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Neuro Assessment - Neuropathy from C-Spine

JoydancerJJoydancer Posts: 463
edited 06/11/2012 - 8:48 AM in Neck Pain: Cervical
Well, it's been many months and mostly puzzle pieces & questions....

I believe I now have conclusive answers with regard to primary source of neuropathy and if there is any secondary compression/entrapment going on anywhere else.

Following diagnostics have been done:
MRI CT C-Spine
MRI Brachial Plexus
EMG/NCS

Primary Source of Neuropathy Neuro-Muscular Damage & Symptoms = C-Spine

Primary Nerve Damage: Arm/Hand Ulnar Branch
Secondary Nerve Damage: "

Next step:
Review MRI/CT Scans done 11-23-10 with NS for changes since scans of 4-08-10
Final Surgery Assessment for C-Spine Surgery
Prognosis Assessment (second surgeon's assessment) for Neuropathy & Nerve Damage remediation (reversed)
Review EMG/NCS results with Ortho Hand Surgeon: neuro advised no need to do elbow cubital tunnel release; consider hand / wrist carpal tunnel release

After the above is accomplished in next two weeks, I make decision whether to have:

C-Spine C-5/6, 6/7, T-1/2 anterior & posterior surgery

Final thought / reflection - -

"All roads lead back to C-Spine"

Final assessment by Neuro - see Pain Management Dr. for treatment of neuro-muscular pain

Prescription filled for Lyrica, possible better choice for pain resolution than Neurontin and begin taking daily.

Janelle
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1

Comments

  • Well it's about time you got some answers. I hope he is correct in what he is saying.

    I'm curious why he thinks you need carpal tunnel surgery? COuldn't those problems also be coming from your spine? I'd think it would be better to do the neck surgery (assuming you are going to) and then see if the hand problems are resolved.

    We can be Lyrica buddies. I've been working up very slowly on this drug for the past three weeks. Today I went to 100mg twice a day at dinner and then bed. I haven't noticed any improvement but also have no side effects so I'm willing to keep increasing the dose.

    So if you do this fusion your entire c-spine would be fused and would bridge to the thoracic. Is this surgeon prepared to do the surgery?

    Lots of things to consider. Wouldn't it be nice if we could just have a broken bone that they put in a cast? lol Where are you headed next?
  • Hi, Kris,

    Just reflecting on what resulted today and past 48 hrs in Neuro's office...

    Really feeling mixed about was it was worth the past two appt with Neuro, glad I have insurance, to have done the MRI brachial plexus and second EMG....and being glad I am discerning & assertive at the same time !!

    Got to tell you this afternoon my appt didn't unfold as I had hoped, but went with the flow. EMG done by tech and then final c-spine area done by Neuro. Was told MRI of brachial plexus results were in my file, expected to review and have chance for ?s to understand...but Neuro bypassed that by just mentioning "the brachial plexus MRI didn't show much, nothing abnormal" while he was doing the final EMG portion of c-spine area. After EMG sat down at desk, he in a vague manner mentioned I possibly had soft-tissue damage showing up in EMG near area where I experience so much pain (under arm back of scapular area. In ?ing what should be done treatment, he said possible injections in his office. ? if it would improve symptoms in my arm/hand; (inflammation in soft tissue area was the problem), he said it wouldn't.

    It was only thru my pointed ?s about brachial plexus MRI, neuropathy damage & symptoms in my arm/hand, that I brought him to the answers and focus with all the diagnostics done! Strange - - I suppose he was thinking something with the brachial plexus MRI but it didn't (although I did not see the scan nor what the scan showed and radiologist reported). It all was on vague soft-tissue problems, my ??'s asking that "would not cause my neuropathy in my arm...right"; he agreed, then thru further ??'s to for the reason for all of this... asking him "then what is your assessment of what is the primary source causing my neuropathy and nerve damage"...he in half low voice like an after-thought! said "your spine".

    It made me wonder if all these diagnostics was really worth it, questionning how I could not get copies of the mri report and he took the file with him and his assistant had issues sayning he had the file...and it then taking her refusal to get the file from him, to take a request to pick up copies later for me to get a copy, turned into her getting the Mgr, since I was asking for a copy??!!


    It took the "Mgr of the office like a gustapo type woman" for them to agree that I get copies of MRI brachial plexus report which I was told was in my file (by the tech). It truly was very strange. This was all done in-house his equipment, his tech, his radiologist and tight-handed with my file and not fully reviewing scans results...alot of money spent in two days... ummmmm

    Well let me just say I will thoroughly get written reports MRI, EMG partial done on left spine muscle only with sequence waves, and I as reflect tonight on this I believe this could have been more of a trip down "money lane in the past 48 hrs" and having to wonder was it worth it having to re-direct this Neuro to the reason for all of what was done and get the answer and his assessment.

    Strange indeed!

    I am at the end of the Neuro's, with one testing me for HNPP hereditary neuropathy, the other saying he was barking up the wrong tree and he does 2 expensive diagnostic tests, showing nothing and my ?'s get the answer I thought I knew when I walked in the door! okay, I'm done !!! :O

    All worth the re-check with second Neuro ? - - well will decide once I get all the written reports from those diagnostics he was so vague about!

    So his assessment regardless of lacking focus and full credibility brings me back to first OS assessment nerve compression from C-spine, neuropathy symptoms and prognosis to resolve most
    likely will be unsuccessful with C-spine surgery!!

    Well it's a long road to come back to square one, since April, 2010 knowing I have to live with the neuropathy, nerve/muscle deterioration and more disability to come!

    Sorry, Kris, I didn't address what you asked me...but I had to hash this out!! I think I am in a big Surrender again - - can't change the unchangeable and knowing I can't change that - - I say that and I am very very done with this road...no more tests, questions, you know, no more.

    Janelle

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  • I wish I could be there to give you a big hug. I really feel for you, and have been in your shoes. In my case the let down came by phone....

    Sometimes the answer is that there is no fix. Or that the fix is worse than the problem. Get those reports asap. I hate when they pull that crap. You have a right to the info so they should have given it to you today...that would have me wondering as I am sure you are right now.

    So maybe the hand surgery is the way to go now?? I think I am going to go back to my ortho who treated me after my fall to see if he can recommend a hand surgeon. Just don't think my neuro is qualified for this. Somehow I just don't think eating more fruit is the answer....

    Well take a deep breath and try to calm yourself. After dealing with this for a while now I like to think that all things happen for a reason. Maybe you needed this confirmation that more cervical surgery is not the right path. Sometimes the answer is no. Learning to accept that is a constant challenge.
  • So sorry this is all going on. When you told me of this new Spine center and all their wiz bang top notch stuff, I thought "Huh, finally she found a great location, excellent doctor etc." Now they aren't giving you answers unless you drag it out of them, and too they won't give you your films, CD's or records?

    That would be a huge alarm bell to me. As we've talked, the more going on in the neck or back, the smaller and smaller group of doctors can or will handle it. I'm sure there is a doctor who would know what is going on (spot on), and too what can or can't be done to help. I can feel your kind of deflated right now. I wish I could give you a hug and all would be well. Know I am here, and if you want to talk voice, let me know. *HUGZ*

    Brenda
    PCTF C4 - T2, Laminectomies C5, C6 & C7. Severe Palsy left arm/hand.
  • God love you both for jumping in here as I sort of deal with all of this - -

    So many mixed things going on with that appt today and I'm glad I stand with all of you in this versus the lack of integrity of the medical professionals who are quick to seize an opportunity and maybe not for all good reasons and with the patients needs and diagnosis as being #1

    Can't quite put this in words, it is so baffling of how this is settling for me...

    You both hit the nail on the head !! And oh my God I am crying with the heart-thoughts and hugs you are giving me right now - - it means soooo much, in the farce of medical integrity we trust will be there snd when it isn't - - well hell it's not worth struggling to find the words to describe the level at which they "practice their profession" and knowing what we deserve and what is at stake for us....what a true sham it is.... oh my gosh, thanks for being here this feels like a really bad place to be letting go of it all...no more appts. with hope to be thoroughly disappointed not so much the reality or the true diagnosis...it's what these "medical professionals" I refuse to call them "physicians"... I better stop here... you know what I'm experiencing and what's out there..

    I take your hugs... thanks for being here.... I am very sad with the experience the roller-coaster with the likes of them...

    Janelle
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  • Thanks for your offer to talk, it's getting late and thinking be better to not get into this more now...

    I'm feeling betrayed and there's a big one in my past that this triggers... an avalanche...

    Let's pm and then I think I'll turn in!

    P.S. hey ? about Lyrica, got presciption filled, took 1 couple hours ago, big time ringing in my ears, wierd and now the emotions flooding here... huh !!

    Janelle



  • Nope, not a problem. I know what you mean, and too this is all way too fresh for you. I'll wait until you've rested, and too sorted a lot of this out. :) PM's are good too.

    As to the Lyrica, I was put on 300mgs right out of the box. I had a bit of ringing for a few days, was buzzy and tired for like 4 or so, then it started to back down. Now except for "every once in a while" I have to look to see if I took it! I think it was around day 4 or 5 before I really noticed it was working. I guess it has to build up in our systems to work fully. Except for the weight, the pain control for me is amazing!! See ya in PM's!!

    Brenda
    PCTF C4 - T2, Laminectomies C5, C6 & C7. Severe Palsy left arm/hand.
  • Janelle,

    Close your eyes... There ya go. Now we are back at the RV, and I am handing you an ice cold beer, and we'll have some girl talk. :)

    Although our levels are one off, your C2/3 is way different than mine. We discussed a lot of this, and how did we end it? Do you remember? Both of us will or would have the surgery (as if I have mine, we would become the same levels), it would be to stop progression and give back functionality. If they can't offer that, the bets come off the table. Right?

    I guess what gets me sad with what they've been telling you vs what I've been told by now 3, is while mine have all been pretty darn consistent, your doctors keep coming up with entirely different courses of treatment. I still haven't figured that out yet. That alone has to frustrating as all get out. Like you (right hand though), you saw how my dang hand and fingers cramped, folded, hurt. Mine though are from the neck *or* these lesions they diagnosed. With yours, they still haven't zeroed in on whether there are other crushes, or it is from the neck. The woman doctor you saw up your way for your arm seemed pretty spot on.

    I would make sure and get *ALL* the records, notes and images (or CD's), and let someone you trust look all of it over. Something just doesn't seem right to me. Is it possible this very self confident doctor realizes maybe you are "bigger than he can chew" and doesn't want to admit it? When you have multiple issues (as we discussed), the pool of doctors that can work those issues start to shrink pretty fast.

    (adding some more wood to the fire - just gave you another brew)

    Getting down is totally normal. Next stage is normally getting angry, again normal. Each time I read your post, I really think this doctor got in over his head, but pride isn't letting him admit it. I guess his low tones and vague answers are making me feel this. This medical stuff is costly, insurance or not. I am sure there is a doctor that can help you, but to go through these mutts before you find him or her, grrrr...frustrating I am sure.

    Time to grab Gizmo and have some fur kid cuddle time. Her unconditional love and purrs, might help you relax and think more, hell, do my thing, tell her all about it, and then see if getting it out helps. Sometimes that helps us get back on track to what we want to do to resolve things. I'm here if you need me, you know that. Super *HUGZ* >:D< 8>

    Brenda
    PCTF C4 - T2, Laminectomies C5, C6 & C7. Severe Palsy left arm/hand.
  • My experience on Lyrica has been very different. Because of previous reactions to other antiDs I started very low. Three weeks ago I was taking 25mg a day. Yesterday I moved up to 200mg a day. Other than some minor swelling in my calf I haven't had a problem. Today I think I am finally seeing some pain relief. Still have the arm and brac-plex pains but they see dulled. I guess it is helping...

    As far as your doc I think Brenda may have hit it on the head. If you remember I went to this top neuro doc in NYC and he wanted to do the same fusion you expected. Then a week later I call and his assistant tells me I don't need it. My feeling is that either he was told by others that it was too risky with small chance of working or he realized that the complications from the previous surgery were going to cause a problem. I think fear was the motivator for his change of heart. But I also thank God that I didn't have that surgery since it probably wouldn't work and I would be worse off.

    I know it's hard now but in a few weeks I think you will agree with me that this is better. Then you have to do the grief steps as you realize that this is your new reality and you need to find the best way to live this new life. I left my job 6 months ago because I was going to have surgery and be better so I could go on to a new and better job. Well here I am trying to find a medication that will allow me to do any type of work. Life isn't always what you expected but it sure is wonderful.

    For today you need an ice cream cone and some shopping. Try not to think about it too much and try not to analyze every little thing. Taking a doctor vacation, like Brenda did, might be a good idea until after the holidays. Let the Lyrica work it's magic.
  • Well the good accomplishment today was actually receiving copies of the brachial plexus MRI that was done, medical report and cd of the scan, the preliminary emg tech report of my arm/hand, the one of spine to arm done by Neuro will be included in his report (ready next week).

    Re: MRI Brachial Plexus - Results
    Radiology report states,

    "Nerves/Roots/Trunks/Cords: The peripheral distributions of the brachial plexus are normal bilaterally. This includes the nerve root foraminal exit of the nerve roots through and including the passage into the axillary regions bilaterally.

    There is no evidence of mass and no evidence of impingement upon the brachial plexus.

    Visualized Portion of Lungs: The aspices of lungs are normally bilaterally. There is no evidence of Pancoast Tumor.

    Vasculature: The subclavian artery and vein bilaterally are normal with no evidence of aneurysm or AVM

    Associated Bony Structures: Postsurgical changes are seen within the cervical spine with fusion from C-4 thru C-7. There is a hemi-vertebrae on the left at C-3 level and marked scoliosis of the cervical spine convex to the right. There is also significant amount of neural foraminal stenosis on the left C-5/6, C-6/7, and C-7-T-1 due to prominent osteophyte formation about the left-sided facets at these levels.

    The remainder of brachial plexus is otherwise unremarkable.

    There is no compressive abnormality seen associated with the chest wall, supraclavicular area, or axillary region.
    ------------------------------------------------------

    So, I am to assume my neuropathy in my left arm is caused by the osteophytes from C-5 thru T-1.
    No explanation or review unfortunately was done by the Neuro, nor was his focus/time allow for to review these results which were done and in my file ready to review with him!

    I suppose he is leaving it now to me to ask by NS to review and discuss! Which is strange and disappointing since the Neuro is not a referral from my NS, I chose to see this Neuro who could do the MRI of Brachial Plexus and shed light as to primary source of severe neuropathy & nerve/muscle damage in my left hand. ??? disappointing

    Appreciate any input from my fellow spiney's on this!

    Janelle
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