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Having a hard time

Hi all, I haven't posted here in a while as I thought my spine issues were all fixed and was on to other issues. Since my ACDF in Dec I've had another surgery in May, this time on my shoulder because they thought that maybe my pain was coming from scar tissue...etc (because the ACDF did nothing to alleviate the pain). Well, I've been going to intense PT two times a week and nothing has change, it's only gotten worse (the pain that is). My PT'st told me today that she thinks it actually is nerve pain from my neck that is causing all my pain issues, and to give my spine surgeon another call.

At this point, I'm just done. I don't know how much more I can take. I've been dealing with this pain for so long now, all I want is for it to be gone. I don't want to bounce from surgeon to surgeon, PT to PT, all I want is for someone to finally figure out what is causing the pain and then tell me how to fix it.

Anyone else dealing with something like this? I just don't know where to turn now and I feel so lost and helpless and I HATE feeling like this.


  • I'm sorry that you are struggling right now, and still dealing with the pain from before. What kind of surgery did they do on your shoulder? It could be that the pain is from your neck and that it was somehow missed during the first surgery, or that it is continuing due to scar tissue in neck somewhere. A revisit to your surgeon might not be a bad idea, but you could also see a physiatrist instead, and maybe he can pinpoint by emg where the damage is before you return to your surgeon? That might be a better option than just returning to the surgeon and hoping that he can somehow pinpoint where the pain is coming from . The emg should give you a starting point anyway. Are you taking any neuropathic pain medications? Do they help if you have taken them before?
  • I had arthroscopic capsular release and subacromial decompression on my shoulder in May. Pretty much no one really knows what the problem is, but I go see my spine surgeon on Tuesday and I just got a call from my shoulder surgeon's office and they want to see me on Thursday. Said something about a cortisone shot to help me get through PT till we can get me fixed. I've taken Gabapentin (is that a neuropathic pain medications?), but I don't think I gave it long enough to work because it made me absolutely psychotic...lol. I'll ask my spine surgeon on Tuesday about an EMG. Thank you so much for the advice, I'm in such need of it right now as I don't know where to go or what to do next, I've hit that wall so to speak.
  • If you had horrible side effects from the gabapentin, there are other options to treat nerve related pain. Lyrica, topamax, cymbalta, and there are other meds that work really well to treat that type of pain. Gabapentin is one such medication, so don't give up hope. I know that it can be really difficult waiting to find the right medication, the right dosage and then the side effects of the meds can be overwhelming. Lyrica, topamax, cymbalta, all have to be titrated to the correct dose, so it can take a bit of time to get there, but once you do, and the pain starts to be better controlled, and the side effects subside, it can be the first step in getting things straightened around.
    Hang in there, and hopefully, the injection might help enough so that you can get through physical therapy.
  • I tried to update last night, but either my computer or this site wouldn't let me. So I saw my spine surgeon and I have to say, I love that man! He honestly cares about me and my well being and told me he's not going to give up on me. He is referring me to a physiatrist (which, Sandi I thought was kind of cool since you had said something about it), and told me not to see my shoulder surgeon again (they keep dropping the ball and not working with me at all to figure any of this out), he would refer me to another one if needed. I came out of the visit feeling very hopeful again, now I just wait to see the physiatrist. Still in pain, still frustrated, but at least I know there's someone out there looking out for me and will work with me.
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