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pain, but no proof

AnonymousUserAAnonymousUser Posts: 49,671
I have an upcoming doctor's appointment the 4th of May with my orthopedic doctor. So far I've had a myelogram (Dec 08), a MRI (Oct. 08), a nerve block for diagnosis (which did get rid of my pain), and an EMG (April 09). The MRI only showed a little scar tissue, and the myelogram showed a small dent in my nerve. The EMG showed nothing, and the nerve block test got rid of my pain on the S1 nerve root. My concern is... all the tests I've had done show hardly anything, but I have pain in my S1 nerve distribution when moving or sitting too long. Doctors don't know what to do since not much is showing up, and they're not eager to do any other tests on me. I'm concerned that they think I'm making things up. How can I make doctors believe that I'm in pain and get them to dig deeper into this in order to find out what's going on. My ortho keeps saying, "I don't know what to do." He only orders tests provided in his own office. Any suggestions would be helpful.



  • a couple questions:

    Who did your nerve block? How much relief did you get and for how long?

    I am in a similar situation to you. I had fusion at L4-L5 15 months ago and my symptoms barely changed. Then this past Jan. I had a partial lami and foraminotomy at L5-S1 to see if that was causing my symptoms since the foramina were very plugged at that level. I have now fully recovered from surgery, have had two caudal steroid treatments, and, the symptoms are just the same as prior to the original surgery 15 months ago. I went to a different surgery for the second surgery, and I was pleased with my first surgeon, too. Both my surgeries would be considered a success. But, I still have the same pain. very frustrating!!

    I just met with my surgeon today and we agreed that I had reached the end of the road regarding what he could do to help me. There are no other tests to perform...I just have a "seriously pissed off" nerve (my favorite diagnosis) despite 2 attempts to decompress and make more room for it. There are no more procedures to try. There are no more surgeries to perform. The only thing left to try is the spinal cord stimulator, and I am not ready to try that.

    My point in telling you this is that I don't think it is a matter of your doctor not believing you. I think he simply does not have a solution for your problem at this point. Doctors do not want to face the possibility that they cannot "fix" the problem you have come to them for -- sometimes they seem like they don't understand our pain, or worse, that they don't care, but for the most part, I do not believe that is the case.

    HOWEVER, since you got relief from the block, it would seem to me there are things still to be tried. That's why I wondered who performed the block and whether you have been back to see him??
  • I should add that I would speculate that your pain is coming from the scar tissue, which is a topic I have found most specialists are reluctant to talk about because in many cases there is little they can do about it. If they aren't seeing anything on the MRI and the EMG doesn't indicate permanent nerve damage, it doesn't sound like you have something mechanical wrong.

    I know people on the board talk about having treatments for their scar tissue, but I haven't been able to find anyone who said he could do something about it. My doctors said they would not want to go back in as it would just create more scar tissue and I might end up worse off than I am now.

    My scar tissue has not wrapped around the nerve, but it is a source of irritation to the nerve and keeps it in state of permanent arousal -- flared up. Maybe something similar is going on with you. Just guessing here, of course!!
  • Yes, the whole scar tissue thing is definitely a posibility. And it makes sense that docs don't want to talk about it.

    My nerve block was actually performed in my orhto's office - by another physician. It relieved the pain completely - for about 6 hours, and I told my ortho that. His assistant (P.A.) is the one who ordered it. The thing is... My ortho's P.A. told me that the nerve block would be done for a reason, so that they would be able to make a diagnosis and give me treatment. Then, after I tell them that the nerve block helped me... nothing. That makes no sense to me. I even said I didn't want to have it done if it just meant going back to the same ole' thing - pain, and no diagnosis. He assured me, this was to help diagnose. I almost feel lied to. Do you know what I mean?

    I will be insisting on digging a little further into testing on my next visit. I will be nice, but I know there are discograms and other things that can be done. If he says no, I will ask why not. I will tell him that my insurance will pay and that I would like to try a couple more tests before giving up.

    Thank you again for all your thoughts. It helps me sort things out when others give me their opinions on my situation. My brain only sees things one way, and when others tell me their view on things, it puts things into perspective.

    Thanks again.

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