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Second opinion appt next week, need wise opinions...

I’m coming up on six months after my ACDF 5-6-7, and am actually way more symptomatic than I was before. I realize that the surgery is not for “symptoms”, but to avoid paralysis, but still, I can’t live like this.

I had an appt with my neurosurgeon’s PA about a month or so. They ordered an MRI, which seems to have questionable spots, in my uneducated opinion, but the Dr declared it “fine”. I wanted to argue that point; maybe he didn’t realize the extent of the pain and weirdness I’m having, so had an appt last week with him. Through tears, I begged him to help me. He insisted that structurally everything is fine and that there’s nothing left for him to do. He said that he “hates to see people just throw narcotics” at this (Hello… I was off the narcotics less than a week after the surgery, and was VERY hesitant to use them after the symptoms started 8 weeks after surgery. Now, I’m taking 1800 mg gabapentin and using a Butrans pain patch. I absolutely hate feeling so out of it, but cannot do without…does that not tell you something is very wrong???)

My biggest complaint: pain from my 4th and 5th fingers to my wrist bone. There is a vague numbness in this area when I wake, but as the day progresses, the pain ramps to a fever pitch. At its worst, it feels as though my hand has been dipped in scalding water, the skin peeled off, and the tissues left to ooze a bloody scab. While it has a constant burning scream, any touch or movement feels as though that scab is cracking, and tearing my hand right along with it. This pain is eating my soul. If I could keep a schedule of getting significant sleep after every 4-6 hours I’ve been up, the pain would be livable. Bummer for me, I work 12-15 hour night shifts where I have to use my hands and smile at patients. I don’t know how much longer I can do this, not to mention wondering how safe it is to work these hours and drive medicated.

In the past month, I have had an increase in hand numbness. Not just a little bit numb, but a flat-out “asleep” feeling. If I reposition my neck the right way, the “asleep” goes away with no pins and needles. I have no doubt it’s a spinal thing, not a circulation problem. I cannot lie on my belly to check mail on my phone without at least part of my hand going to sleep. (Usually the 4th and 5th fingers, sometimes the whole hand.) I also have been waking because of hand numbness, which is completely new.

Lastly, a weird one. This is something that had started gradually before surgery, then quit abruptly with surgery. It started again last week, perhaps worse than it had been previously. (Too Much Info warning…skip to the next paragraph if you want…) I am having problems with sex. I am waaay hypersensitive to touch “down there”, and have a sudden and complete loss of bladder control when I climax. I have researched the heck out of this. I do not at all feel that I should have concerns about Cauda Equina, as bladder/ bowel control are peachy outside of sex. I have found a few references to this coming from neck issues, and feel relatively comfortable categorizing this as “spinal cord funkiness” also.

I have vague complaints of heavy legs/feet, especially when I’m tired. My legs do a weird little “tic” thing when I hyperextend my foot (ie: put my foot on the edge of the tub to dry my legs.) The Neuro Doc actually did admit that that is spinal cord injury, and said it’s just going to be that way. I can handle that, and understand. It’s the accelerating, and troubling complaints that I am not able to be quiet about.

I have scheduled a second opinion appt with an unrelated neurosurgeon next week. I feel relatively sure that some sort of surgery is going to be required to get any improvement on this. I honestly don’t know what I’ll do if this second doc tells me he can’t help… I can’t continue like this.

My questions to you: Do you have any advice what to ask this second dr? I am pretty sure I want to leave it at the facts, but also want to be educated going in. I don’t want to ask for surgery; the last thing I need is a nonbeneficial surgery to recover from, but I'm guessing after a (successfully fusing, I believe) ACDF, a second surgery would require a posterior approach? Also, and I hate to even ask this… I feel like, if nothing changes, I might have a case for disability. I am honestly having a hard time functioning, and I am certain that I am a liability as a driver, and also to my employer. (I work night shift, in charge of a small number of patients, completely unsupervised.) I do not want to be disabled, I want my life back.

I will happily answer any questions. I have printouts of both MRI interpretations, and also surgical notes. I will post excerpts from the second MRI, June 2012, after this post. (The first, Feb 2012, was pretty much a cookie cutter “severe stenosis” diagnosis MRI, with some evidence of cord bruising and foraminal stenosis, which wasn't addressed in my Feb 2012 ACDF.) Of note... My symptoms increase as I am awake. In my hurry to get an MRI, I took an 0730am appt. I realized my error the night before after it was too late to reschedule. I got up at 0330, but still was having minimal pain at MRI time. I am curious if it would look different at a different time of day...

If you made it to the end, thank you. :)

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Comments

  • MRI June 6 2012 (5 months post op ACDF 5-6-7)

    "Central disk protrusion at C6-7 is partly diminished from prior study. However, residual disk osteophyte complex which is most prominent centrally does efface CSF space adjacent to the spinal cord at this level.

    Disk protrusion at C6-7 is no longer visualized. However, there is disk osteophyte complex and bilateral uncovertebral spurring at this level which does efface CSF space adjacent to the spinal cord. However, the amount of spinal canal stenosis at this level has diminished since prior study. Bilateral neural foraminal stenosis is present. There is persistent increased T2 signal within the spinal cord at this level favoring myelopathy."
  • KarenDKKarenD Posts: 742
    edited 07/16/2012 - 4:14 AM
    I think it's really smart to get another opinion. It really sounds like something is pressing and maybe inflammation is causing increased pain during the day.

    In preparation for going to your appointment, I would recommend getting all your relevant information together. Have both your MRI reports and, if possible, your MRI films (my surgeon always likes to see the films because he is looking for and seeing things the radiologist might not). I would have written out your list of meds. and your time line of the progression of your symptoms with details of the what, when, where. Have this available to hand a copy to the doctor. This will then be added to your chart. Have a list of all your questions also to give to the doctor. I find it better for me to do these steps, especially if I'm going to see the doctor alone. If possible, bring somebody with you who has reviewed your info. and can make sure all your questions are answered, and help capture all of the information.

    I hope you get some answers!
    KarenD
    KarenD
    4 level ACDF C4-C7 5-2-11, laminectomy & discectomy L4-L5 1/26/12, ALIF L4-5, L5-S1 12/10/12.
  • Yes, they asked me for MRIs and XRays on disk, and also the written reports. I have all the relevant reports in hand, and the disks are waiting for me at the imaging dept. :) I have been keeping a "journal" of sorts, by sending texts to myself... it was the easiest way I could think of to track what's going on. I'll make a timeline of sorts with the highlights so that hopefully he can make some sense of it.

    I think you're right that it's inflammation. It's like clockwork. I'm glad for the early-day reprieve, at least... :)

    Thanks again for the ideas.
  • KarenDKKarenD Posts: 742
    edited 07/16/2012 - 12:28 PM
    Good luck, and let us know how you're doing.
    KarenD
    4 level ACDF C4-C7 5-2-11, laminectomy & discectomy L4-L5 1/26/12, ALIF L4-5, L5-S1 12/10/12.
  • The "second opinion" doc pretty much completely stated what I had guessed: I do still have some stenosis, and the decompression that the first surgery accomplished was not enough. Said he'd recommend a posterior approach, but didn't specify laminectomy vs. laminaplasty. He implied that my case is complicated and actually recommended a major teaching hospital in Atlanta for a third opinion.

    Third opinion doc did a very thorough neuro exam. (sigh, I didn't realize the extent of my neuro compromise.) He was a bit more charitable towards my original surgeon; said the original surgery had been about as effective as expected, and that it would have been the surgery most docs would have done in the same situation. He prefers a more conservative approach so didn't recommend a second surgery outright, but did recommend that I come back if my condition continues to deteriorate (which we both know it will... I stated more than once that it is getting worse.) Again, he didn't specify which posterior surgery, but did say that approach seems to be the way to go. He did recommend a second nerve study (the first one was pre-op.) just to be sure, so I'm holding my nose and scheduling it with the same neurologist that the surgeon tried to appease me with a few months ago when I went crying for help.

    The "third opinion" doc made the statement that he considers having to do surgery a "loss", and that it's last resort for him. While I completely understand that viewpoint after my first neck surgery, I also feel that even if I am somehow worse off after a second surgery, I TRIED. It might not be completely rational, but the neck pain from the surgery is a completely different category of pain from the unexplained fire in my hands. I did not even mention the neck pain to the surgeon until he asked, and he seemed a bit confused by my "of course, but that's an 'ok' pain." statement, but that's the way my little brain works. Maybe some of you might understand.

    So, I wait. This is the most soul-draining experience. I have been deliberately using my hands/legs, in order to maintain function the best I can, and we're joining a gym tomorrow. No telling if that'll cure me or kill me, but we'll see. While most of my issues are not overly noticeable, I am having increasing issues with walking, typing, balance, etc. And oh, the pain. I know you guys are familiar with this.
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