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Spinal Cord Disorders Message Board


Spinal Cord Disorders Board Index


Hi...I've had a herniated C5 C6 for many years, but due to an injury where i felt my spine being pulled/stretched out, i have now been diagnosed with c5c6 compression. My MRI says the disc "impresses the left aspect of the thecal sac and flattens the cord to the left of midline. Also mentions possibility of calcific density (not sure what that means). Severe c6 nerve impingement was also noted. EMG showed some minor nerve damage in the area.

Since you all are so knowledgeable...

I am not really sure what to do. My neurologist knows I don't want surgery so is not recommending it, but did say i need to get surgical opinions. 3 of the 3 i saw surgeons said I should have surgery. My internist said it's a big surgery , and since my vertebrae is stable, i should exhaust all options first.

What are the risks if I DONT have surgery? Is surgery always recommended for cord compression? Could my condition cause complete paralysis? I am unclear on the facts...

If i do opt for surgery, does anyone know good LI surgeons? I also have appt's with NY surgeons but traveling to NY is hard for my mom. I met with Dr. N. Epstein and Dr. V. Leone on LI and I trust both but was hoping for more references...maybe I am just trying to stall the inevitable but any feedback you all have would be really appreciated! I am very stressed over this!!
[FONT="Comic Sans MS"][/FONT]:wave: erica1976....I too have a compression at C6/C7....have been through all of the tests and the next step is surgery........the risks for not having surgery is you put yourself in danger of paraylasis if you are in an accident ......the situation does not get better on it's own.......
[COLOR="Red"]READ THROUGH SOME OF THE OTHER THREADS[/COLOR]......I am new to this board but once I found out i needed surgery I found this board and read almost all of the threads and responses.....I found this board to be a bounty of information....More information than I got from my DR.....this board also gave me questions to ask the dr........
.I have found from other research - In my opinon it is best to use your own bone if a fusion is needed....the reason being I found that some donor banks DID NOT TEST DONOR BONE FOR HIV1, HIV2, HEP C, AND SYPHILIS.....that is very scary to me.......some people say that using your own bone - the donor site is painful- others have stated it wasn't as bad as they thought.....I for one will have greater peace of mind using my own bone.......I am having surgery by the end of the year or in Janurary.......Hope this is of some help...Do read the other comments on this site .....these people who have posted have alot of information to share.......Good Blessing to you...Keep us informed. ...........quilter58
I agree - you risk paralysis, especially if you are in an accident w/o surgery.

That said, you should find plenty of options. ACDF appears to be relatively routine, so finding a good doc on LI shouldn't be a problem. That said, ACDF or any fusion runs risks of extra pressure above and below the fusion. If your problem is only at one level you are probably a candidate for artificial disk replacement. In my case three levels were involved and given the choice, I had a laminectomy which is done from the rear, clears the compression by cutting into the vertebrae and no fusion.

If you find your balance is off, you are dropping things, urinary or bowel "urgency" as well as tremors, numbness, even walking problems - then have the surgery sooner than later.

Good luck.
Hi Erica1976, I totally understand what you are going through. I'm on LI too! I have severe cord compression C5 and C6 which was found totally by mistake when I went to a neurologist for migraines. Long story short, he made me see a neurosurgeon who said I needed surgery. Dr. Stephen Burstein, in Rockville Centre. Nice guy, very smart, but scared the living crap out of me. Maybe it's because the neurologist didn't think I'd need surgery and the NS emphatically said I needed it and went into complete detail and left out nothing, including every risk, that I totally had an out of body experience!!! Anyway, I found another surgeon in NYC, Dr. Paul Kuflik, who I really, really like. He also suggested surgery, but in a different manner, wants to see me again in Dec with a newer MRI. Just a completely different attitude and calmer approach. He's the director of the Spine Institute in Beth Israel Hospital. Hope this helps. Do you have any pain or tingling or numbness? I have no symptoms but I am so fearful of a bad fall or car accident that I know surgery is the only thing that will help. Take care

Marcy
Thank you all for responding. I really appreciate it!! The surgeons are all recommending ACDF and I decided, like you Quilter, that I would definitely use my own bone, if I have the surgery. Sunshine, I know that ADR is another option and am guessing that I might be a candidate. They both seem to have their pros and cons and that causes more confusion...

I met with my neurologist today and he is trying to deter me from rushing to surgery, unless the pain is unbearable. I am stuck. He says that the odds of being paralyzed from this condition are lower than I think, and a devastating accident can paralyze anyone. Although i trust him, I left feeling just as confused.

That's funny justmitype, I just made an appt with Stephen Burstein for a surgical opinion. I also have an appt with Dr. Andrew Casden (I believe he works with Dr. Kuflick at the Spine Institute).

I have pain in neck, tingling down left arm, pain in right arm, weakness in both arms/hands, chest pain which i am certain is from the compression, sometimes i actually get muscle cramping in my abdomen which permeates from my back??, difficulty swallowing at times (DOES ANYONE HAVE THIS SYMPTOM??) and, lately, leg cramping/pain. Also, is it possible to have middle back pain from compression in the neck?? My back MRI was negative, but a surgeon said that neck compression could cause muscle spasms in back. Sometimes, it's hard to walk (i don't have gait, but walking puts a lot of pressure on my spine and it feels like my back is going to break).

Perhaps I will wait a few months?
[FONT="Comic Sans MS"][/FONT]erica1976......I too have trouble swallowing alot.......I also have tingling in my legs and feet even though the nuero said my legs have nothing to do with my neck.......I found out on this board a couple of other people who had trouble with their legs also and their nuero also told them the same thing.........I have lots of stiffness in between my shoulders.........I don't want to wait too long as I just can't stand my left arm going numb all the time....and the headaches..........Only you know best how long to wait .......only you are living with the problems......

Good blessings to you and the others here......quilter58
Hi Erica1976
I too know what you are going through. I have problems with C-4-C5 C5-C6 C6-C7
At the C5-C6 I have a dick extrusion, compressing the spinal cord, loss of CSF escetera.

I live in Rockland County, suburbs of NYC. My docs all up here said I need surgery. I wanted another option. I did see a doc that deal with Epidurals but they siad it would be too risky. Where they would have to do the Epi it is next to a artery and it is so narrow it could cause me more pain. He also said he wanted me in NYC to see a surgeon.

I saw 3 surgeons. Dr. George DiGiacinto out of St. Lukes, Dr. Robert Holtzman out of Lenox Hill and Dr. Roger Hartl out of New York Presbyterian Wiels Cornel. All three said the same thing...SURGERY or I am taking a risk of Perminenet damage are prarlyis.

I have pain, numbness pins and needles I too have lately been getting chest pains. I an also having some headaches bad lower pain ion my head It is even causing problems for me to drive my car and even turning a knob on the door.
I am scheduled for Nov 29th with Dr. Hartl. I decided on Dr. Hartl because it is NYP which is rated as the 6th best hopital in the US and the 4th best hospital in the US for Neurosurgery. Dr. Hartl is also the surgeon that operated on the firefighter that had top jump off that 50 foot bulding last year. If he could save him he could do the surgery on me. i also realy liked Dr. DiGiacinto and probably would of immediately whent with him, but I am nopt thrilled with St. Lukes.
I was told that 2 or maybe 3 disc will have to be worked on. He is repalcing them with plastic discs and shaving of my own bone. I will also have a plate. I will have to ware a neck brace for at least 6 weeks. I guess I wont be driving for a while. He also mentioned something about this I-Pod looking thing that I will have to wear to help with the fussion. It is experimental.
It is supposed to help with the healing.

I would make a descion as soon as possible. believ me surgery is not the answer I wanted to here either. But if it works..then it is worth it and it is better then the alternative.

Gotta go it is starting to hurt to even type.

Good Luck and keep me informed!!
Erica, the risks Dr Burstein mentioned were all regarding acdf surgery. Remember, I went to him not thinking I needed surgery and never even heard of this surgery before. When he told me they go through the front of the neck and had to move over your throat, etc, I thought I was going to throw up all over his shoes:eek: He then continued to tell me about the swallowing difficulties (which I now know about) and that I might need a speech therapist and yada yada and it was way too much information for my pathetic scared to death brain to handle at the time. I was all alone in his office and freaking out is an understatement. As I said, he's a nice man, and supposidly a wonderful surgeon, but it was just a bad experience for me. Since that time I have learned so much more (99% from this message board). Am I still petrified of having surgery? Yeah, I am, but I will have it when it comes down to it.

Marcy
Well thank you all for your advice/opinions...months later and i am still deciding on what to do :)
with the nerve pain and with the EMG saying you had nerve damage I would highly suggest surgery. YOu can only get worse and there's a saying that goes: "time is nerve". The longer you wait the more damage that can happen and the more slow your recovery may be. Good Luck to you and many Blessings.
hi avglenn, i asked my neurologist's PA about that and she said that it was an option I could look into....epidurals kinda freak me out though..would probably feel more comfortable having the surgery!
Hi erica


I live upstate about an hour and I went to HSS Dr Camissa head of spinal surgery.. great place to get surgery done voted #2 hospital in the nation by US news ..good luck
[QUOTE=erica1976;2863856]hi avglenn, i asked my neurologist's PA about that and she said that it was an option I could look into....epidurals kinda freak me out though..would probably feel more comfortable having the surgery![/QUOTE]

Ya Im in the same boat. I need to pick from a 7 panel list of Dr.s for a consult for cervical c5/c6 epidural of Dr.s who I dont even know. I am just going to call each one and ask questions like success rate and frequency rate of cervical epidurals. Im not looking forward to it, but Im fed up with the pain. My thing is, I dont think any Dr. is going to guarranty a pain free long term fix with epidural. And it could make things worse. :dizzy:
Just an FYI you need to remember about actual spinal cord compression or even mild affectation is that you are now beyond just dealing with the motor and sensory nerves at this point and are dealing with actual spinal tracts which carry all of the body system function info to the brain.this can become a huge problem and possibly a devistating one if that compression is left with no intervention for too long.just like with a compressed nerve ,the cord can also start to necrose or die off,or even granualize(myelomalacia) without the proper blood flow and other chemicals it needs to sustain itself.

i had to have a glob of blood vessels removed from the inside of my cord up at the c 7 t 1 levels back in 03.this damaged three spinal tracts two spinal nerves and severly damaged my sympathetic nervous system.the amount of actual damage to certain body systems and wierd freaky stuff i now have going on inside all different parts of my body are honestly,at times,indescribable.

the thing is,the longer you wait to have this relieved the much higher risks you have of having some permanent types of damage to your cord,trust me,you don't want to go there.from what you have described as far as symptoms,i really do think that you are at the point where you really DO need some sort of surgical intervention.you most definitely also have a much higher risk of possible paralyzation from even a minor accident but even more likely,damage to certain spinal tracts and nerve fibers that also run thru your cord.all it would take is enough force or kinetic energy that would force that end of whatever is already compressing your cord to push it ahead a bit further.that cord is small but it just carries sooo incredibly much info and important nerve signals to your brain that even losing a small amount of tract or nerve fibers inside of it can have some really big effects on certain areas of your body.quite frankly being an "incomplete" spinal cord injury patient can have many many more possible complications and nasty pain syndromes than someone who is an actual "complete' SCI patient.paralyzation is NOT the worst thing in the world,believe me.

i am not trying to scare you here just trying to get you to see the very real things that can come along for the ride if you should wait too long to have this intervened upon.going in from the front of your neck and having this fixed would probably be the best way to go actually.if you do not have to cut thru all that really thick hard muscle in the upper back and c spine areas thats really a big bonus.this was a big long recovery for me when i had that spinal cord surgery.they had to do a tri level lami and go into my cord from the back side.the difference in the pain from when they went in from the front to do my ACDF and the very weak muscle there as opposed to the large amount of muscle in the back was huge pain wise.i actually had to have two anterior approach surgeries done,the original surgery and then a hardware placment when my c spine didn't fuse.its a much easier approach to heal from and the pain was much much less.

i just really do think,based on your symptoms and the overall length of time this has been this way with your spinal cord,you really DO need to start to consider the surgery before something else can happen to make things much worse than they already are,but that choice is up to you.its time to weigh the pros and cons.there are many benefits from having this done as well as the usual risks involved.putting all of this on paper may help to really take a good look at what either option will or wont do for you and the risks of leaving things this way Vs moving onto the surgical options.at least they will not actually have to cut into your cord.removing a compression is risky but much much less than what i was forced to make a decision on.now that one really sucked.it was the lessor of two evils type thing where either way,i was going to suffer permanent damage.the thing is,every surgery no matter how minor or major all carry some level of risk,but when you compare that to not having a particular surgery,well sometimes you just have to dive in and get it done to save yourself from something even worse down the road,ya know?despite all the crap i now have to deal with because of my damage,i would probably make the same decision if i had it to do all over again,just because to leave that sucker in my cord would have definitely caused another bleed on top of the two i already had and left me in a wheel chair with other possible types of damage as well.i still think i did what i really needed to do at the time,and given the risks of leaving it in and the inherent risks with that,vs just taking it out.not fun but needed at the time.heck,this little SOB could have even bled on me while i was driving or doing some other hazerdous type of task,that kind of made me shiver a bit.

i know this is a big old scarey decision,but i really do think given your symptoms,its probably time to just deal with this and be able to breathe a bit easier knowing that risk to you is gone.just weigh all options and get at least a few different opinions on any particular procedure that is presented to you.i sought out three seperate opinions before consenting to my surgery for the cavernoma removal.i needed to know i was making the best possible informed decision before consenting to anything surgical.

just a little helpful suggestion for you here,but when i was in this process i kept thinking of really good questions to ask but would forget them when the time came with the NSs?so i started keeping a notebook with a pen on my kitchen counter and whenever i thought of a good question i immediately went to the notebook and wrote them down.if i waited,even a few minutes to do this,i would tend to forget what the dang question even was.so i learned to do this as soon as they popped into my head,even when i was lying down to go to sleep at night.this always seemed to be when i did my best thinking.but you have every right to ask as many questions of any NS who may be doing this surgery.i actually ended up with three very long pages of questions,and my wonderul NS actually answered them all for me,even making little bits of time for me between surgeries.he knew i was rather terrified at the thought of someone actually cutting into my cord and he was really empathetic.luckily i had the head of neurosurgery at the university of MN do my surgery,but now he went and retired on me so that really sucks.but i was very lucky to have his level of experience and overall knowledge.he practiced for some thirty odd years.experience is the key here tho,you need to have a good knowledgeable experienced NS doing your surgery.you can ask them how experienced they are in your particular surgery.you DO have that right to know before consenting to anything.

i do wish you lots of luck with this and hope everything goes well for you whatever you decide.i just wouldn't keep this on hold for too long tho,K? take care and let me know how things are going for you.Marcia


Oh,by the way,just what IS an 'LI' surgeon?i have never heard that one before.
[QUOTE=bdancer;2863960]Hi erica


I live upstate about an hour and I went to HSS Dr Camissa head of spinal surgery.. great place to get surgery done voted #2 hospital in the nation by US news ..good luck[/QUOTE]

HI Bdancer, what did you think of Dr. Camissa? I had an appt with him but never made it to the appt...am thinking about rescheduling b/c I hear he is a great surgeon....what was your impression of him?
[QUOTE=feelbad;2865515]Just an FYI you need to remember about actual spinal cord compression or even mild affectation is that you are now beyond just dealing with the motor and sensory nerves at this point and are dealing with actual spinal tracts which carry all of the body system function info to the brain.this can become a huge problem and possibly a devistating one if that compression is left with no intervention for too long.just like with a compressed nerve ,the cord can also start to necrose or die off,or even granualize(myelomalacia) without the proper blood flow and other chemicals it needs to sustain itself.

i had to have a glob of blood vessels removed from the inside of my cord up at the c 7 t 1 levels back in 03.this damaged three spinal tracts two spinal nerves and severly damaged my sympathetic nervous system.the amount of actual damage to certain body systems and weird freaky stuff i now have going on inside all different parts of my body are honestly,at times,indescribable.

the thing is,the longer you wait to have this relieved the much higher risks you have of having some permanent types of damage to your cord,trust me,you don't want to go there.from what you have described as far as symptoms,i really do think that you are at the point where you really DO need some sort of surgical intervention.you most definitely also have a much higher risk of possible paralyzation from even a minor accident but even more likely,damage to certain spinal tracts and nerve fibers that also run thru your cord.all it would take is enough force or kinetic energy that would force that end of whatever is already compressing your cord to push it ahead a bit further.that cord is small but it just carries sooo incredibly much info and important nerve signals to your brain that even losing a small amount of tract or nerve fibers inside of it can have some really big effects on certain areas of your body.quite frankly being an "incomplete" spinal cord injury patient can have many many more possible complications and nasty pain syndromes than someone who is an actual "complete' SCI patient.paralyzation is NOT the worst thing in the world,believe me.

i am not trying to scare you here just trying to get you to see the very real things that can come along for the ride if you should wait too long to have this intervened upon.going in from the front of your neck and having this fixed would probably be the best way to go actually.if you do not have to cut thru all that really thick hard muscle in the upper back and c spine areas thats really a big bonus.this was a big long recovery for me when i had that spinal cord surgery.they had to do a tri level lami and go into my cord from the back side.the difference in the pain from when they went in from the front to do my ACDF and the very weak muscle there as opposed to the large amount of muscle in the back was huge pain wise.i actually had to have two anterior approach surgeries done,the original surgery and then a hardware placment when my c spine didn't fuse.its a much easier approach to heal from and the pain was much much less.

i just really do think,based on your symptoms and the overall length of time this has been this way with your spinal cord,you really DO need to start to consider the surgery before something else can happen to make things much worse than they already are,but that choice is up to you.its time to weigh the pros and cons.there are many benefits from having this done as well as the usual risks involved.putting all of this on paper may help to really take a good look at what either option will or wont do for you and the risks of leaving things this way Vs moving onto the surgical options.at least they will not actually have to cut into your cord.removing a compression is risky but much much less than what i was forced to make a decision on.now that one really sucked.it was the lessor of two evils type thing where either way,i was going to suffer permanent damage.the thing is,every surgery no matter how minor or major all carry some level of risk,but when you compare that to not having a particular surgery,well sometimes you just have to dive in and get it done to save yourself from something even worse down the road,ya know?despite all the crap i now have to deal with because of my damage,i would probably make the same decision if i had it to do all over again,just because to leave that sucker in my cord would have definitely caused another bleed on top of the two i already had and left me in a wheel chair with other possible types of damage as well.i still think i did what i really needed to do at the time,and given the risks of leaving it in and the inherent risks with that,vs just taking it out.not fun but needed at the time.heck,this little SOB could have even bled on me while i was driving or doing some other hazerdous type of task,that kind of made me shiver a bit.

i know this is a big old scarey decision,but i really do think given your symptoms,its probably time to just deal with this and be able to breathe a bit easier knowing that risk to you is gone.just weigh all options and get at least a few different opinions on any particular procedure that is presented to you.i sought out three seperate opinions before consenting to my surgery for the cavernoma removal.i needed to know i was making the best possible informed decision before consenting to anything surgical.

just a little helpful suggestion for you here,but when i was in this process i kept thinking of really good questions to ask but would forget them when the time came with the NSs?so i started keeping a notebook with a pen on my kitchen counter and whenever i thought of a good question i immediately went to the notebook and wrote them down.if i waited,even a few minutes to do this,i would tend to forget what the dang question even was.so i learned to do this as soon as they popped into my head,even when i was lying down to go to sleep at night.this always seemed to be when i did my best thinking.but you have every right to ask as many questions of any NS who may be doing this surgery.i actually ended up with three very long pages of questions,and my wonderul NS actually answered them all for me,even making little bits of time for me between surgeries.he knew i was rather terrified at the thought of someone actually cutting into my cord and he was really empathetic.luckily i had the head of neurosurgery at the university of MN do my surgery,but now he went and retired on me so that really sucks.but i was very lucky to have his level of experience and overall knowledge.he practiced for some thirty odd years.experience is the key here tho,you need to have a good knowledgeable experienced NS doing your surgery.you can ask them how experienced they are in your particular surgery.you DO have that right to know before consenting to anything.

i do wish you lots of luck with this and hope everything goes well for you whatever you decide.i just wouldn't keep this on hold for too long tho,K? take care and let me know how things are going for you.Marcia


Oh,by the way,just what IS an 'LI' surgeon?i have never heard that one before.[/QUOTE]

Marcia, thank you so much for your thoughtful and helpful reply...really sobering i have to admit but i know i have to hear it...I was all ready to do the surgery and they my neurologist was saying i should not rush into it...then i got confused about doing the surgery. Sometimes i feel like there is a lump in my throat when i swallow (since the injury) and i occasionally feel like my breathing is labored. The surgeons say it is unrelated but the symptoms began directly after the injury so i disagree...since ACDF can cause swallowing difficulty, i worry about that....BTW, LI stands for Long Island, NY...

I am so sorry to hear everything you have been through!!! How did your injury begin? Was there trauma involved?
Hi all

My advice, any compression should be taken seriuously.

I just has Nuerosurgery on 11-29-07 C-5 to C-7 Fussion. I had loss of fluid, spinal compression, loss of reflexes severe pain numbness in left hand. ect.

I had my disks replaced with plastic ones filled with my bone, fussion and a titanium plate with screws. My pain, and numbness is gone in my arm. I could do things that I couldnt before.

I am still weak, but just got the ok last week for theropy so hopefuly that will help.

Unfortunately, this past monday I fell on black ice right on my but. It automaticaly cased a headache, and severe back spasms and my neck started to feel worse.:eek:

I immediately went to my GP since my surgen is 1 hour away and he sent me for full x-rays of my spine and put me on anti-inflamitories and Valume.
The results were sent to my surgeon and no breaks or fractures..THANK GOD
They did say that my tissue and muscles around my neck area were swollen, I said that is probably still from surgery. Unfortunately not. It was caused by the fall. I guess i aggrivated it all so I am on restriction again.

My surgeon I feel is great. i was very happy with him.

His name is Dr. Roger Hartl and he is in Manhattan. He is out of New York Prebitirian Weil Cornell. Excellent hospital.

I live in Rockland County New York and the Hospital is about 45 min to 1 hour away. It was deffinately worth the trip. I still see him for follow ups and x-rays.

Any questions please ask
GOOD LUCK WITH ALL





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