Dear Al,
I couldn't lie down on my head either - for months. It was the asbolute pits. I am fairly sure it was because I had a series of trigger point injections in my shoulder, upper back, neck and the back of head just after my diagnosis that caused my RSD to spread. Who knows? Maybe the RSD was going to spread anyway. To sleep I had to position pillows so that I could lay on the side of my face (and of course take tons of meds). At one point I was up to 100 mcgs of Fentanyl, but most of the time I was on 75 mcgs.
Ketamine is administered by most docs in lounge chairs. I would think that something could be arranged....if one doc says he can't work with you NEVER EVER give up. Call someone else. After about 12 ketamine infusions with Dr. Getson in NJ, he did an occipital block which helped enormously. I still have trouble with the back of my head, but it's not nearly as bad as it was before I started the ketamine. I also find that a heating pad and Voltaren gel help.
Neurostimulation is invasive. Perhaps there are other alternatives that you could try first?
I am truly sorry for your husband's pain. Please let me know if I can answer any questions for you.
The best of luck to you...XOXOX Sandy
Quote:
Originally Posted by Al1952
My husband's RSD started in his left shoulder and arm after arthroscopic rotator cuff repair in 2009. After 1 interscalene block, it spread to his chest, back, and right shoulder and arm. He cannot lay down at all, or lean back on his back. He sleeps in an office chair sitting forward. Of course, he only gets 1 -2 hours of sleep at a time. They cant do Ketamine because he cannot lay down. he has been on vicodin (10/325) for almost 2 years. We finally saw a PM Dr. today who wants to try a neurostimulator. Any thoughts?  |