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slipnslide
02-04-2007, 08:36 PM
To give a brief history, I had no pain till an MVA in 11/05. Went though conservative care prior to surgery then had ACDF C5-7 in 6/06. Woke up from that surgery with hernia next the the left hip graft site and had that repaired 3 weeks later. Continued pain in neck, shoulders, arms, butt bones, backs of thighs, and tingling of bilateral hands and feet (same as before surgery). Was told it's expected post-op and would subside, but it didn't. I went for 3 weeks of PT before the Physical therapist sent me back to my OSS because of increased pain. Also, during pre-op testing my WBC's were elevated and I was sent on to a Hema/onco who did extensive blood testing, bone marrow biopsy, and DNA test for Polycythemia Vera. I did not have the JAk2 (?) chromosome/gene to give a definite diagnosis of PV, so I go back to the Hema/Onco every 6 months for monitoring. At the last visit in 12/06 my WBC was 18.6. Oct. '06 hernia type pain returned and CT showed swelling around the nerve by hip and hernia repair and have had 2 RFA's done to try to allevaite the nerve pain.

I was sent for another EMG/NCS in 11/06 which stated:

Summary and Findings:
The bilateral median and ulnar sensory nerves revealed prolonged peak latency, normal amplitude and decreased conduction velocity. The bilateral radial sensory nerves revealed borderline prolonged peak latency, normal amplitude and normal conduction velocity.

The bilateral ulnar motor nerves revealed normal distal latency, normal amplitude and decreased conduction velocity across the cubital tunnel w/ a drop of > 10m/s.

To assess for polyneuropathy third limb sensory and motor nerve were tested (right peroneal motor and sural sensory). These were WNL.

Monopolar needle EMG was performed in selected bilateral upper extremities, innervated by C5-T1 nerve roots inclusive. No spontaneous activity was seen in any muscles tested in the form of fibrillations, positive sharp waves or fasciculations. Voluntary motor unit morphologies are otherwise normal.

Impression: Inconclusive study. There is new evidence of global sensory slowing in the upper extremities, however the slowing is more pronounced for the median and ulnar nerves and more likely related to CTS and potentially Ulnar Neuropathy at the elbows. The lack of slowing in a third limb (RLE) reduces the likelihood of polyneuropathy as a source. There is no evidence for acute cervical radiculopathy on EMG.

I was sent for new MRI of the neck in 12/06 which showed some uncinate hypertrophy at C3/4...MRI that was done back in 2/06 showed bulging disc at C3/4:confused: .

I was then sent to a hand/upper extremity surgeon who diagnosed me with bi-lateral carpal tunnel but believes the problems with the ulnar nerve were neuropathic and being caused by something between the neck and shoulder region. He sent me on to a Neurologist.

The Neurologist's report reads:
Physical Examination: Outwardly she doesn't appear to be in any significant discomfort. Mental status and cranial nerves are normal. She has a trigger point in the right cervical paraspinals. Gross strength and fine motor movements is normal throughout. There is no extension beyond the upright of her neck secondary to pain. Light touch sensation causes tingling all over both hands but is most significant in the thumb and 5th fingers. She has diminished left bicep and brachiordialis reflexes other wise symetrical. Gait is normal.

Significant laboratories have show normal B-12 levels and normal thyroid function.

I reviewed a repeat MRI of her neck from 12/15/06 which shows surgery as described. I don't take any significant foraminal stenosis or spinal stenosis.

Nerve conduction study is most recently done on 11/15/06. EMG of upper extremities was normal. Sensory nerves reportedly showed diffuse slowing.

PLAN: Check serum protein electrophoresis. Outside of that I don't have any recommendations.

The serum protein electrophoresis test came back within normal range. The Neuro suggested 5 different things it could be but was taking shots in the dark and told me he didn't know what to tell me or recommend.

Anyone have any clues, comments, or suggestions as to what any of this could be?

Thanks,

Kim

lobelsteve
02-04-2007, 09:02 PM
Send me or post the waveforms from the NCV sensory studies.
These may be falsely prolonged latencies due to a number of reasons.
Sounds like a fairly typical case of "something ain't right with you" syndrome.
Nothing $100,000 in labs could not diagnose. But getting an answer may not help get rid of the symptoms.
Where in Georgia?

Mark N
02-04-2007, 10:07 PM
Sorry you haven't found an answer yet. Unfortunately it may take more testing and a different outlook. When I was struggling with my lumbar my NS couldn't find alot wrong but going to my OSS the trouble was diagnosed and my fusion took care of my pain. You may just need to see another doctor to get a better read on your problem.

slipnslide
02-04-2007, 10:52 PM
Mark,

It seems my OSS was not sure what it was and he's the one who sent me over to the hand/upper extremity surgeon to see if he knew what would be causing these problems and test results. I don't go back to my OSS until I'm done with these RF's that the OSS has sent me for in the neck. My PM had a copy of the EMG/NCS faxed to him by my OSS's office this past week but I have not had a chance to talk to him yet and don't go back to him until March 1st for my follow-up visit for the Facet RF's of the C4/5/6/7.

I'm just at my wits end with having pain one day that is tolerable while taking just the Ultracet and then the next day it just knocks me off my feet. I just want my normal functioning body back!...lol:D

I really think these doctors are about to give up on me and stop looking for an answer, and if that happens, that will be devastating for me. I'm only 42 (to be 43 in 4 more days) and lived my entire life with blinders on, not knowing that people lived with this kind of pain daily. Call me crazy but I miss lifting manholes and shlepping through sewer water and swamps and I'd give an arm and a leg to be able to do it right now without an ounce of pain!:)

Kim

slipnslide
02-04-2007, 11:28 PM
Lobelsteve,

I know these images are not the best quality. I had to convert these from fax images to jpg's.

Also, I'm in north metro Atlanta.

March 2006
544


Nov 2006
545


Nov 2006
546

Mark N
02-04-2007, 11:44 PM
Kim, I know how frustrating the pain is. I started dealing with serious pain and spinal issues when I was 31, until then I just dealt with a chronic "bad" back. After 14 years of surgery and struggling with pain that couldn't be solved with surgery I went on disability at 48. I loved coaching football and always thought I would continue until my 70s. It is hard to give up the things we love even if others don't recognize the feelings we have for our jobs.

I hope one of the doctors can find something that will work for you. It would be nice to hear that you are able to return to work and have very little pain. If you have to have surgery maybe it will get you back to work, at least I hope so. Hang in there and push those doctors to find the cause of your pain. Don't let them give up on you or find someone that won't give up.

slipnslide
02-05-2007, 11:11 AM
The fax images were of poor quality but I did my best scanning them, sorry if they are not clear.:)

curiousforever
02-05-2007, 01:17 PM
I grew up in Stone Mountain!

I know what you mean about missing things. I miss working, doing what is supposed to be MY housework.

Pay attention to what you do with your hands when you go to sleep - ask your wife/so if she has seen you curl your wrists. (kind of like fetal position)

If you do - you should try to retrain yourself to lie with your wrists and hands flat. That could be part of the reason for the ulnar and/or carpal tunnel nerves to have this problem. I had ulnar nerve problems in both arms, and carpal tunnel in both. The first time I remember having problems with it - I was pregnant and it was chalked up to curling my wrists. I didn't have problems again with them for a few years. Only had surgery on the ulnar cause I felt no pain/tingling from the carpal. A few yrs later it showed the carpal went away in one arm.

(now then again - ALL the nerves in both arms give me pain - but that is another story - has to be caused by something else as they are not impinged).

By the way, I'm 36 now, and have dealt with stuff like this since about 29. Just remember the pain free great days as such - and make the most of these days within your ability.

slipnslide
02-05-2007, 01:26 PM
Thanks curious forever! I am pretty sure it's not from curling my wrists since I was given the wrist splints to wear at night for 6 weeks and didn't help. The only thing I noticed was by morning, my hands would have imprints from the splints on them as if my hands hand swelled slightly over night. I started just putting the splints on loosely before going to sleep and that corrected the problem of them becoming too tight by morning.

Stone Mountain, eh?...Neighbors!...well, we would be if you still lived there....lol....I'm in Forsyth County.

slipnslide
02-05-2007, 01:28 PM
oh yeah....by the way....I'm a female so I don't have a wife....and I am divorced....so I am single (hopefully not for too much longer)....LOL

Best wishes,

Kim

curiousforever
02-05-2007, 01:47 PM
Sorry! Did you actually wear them for 6 weeks? If the nerve is irritated it can take a bit longer to 'forgive'.

Unless of course it is impinged up higher. Wrist splints won't do much good if it is impinged at the elbow.

I actually went to a plastic/reconstructive surgeon who did one test - he held my hand at a 90 degree angle. Since my hand went numb, it was impinged.

I have confounded many neuros, etc myself.

What has your PCP said? Who is coordinating the care and getting all of the reports?

That is what my former clinic is doing - they are going to send me to Balboa - so maybe they can figure out what is wrong.

slipnslide
02-05-2007, 02:05 PM
Yes, I did actually wear the splints..they were a bit annoying at first, but you get used to them quite quickly. Being that I got no pain relief from them, I question if I actually do have carpal tunnel bilaterally. It's just unlikely that I would have both carpal tunnel and ulnar neuropathy in both arms, don't ya think??? I'd do anything to not ache like this...if they told me to try putting a noose around my neck, i'd do it if it would allevaite the pain!:D

My OSS, as of my last visit with him, was sending me to the arm/upper extremity surgeon as a first step, and the arm surgeon sent me to the Neurologist....and that is the point I am at right now. Last week my pain doc requested the EMG/NCS so I had it faxed to him that day. I go back to each of these docs at the end of this month and the beginning of next month and suppose I may know more by then (hopefully).

I have new insurance that permits me to go to doctors now without getting a pre-approval so I may just find a rheumatologist and/or endocrinologist on my own and see if they can't find anything to be causing these problems.

If it's simple nerve damage or something like that, I wish someone would just tell me....If I had an answer I could find a way to deal with it or treat it.

hoops2u
02-06-2007, 04:18 PM
Kim, I sure hope they find out what ails you. The diagnosis process can be long and frustrating, I know. We are still figuring out things. The last surgeon I saw said "why don't we just go in and take a look see?" I ran! Well, not literally, but you get my drift?
Anyway, I pulling for ya! God Bless ya Kid. And I'll also pray for just the right cuddler too, ifn ya want. K? U say ok, i'll say ok, we'll all say ok, OK? ok!

Love and Blessings,
hoops

slipnslide
02-06-2007, 07:47 PM
Thanks Hoops.:D It definitely can be a long and drawn out search and discover process. I'm 7 1/2 months out of surgery and still seaching for the pain generators. I don't blame you for running from the surgeon who wanted to take a "look-see"...like someone is going to submit to being cut open without knowing why they are being operated on?:eek: ...LOL:rolleyes:

Best wishes,

Kim