Longbranch

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

Dr. Corenman,

You have no idea how much I appreciate you taking the time to answer my questions. I have been to so many doctors and so many places to get help and I find myself in the same pain as at the beginning of this terrible ordeal which was the year 2000.

The reason I am telling you this is because you said that (and I tend to agree with you) that the pseudoarthrosis might not be where my pain is coming from? Also that I need to have a work up done to find out where it IS coming from. I have seen 6 Neuro/Ortho surgeons so far that cannot tell me “with confidence” where they think my pain is coming from. 1 Orthopedic Surgeon is pretty sure that if he goes through Posterially and does the surgery to fuse 6/7 that it will take away my pain. He seems to think it will be pretty simple, open me up, just scoop some marrow from my hip and onward and upward, well to me it is not that simple!!! It has been too long!!My chiropractors are so worried that it just isn’t that easy!! I just want to let you know by giving you a compilation of my reports together (leaving out really the pseudoarthrois because I know I didn’t fuse and have the proof of that).

The Wayne State University Doctor says that if the Dtrax doesn’t work that he wants to try to replace the disc at C4-5 to see if that will take my pain away. I have read quite a few of your reports and am nervous that it may not be the answer either. Dr. Corenman…if this is unusual for someone to give you this much information or ask for this much help, PLEASE just disregard my book that I have just written to you.

I might be 64 but I am just too young to have gone through all of this so early in my life and I want my LIFE BACK. I want to play with my grandchildren and enjoy them, I don’t want to have to say, “oh before careful near Grama, remember my sore neck”, with this comes no energy and I just try and research constantly to be my own advocate and try to get some help for myself. Could you please see if you could see anything that comes to mind in looking at my x-ray compilation.

I would be forever greatful and so would my family, they have seen me struggle so much and they want me to feel better also!!!
I am going next week to one of the two neuros. that wanted to do the Dtrax to get an appt. to start having some facet blocks again maybe in different areas. The TMJ doctor that did my consultation said that he can tell that the way my jaw is placed that I have both TMD and cervical disorders and I do get my neck, spine and back adjusted every week and my jaw by my chiropractors.
I am sorry for this long letter!!!

The first Neurosurgeon (who did my surgery… who is a top Neurosurgeon in Michigan) that said “I can help you” (I was desperate and still am)I jumped at the word HELP and 2 weeks later was in the hospital having an Anterior Fusion and disc. on C5/6 and C6/7 and never got any relief at all!!

The chiropractor that was working on me at the time, the first appt. he told me that he didn’t even need to get out of bed to fix me up…He looked at me and told me that “MY WHOLE SPINE WAS DISLOCATED” and he proceeded to adjust me so aggressively that I laid there screaming for a few minutes as I didn’t know what was going on. Then he reefed my neck out that day pretty hard and adjusted it!!!! I guess he thought he had fixed me!!! I never felt any better after going to him for over a year and buying all of his Standard Process products. He did find out that I had Epstein Barr virus and CMV but said my neck didn’t look that bad but I went to this Neurosurgeon (and the chiro/homeopathic) even checked him out for me and he told me he could help so I let him do the surgery. I was in pain for over 3 years by then!!!

When I woke up in recovery I didn’t feel any different, I had a headache all together for 5 years and had gone to several neurologists and had a cat scan of my brain that was normal, have a small node on my maxillary sinus that is still there, so many reports, no cause for my headaches, Neurosurgeon thought my headaches would go away. I woke up with same headache, same pain in arm, shoulders, face pain and at this time my arm pain in 2003 was left sided. I had EMG testing done before surgery and they told me then I had Myotonia Congenita which everyone ignored because nobody had ever heard of it!!! They ended up putting me on Topomax for seizures which I am still on and keeps my headaches at bay!!!

I can’t tell my whole story because I would have to write a book. I am on my 7th chiropractor now (2 of them Family Practice who are wonderful). They both say I have a “Military Neck”, Forward Posture, Dowagers Hump, Right sided pain in shoulder, small tear in rotator cuff, arthritis in right shoulder, numb ring and pinky finger which I believe is ulnar. Kyphosis, just found out after years of facial pain that I have bad TMD and they want to make a splint!!!

I am so scared to have another surgery because I have been told that maybe I should live with this pain because I might be worse off afterwards, well I couldn’t be worse off than I am feeling right now!!!

C6/7 did not fuse but my new Neurosurgeon who is from Wayne State University who specializes in complex spinal surgery is the surgeon who wants to try this Dtrax system. After listening to your advice I believe I am going to hold off on having this done right now. You advised me to have facet blocks, nerve root blocks and possibly a discogram. In the early part of 2003 before my surgery in May I had Facet Medial Branch Blocks under Fluoroscopy left side only as it was mainly on the left at that time at C3-C6 and med. branch blocks bilaterally at C2-C3 in June and July of that year also and lots of shots across my shoulders. Also in July I had a Greater Occipital Nerve block, unfortunately I never got any relief from these injections. After surgery still not having any relief they start doing Nerve ablations, first one side and then the other a few weeks apart. Unfortunately they never worked on me properly or never lasted very long, they worked like an irritating burning sunburn sensation, I had 8 sets of them and then stopped and gave up on them. Have been on the DRX9000 machine 42 times and never felt any relief.

My Neurosurgeon that I am working with now that has sent me to this Ass. Prof. at Wayne State is not sure what he thinks, has read my cat scans, flexion ext. moving xrays mri’s of 2010,2012,2014, 2015 and to put them all together he sees and other neuro and ortho’s :

First of all, I brought in my x-rays before my surgery on Nov. 29, 2003 and he reviewed them and found at

C5-6 and C6-7…Disc. Bulges without significant herniation!!! That is what my original surgery was based on!!

Now to go on!!!

C1-C2 moderate degenerative changes seen at Odontoid process and the arch of the C1 junction (irregularity at the tip of the odontoid)..(arthritis)

C2-C3 no evidence of herniated disc, spinal canal stenosis or neuro.foram. enchr.

C3-4 Anterior osteophytes are seen marginally on x-rays

C4 There is an Anterior osteophyte projecting from the body of C4 (cervical spine view)

C3ONC4 Shows there is mild anterolithesis of 3mm (flex ext x-rays also have moving x-rays chiropractor)

C4-C5 Anterior Osteophytes noted Marginally as seen on several x-rays and scans and Cat Scan,flex.ext.

C4-C5 Small Right Paracentral Disc Protrusion with Mild Flattening of the Thecal Sac

C4-C5 There is minimal broad-based disc bulging without significant stenosis or neuroforaminal encroachment. (These two could be the same opinion from different scans and different doctors?)

C4-C5 A small spondylyotic ridge is seen with minimal effacement of the anterior thecal sac. No evidence of myelographic block is seen (minimal degenerative disease is seen) This is from the myelogram of 2005

C4-C5 Bilateral foraminal stenosis, right side greater than left (MRI 2010)

C5-6 There is broad based disc bulging at this level with minimal effacement of the anterior thecal sac. There is no significant stenosis or neuroforaminal encroachment. (MRI of 2015) This disc was one that I had fusion surgery on in 2003 and is definitely FUSED!!!!

C7-T1 There is no evidence of herniated disc, spinal stenosis or neuroforaminal encroachment. MRI of 2015

C7ONT1 There is minimal Anterolisthesis of C7 on T1 as seen on flexion view only.

C6-C7 – are definitely not fused (Pseudoarthrosis) and are seen on Cat Scan of 2010, 2012, 2015 and MRI’s
there is a small amount of back out of the screws and halos seen at C6 an C7

There is so much more I could say, I know there is not much here but I have to keep on going and hope that someone sees something that gives me a bit more hope!! I was really thinking that the Dtrax could work but in hindsight that small implant would be too much of a miracle to take away all of the pain that I have!!!

Thank you so much Dr. Corenman, I appreciate your advice on the Dtrax and I believe that the surgery was postponed for a reason so that I could write to you on your forum and get your expert and excellent opinion.

Take care
Lyn in Michigan