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Spinal Cord Disorders Message Board


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Hi,
i just found this board and it looks like there is a lot of good info and people going through what i am. my story: head on collision caused ruptured discs in my neck. i had ACDF surgery in sept 07. the surgery helped a lot with the migraines and shooting arm pain, but my shoulders got worse. i have constant chronic neck and shoulder spasms. my shoulders (left is worse) are completely knotted and have NEVER relaxed since surgery. i have had almost 2 years of PT, tried accupuncture, have had 4 facet blocks, trigger point injections and botox injected into the shoulder muscles. nothing has worked. i am in pain mgmt and take soma daily (flexeril at night) and dilaudid for pain. i get a massage once or twice a month which seems to help the most but since insurance doesn't cover it i cannot get them as often as necessary. every masseuse is shocked by how knotted my shoulders are. my work will not allow me to take pain medication on premises and it is getting harder and harder to get through the day. and by the time i get home the pain is acute (i work at computer also which doesn't help). the docs cannot explain why this has happened when by all accounts the surgery was successful. all they can tell me is that i will have to deal with it using medication and 'treatment' for the rest of my life. i fear if it keeps getting worse at some point i won't be able to work outside the home. is anyone else dealing with this? have you found anything that helps or can cure it? i am getting mroe depressed about this every day and feel i am at my wits end. i am willing to try almost anything at this point. thanks for reading.
kellie
[QUOTE=kelliek1010;4292770]no, i have never heard of it. thanks - i will look into this;)[/QUOTE]
I don't know how you work at a computer for 3 years with your chronic pain and the meds you take. I had to stop working in July of 2009 with diagnosis of myelopathy/spinal stenosis. With the lack of coordination, SOB, falling, tremors, muscle weakness and heaviness and the inability to even lift my arms above shoulder level I had to quit and go on disability. The hardest thing I ever had to do since I loved my job so much. Now I use a cane and a wheelchair to get around. This all happened to me in a course of 6 months every week a new symptom. I never would have thought this neck situation could lead to this and I was a Critical Care RN for 21 yrs.

In 1982 I had an incomplete fracture of the C4C5 with paralysis(lasted a little over 24 hours). Had posterior fusion and hip bone graft. With the added bonus of traction, halo brace, strykor frame bed and a 6 week stay in the ICU. It was hard on a 28 year old mother.

In 2006 I had a ACDF of the C4C5C6 with cage and plate. Why both don't know. Since 2006 with the surgery the pain never went away. Trigger point injections, epidurals, drugs pain pain and more pain. This really isn't easy for anyone. The hardest part is no one understands what your going thru especially the doctors. Even one doctor told me it's all in my head. Do you believe that. Luckily 4 other doctors agreed with the diagnosis. You have to prove yourself to these doctors. That's why I joined this forum. For you and others out there understand what it is like dealing with pain day in and day out.

But as for those nasty spasms they are almost gone with the baclophen really a miracle drug for me. Tell me what led to your needing the surgery an injury. How do you cope with the pain? Does the medicine make you sleepy? Are you able to do most anything except lifting? Did you have this neck problem for long?

Thanks for listening.

busterbuddy
Hi Busterbuddy,
Thanks for the reply. I am not allowed to take my pain medication at work, so many times by the time I get home the pain is very bad. And then it takes longer and more medication to get relief. Yesterday I had to close my door 3x and lay down to try to alleviate the spasms. When they get bad I literally have a hard time holding my neck upright. And I have to work - my husband died 9 years ago of cancer and it is just me and the dogs and the bills have to get paid :(. And my job includes a lot of int'l travel. Interestingly travel does not do too much irritation (probably because I am moving a lot and so busy I can't focus on the pain)

Your story is just horrible - I can't even imagine. How do you do it? And I have been told the pain was in my head - but for anther condition in my early 20's - and when I finally had surgery for it in my early 30's by a specialist at Georgetown they found I had a rare disease - one of the most painful conditions known. I think docs say that a lot because they have no clue what is wrong and it is easier to throw it back on you than admit they don't know. I am lucky in that my docs have been great - we have tried most medical interventions and I have tried alternative (some totally out there) on my own but nothing is working. They admit they are stumped and actually just suggested I might want to go to a good sports medicine doctor, which I probably will.

I am in pain all the time but I go thru periods when it is much worse. Something happened though this winter - with the cold and all the snow we got here in Baltimore it just cramped up and stayed that way for several months. Then it got much better in the spring (I think because of the heat) but the last month is back to being near unbearable and the constant pain is really getting me down. And like you said there is something new popping up each week. My lower back started to hurt this last winter. Now my shoulder is hurting on the INSIDE. So they sent me for more MRI's and that came with more bad news - they found a bulging disc above my surgery area, scar tissue, some degeneration in the facet joints next to the plate, now I have arthritis in my shoulder, the constant spasms are straightening out my spine AND they found 3 bulging disc in my lower back and one that is completely torn.

It is weird I have never heard of baclophen. I am definitely going to inquire about it with my PM doc. what are the side effects?

Mine was a car accident - on the hwy and a friend was driving. All of a sudden we flew forward and went into a spin at about 70mph. We crossed the fast lane and hit the concrete median head on, bounced off it and then was hit by a tractor trailer and slammed back into the median. All the hits were on my side :(. Miraculously we weren't killed. Turns out the car that hit us was doing about 110mph and clipped us in the rear passenger side as they were trying to weave thru traffic from the fast lane to the slow lane. It ended up being a hit and run and they never caught them :mad:. I cope by using medication and some herbal supplements, I have a home tems unit, I do meditation and pilates/yoga when I can. I used to be super active - white water rafting and bungee jumping, skiing, hiking - you name it. Now I do none of those things and probably never will again. Now I am lucky if I can mop my floor and not end up flat on my back for the next 24 hours. The soma and didaudid do not make me sleepy (and the dilaudid is not a high dose). But the flexeril will knock me out in 10 minutes so I use that at night. Also, I bought a temperpedic bed and that made a HUGE difference. I can finally sleep comfortably since it is like sleeping in a cloud and there is no resistance. My accident was in sept 06 and I have been dealing with it ever since. I am so happy to find this board - I had no idea how many people have the same symptoms as me - I thought I was a rare case but I see how many people have the spasms and it is alarming. I sort of wish I had not opted for surgery but I really had no choice and I was still worse off before surgery than I am now.

Sorry for the novel and thanks for sharing your story.
kellie
Hi Kellie,
Nice hearing from you. Wow what an accident we were very lucky to make it out of that alive. Then, you find out you have another bulging disc it's the pits. I was told by my surgeon the problem with these fusion surgeries is it puts so much pressure on the discs above and below the site. Never thought there would be any problems after surgery. But degeneration happens as you stated. Did they say anything about the bulging disc if it is pressing on the spinal cord? I guess I'm like you lower back and neck pain. If one doesn't hurt the other does.

The biggest side effect of baclophen is sleepiness. It takes about 2 weeks for your body to get accustom to the drug. I started baclophen in december for my leg spasms from my myelopathy and it help my shoulder spasms as well.

Oh I wanted to ask you about your dogs. I have 2 dogs a pompoo named Baby and a yorkiepoo (95%) yorkie named Buster. Buster is my dog Baby is my husbands'. Funny how they take to one person and still love the other. The dogs keep me so much company and gives me a reason to get up in the morning especially when your in so much pain. What breed are your dogs and their names?

Do you still have pain from that illness you had in your 20's and 30's? It is such a blessing to have doctor's who we can count on. Mine is my GP he has been wonderful to me taking on the added burden of writing all my scripts. The co-pays started becoming to much for me. The pain specialist saw him every month just to get scripts-now if I need an epidural for my lower back I will go then. The epidural is coming up soon. The neurologist told me there is nothing I can do for you. Now I get to go to the GP every 3 months instead of every month. I was getting sick of doctors.

So wonderful to have this forum. Nice to know we are not alone. Really exciting to travel for a living. Do you like your job? But doesn't sitting in those airplane seats for a long trip kill your back and shoulders?

Thanks for sharing.

Kathy
Hi Kathy,
Yes, we were very lucky. I am grateful, but it is still hard to live with the results sometimes. I know it could have been worse. My surgeon also told me about degeneration – but I figured I would be pain free for 10 or so years before I would need another surgery or the neck started having problems again. The disc is showing some signs of pressing on the spinal cord but they don’t believe this is the problem. But they also can't tell me definitively what IS the problem. Most of the pain stems from the shoulder and when it really starts spasming it pulls everything in with it and only then do I start to have neck pain. Another weird thing has been happening lately – my neck is ‘popping’. I mentioned this to my doc but she kind of just glossed over it. It doesn’t hurt but it is very odd and the sound makes my skin crawl.

On the baclophen would you be able to work a full time job? Does it last all day? what are the first 2 weeks like? are you just out of it and sleeping the whole time? I am wondering if I took it before bed if it would keep the spasms at bay thru the daytime. Being sleepy sitting at a desk would be difficult. But I am def going to ask my doc about this.

Your dogs sound really cute! Pets certainly make quality of life better. My dogs are great! They are what keeps me going. All of my family is on the west coast and when I am feeling bad the dogs are always there to snuggle and make me laugh. I have Cody and Stella. Both are rescues. Stella is 5 and I got her from the SPCA a few months after my accident in '06. I was having trouble getting Cody exercised and I figured I should get another dog for him to play with. Stella is 5 now and she is half Boston terrier and half jack Russell. She was abused and neglected and used as a breeder dog for a bunch of pit bulls. She is just a huge lover/snuggler and also the resident bug killer (and she gets small furry things in the yard too, much to my horror lol). Cody is my baby/best friend. I rescued him from certain death at 7 weeks old when my husband was dying from cancer ten years ago. He has been with me ever since and even moved to eastern europe with me for 2 years. He is half pit bull and half cattle dog. He is a major Frisbee dog and has been a super athlete his whole life – surfing, hiking, white water rafting, etc. I think part of my recent flare up has been due to stress surrounding him. He was diagnosed with cancer at x-mas. Had surgery and was pronounced cured. Then in April he was diagnosed with mast cell cancer (a very nasty strain of it) and he just finished his last round of chemo last week (3 months worth). By all accounts he is in full remission so I just keep praying I will have him around a few more years. The treatment has been very expensive, but he has been thru so much with me and has been there thru the hardest times in my life :angel:, so it has been worth every penny. It is going to be a major life event the day I lose him.

The pain I had when I was younger (from 14-34) was female issues. I saw specialists for 20 years and had many exploratory surgeries. Most docs told my parents when I was young that I was making it up. The pain was so intense I would black out (which I assume is very hard to fake). And the symptoms lasted for weeks out of each month. When I finally decided to have a hysterectomy at 34 the docs found more than 4 conditions and one that had caused my uterus to start eating itself (and I actually had holes in my uterus). You know it is bad when a renowned teaching hospital asks if they can keep your organ for studying lol. Once I had everything removed I have never had any abdominal pain since. I just wish there was a surgery that could produce the same results for my neck!

Ok, back to work for me – thanks for sharing!
Kellie
Hi Kellie,

Had a day from h... yesterday. I guess it's going to rain soon here in Jersey. The weather report says Thursday we will have thunder storms and rain. My body is a better weather forecaster than the news.

Do you have arm pain also especially one sided? For me, the upper arm outer portion is my worst area. I have deep aching pain excruciating at times. Everything for me seems to focus on my left side. My doctor tells me I need a whole new wiring system. For me a new body would do.

I too have the "popping" sound in my neck along with a "creaking" sound it happens for me when I turn my neck. How about you? Then sometimes if I turn my neck to far to the side I end up with a pinched nerve that takes days sometimes to get rid of. How much mobility do you have? I appear like a robot when I move must turn my body to talk to people. Never realized my 'ROBOTIC" look until I saw videos of myself. I know I have a loss of disc height and from the surgery we have some bone fragments floating around from the drilling so maybe it's has something to do with that.

The baclophen for me is taken 4x's a day. The initial effects keep you very very sleepy for the first 3 days-I don't believe you would be able to work then but everyone reacts differently. After that you must force yourself to stay busy physically and mentally for about 2 weeks and your body adjusts after that period to the drug.

Those babies of yours sound incredible. I have seen shows that portray dogs surfing with their masters. AMAZING! AWESOME! Cody and Stella sounds so cute. It is so difficult when they become ill they are our babies. Cody sounds like he has been through so much. Is he in any pain? Is he still active? Like you money is no object they are our children and what might help them we must try. My collie Buttons had uterine cancer. She was 14 when she developed the cancer. I was told chemo wouldn't help and when the disease reached her brain I had to put her down. She was the first dog I ever owned and never left my side. My Buttons and my Brownie are buried on my property in the mountains of Pennsylvania where I visit them often- a stone with their name on it marks the spot. Enjoy every minute you have with her now.

I to agree if you have surgery you should be better not worse. Glad your female situation worked out for you.

Talk with you later.
Kathy
:p Hi Kellie,

Had a nice day today playing with my toys. Arts and crafts are great. I am working on my Israel scrapbook. Boy how it brings back such great memories- walking where Jesus walked. Have you ever been there? Feels like your back 1000's of years especially in Jerusalem. Went with my church group and have this GREAT group shot in front of the Temple Mount that I'm scrapping to the page. Wow Africa and the Caribbean that sounds great and great for the neck with the low humidity.

I agree being around family sure does make a difference. As I was whining to my husband this weekend in my self-pity mode my husband who's such a saint kept telling me your not alone & I'll always take care of you. I was so touched. He spent the weekend rubbing my feet with pain cream. It will be thirty years in November.

California would be great for you weather and family. Takes a lot of time and work to move hope you'll have plenty of help with the boxes go slow. I to am going to move. I will be moving up to my place in pa. because I now live in a split level with to many steps. My place in pa has only one floor and much smaller. I don't know about you but my concerns are finding new physicians to treat me and going through my history. My myelopathy is not a very common disease.

Myelopathy means a disease to the spinal cord causing the signals to the nerves to go in a wrong pathway. Hence all the nerve pains, imbalance, shortness of breath(my phrenic nerve), extremity weakness and heaviness, tremors, pseudoangina ending in wheelchair and loss of use of your extremities depending on how fast your disease progresses. The cause is from my neck trauma the loss of disc height and compression placed on the nerves from a long term neck injury. Don't want to scare you but it is a possibility with anyone who has had neck trauma even whiplash. Guess it's just the luck of the draw. I had a mild case before the surgery and after the surgery the disease progressed 200% as per my surgeon after only 3 years out from my surgery. Don't worry doesn't mean everyone.:confused:

Tomorrow will see my 3 grandchildren haven't seen them in a month. Use to take them everywhere, sleepovers, play dates, and babysitting but can't care for them alone and my husband hasn't the patience with 3 little ones ages-2, 7, and 8. A real handful. Driving down to see them is difficult on those pain meds even though they only live 30 minutes away in Philly. I hate driving in Philly to a place with no parking facilities.

Did they explain your diet for diverticulitis? You need to stay away from seeds like tomatoes, sauces, heavy spices. The ER is such a bummer knowing you are always there for a long time. Glad it wasn't anything more serious for you. Diet really controls this illness. Stay hydrated.

Boy it sounds like you were quite active during a lot of those daring things I would have loved to try. I miss riding the roller coaster, bumper cars, and other rides at the parks it sounds crazy but I loved to do that. What do you miss most? Didn't you mention bungee jumping?

Does your neck hurt worst at the end of the day-like your holding up a bowling ball? Sounds corny but true for me. Moving to upstate pa-northeast pa 20 minutes from new york in the deep country-will be difficult for me in 2 ways very hard winters and not close to anything literally. I love country living been my dream to move to the country but I am 20 minutes away from anything. Scranton would be my closest major hospital 45 minutes away. That would be my biggest drawback.

Well got to go-talk to you soon
Kathy





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