So, results of MRI of my cervical spine came back--
 

--and the longstanding degenerative disc disease and osteophytic complexes I have from C3 all the way to C7 have progressed, with particularly severe foraminal narrowing at C5/C6 (C6 nerve root) and C6/C7 (C7 nerve root). There is also now moderate central canal stenosis at those levels.

This is certainly consistent with my current burning hand, arm, chest, and shoulder/scapular symptoms, which you may remember started March 15th after a weightlifting session went awry--although we still don't know why I have facial symptoms as well. Hyperesthesia--the delayed overreaction of pain nerves to generally non-painful stimuli--IS a hall mark of compression of the spinal dorsal root ganglia, which I apparently have, but it can also occur in more peripheral conditions, and given my unusual history--a full body acute onset small fiber burning neuropathy on April 11 2013 (happened in hours), with eventual healing and re-enervation, though probably in patterns that are different than they were prior to the onset-- I wonder if some sort of double crush phenomenon is going on. Moreover, I suspect that given my unusual history that my dermatomal sensory distribution is far from the classic map at this point (perhaps the C3/C4 nerves account for more of my facial symptoms).

There doesn't seem to be frank cord compression (yet)--though I wonder if it happens it certain positions, which could explain the more widespread, outside-the-dermatome symptoms (after all, the MRI was done reclining). I don't have L'hermitte's sign--the electric shock down the spine upon chin flexion to chest.

I'm being seen by my old crew at Cornell, but beyond the gabapentin have not been recommended anything beyond physical therapy and the cervical strengthening exercises, which I am quite familiar with and have been doing. But given lack of improvement in almost two months, I'm wondering if it's time to schedule a surgical consult.

Hi Glenn,

I have an outstanding spine specialist at Weill Cornell: Dr. Victoria Chen Harrison at the Spine Center. She is conservative about surgery and very smart.

I have pretty severe degenerative disc disease, but have not thought to get it checked in light of my PN. Most of my symptoms are automatic......and I had an acute onset too, though with other factors. Do you think I should get my spine checked as well?

Thanks!

I understand the difficulty of this decision. Recently I had to accept that it was time for me to schedule a surgical consult. I'm trying to focus on the fact that a consult is just that and what I do with the information is my decision. I already have the Mri's to bring so it's relatively painless.

I had a muscular skeletal sports medicine doctor who I've gone to for numerous sports related issues and respect to help guide my doctor choice. He suggested I see 2 doctors, 1 aggressive and 1 conservative and then compare. I have just scheduled my appointments.

Because of personal experience I think it's important to also see a doctor that isn't a neurologists for structural causes. My MRI's, although plenty troublesome, were not enough for the neurologist to confirm structural reasons being the cause of my symptoms. Although my cervical results are very similar to yours, because I didn't have L'hermitte's sign he said it wasn't the cause. After 16 months with so many tests trying to find a cause I went back to looking at my spine, lumbar specifically as the burning, etc in my legs are the biggest problem and that's why I'm exploring all options at this point.

I am convinced that for me certain positions contribute greatly to my symptoms. I brought it up and because of my spondylolisthesis they did a flexion/extension xray which was quite telling. I realize yours is cervical and I'm talking lumbar but perhaps there is a way to test this?

I hope this helps.
carol

Personally, I think a consult is warranted at this point. You are well versed in this field so you would be able to have an intelligent conversation about the pros/cons to any approach considered in regards to surgical intervention.

You can't go wrong with a simple consult...so all the playing cards are on the table. There is no commitment with a consult...just information/knowledge.

So sorry to hear about the progression. Wishing you the best in your next steps toward finding relief. Please keep us informed as you ponder your options.

Thanks, all.
 

I have often said that one of the problems with all these neurological symptoms is that any symptom that can be produced by spinal issues can be exactly matched by those caused by more peripheral, systemic issues, so that's it's difficult sometimes to tease out exactly what is causing what (though in the case of spinal causes the symptoms are more regional--sometimes; it would be hard to know what was involved if someone just had foot symptoms, for example, without some pretty extensive testing).

We know in my case I have this whole acute onset small-fiber history, and I do have spinal issues superimposed on that. Makes me quite the complex patient. And, as I say "nobody is excused from being co-morbid".

According to my quicky research (accomplished during this post, LOL), Dr. Harrison is a physiatrist at Cornell, and might well be worth consulting--I do like physiatrists generally, as they usually come from a multisystem, interdisciplinary approach. So thanks for that, SylvieM--definitely worth a call.

Physiatrist!
 

Thanks to your post I just learned the doctor I had referred to in my post is a Physiatrist. When you described the reason you generally like them I realized the description fit my doctor. I got online and sure enough he is a Physiatrist. I've been seeing him for years and never knew. Thank you Glenntaj! You teach me so much.

Thanks glenntaj for sharing your experience - I'm about to go for an MRI tomorrow for left shoulder and cervical spine - so reading a first hand account was useful. I wish you all the best for finding the right treatment.

Physiatrist - I had to google that one - not a term I'm familiar with but it's exactly what it sounds like: "a medical doctor who specializes in physical medicine, rehabilitation, and pain medicine. These spine specialists focus on the body's musculoskeletal system, which includes bones, joints, muscles, ligaments, tendons, and nerves.".

So I then searched "physiatrist NZ" to see if I could find any in my country - the only thing that came back was "psychiatrist". I guess we have more mental health problems here than we do physical ones :D - clearly not a specialty deemed important here - or maybe it has a different name? Does anyone know?

Hi Glenn,
Thanks for your health update. You amaze me with your depth of knowledge.

I am probably late to the party on these thoughts but, I was as wondering , did you ever investigate infectious agents as a cause for the sudden nature of your body wide neuropathy?
I have a long history of odd neuropathic issues from Lyme Disease and knowledge from years of research, great docs and support groups. Perhaps you know this already but, Sudden onset of neuropathy can be a symptom of Lyme Disease. Not all tick bites produce this symptom, it depends on what strain of the bacteria is in the tic ( there are more than 300 different strains producing a very diverse list of symptoms).

Anyway Glenn, Lyme was the first thing that came to mind when I read that symptom. I can't tell you how many folks I have met who spent years(decades) bouncing around the medical community in search of answers for their often bizarre and life altering neuropathy.
Just food for thought.

Also wanted to mention, I, too, have several painful issues emanating from my cervical spine( small herniation, DDD, osteoporosis, compression, neuropathy/numbing and pins and needle down my right shoulder and arm.) Surgery has been suggested to me on several occasions as well but, I have been managing with ESI's (epidural steroid injection) and a variety of other injections.
I am a big baby when it comes to surgery and will do just about anything to avoid it and have managed this way for 6-7 years.

Wishing you the best Glenn as you investigate solutions.
Please keep us informed.,
My best,
Diandra

When I googled Physiatrist auto correct changed it to psychiatrist. On the American Academy of Physical Medicine & Rehabilitation website I found this, "Physical Medicine and Rehabilitation (PM&R) physicians, also known as physiatrists.... treat a wide variety of medical conditions affecting the brain, spinal cord, nerves, bones, joints, ligaments, muscles, and tendons."

According to my quicky research (accomplished during this post, LOL), Dr. Harrison is a physiatrist at Cornell, and might well be worth consulting--I do like physiatrists generally, as they usually come from a multisystem, interdisciplinary approach. So thanks for that, SylvieM--definitely worth a call.[/QUOTE]

Hey Glenn,

Just returning the favor (Glenn referred me to my latest neurologist). Harrison is also a dynamite acupuncturist, studied it at UCLA.

Have left a message for Harrison--
 

--as well as a couple of surgeons at Cornell and one at NYU that had been recommended to me by a choir-mate of my wife's (who has had two good cervical operations done by the guy).

Of course, they all want records and images sent--but that's easier nowadays with electronic media; I just have to get a copy of the images for the NYU doctor.

Regarding the Lyme disease possibility--I did go through the ELISA, Western Blot, and eventually Igenex testing back in 2003 and nothing suspicious for Lyme or other tick borne diseases ever showed. Of course, we do suspect in a molecular mimicry autoimmune process that there was an infectious prodrome, but it could have been anything from a bacterium to a common virus--the key, presumably, is that it would have to have a chemical composition and shape similar to that of my small fiber nerves to result in my immune system to continue to attack.

I too have severe deterioration of my cervical spine, which was first found 28 years ago and has steadily worsened.

My neurologist has conducted Electrical conduction and muscle tests of my arms and hands. He found a 'non responsive' area in my cervical spine, but no nerve damage in my arms and hands. This was two years ago.

If or when there were nerve damage in my arms or hands I would consider surgery, otherwise I rely on Aleve, Gabapentin and prednisone to reduce inflammation and nerve pain.

I have small fiber neuropathy in my face, lips and tongue which at first my Neurologist thought might be caused by nerve compression in my cervical spine. But it isn't.

Trial and error and false leads to dead ends are frustrating. But this is part of having chronic conditions and complex conditions.

Our support groups are life lines for us.

Hugs, ElaineD

Hi Glen,
I have some of the same spinal symptoms and I have had pain in left shoulder and in my arm and hand. I've had it on and off for years. I have a powerful dog and when he pulls me I start getting the pain in my neck going down to arm. I take voltaren and I also use magnesium oil on my neck as tight muscles are always involved and also heat. Once I must have had a motor nerve compressed as I felt for like 15 minutes that my hand seemed foreign. That was 5 years ago and only happened that once. I saw a neurosurgeon in Sydney and he said no surgery was warranted for pain only motor function issues. The worst for me is c5/6. Pain in your chest may be from thoracic spine.
If you remember I had a lot of facial pain at one stage and that went away too. I personally think that once you get PN with body wide symptoms though the nerves may heal other things may disturb them in the future such as foods, meds, glucose, viruses,thyroid, hormones and injuries. They are just never actually normal again. But given enough time there could be healing. Sometimes it has taken many months but I have improved from spinal issues. Best of luck if you see a specialist.

Thanks for the input.
 

I'm still experiencing similar symptoms, though the severity changes considerably day to day or sometimes even hour to hour. Certain activities such as driving (which I have to do a lot of) and keyboarding (ditto) seem to ramp things up--not all the time, but often.

I did a consult with a well-respected spine neurosurgeon at Cornell who was pretty engaging as surgeons go. His biggest concern is that there is some slight weakness in some of the muscles of my right arm ennervated by the C6/C7 complex, and he did think there may be some brachial plexus issues compounding it. (He also reviewed all my previous small-fiber history.) He ordered both thoracic and lumbar MRI's to see what is going on there, though he does agree that my re-enervation post acute onset small fiber may have resulted in some weird reconnecting that doesn't correspond to most people's dermatomes; he said he's seen some C7 chest involvement in the past.

Bottom line--six weeks of intensive physical therapy with traction and then a follow-up to see if symptoms have improved; if not, and there is still weakness, a serious surgery discussion. And, of course, we'll see what the other MRI's show.

Just to add info on another possible cause for shoulder/arm pain: the MRI I mentioned in my earlier post showed that I have osteophytes (calcium nodules - associated with osteoarthritis) forming under my left AC joint which are pressing on the tendons.

They weren't visible on the x-ray but showed on the MRI - prior to the MRI consult I was convinced the pain and numbness were due to nerve entrapment in the brachial plexis area. However the numbness and muscle atrophy in the same hand has been attributed to the neuropathy.

Glenn - you mentioned cervical spine exercises for strengthening - do you by any chance have a link to any sites that show or list these exercises. Any advice would be much appreciated thanks.

Here are a few fairly comprehensive sites.
 

I do prefer ones that not only describe the exercises but also show pictures.

Neck Exercises for Neck Pain

Video Series: Exercises for Cervical Spine Degenerative Disc Disease - Learn 4 Neck Stretches and Exercises