Hi, I am new here and curious. I will start by providing a little info about myself. I am 44 yrs old and
In Jan 1996 I was in a car accident. and ended up having a C5-6 fusion. My spinal cord was being compressed at the time. I took several years after to begin to feel 1/2 way normal again.
I have lived with pain ever since.

this past year I was got the Dx of FMA (fibromyalgia) from pcp and pain specialist.

I happen to work for My Neuro-(Who was my previous NS as well and trust hm with my life- have 2wice now) and I asked him some ?'s which lead to mulitple scans/test being done- Doc said pretty much my neck had done the Domino effect since prior surgery. showing I had:
DDS, Kyphosis, osteoarthritis, Foraminal narrowing,Radiculopathy,stenosis
Needless to say. I was a Mess.
with the outcome of in Dec of 2008 I underwent a 5 level ACDF (Anterior Cervical Disectomy,Laminectomy with fixation) I now have a neck that looks like a bicycle chain- with 6 plates and 12 screws- He also corrected the Kyphosis that was prestent and drilled / chisled out the osteophytes- bone spurs and widened the foramial that was narrowing (Very big surgery)

I now am 3 months Post op- with 2 months P.T. and on my way to a pain specialist @ the spine and physical rehab. I went back to work Pt after 2 months and it is proving to be a major challenge.
I have a lot of headaches, burning and pain through my shoulderblades- shoulders, right clavicle, I still am stumbling over my own feet and drop things left and right. I do not sleep well if at all. and have major pain in my lower back, as well as my hands and feet are going to sleep on me again.


HAS ANYONE else had anything close to this type of procedure and what was the outcome.
My NS says " You It will get better"- he is taking every step to assure this) and I trust him.. But I have to wonder if indeed the FMA is there and this is a contributing factor to the healing and pain- Nothing seems to work for.

and after never fully recovering from the 1level fusion- I have a bleak outlook as to recovery from one so complicated-
and I wonder what are my chances @ getting SSI if I don't
I am getting very frustrated and discouraged

ANy insight would be apprieciated
(sorry this is so long)

Hi,
You mention the car accident and the c5/6 and continued pain from that and also the -
[I have a lot of headaches, burning and pain through my shoulder blades- shoulders, right clavicle, I still am stumbling over my own feet and drop things left and right. I do not sleep well if at all. and have major pain in my lower back, as well as my hands and feet are going to sleep on me again.]

Some of those {bolded} makes me wonder about possible thoracic outlet syndrome...{TOS} esp if your MRIs and such are not showing any anomalies or issues now.
here's some info about it-
http://neurotalk.psychcentral.com/post388-1.html
and our TOS forum link -
http://neurotalk.psychcentral.com/forum24.html

Thank You for the info on the TOS.. I had not heard of this and I work in a Neursureons offic hmm. Would'nt he be aware of this and know to look for it? As far as I know My CT, bonescan, Mri, nor Xrays showed this or not that he mentioned and he pointed out everything else that was wrong. Does this not show up on the films?
I will visit the links you provided and again thanks for the info.


[QUOTE=Jo*mar;486776]Hi,
You mention the car accident and the c5/6 and continued pain from that and also the -
[I have a lot of headaches, burning and pain through my shoulder blades- shoulders, right clavicle, I still am stumbling over my own feet and drop things left and right. I do not sleep well if at all. and have major pain in my lower back, as well as my hands and feet are going to sleep on me again.]

Some of those {bolded} makes me wonder about possible thoracic outlet syndrome...{TOS} esp if your MRIs and such are not showing any anomalies or issues now.

I have a similar story.

Car accident in 1991, C4-5 disc/fusion + titanium plate 1993, dx cord compression at C5-6 1997-disc/fusion (no plate this time), dx Myasthenia Gravis and they thought fibromyalgia (rheumatologist reversed later) 2004 the C6-7 fusion w/plate in 2004. I have a congenital fusion at 2-3 as well. My 5/08 MRI reads much like yours did prior to your last surgery, except they thought they saw some cord compression again. Fortunately for me, a surgeon ordered a myelogram (due to the artifact from the metal in my neck he wanted the "definitive look"), and it showed no compression and that I am currently stable - subject to change as there are osteophytes, stenosis, etc.

I too have suffered with pain since prior to the C5-6 issue, and curiously, my symptoms are the same as before. It was always assumed my non-MG symptoms were due to neck issues, but a new neuro I just began seeing mentioned polyneuropothy, of which there are many, many types and when I looked them up one in particular matched every single non-MG symptom I now have and have had since before the "cord compression".

The pain in your hands and feet, the stumbling and numbness, burning pain, etc. can all be symptoms of a neuropathy. My symptoms include a swimming head on occassion, and an inability to maintain my balance amoung others. I'd never pass the drunk test walk, and with my eyes closed and feet together I CANNOT keep from falling over. On my recent visit to the neuro, I was hyperreflexive at the knees, and had no vibration sense (tuning fork) in several locations. At this point I am quickly loosing muscle mass in my hands, places in my legs and in my feet. She ordered a blood draw for B12, Vit E, and Copper deficiencies, all of which can cause PN, and often show up with PN.

In my case, I had an exacerbation of both the MG and PN symptoms immediately following the coiling of an unruptured aneurysm in my brain. The coils were platinum, and I have since found that platinum chemo is contraindicaed in cancer patients with a particular neuropathy. Of course, I didn't know about this PN until AFTER the coil.

You may want to visit the Peripheral Neuropathy forum and/or do some research on the net about poly neuropathies, especially since your problems are on both sides of your body. I would encourage you to sit and think about ALL your symptoms and when exactly they started, if any resolved or resolved and returned. The pain can often be distracting you from other symptoms in my experience, until those symptoms become a bigger nuisance than the pain!

I have so much metal in me now; dental fillings, titanium plates, titanium wiring from the thymectomy (open chest surgery), now the platinum coils and stint made of titanium I think, that I'm beginning to believe I am sensitive to some or all of them. The platinum I have a direct link to a sensitivity to (blind spot in my R eye immediately following the coiling, that was not a stroke or any other easily recognized problem per my ophalmalogist, but I have discovered that people with this PN do have this reaction to platinum at times).

MrsD on the PN forum found that they treat the platinum toxicity in cancer chemo problems with Acetyl L-Carnitine and suggested I take 2grams (4x500 mgs spread through the day) per day. It does seem to help me.

I know you like and trust (not to mention, work for) your neuro, but you may want to see another for second opinion. Don't feel guilty, and he/she SHOULDN't take it personally - but it is your body, and perhaps you need a second look. Try to find a good neuro-muscluar neuro. I've learned a hard lesson, with surgeries I may never have needed and a probable dx of a disease that at this point has gone too far to stop (if they catch this one early, they can - if it goes too long, they can only hope to slow it).
Treatment is only good if it's the right treatment for the right condition, so you need to get a definative answer if at all possible.

I wish you lots of luck and hope you acheive some relief of pain soon. I know that feeling all to well!