Posted , 3 users are following.

If there are any neurologist or pain docs with some suggestions I sure would appreciate it.

0 likes, 3 replies

3 Replies

  • Posted

    I am a retired board certified pain management doc and anesthesiologist, and also a chronic pain patient now with two spinal cord stimulators.  I just had a tendon repair on  my right ankle about 3 months ago now and have developed CRPS in it, of course.  So, I am extremely familiar with pain clinics and what they can do, from both sides of the aisle so to speak.  At this point in my own case, I am sort of like you with all over pain... mine goes from my neck down to now my ankle.  I also have neuropathy in my arms due to either botched surgery or what's going on in my neck- we can't tell, but it doesn't matter to me because nobody is doing surgery on my spine.  That is my adamant message, never let anybody operate on your spine unless you have fractured it.  Otherwise you are just asking for further pain.  I saw so many of those patients.  That's why I went with the spinal cord stimulators that have so far worked really well and have helped a bit with the ankle.  I read that 2012 review article by Schwartzman that had some interesting ideas but they were really only good for a single limb involvement, not someone like you. I know that before I went for the stimulators my other choice was an intrathecal drug pump, which would take care of it all. I am now wishing that I had chosen that option, at the time I thought I would just need the back SCS but as soon as that went in, I realized my neck was killing me now that my back pain was gone LOL. So, the second SCS immediately followed. I'd have rather had just the one pump.  Unfortunately the 2012 review article didn't include any studies on the intrathecal drug pump, but I think that would be worth a shot in your case.  I am certainly thinking about it.  They would do a trial which would be just an injection of whatever medications they would fill your pump with to see if that helps your symptoms.  The other treatment that looked promising in that 2012 article was the low dose ketamine by IV infusion every day for several hours for a number of days, one study was 4 days, one was 10 days.  That would have an all over result and not just a single limb.  I am going to ask about that therapy too.  HTH


  • Posted

    Ooops, I left out that there were two drugs that are used to treat Paget's disease that also had positive results, probably because you see bone loss in CRPS.  Taking those drugs might have a good overall effect on you. But Schwartzman noted that they weren't approved for use in CRPS in all countries, which probably means the US LOL.  There were other things that worked, liked this therapy where they passed a magnetic wave through your skull but I'd be really afraid that might set off everything you have going on in your head.  As a doc I really would recommend against that one for you even though it had good results, it is not worth the chance of severe side effects in your particular case.

    • Posted

      Anne, thank you for all of this information. Like I've said before I've already had much needed surgeries on my cervical spine and man how unfortunate I have been. I will certainly ask the pain management doctor on the 17th of May about a pump. From what I was told last fall 2017 from a movements disorder neurosurgeon, a baclofen pump will not help my neck spasticity with the chronic pain. Now that I've gotten the diagnosis of Craniovertebral Instability, the surgery to stabilize my head and neck, the severe spreading of CRPS, and chronic Trigeminal and Occipital Neuralgia I'm hoping for a better plan of care. It remains to be seen but I have much more knowledge now and my fight is very fierce. I'm not a mean person but I am strong in persistence. My knowledge of everything that is happening to me makes my approach to my physicians more valuable. I've seen this happen already.

      Thank you,

      Jimmy (Rocky)

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.