spine in '94 at age 33. There has been a gradual degeneration of nearly all levels of my spine since then. Degeneration does not seem to be related to the initial surgery even though levels above and below do degenerate a littlle more quickly at levels directly above and below a fusion. Its degenerative disc disease (DDD).
Best to you!
Lest,
I'm glad the surgery was a success so far. The meds can be part of your depression, so if it is possible to back down a little bit you should try, but not to the point of constant pain. Please keep us informed.
Take care.
Saucer
Bad,
Spinal cord compression is a very scary thing. In 94 they found it in my neck at 2 levels.
Now they have found it again and are waiting to do the surgery. The surgeons today know alot more than in 94 so try not to freak out. The laminectomy they did has caused my neck to collapse. Good luck with your surgery and let us know how you are doing.
Did you get the fusion? I have C4-C7 fused, but need to get the level above and below fused soon. Did it go okay?
I want to know how your surgery turned out. I am putting off surgery till next summer. I had C4-C7 fused in 2006, but now the one above is protruding forward and the one below is protruding back and pressing on my spinal cord. I have had a few injections with little to no relief. It feels like I have a TENS unit on my neck/back at times, burns alot, pain down my arms and lots of headaches. I am very scared to get this done, but I don't want to keep hurting continuously. I am on meds to help, but I am trying not to take so much. I would love to hear how things turned out.

Kellie
Hi there
I had C6/7 ACDF with spinal compression in March. Symptoms were arm pain and numbness which I still have but at least the spinal compression has gone. As a doctor friend of mine said often things get damaged in trying to put things right. I have seen the surgeon again and once again he said it can take two years for things to repair but he is doing another MRI to check on the fusion. If you have spinal compression I would go ahead - the op was really nothing compared to the on going pain and at least you are not at risk from paralysis. It is swings and roundabouts as we say here in the UK - sometimes you have no choice. I know that having had the op my other discs are having to work harder but I did not want to be a person who avoided everything as I was afraid of some minor accident resulting in paralysis. I am learning to live with the arm pain - I have found it wise to limit keyboarding and to better to sit in the sun. Not that easy to find sun here in the UK.
My surgery is scheduled for 10/19. They will be fusing C2 to C4 anterior and posterior , I'm already fused from C4-C7. Apparently I am fused from T1-T3 again congenitally so they will be inserting rods from C4-T3 to hopefully keep my neck from collapsing more than it is.
I'm very nervous but hoping for pain to be relieved.
[B][/B]I am back!
Not sure what to think after the surgery. Hands, numb, feet numb, seems like feeling is spreading.
They ended up fusing C3-T3 which I thought was good news.
They did no laminectomies at all. Has this happened to anyone else? A little nervous now. :dizzy:
Hi. After my three surgeries that resulted in fusion from C3 - 7, I experienced tingling or pins and needles and numbness and aching. It was explained that this was a result of swelling that pinched the nerves. The worst is over and the recovery can take many months. Try to watch your movements so as to not exacerbate the swelling process. And follow all your docs orders. Sending good thoughts.
Thank you for responding so soon YAK! Of course I'm really scared and appreciate your words so much. I will work on the movement, thanks.
Saucer
Hang in there Saucer. Some days will be better than others. In spite of five surgeries on my neck (additional on lumbar), I have continuous pain and numbness in all extremities. However, the spinal cord is intact and has not been damaged.
Thank you Mr. Back. I'm trying, somedays as you know are so difficult. Thanks for the encouragement.
Does anyone use a hospital bed? I sometimes wonder if I might need one???
I dont, but find it hard to sleep in regular bed with this collar on.
Hey everyone,

Stumbled upon this forum after searching for symptoms of numbness after laminectomy with fusion. My father recently (Oct 19.th) underwent cervical laminectomy and he's currently experiencing numbness in his hands, arms, legs, and back. It seems to get worse as the day progresses but he mentions that at times it feels like he's all swollen. We have not yet had a follow up with the surgeon but from what I've been reading numbness is fairly common with these types of surgeries. I'm wondering if anyone else has experienced these symptoms post surgery and would be willing to share their experience e.g how long did it last, how extensive was the numbness, etc.

Thanks.
illfingaz
My first two surgeries on my neck went well (C5-6 and then C4-5 fusions). Pain and numbness were gone when I woke up. However, years have progressed. Arthritis and degeneration of other discs above and below the fusion has increased and I have had three more surgeries. These surgeries were more to protect the spinal cord and prevent nerve damage and I was under no illusion that it would take away the numbness and pain remains which surgeries can not erase. Since the cervical laminectomy I have felt that the laminectomy itself was more of an exercise for the surgeon since it seems to have done absolutely nothing for relieve pain and left me with permanent damage I did not previously have. Anterior fusions have been more helpful for me. The doctors might be telling your dad that it will go away in 18 months but mine never did....actually got worse.

Best of luck to your father.
illfingaz,
My situation is similar to Mr Backs. Had lami in 94 after so much pain, numbness and weakness in arms and legs. The only way it helped me was to keep me out of a wheelchair. My head fell forward, pain and weakness still there.
I also has surgery on 10/19 and am also numb. Doctor was pretty freaked at 1st followup, sent me to hospital for catscan on neck, and head. MRI of cervical spine. He was ruling out a stroke after the surgery :eek:, found that was not the case. Doesnt know why more numbness now than before surgery but taking it one day at a time.
Good luck to your father, I'm curious to hear what they say after follow up visit. Please keep in touch with us.
Saucer
I had a 6 level laminectomy and fusion 4 years ago and I did have an increase in the symptoms for many months after wards as I worked the muscles and they spasmed and swelled. It did take a full 2 years to fully recover and feel the full effect of the surgery. And 3 years to feel like I had settled into what it would be like to live fused. I need at least 1 rest period a day to rest my neck.

And yes, my doc told me 2 years right up front. I've had both knees replaced too(at the same time) and my ortho told me 2 years with them too so I was okay with it. It is major orthopedic surgery(being done by a neurosurgeon but still has more to do with the bones than anything else). Bones take time to heal as do the muscles and nerves cut in surgery. It can take 8-9 months for a single muscle cell to grow to full length and 8-10 months for nerves to heal the tiny amount it takes for them to re-connect. And in a lami, they go in from the back and cut those back muscles....it takes time.

He'll feel better with time.....lots of time. I was partially paralyzed after surgery and even that went away(most of it) with time. This is not an appendectomy. It is equivalent to having joints replaced.

Good luck and let him rest!

Jenny
I got a spinal fusion C3-C4 in 2005 and a Laminectomy C5-C6-C7 this year (2010). I must say I feel way better than before the interventions. Although I have neural pain & coordination issues, Life is getting better. IT START BETWEEN THE EARS wether you want to get better or not. I wasn't supposed to ever walk again but with good therapists and the faith in my self-healing capabilities, I made it on 2 feet. Even with an abnormal Gait, I do not regret anything. Hang on man. It's all good
[QUOTE=gooseberry;4290773]Hi again Mr Back,

Yes its a large fusion - 7 vertabrae and my spinal ortheopeadic surgeon did all the laminectomies from the front and then the fusions, including the thoracic area from the back. I never would have thought that someone putting sixteen screws in my neck would make me feel better but it did thankfully, even though it was a long haul back.

I think part of the problem of being fused is that it doesnt feel natural to turn your head, you automatically want to turn your whole body because your neck is rigid, but my surgeon says its very important to keep moving your neck as much as possible. Be deliberate about it - go the full range side to side, and up and down whenever you can to keep the stiffness at bay. In terms of trying to not wear out your disks, I have been told until I'm blue in the face "always bend at the knees and try to keep your spine as neutral as possible". Apparently bending from the knees takes the pressure off your spine oh, and don't sit down too much.

Its a lot to take in and keep on top of, but I am happy to do it. I too spend a lot of time on the treadmill but also try and enjoy the outdoor hills when I'm up for it.

All the best to you, GB[/QUOTE]
My husband, 60, has spinal cord compression, stenosis, kyphosis (sp), and degenerative discs. He has been told he needs a C2 through T2 fusion. He is currently not in any pain and while he can use his right hand, he cannot raise his right arm and there is concern whatever is going on is moving to his left arm. We are looking for alternatives to a C2-C3 fusion and if you (or anyone else) has had no pain and still needs a C2 through T2 fusion and WHAT HE CAN EXPECT from such surgery. He has been told he will be worse off after the surgery than before but it should stop the disease progression and stop potential paralysis. Our concern is that the "cure" (the C2 through T2 fusion) is worse than the disease. Are we being naive?
Please get at least one other opinion from a surgeon. This is major surgery and should be taken seriously. Unfortunately, he must not only consider the pain and risks of the surgery but the possibility of additional loss of functioning or paralysis if he does not do the surgery. Again, please get two other opinions. Many major health insurance plans pay 100% for additional opinions when surgery is being considered! Blessings.
N12 WROTE: My husband, 60, has spinal cord compression, stenosis, kyphosis (sp), and degenerative discs. He has been told he needs a C2 through T2 fusion. He is currently not in any pain and while he can use his right hand, he cannot raise his right arm and there is concern whatever is going on is moving to his left arm. We are looking for alternatives to a C2-C3 fusion and if you (or anyone else) has had no pain and still needs a C2 through T2 fusion and WHAT HE CAN EXPECT from such surgery. He has been told he will be worse off after the surgery than before but it should stop the disease progression and stop potential paralysis. Our concern is that the "cure" (the C2 through T2 fusion) is worse than the disease. Are we being naive?

I am fused from C2-T3. The fusion of C4-C7 and T1-T3 occured naturally (not by surgery). My last surgery was in 10/10 and I am still recovering. I can walk, move my arms, though I am still numb throughout my body. Doctor not too concerned yet since I am still in the brace.
I have very limited range of motion in my neck, I am hopng this will be better when brace comes off.
I am 51 yrs old and have been dealing with this since around 19.
I'm sorry to hear of your husbands plight but I am just so happy I can walk and talk and have no paralysis.
PS I have kyphosis too, the doctor pulled my head up as far as he could, familt says its higher than its been in 16 years.
Good Luck,
Saucer
I just received my denial letter from SSD. Last hope is hearing with a judge. This is a very discouraging process.
Recovering from surgery. I hope to get the brace off in February. Not sure about all of the numbness. I do know the surgery was necessary if I wanted to stay out of a wheelchair so will look for the good in this.
I hope all of you are well.

Saucer
Hi, i had 3 c-spine lamin/ fusions 6 months ago. My spinal cord was compromised and im still recuperating. My personal opinion...i would definetly see a neurosurgeon if i were you. The c -spine is such a delicate area that theres not much room for error . As long as your surgery isnt a matter of life or death , i would take a couple extra weeks and explore all your possible options. Ps stay away from chiropractors after the surgery, my dr just tore 3 discs in my l-spine!! Here we go again!! Good luck!
I would suggest from past experience that you do not go to an Orthopedic for anything that has to do with your Spine. I wish you well, and hope you have a speedy recovery.
Lic, You had a 3 level lami? Have you notice your head leaning forward?
I found this out in 94 when they did the 3 level, my neck was weakened so much I could not hold head up.
yes you should get that 3rd opinion. I had 4 level fusion c4-c5-c6 and c7 in april and still not fully recovered. I saw 3 doctors and went with the neosurgeon. good luck
[QUOTE=cotton1;4175755]Hi,
I am scheduled to have a 5 level cervical laminectomy and fusion c3-4 to T1 at the end of this month. I keep looking on line but cannot find others who have had more than 3 levels fused at once. The PA at the doctors office said it is rare.
I have myelopathy at 2 levels (3-4 and 4-5) and spondelytis throughout. I have a bulging disc at C2-3 and C6-7 and C7-T1. My neck is straight instead of the normal curve. I have no pain really, and pretty good range of motion in my neck. But numbness in my hands, weakness in wrists, tingling in arms.

I have been to two orthopedic spine surgeons and both say the same thing.
I'm scared, of course, and wondering if anyone has experience with something like this, with so many levels. I'm wondering if I should still try for a 3rd opinion, perhaps from a nuerosurgeon, although that might mean posponing this surgery. The symptoms are increasing, but very slowly. So, has anyone else been through this at so many levels? Thanks in advance for any advice you can offer.[/QUOTE]
If you have not yet had any surgery I saw your post and thought I would reply.
I have had a 5 level cervical fusion. It was performed by a Neurosurgeon. It went well and I feel a lot better. It is a hard surgery as far as healing. But I think it was worth it.
[QUOTE=Jenmilady;4676002]If you have not yet had any surgery I saw your post and thought I would reply.
I have had a 5 level cervical fusion. It was performed by a Neurosurgeon. It went well and I feel a lot better. It is a hard surgery as far as healing. But I think it was worth it.[/QUOTE]
My husband is going to have it in 2 weeks. We realize everyone is different but about how long was the recovery and what might he expect. (Be brutally honest please--he does not even go on blogs so I will "cushion" anything you tell me--as his caretaker I want to know as much about what MIGHT happen as possible. Thank you soooo much!
N12....is it going to be from the front or the back and which 5 levels? They are VERY different.

Jenny(posterior fusion, C3 to T1)
[QUOTE=jennybyc;4676231]N12....is it going to be from the front or the back and which 5 levels? They are VERY different.

Jenny(posterior fusion, C3 to T1)[/QUOTE]

2 surgeries a few days apart...first surgery is the anterior (front) one followed by the posterior (back) one...he is having C2 through T2 or seven levels...severe stenosis, degenerative disc disease & kyphosis...I just want to be prepared (if that's possible)...thanks for responding Jenny!
Sounds like to give him some neck movement they are doing part of it from the front and the rest from the back....am I correct? I've seen that done in many cases...they give a break in there so you still have some movement. Is that what is being done or will it be what they call a 360* degree fusion where they fuse from the front and the back, the entire thing?

Are they actually fusing C2 as part of the fusion as that takes away at least 75% of the movement of the neck. Usually they try to only go to C3.

I am C3 to T1(was supposed to be T2 but my doc gave me a break and left it at T1). But mine is all posterior. 2 rods and 10 screws....not enough bone at C6 to even put in screws. Then I was packed with an experimental bone putty rather than cages or bone grafts or anything like that.

But my case is a little different. I'd already had surgery for stenosis and herniated disks. It's a new surgery called a laminoplasty and they re-built the back of the vertebrae to double the size of the spinal canal. Unfortunately, 3 months later the ligaments ripped, causing 5 vertebrae to dislocate and breaking 3 of the 4 bone grafts that had been put in. One of the graft bones then fell into the spinal canal, irreparably damaging the nerves at C6. So he had to do the fusion to put all the vertebrae back into place. I literally was "hanging my head down" and couldn't bring it up.

What I can tell you is that the posterior surgery is very painful. From the front, the don't cut much but in the back, they have to cut the back muscles to access the spine. They take a long time to heal and very painful...lots of muscle spasms. So expect pain and spasms for quite a while....possibly months.

He will be in a hard neck collar for weeks and won't be able to drive....against the law to drive in a hard collar as you can't see from side to side. Expect him to be in a hard collar for up to 6-8 weeks then a soft collar for another 6-8 weeks.

As a result of the front surgery, he'll have trouble speaking and swallowing for a while.

The pain meds can make him very constipated so make sure to have OTC meds around for constipation. Straining can hurt a lot and he wants to avoid that.

This kind of surgery is as big as a knee replacement(to the body) and takes a good 3 months to recover enough to go back to work. It also takes a good 2 years to fully recover and know what will work and what won't and what stays numb and what will always hurt. Spine surgery is done to stop the progression of damage but may not reverse it.

We have another poster who has just had a posterior fusion from C3 to C7....check out his posts.

I know you have more questions so please ask away. Depending on whether or not they include C3, he will be forever changed with what he can do. I start at C3 and have lost 50% of the movement of my head. You slowly learn to move the entire torso to look around. If they include C2, he will lose far more and may never be able to drive again(check state laws). He'll have very little head movement. The 2 main vertebrae that allow the head to turn are C1-2. C1 looks like a donut and even has the hole in the middle. C2 has a piece that sticks up through the middle and together, they fit together and allow all that rotation. They fuse C2 and it takes away a lot of that movement. I hope for his sake, it stops at C3.

Let me know how much they are doing from the front and how much from the back or if it's the entire thing from both directions. Then I can let you know about scars and their care. Easier for men to have their heads shaved than us women.

gentle hugs...............Jenny
[QUOTE=N12;4676237]2 surgeries a few days apart...first surgery is the anterior (front) one followed by the posterior (back) one...he is having C2 through T2 or seven levels...severe stenosis, degenerative disc disease & kyphosis...I just want to be prepared (if that's possible)...thanks for responding Jenny![/QUOTE]

Hi N12,
I am fused from C2-T3. Had a laminectomy in 1994 on C-3 and C4 due to severe stenosis. At this time I was fused C4-C7 congenitally already. No fusion done with lami. After this surgery I was never able to lift my head again, at least a 20% head down lean. Apparently the surgery jeopadized the stability of my cervical spine.
I recently had to have a new surgery to fuse C2-C4 anterior since only had a bony bar fusing them posterior. Also had rods inserted posterior from C2-C5 to stabilize my CSpine as head fell so much I was having problems breathing.
Doctor was going to rod it through T3 but said it was solid when he was in there. Operation was in 10/10 and I am still in hard collar. Hope to get off next week. Still has so much numbness, unsteady on feet and new crazy thing happening, burning like fire in mouth. Some days mouth is numb on one side, other days on fire both sides.
On several meds now, more due to back pain than neck pain as all of you know, Im sure being fused at so many levels, my back is a mess. I hope to be able to drive again someday, havent tried due to collar but very nervous as so stiff in all directions. Bothers me I cannot see my body anymore (except in mirror) but hope to get use to it.
I wish your husband luck.
Saucer
Saucer....I'm so sorry they had to include C2. I have RA and it "eats" C1 and 2 and have the symptoms of it hitting them and it scares me. I've lost enough with C3 to T1 and don't need to lose anymore.

So sorry for the terrible time you are having recovering but I know it all too well. Took me 3 years to recover from the second surgery.

Please stay in touch and let me know how you are doing, will you?

gentle hugs........Jenny
[QUOTE=jennybyc;4676503]Saucer....I'm so sorry they had to include C2. I have RA and it "eats" C1 and 2 and have the symptoms of it hitting them and it scares me. I've lost enough with C3 to T1 and don't need to lose anymore.

So sorry for the terrible time you are having recovering but I know it all too well. Took me 3 years to recover from the second surgery.

Please stay in touch and let me know how you are doing, will you?

gentle hugs........Jenny[/QUOTE]

Thank you Jenny, will do. As you know some days are good and some are pretty tough, I've been thinking about your post and wanted to send quick note of thanks. Will write more soon.
Saucer
I am out of collar now after almost 4 months. Feels pretty stiff, and notice my ears hurt in the morning. Realized the right ear is still numb and when I lay on that side, it flips the ear into an uncomfortable position. Oh well need to pay attention to that. I drove yesterday, backed out of driveway only and then drove around neighborhood. Didnt try parking and all that fun stuff yet.
Doctor says takes a year to fully fuse so need to be careful, I'm dying to go back to exercising again, I miss it so much. Hope all are well.
I'm working on my new way of living.
Saucer
N12,
I was wondering how the surgery went. How is your husband doing?
Does anyone here have any digestive problems related to their spine issues? I spent a week in the hospital in January for ileus bowel. Doctor said he believed it was related to meds and not spine issues. However, he wasn't a spine doctor. Still seem to have discomfort in bowels as neck gets worse. Have an appointment scheduled with spine surgeon.
If you are taking any pain meds for your spine problems, they can stop you up badly to the point of stopping everything. I stopped urinating due to MS Contin. Muscles relaxers can do it too and most of us are on both.

But spine issues, if they are going to affect the bowels, does so by making it so you can go or can't control it....sphincter control.

It this neck or back?

Jenny
I have problems at both ends of the spine, and in between. More serious now is cervical condition.

When I had problems in January it was diagnosed as ileus bowel. I couldn't control myself and then I was blocked.. Again, they said it was the meds. However, I have to wonder if its just that. I was pretty good after getting out of the hospital but my stomach is all upset again....gurgling stomach and lots of gas. Its not the food either and I got off all meds in spite of pain. :confused:
I'd see a gastro doc about it and not assume it's spine. The digestive system is part of the autonomic nervous system as it runs "automatically" and the nerves don't come through the spine. Nerves to the muscles come through the spine and are a different system altogether. That's why it affects the sphincter muscles.

No reason why we can't have 2 things going wrong at the same time and it can be deadly to not have this one checked out as another problem. I spent the weekend in the hospital with gastro-enteritis and am still really sick but home so I know your distress with this. Went from noisy and constant diarrhea to no sound now and hoping it works again. 3 1/2 hours of vomiting and diarrhea and I passed out cold from dehydration....I know. Now my neck aches from hitting the floor in a bad position(and hip and knee and wrist).

See a gastro doc....please.

hugs.............Jenny
[QUOTE=MrBack;4696208]Does anyone here have any digestive problems related to their spine issues? I spent a week in the hospital in January for ileus bowel. Doctor said he believed it was related to meds and not spine issues. However, he wasn't a spine doctor. Still seem to have discomfort in bowels as neck gets worse. Have an appointment scheduled with spine surgeon.[/QUOTE]

Hi Mr. Back,
Yes I also have bowel problems. They dont know whether it is from having hypothyroidism or the meds from spinal surgeries. The doctor has me on a liquid called laculose. YUCK! too sweet, but does help. I also put ground flaxseed in my oatmeal everyday to help.
I am having problems with thrush in my mouth, possible due to bowel problems, immune problems or stress caused by surgery.
I recently started eating yogut and taking accidopholus pills.
Good luck.
Saucer
[QUOTE=cotton1;4175755]Hi,
I am scheduled to have a 5 level cervical laminectomy and fusion c3-4 to T1 at the end of this month. I keep looking on line but cannot find others who have had more than 3 levels fused at once. The PA at the doctors office said it is rare.
I have myelopathy at 2 levels (3-4 and 4-5) and spondelytis throughout. I have a bulging disc at C2-3 and C6-7 and C7-T1. My neck is straight instead of the normal curve. I have no pain really, and pretty good range of motion in my neck. But numbness in my hands, weakness in wrists, tingling in arms.

I have been to two orthopedic spine surgeons and both say the same thing.
I'm scared, of course, and wondering if anyone has experience with something like this, with so many levels. I'm wondering if I should still try for a 3rd opinion, perhaps from a nuerosurgeon, although that might mean posponing this surgery. The symptoms are increasing, but very slowly. So, has anyone else been through this at so many levels? Thanks in advance for any advice you can offer.[/QUOTE]

Hi, please go to a neurosurgeon! My husband is fused at C-3 through C-7. He had spinal cord compression due to arthritis. Within 1 week he went from walking to a wheel chair. The doctor stated that had we left this untreated that within 10 days to 2 weeks his cord would have been severed. He has alot of problems with his back, he had a 5 level lumbar laminectomy in 2005, the cervical surgery was in 2004, in 2007 he was losing function in his left leg and they went in and freed a nerve root. In January 2008 he fell forward and had a Jefferson fracture at C-1. Every disk in his back has degenerated, he has lost between 5 to 6 inches in height. He was 62 on the 4th of March. He is on pain management and has been since 2002. WITHOUT A DOUBT, I would see a neurosurgeon before you let anyone cut on you, you could very easily end up in a wheelchair for the rest of your life.
[B][/B]
Hi All. I was wondering if any of you noticed after your surgery that you had no sense of taste and an over sense of smell. I also notice my body jerks.
I will be resting and my arm or leg just jerks. I hope all are well, still trying to heal and wondering if this is what my life will be like.
Saucer
Hi Saucer....wondered how you were doing?

I also have the body jerks but the worst is my left hand. I can be typing and one finger will suddenly jerk and I have a whole like of D's.

Haven't had an problems with sense of taste or smell though. Have you asked your doc about it or seen a neurologist to find out why? Could be totally unrelated. Taste and smell come through the cranial nerves that come out of the brain and at the bottom and then go to the face and head. Perhaps you have some kind of pressure on those nerves....fluid backing up???? I'd check it out.

How are you doing otherwise?

gentle hugs..........Jenny
[QUOTE=jennybyc;4715262]Hi Saucer....wondered how you were doing?

I also have the body jerks but the worst is my left hand. I can be typing and one finger will suddenly jerk and I have a whole like of D's.

Haven't had an problems with sense of taste or smell though. Have you asked your doc about it or seen a neurologist to find out why? Could be totally unrelated. Taste and smell come through the cranial nerves that come out of the brain and at the bottom and then go to the face and head. Perhaps you have some kind of pressure on those nerves....fluid backing up???? I'd check it out.

How are you doing otherwise?

gentle hugs..........Jenny[/QUOTE]

Thanks Jenny,
I talked with neuro about it he doesnt seem concerned, but then again hes not concerned about the numbness all over my body either...yet anyway.
So I guess this jerking thing is possibly a result of the surgery and may never go away? These doctors keep telling me I need time to heal. I guess Im inpatient. Thanks for the reply again. Hope you are well.

Hugs,
Saucer
Well....I'm 4 years post-op so I'm done healing....it's not from lack of healing! I guess I'm just a jerk:D

I'm seeing a new doc next week who is specialist on rehab from ortho and spine injuries...a physiatrist. Gave up on neurologists. I need someone who understands what spine injuries and spine surgery do to the muscles and nerves. I'll let you know what she says about the jerking.

Surgeons of all kinds like to cut and not look at the long term problems. So I'm hoping this doc will very into the long term problems....she works in a rehab hospital....she should. Hope she'll give me a good referral to a new ortho too(knees need work). Those will need rehab too. I'm really hoping this will be a change for the better from the more conventional treatment I've been getting.

We'll see:dizzy:
Well....I'm 4 years post-op so I'm done healing....it's not from lack of healing! I guess I'm just a jerk:D

I'm seeing a new doc next week who is specialist on rehab from ortho and spine injuries...a physiatrist. Gave up on neurologists. I need someone who understands what spine injuries and spine surgery do to the muscles and nerves. I'll let you know what she says about the jerking.

Surgeons of all kinds like to cut and not look at the long term problems. So I'm hoping this doc will very into the long term problems....she works in a rehab hospital....she should. Hope she'll give me a good referral to a new ortho too(knees need work). Those will need rehab too. I'm really hoping this will be a change for the better from the more conventional treatment I've been getting.

We'll see:dizzy:

Stay in touch,

gentle hugs.................Jenny

PS....sorry about posting twice...once again fingers did what they want!
[QUOTE=cotton1;4175755]Hi,
I am scheduled to have a 5 level cervical laminectomy and fusion c3-4 to T1 at the end of this month. I keep looking on line but cannot find others who have had more than 3 levels fused at once. The PA at the doctors office said it is rare.
I have myelopathy at 2 levels (3-4 and 4-5) and spondelytis throughout. I have a bulging disc at C2-3 and C6-7 and C7-T1. My neck is straight instead of the normal curve. I have no pain really, and pretty good range of motion in my neck. But numbness in my hands, weakness in wrists, tingling in arms.

I have been to two orthopedic spine surgeons and both say the same thing.
I'm scared, of course, and wondering if anyone has experience with something like this, with so many levels. I'm wondering if I should still try for a 3rd opinion, perhaps from a nuerosurgeon, although that might mean posponing this surgery. The symptoms are increasing, but very slowly. So, has anyone else been through this at so many levels? Thanks in advance for any advice you can offer.[/QUOTE]


In 2006 I had a C4-C7 anterior spinal fusion. As of know, C3-C4 has pushed forward and C7-T1 is protruding posteriorly and pushing on my spinal cord and C8 nerve:mad:. I constantly have migraines, radicular arm/had pain and I drop things. My surgeon is telling me that these 2 need to be fused also. I am seeing another specialist next week to confirm or suggest options.
I had a four level last fall (C3-7). It was overwhelming at first, especially when my surgeon advised that a four level ACDF is uncommon. He actually had performed 20 in two-years which seemed a lot to me and boosted my confidence in moving ahead. I understood the gravity of the issue and pressed forward. I didn't wish to have anything to do with paralysis.

I had surgery on a Wednesday and was home in less than 24 hours. The first 2-3 weeks were difficult, mainly sleeping and getting comfortable. There wasn't a great deal of surgery-site pain nor really that much general pain. I felt instant resolve with many of this issues I had been experiencing.

***There is a list on the Spinal Cord Disorders Healthboard that is extemely helpful. Don't under estimate the power of the bendy straw! :)***

I choose to have surgery quickly, as my symptoms were steadily progressing. This past Thursday was my four month check up and overall the surgery achieved objective. The only area of concern my NS has is my great range of motion considering I have so many levels fused. He's taking a closer look to ensure fusion.

Once I came out of the rigid cervical collar after eight weeks, my shoulders hurt quit a a lot, mainly because the collar had been supporting my neck, It generally takes the same amount of time for this to resolve as you wore the collar. I participated in PT to assist in regaining that strength, as well as in my arms and lower back.

Today, I feel great. Tons and tons better than I felt pre-surgery. I still have a bit of "wonky" nerve feelings, but understand it may take up to two years to resolve. Other than that, I'm doing very well and I'm pleased.

Tap in to the Healthboard post-surgery. I found valuable support and information. It helped me to not feel alone and empowered my with information and support.

Godspeed and please keep us posted.

Mellie
[QUOTE=kcarroll;4717633]In 2006 I had a C4-C7 anterior spinal fusion. As of know, C3-C4 has pushed forward and C7-T1 is protruding posteriorly and pushing on my spinal cord and C8 nerve:mad:. I constantly have migraines, radicular arm/had pain and I drop things. My surgeon is telling me that these 2 need to be fused also. I am seeing another specialist next week to confirm or suggest options.[/QUOTE]

K,
I'm not a doctor but Ive been through all of what you speak of. The dropping things was they last straw for my neuro. Surgery is a tough thing, especially as we age but its better than being in a wheelchair I can imagine.
There's actually an official name for that problem of dropping things...called the "Clumsy Hand syndrome" and that is where you have something to stop it or you risk losing fine motor control of your hands and a lot of dishes.

I'm C3 to T1 from the back and have never looked back. It gets better with each passing year and I am 4 years post-op. I may be looking at more surgery down the road as I have bone spurs growing inside the fusion and he actually expects to end up adding T2 and even T3 eventually as they weren't good to start with. I've met people fused from C3 to T7 and they were so happy to be out of pain and be walking and doing things they didn't care how much they lost. They choose to look at what they gained.

It beats paralysis.

hugs to all..............Jenny
Hey Saucer....we have another scheduled for a C2 to C5 fusion and is wondering about how much neck movement she'll have...doc said she could still drive....I thought with C2 you are pretty limited but I know you have tried. Can you speak to her? Name is Jude and has a post on a posterior C2-5 fusion.(I think it's C5 but now that I think about, it could be longer...memory not working today.....but it is C2 down).

thanks and hugs...............Jenny
I just wrote to her, thanks Jenny, you are a very helpful person.
TO ANYONE:

When I wake up in the morning I feel so weak. I cant even push the covers off of me with my hands. I have to kick them off with my legs. I also have so much pain in my shoulders, chest and collar bone areas. I thought at first this was probably due to wearing the collar for 4 months but Ive been out for 1 1/2 months now but still have so much pain. I cannot even lift my arms above my head anymore (since the surgery). I was wondering if anyone else has experienced any of these things.
Thanks,
Saucer
I haven't logged in here for a while. I had a cervical laminectomy C4-c7 in Sept 2005. NO FUSION. I had few complications and recover was slow but steady. The biggest "surprise" after surgery was that since they cut in to the big muscles in the back it took about two weeks until I could shower and dress myself compfortably. I was in the hosptial for two days post-op but could have gone home after one (I just felt a bit shakey and decided with a one hour drive home it was best to stay).

It turned out I had other issues than the stenosis but as doctors have said when they read my MRI, the surgery did what it was supposed to do. I had to decide between laminectomy and ACDF and I don't regret going with the laminectomy one bit.

I hope your surgery goes well.
[QUOTE=sunshine221;4738702]I haven't logged in here for a while. I had a cervical laminectomy C4-c7 in Sept 2005. NO FUSION. I had few complications and recover was slow but steady. The biggest "surprise" after surgery was that since they cut in to the big muscles in the back it took about two weeks until I could shower and dress myself compfortably. I was in the hosptial for two days post-op but could have gone home after one (I just felt a bit shakey and decided with a one hour drive home it was best to stay).

It turned out I had other issues than the stenosis but as doctors have said when they read my MRI, the surgery did what it was supposed to do. I had to decide between laminectomy and ACDF and I don't regret going with the laminectomy one bit.

I hope your surgery goes well.[/QUOTE]

Sunshine,
I was wondering after your laminectomy surgery were you able to hold your head up again? I was not able to.
I had no problem holding my head up but then I didn't have C2 or C3 worked on just C4 to C7
Hi Saucer....been off for a few days and missed your post.

I got a lot of PT on my shoulders after surgery as I couldn't raise my arms either. They just did passive stretching to keep the muscles and joints from freezing on me. It wasn't until about 9 months post-op that I started to get strength back, enough to lift them up over my head.

And the pain started to go down about then too. Once those muscles started to work, they stopped aching. But to be very honest, it took a good couple of years to really feel like I was recovering. It just takes so long, you think it will never happen.

I was lucky in that I have rheumatoid arthritis and I was put on a biologic drug called Enbrel. Enbrel is now in clinical trials for pain relief with spinal problems.....both post-operative and chronic pain. Shut a lot of my pain down at 6 months post-op. But I had to stop it after 3 months as it didn't help the RA and that was when my shoulders started to work anyhow and it helped bring the pain way down.

I found the one thing that helped more than anything else was doing electric stimulation in PT. They put electrodes on the muscles of the neck and upper back and this stimulates them to contract over and over until they get tired. Since these muscles don't work anymore due to the fusion, they hurt from lack of movement. This stopped the pain. Almost bought one of the machines for home use!

So ask about Pt T and see if they can do some electric stim. of those neck and shoulder/upper back muscles and see if that helps. Got me through for sure.

Hugs..........Jenny
[QUOTE=sunshine221;4739410]I had no problem holding my head up but then I didn't have C2 or C3 worked on just C4 to C7[/QUOTE]

Hi Sunshine,
Didnt go back and read all the previous posts so I'll just ask. Did they do any fusion with your laminectomy, any rods or (hate to say only because it is such a big deal) but was the laminectomy on 4-7 the only thing they did?
Hi Jenny,
Havent had PT yet. Dr wants to wait until the fusion is complete. I have started back excerising again as my back is killing me. Cant just sit or lay down anymore. My arms are so weak and as you said I cant lift them over my head, and also notice so much pain in collar bone. Im hoping the exercise will help that. It a curves program not all of it, just the best I can do.
Thanks for your reply.
Hugs,
Saucer.
[QUOTE=Saucer;4740120]Hi Jenny,
Havent had PT yet. Dr wants to wait until the fusion is complete. I have started back excerising again as my back is killing me. Cant just sit or lay down anymore. My arms are so weak and as you said I cant lift them over my head, and also notice so much pain in collar bone. Im hoping the exercise will help that. It a curves program not all of it, just the best I can do.
Thanks for your reply.
Hugs,
Saucer.[/QUOTE]

As I'm 6 weeks post op I'm interested in what type of exercise you're doing. I'm walking and just started to do 5 pound curls. My left arm is so weak! My NS told me NOT to do any PT until I see him at 3 months post op.

Dave
Calgary, Alberta
Let me clarify something.....the PT I had early on after my fusion was passive moving of my shoulders to keep from developing "frozen shoulders". I didn't get any neck PT until 3 months post-op. But if I had waited for 3 months to get my shoulders moving, I would have at least 1 frozen shoulder as I had chronic tendinitis in both shoulders.

I did nothing...the PT did all the moving and kept my range of motion as full as possible until I could move them myself. I had almost no movement in my left arm and could barely move my left shoulder at all(paralysis but not complete paralysis). The doc figured I'd get some motion back and didn't want that shoulder to freeze up in the meantime.

And it did start to move at about 9 months post-op. I now have full motion and enough strength to pick up my 39 pound granddaughter but not to hold her for more than a few seconds. Still working on that.

Jenny
Jenny,

Wishing you continued success in your road to recovery! Have a fantastic day and keep smiling :-)

Dave
[QUOTE=kelownabc;4740914]As I'm 6 weeks post op I'm interested in what type of exercise you're doing. I'm walking and just started to do 5 pound curls. My left arm is so weak! My NS told me NOT to do any PT until I see him at 3 months post op.

Dave
Calgary, Alberta[/QUOTE]

Hi Dave,
Im 6 months post op. I'm in a CURVES program its for women. We do things like leg raises, ab/back machine. I cannot do curls as I cant lift my arms.
It mostly resistance training and cardio. Walking of course as the dr says no running.
Saucer.
[QUOTE=jennybyc;4740927]Let me clarify something.....the PT I had early on after my fusion was passive moving of my shoulders to keep from developing "frozen shoulders". I didn't get any neck PT until 3 months post-op. But if I had waited for 3 months to get my shoulders moving, I would have at least 1 frozen shoulder as I had chronic tendinitis in both shoulders.

I did nothing...the PT did all the moving and kept my range of motion as full as possible until I could move them myself. I had almost no movement in my left arm and could barely move my left shoulder at all(paralysis but not complete paralysis). The doc figured I'd get some motion back and didn't want that shoulder to freeze up in the meantime.

And it did start to move at about 9 months post-op. I now have full motion and enough strength to pick up my 39 pound granddaughter but not to hold her for more than a few seconds. Still working on that.

Jenny[/QUOTE]

Wow Jenny, you can lift 39 pounds. Good for you. Doctor doesnt want me lifting anything over 10 lbs yet so. I'm being careful I just cannot stand the pain from back and neck, driving me nuts.
Hugs to you.
Saucer
[QUOTE=Saucer;4742097]Wow Jenny, you can lift 39 pounds. Good for you. Doctor doesnt want me lifting anything over 10 lbs yet so. I'm being careful I just cannot stand the pain from back and neck, driving me nuts.
Hugs to you.
Saucer[/QUOTE]

I'm very careful of what I do at this point as my NS re-emphasised the importance of not over doing it!! We have a chocolate lab puppy who I can't even pick up as she weighs 19 pounds!! I see him at the 3 month point and I will have many questions pertaining to exercise!!

The back of my neck is the most painful and swallowing continues to be a challenge. I'm really hoping once I pass the 2 month point this will improve. I'm 7 weeks post op on Wednesday and improving everyday! Sleeping is also ALOT better for me!

Dave
Calgary, Alberta
[QUOTE=kelownabc;4742430]I'm very careful of what I do at this point as my NS re-emphasised the importance of not over doing it!! We have a chocolate lab puppy who I can't even pick up as she weighs 19 pounds!! I see him at the 3 month point and I will have many questions pertaining to exercise!!

The back of my neck is the most painful and swallowing continues to be a challenge. I'm really hoping once I pass the 2 month point this will improve. I'm 7 weeks post op on Wednesday and improving everyday! Sleeping is also ALOT better for me!

Dave
Calgary, Alberta[/QUOTE]

Hi Dave,

I never had a swallowing problem but then they only fused C3-C4 anterior.
All the other was done posterior. I noticed on another board you are talking about bad pain in your shoulders, are you still having this? I do 6 months later. I hate to run back to doctor for every ache and pain but going to if this doesnt stop.
I wish you luck in your recovery.
Saucer.
hi Cotton,
Penny suggested I write to you, but she said the name is Saucer. In any event, two years ago I had cervical fusion C2-T2, with the neurosurgeon going in from the back. It was a crap shoot, of course. If I didn't have the surgery, I risked all sorts of problems, including paralysis. The surgery also posed threats, but by and large, the surgery was successful. By three months post-surgery I was doing very well.
I must admit, I've been having some upper-back pain recently and must see what that's all about. But, as you know, you can only do what you think is best at the time and can't foresee (or control) the future.
I hope you're doing well and would like to help, if I can.
Andrea
Hi Saucer,
Jenny suggested I write to you, as I had C2-T-2 fusion (from the back) two years ago.
By and large things have gone well. My neurosurgeon put no restrictions on my activity. I was bopping along pretty well. Lately, my upper back and shoulders have started aching, and I guess we both know what that probably means. Who knows, it may be nothing. I'll find out. If I can be helpful to you in any way, please let me know.
Hugs,
Andrea
Hi Andrea....it's Jenny(not Penny but close enough). Cotton started this thread a long time ago and Saucer is a recent member but thought you 2 might be able to help each other. I'm only 6 vertebrae fused and you are 8 so the longer ones win! Saucer....you are 7-8 aren't you??????

Andrea.....how much can you move your head? Saucer is C2 also(aren't you...I've been talking to so many people later I can't keep everyone straight). I am C3 to T1 and I know T2 is in trouble and I think my RA ha gotten into C1 and 2. The pain of Ra is different and I can feel that burn of Ra in there. Different from the ache of OA.

That upper back.shoulder pain is usually from the muscles that no longer move and they ache from lack of movement. I did electric stimulation of these muscles at PT and that makes them move. They contract them over and over until they tire out and it relieves the pain. Eventually, they get used to the new way your body works.

Saucer...I can pick up my granddaughter now at 4 years post-op but when she was born(when I was 8 months post-op) I could barely hold her tiny 6 pound body. It's taken lots of time and lots of work. Looking forward to the new grandson this summer.

And I think I'm going back into some heavy duty PT. Have appointment #2 with physiatrist this Tuesday and she said I was overdue to get some more PT. What I need is whole body PT as I have bad joints all over the place, including knees that I think need revisions(replaced and implants wearing out). Balance is crazy, right side is weaker than left and shouldn't be, staggering like a drunk again and I hope it's not from the cord compression that is back. It will be interesting to see what she thinks I need to do. I'd really like to work in a pool as warm water feels so good on the joints.

So how is everyone doing with ROM????? Andrea....did you find your ROM got better as time went on and how much can you move your head and neck now? Saucer...how is your ROM? Dave? I'm actually concerned because I can suddenly go much farther than I could before and wonder if I've gotten anything loose? Read Feelbad's post above and see what has happened to her fusion(screws went form horizontal to vertical). Aaarrgghhh!

Jenny
Jenny, Sorry for the Penny. OA must be an awful burden. I'm so sorry to hear that.
My ROM is fine. No problems at all. I lost about 20% ability to turn my head side-to-side, but no problems with shoulders, except that they ache. (Also have peripheral neuropathy from Statin use, which is slowly subsiding since I went off the Statin.)
My main complaint is that I can't walk more than a block or so without my upper back and shoulders aching badly. And that's totally new. Any ideas what that's about? I can ride a stationary bike for an hour but can't walk. Perhaps the pounding, though I don't think I pound.
I do pick up grandchildren without difficulty, but, oddly, can't hold a newspaper for any length of time without aching. Life is odd.
Thanks and hugs,
Andrea
The reason I'm asking is that fusing C2 is supposed to cause you to lose 75% of the movement of your head. I'm fused to C3 and lost 50% so I'm always curious as to what people had done and what their range of motion is.

Are you fused just with hardware and not bone? I'm not familiar with that technique but I understand that many have just hardware and not the bone part of the fusion and it gives you much more movement.

I know Saucer has very little head motion and we had someone else here who is fused to C2 and has very little motion of her head so I'm trying to figure out how you can have C2 fused and still lose only about 20%. Someone else here is having a C2-C5 fusion and says she' won't have much loss of motion of her head.

Can you help me?????? I'm sooooo confused!

Jen
I have only hardware. In X-ray images it looks like an engineering project. Two rods, 14 screws. Before the surgery, my neurosurgeon told me that if C1 were fused, I'd lose the ability to turn my head but that I would lose only about 20% with C2 fusion. He was right and is proud of his work. Why do I have more ROM than other C2 fusions? Not a clue unless it's the expertise of the surgeon.
You don't actually have a fusion. I a true fusion, they put pieces of bone between the vertebrae where the discs were and they are treated to grow so the entire neck turns into solid bone. The rods and screws hold it in place until all the bone has grown in and fused the vertebrae into a solid piece of bone. Those of us with this kind of fusion, could actually have the rods and screws removed and nothing would happen.

I know some get just the rods and screws and we have some here who is doing this but it is not that common. I take it it was done from the back. Can you tell me why you had it done? Was it primarily done just to alleviate pain? Did you have any herniated disks, cord or nerve compression?

I'm trying to learn so I can be of more help to those who come here seeking answers. Did the doc actually call it a fusion or is it called something else? I have a fusion with instrumentation and you just have the instrumentation so why is it called a fusion.....confusing!!!

I do a lot of MRI interpreting and try to help others understand what they are going to go through as well as help those who are post-surgery try not to be frightened by the changes they go through so I am always trying to learn, learn, learn. We are all volunteers/patients here trying to help so anything you can teach me is much appreciated!

Jenny
I think I've misled you. I believe I have fusion with instrumentation. I've been calling it fusion when talking to people who haven't a clue about spinal matters. (After not thinking about my neck for a while, I too have become pretty clueless--forgotten) I'm away from home until Monday, so can't access my records, which I'll do on my return and give you particulars. I had the surgery to alleviate compression from degenerated disks (spurs, etc) that had produced an "abnormal signal" and a growing area of spinal injury. I had no neck pain but did have a lot of pain and numbness in my arms (they felt broken) and hands, and I was beginning to have balance problems and inability to walk without weaving. The surgeon went in from the back rather than the front. I'll give you specifics when I return home. (PS. when I said OA in an earlier post, I meant RA, thought you had RA.)
I'll give you chapter and verse Monday.
Have a good weekend.
[B][/B]

[SIZE="4"][/SIZE]
Hi Jenny,
I doing ok. My ROM is not good to the left maybe 1/2 inch but to the right about 1 inch. My fusion is 9 level from C2-T3 and doctor says T4 is showing problems. I am solidly fused T1-T3 without hardware so dont expect anything to be done with T4 it will fuse Im sure like most of the others. Keep in mind all of this fusion except anterior C2-C4 has occured naturally, not surgically. Im almost 7 months post op now and still not lifting anything heavy per doctors instructions. I go back in August for catscan and all that fun stuff. I am exercising in a program and doing my best, no jumping just stretching and weight resistance feels better than sitting.

I believe the shoulder and upper back pain said by another member, Im sorry I dont rememeber the name is from everything being fused. I tell my husband Im like one on those carnival mirrors connected so far down that puts more strain on the muscles. I'm looking into getting one of those vibrators they use at baber shops, not too intrusive into the muscle more vibrating so hope that works. Sorry to hear your feeling bad, I would check with the doctor about the sudden movement, seems strange since fused for a while.
I hope everyone is well. Thinking of you all, and feels nice to know there are others out there, though not wishing this problem on anyone.

Hugs,
Saucer.
Hi Jenny,

I wanted to tell you I was fused from C4-C7 naturally (without sugical intervention) when they decided to do the laminectomy for what sounds like the same reasons AODean had. Arm problems, dropping things, pain tingling , not neck pain. This is why they thought I had carpal tunnel for 8 months. After that surgery I had only 20% movement in each direction according to PT. It says head lean with significant loss of ROM in all directions. Shocked to read lost only 20% when I had only 20%.
As you told AoD I have hardly any ROM now after the second surgery which I finally found out they fused C2-C4 anterior as they were already fused naturally in the back, and they added rods and screws to C2-C5 to get head up a bit and to keep it from falling forward more. Doctor was concerned about breathing and paralysis as head so far forward I had problems with breathing, swallowing and driving.
I hope this helps. So weird everyone is so different.
Note* When I say naturally it means congenital fusion (it just fused).
Hugs my friend,
Saucer
[QUOTE=aodean;4747383]hi Cotton,
Penny suggested I write to you, but she said the name is Saucer. In any event, two years ago I had cervical fusion C2-T2, with the neurosurgeon going in from the back. It was a crap shoot, of course. If I didn't have the surgery, I risked all sorts of problems, including paralysis. The surgery also posed threats, but by and large, the surgery was successful. By three months post-surgery I was doing very well.
I must admit, I've been having some upper-back pain recently and must see what that's all about. But, as you know, you can only do what you think is best at the time and can't foresee (or control) the future.
I hope you're doing well and would like to help, if I can.
Andrea[/QUOTE]
Hi, Andrea,
I am having C2 to T1 posterior decompression (via laminectomy) with instrumentation (DePuy Mountaineer--rods and screws) in 3 weeks.
I was not too concerned until I started reading the posts. My neurosurgeon has said 4 days hospitalization, 3 month recovery with a Philly brace, no driving. He just said it was "painful."
How did you sleep? How long is the severe pain? Should I get a walker or a cane? Any tips on coping?
Thanks,
G-ma Nanny
Hi G-ma Nanny,
I slept in a reclining chair for about three weeks, then I was able to return to the bed. I was on Oxycontin for about three weeks and then switched to Ibuprophen. I never had problems walking, had no need for a walker or cane. I do remember visiting a friend in the hospital also at three weeks--without difficulty. If your recovery is like mine, I'd prepare to take it VERY easy for the first three weeks. Then things get MUCH better.
I'd certainly do it again,
Andrea
Whew! Glad I asked you, Andrea!
Did you have rods, screws, plates for stabilization put in at the time of the laminectomy?
How long were you in the hospital?
What were you able to do when you first got home--walk, eat,etc.?
How long till you could shower?
How long did you wear the cervical collar?
Were you able to put T-shirts over your head to dress right away?
Thanks!
Yes, I have two rods and 14 screws. They were installed during the same surgery as the laminectomy. I joke about having a fake neck. In X-ray images the instrumentation looks like an engineering project.
I was in the hospital 5 days.
When I returned from the hospital I could walk, eat, use a computer.
I believe I could shower right away.
I never wore a cervical collar.
I didn't wear T-shirts at first; I made sure to have shirts on hand that buttoned down the front.
Hi Cotton,
I had seven levels fused with instrumentation, with symptoms very similar to yours. Once I knew I had to have surgery to prevent very bad things from happening (loss of control over this and that; possible paralysis), I wanted to get it over with, and that's what I would advise. Choose the surgeon you like best and go. The first three weeks post-surgery are tough. After that it's pretty easy.
Andrea
Oh, wow! What are you, 20 years old?! (I am 63, but very active and strong-till now...)
Did you have a Neurosurgeon, or an Orthopedic surgeon?
My NS said I have to wear the Philly collar for 3 months, with no driving.
What is it that made you unable to sleep in your bed right away?
What does being on Oxycontin feel like?
Maybe you should publish a book for the Spine Center, and collect proceeds!
Thank you again!
No, I'm not 20 years old. I'm older than you.
I had a neurosurgeon, not an ortho surgeon. But I know ortho surgeons get as good results.
I was surprised that I didn't have to wear a collar, as everyone I spoke with prior to my surgery told me they were collared for three months.
Sleeping in the recliner, rather than a bed, put less pressure on the back of my sore neck.
For me, Oxycontin took the edge off the pain and made me sleepy.
Cheers,
Andrea
Andrea, your answers to my questions today have relieved so much anxiety--thank you so much!

Could you eat normally when you came home, or did you have to alter your diet? Appetite? I have gained 10 lbs. from not being able to be as active as I was. I ordered a stationary recumbant bike from Amazon, which came today...
Is it possible to sleep on your side?
What does "VERY easy" mean when you talk about the first three weeks--like what exactly did you do in a day?
Could you raise and move your arms? Could you hold a book, or knit?

I have osteopenia, a precurser to osteoporosis; so there is a concern of the screws anchoring securely in the bone. Maybe that is the reason for the long-term collar.

My sx are lack of sensory in hands and legs, from navel on down to feet. No pain, but gait disturbance, and loss of fine motor in hands. I cannot stand or walk for longer than 10 minutes.
What were your sx?
I'm so glad my experience can help you a little.
Yes, I could eat normally when I came home, though I think I had little appetite. The pain killers had me sleeping a lot and, if I remember right, suppressed appetite.
If memory serves I didn't sleep on my side until after the three month mark. The muscles in my neck were traumatized by the surgery, during which they get pulled and pushed around. The collar should help. You'll find your range of motion limited at first because the neck muscles need to recover.
What does taking it very easy mean? You're going to have major surgery and that, plus the anasthaesia, saps your energy for a couple to three weeks. Your body will tell you what you can and cannot do. Play it by ear. It differs for different people.
I think you have an advantage in being in good shape before the surgery and not having a couch potato mentality. I would suggest that you not push yourself the first weeks after the surgery.
What did I do in a day? I read a lot. I worked part-time at home at an editing job.
I could raise and move my arms after surgery. I could hold a book, though my hands continued to give me problems. I use a kindle, which is lighter than a book and has no sharp edges.
I too have osteopenia, and there seemed to be no problem in anchoring things.
I think the question is not why you'll have a collar, but why my neurosurgeon didn't have me wear one.
My pre-surgery symptoms: pain in arms and hands and numbness, dropping things, weaving when I walked. The main reason for the surgery was that an area of spinal cord injury was expanding. The prognosis was loss of control over this and that, possible paralysis.
Don't worry. Get a few good books for the recovery. Movies on home tv.
Relax. When is your surgery?
Dear Andrea, aka "My Hero-"
I was not surprised to read that you edit, as evidenced by your writing. I had you figured for an English teacher, a 20-year-old one at that!

My surgery is scheduled for June 6, or sooner, if there is a cancellation.

You mentioned recovery of your hands. Did you get full recovery from all of your symptoms? My neuro said,"30% chance of getting better (walking, fine motor, sensory return of hands and legs), 30% of getting worse, 30% staying same." And after that, he threw in THE RISKS--death or paralysis. So now you can understand how hearing your account has been so helpful to me! I was really down about it.

On a pain scale of 1 to 10, 10 being the worst pain you have ever had, how would you describe your pain from right after the surgery (wake-up), and then through-out the next three weeks, while being on Oxycontin? Knowing your description may help me to not overreact, because as an old RN who has seen many mistakes, I will not think the worse--like a screw has broken loose, etc.

Thanks again!
June 6 is soon. No wonder you're anxious.
On a scale of 1-10, I'd say the pain I had the first two-to-three days after surgery was a 9, maybe even a 10. But it quickly decreased. I was in the ICU for a day and a half after surgery, which was routine. I felt well enough ten days after surgery to go off the Oxycontin--but a couple of days later I did get a refill for the prescription, used the drug for a couple of days and then made do with Ibuprophen.
It's hard to say about my symptoms now. My walking is definitely much, much better. I can walk a straight line unless very tired.
I didn't loose the numbness in my hands, and about three months ago, my neurosurgeon ordered an MRI because I told him my symptoms had gotten worse (pain in arms, numbness, burning, sensitivity to touch on arms). The cervical MRI showed no problems. Turned out that I had peripheral neuropathy from Statin use, which I still haven't resolved after going off one Statin, trying another, and going off it. I'm also having some problems with upper back and shoulder pain, and whatever problem I have there exasperates the neuropathy symptoms. Since I was on Lipitor for years, it's hard to know what proportion of my symptoms--even before surgery two years ago--was a result of my neck and what was Statins.
I hope you like your surgeon and have confidence in him. I also hope you have good emotional support. I'm blessed with a kind, good man for a husband.
Andrea,
That is curious and intriguing--neuropathy due to cervical stenosis, versus statin use. I too have been on Lipitor 80 mg for > 1 yr. Prior to that, 5 years on Crestor 40 mg. Bet you have hypertension too (?)
When this started in Feb., I had looked in depth for side-effects of Lipitor, and saw parasthesia in one source, and called my Cardiologist, who said not likely. Thus, the referral to neurology, MRI, etc.
From a logical view, it seems to me that if the impingement on the spinal cord is significant enough to cause gait disturbance (like that far down on the cord), then neck, shoulder, arm, hand involvement would be a given/automatic.
Could it be that you have subtly been using these muscles more, without realizing it, since you have gradually improved/felt better?
Have you been checked for carpal tunnel, or cubital tunnel syndrome? (EMGs done in office by a neuromuscular physician--easy test)
Also, I read somewhere that torn rotator cuffs are very common in our age group, even if you have not played sports.
Another idea is to try chiropractor adjustment, but taking copies of your MRI reports in order to be guarded/protected at your surgical sites. Or deep massage at the trapezious area of your back?
Lastly, I ordered a special pillow that supports the neck, yet cradles the head. It can be used four ways. I will look it up, if you are interested. I have experienced pain between the scapula and in the shoulders if I do not use it every night.
Just thoughts...
BTW, I always promised myself that I would never become an old toot that is obscessed about and compares notes about my health with others. Oops...
Thanks, G-ma N.
I am sure my stenosis/degenerative disk disease did cause the symptoms. They certainly diminished after surgery but then increased again, and, I think (but do not know), that
the recent spike is Statin-induced. When I went off the Lipitor the symptoms improved, but then I went on another Statin and the symptoms returned and since I've been off the second Statin, I haven't seen the same improvement. I also have relatively new upper back and shoulder pain and don't know if that can cause arm/hand pain. My first step in finding out what's going on is an appt for an annual physical with my internist, a super diagnostician. I suspect I need an MRI of upper back, which is achy, and a little physical therapy to find out what exercises to do and which ones to avoid for upper back and shoulder pain.
Yes, it's a bore us old folks comparing symptoms. I don't do it with other people. My kids call and I say I'm fine. Same with my sibs, my friends. This forum, however, is made for comparing symptoms and helping each other through them.
Plus, apart from your neck, you're a spring chicken. You really are not old until, hm, mid-70s, 80s. Depends on the person. I wasn't old until four months ago when I started being bothered, again, by arm/hand pain and back/shoulder aches. When these improve, I'll be much younger again. After your surgery, you'll be ready to take on the world again.
One thing: did you get second- and third-opinions, not only to find out if you need the surgery--you clearly do--but to find a surgeon you think is really good. I asked if you have confidence in your surgeon and don't think you answered.
[QUOTE=aodean;4753940]June 6 is soon. No wonder you're anxious.
On a scale of 1-10, I'd say the pain I had the first two-to-three days after surgery was a 9, maybe even a 10. But it quickly decreased. I was in the ICU for a day and a half after surgery, which was routine. I felt well enough ten days after surgery to go off the Oxycontin--but a couple of days later I did get a refill for the prescription, used the drug for a couple of days and then made do with Ibuprophen.
It's hard to say about my symptoms now. My walking is definitely much, much better. I can walk a straight line unless very tired.
I didn't loose the numbness in my hands, and about three months ago, my neurosurgeon ordered an MRI because I told him my symptoms had gotten worse (pain in arms, numbness, burning, sensitivity to touch on arms). The cervical MRI showed no problems. Turned out that I had peripheral neuropathy from Statin use, which I still haven't resolved after going off one Statin, trying another, and going off it. I'm also having some problems with upper back and shoulder pain, and whatever problem I have there exasperates the neuropathy symptoms. Since I was on Lipitor for years, it's hard to know what proportion of my symptoms--even before surgery two years ago--was a result of my neck and what was Statins.
I hope you like your surgeon and have confidence in him. I also hope you have good emotional support. I'm blessed with a kind, good man for a husband.[/QUOTE]

Andrea,
Since you are having shoulder pain I would check with the doctor about "frozen sholder". I was diagnosed last week with it. So much pain in collar bone, rib bones, shoulders and back. Hurts to even laugh.
The doctor gave me a shot of lidocaine and steroid under the bursa (sp)?
and what a difference. Right away I could lift my arm higher than ever (since the surgery) with little pain. Monday, the other arm. The doctor said since I was in hard collar for 4 months and so limited with rom my shoulder froze. He said the shots 1st then PT to loosen them.
My grandson (8) teases me and says Grandma if a robber says put your hands up you would be in trouble. Haha.
Anyway just wanted to let you know this could be the problem.
Thanks, Saucer and glad you're doing better.
I suspect I don't have frozen shoulder as I have 100% ROM in both arms/shoulders and never wore a collar. As I mentioned to G-ma Nanny, I'm off next week for a physical that I think will begin the process of figuring out what gives. I suspect a disk or two below my fusion (C2-T2) is beginning to go. Probably need an MRI and a bit of physio to learn which exercises are good and which are poison.
Good weekend.
Andrea
Andrea,
Well thats good to hear. My rom is very limited in arms, and neck (head).
Strange I keep finding red marks on the front of my head and face. Husband says probably due to surgery as they had me hanging in so many different directions. Just strange. I shocked you didnt have a collar, that is strange.
I started exercising again (the best I can) mainly weight resistance and a little cardio, no jumping just walking. It helps my back so much. My pain now is mainly in my back as it has taken the brunt of this stiff neck for so many years now.
Good luck with physical.
Saucer
Andrea,
Starting back with your internist sounds like a good plan. Keep me posted, and good luck!
I do have confidence in the neurosurgeon--West Pointe, Wayne State, then 5 yrs training at Mayo. His own father had this same surgery, with more severe symptoms, and is now fixed, by a partner in the practice. The neuromuscular Dr. who referred me to the Neuro, had his own mother fixed by him. We did consider going to University of Michigan, the gold standard in this state, but it is 4 hours away, in case of complications/return visits. He did say, in response to my request, that if something went drastically wrong during or after surgery, he would be willing to transport me to U of M. He also consults with 2 Dr.s there on a regular basis.

When I say "confidence," I am guarded. That is because, as you stated, there is no choice to not have surgery, so you must get the best that is available. Again, because of my exposure to the medical field, I do not think I could ever be totally "confident," knowing of so many things that could go wrong.

I also have a very supportive husband. But anyone can get worn out caring for a burden, if this goes badly, so I have a "home health care" plan, if we need it. I do not want to be a burden to him.
Sounds like you have a good surgeon and good emotional support. Also sounds like the best you can do is somehow get yourself to believe you'll have the best possible outcome, no point believing anything else. And since you have little control over what will happen, turn over your worries to whomever or whatever you turn over your troubles.
Keep writing to me and others. Get your worries out and hope they stay away from you.
It may help to know--if you don't--that the first couple of days post-op, they give you a Morphine pump, at least they did me. And before I left the hospital, a PT person came and started physical therapy. Shows how fast you start to recover.
Two weeks after the surgery, I went to my first post-op appt with the neurosurgeon, which meant driving an hour each way, waiting for ages in the hospital, and walking a distance. I don't remember the activity as being painful or too exhausting, a little exhausting, yes.
Andrea,
How did your visit to the internist go this week? What is the plan?

I finished all tests for pre-op yesterday. Now the wait.. Getting harder to get around, due to increased numbness, soreness, imbalance, feeling like I want to roll up in a ball on the floor to be more comfortable. I do not know if this is caused by trying to do more physically around the house/yard before the surgery, or to an increase in the impingement on the cord. Whatever, it indicates that surgery is unavoidable, as I see in the grocery store people in their 80's getting around better than I am.

Nice to be able to have you to "whine" to!
Thanks for your interest and support,
G-ma Nanny
Hi G-ma Nanny,
Now it's all over but the waiting. How are you keeping yourself from worrying more than 24 hours a day. Seriously, can you shut the worry out for periods of time by reading can't-put-it-down books, talking to friends, doing some handwork, watching Netflix. My daughter told me today that she just joined Netflix and that for $7.98 a month she can watch almost any TV series, movie, or documentary. You must have gkids, since you call yourself G-ma. Can you read to them, make something for them, do other things with them (or for them) that don't take a lot of physical exertion? How old are they? One of my stepdaughters gave me a book in which she wanted me to write about my life for her children. Maybe when your g'kids get older they'd cherish your story, and maybe now's a good time to write it.
It sounds like a good thing that you didn't wait longer for the surgery.
Please don't think you're whining when you write to me or others. I don't interpret it that way at all.
My annual physical went splendidly, except for the upper back/shoulder problem. My very good internist isn't an orthopedist or a neuro. He gave me a script for physical therapy, but I think I may check in with a more specialized doc before starting the PT.
Don't hesitate to write.
Andrea





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