Dr. Corenman, I don’t know if you will ever see this note, this is a follow up to a year old topic that I was asking you questions about. I was asking you what you thought about doing a D-trax surgery on my C6-7 pseudoarthrosis from the year 2003 and you told me that this was not the way to go for my pain and that you told me that I had Crappy Neck Syndrome and I definitely believe you!!!
I still find myself (this being October 19, 2016) I am still no further ahead with my Chronic Pain. I don’t know how much more I can take and still no diagnosis. The reason I am asking you this question is because I am so upset that nobody can find out where my pain is from. I am now going to a new Neuromuscular doctor because my last Neurologist sent me for a Nerve Conduction Test/EMG before he wanted to discuss the possibility of going in with the D-trax facet posterolateral cage fusion in the back of my neck to try and fuse C6-7 as he figures that is where my pain is coming from.He also says I have hypermobility at C4-5 and C1-2 arthrosis in addition to general fibromyalgia. We also discussed a C4-5 arthroplasty down the line if it makes sense.
I have told all of the surgeons that my pain radiates from my neck into my shoulders (trapezius area) down into the front of my arm into my wrist and my hands. I do get numbness and tingly often in both of my hands but mostly my right arm.
They eventually sent me for an MRI of my shoulder with and without contrast. The results were Minimal Articular side undersurface tear of the supraspinatus tendon. No full thickness tear. also Mild hypertrophic degenerative changes of the acromioclavicular joint. The neurosurgeon who sent me for that made absolutely no comment and the other surgeon that was basically going to operate with him all of a sudden said that basically that is where my pain was coming from and cancelled the surgery without even telling me (I believe just to get rid of me). OK so now the other surgeon(The main Surgeon who is a Complex Surgeon who specializes in “Resconstruction Surgery” decides to do the d-trax surgery and I had the date for the surgery and it was cancelled and I was waiting for a new date and I never heard back from him!!! I decided to go to a new Neurosurgeon for another opinion that I know is familiar also with this surgery and before we decide to go through with this as he agrees that this could work but was still skeptical as where the pain is coming from decides to send me for an EMG of my “Upper Extremities” Bilaterally and it comes back with “Myotonic Discharges” in all muscles tested which were Supraspinatus, Infraspinatus, Deltoid, Biceps, Triceps,Brachioradials,PronTeres,FlexCarpRad,ExtCarpiBrev,ExtDigComm, there were a few more but these are the muscles that showed the myotonic discharges. The report says that the EMG was abnormal and that the electrodiagnostic evidence myotonic dystrophy. No electrodiagnostic evidence of a cervical radiculopathy, brachial plexopathy, compressive mononeuropathy or peripheral polyneuropathy. It says also, With the Myotonic dystrophy it is hard to detect any denervation to diagnose a radiculopathy. Now the surgeon sent me for the EMG and it says Cervical disc disorder with radiculopathy. As far as I understand because of the myotonic discharges he could not see a radiculopathy. I am absolutely fed up with everything, so the EMG doctor was basically telling me that I had some sort of genetic disorder like a myotonic muscular dystrophy and I said that I didn’t have anything like that in my genetics. Both of my parents are diseased and grandparents on both sides. He said, well you got it from somewhere. So then I make an appointment with a Neuromuscular Science specialist and she tested all of my muscles and said they are too strong to have Myotonic muscular dystrophy and I told her I think it starts in my neck and she just doesn’t want to talk about the possibility that this could be coming from my neck. I believe she is a specialist in the Dystrophies/Myopathys, Channelopathes etc. department and right now she doesn’t want to look “out of the box”. She wants to concentrate on the myotonic discharges. He put the needle in my muscles and the noice was unbelieve as the call it, sounds like a “dive bomber”, I absolutely heard them!!!
She said it could be a channelopathy disorder and wanted me to do the test over, the EMG with upper lower and back done. Now she wants me to wait. She also did the blood test which I have never had done until last week for the I believe it was CPK protein for my muscles, it could possiblity show muscle disorders or dystrophies and it came back normal.
In 2001 I had an EMG in my left arm, it showed myotonia congenita and I have had 2 EMG’s and an MRI in my back showing, Radiculopathy disc bulging, degenerative discs, disc herniation, but it is my upper extremities and neck I am worried about. I do have pain in my thighs, hips and legs but it is my neck problem that I am trying to deal with. My neck, shoulder and arm right down into my hands is the issue where my pain is the worse. My left side aches but it is my right side mostly that is the problem. I am so so sorry to bother you, but my life is just a mess, always in pain for the last 20 years and no relief. Is there any tie that you can think of from my neck pain to my shoulders with the myotonic discharges. I have probably really overstepped my boundaries in sending this to you Dr. Corenman but sometimes these problems might even help with a case that you might have someday with one of your patients. Thank you so much and I hope to hear from you soon. Lynda Hurrelbrinck