Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)


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Old 01-13-2018, 09:02 PM #10
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Littlepaw Littlepaw is offline
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Littlepaw Littlepaw is offline
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Hello and welcome Alice,

I'm so sorry your husband and family are having to deal with this. We all know how frustrating, exhausting and anxiety producing it can be searching for answers.

I'm in the unique position of having had both ketamine AND peripheral nerve surgery. For myself, both were the right decision. I had a nerve injury in a "minor" procedure that caused a traumatic neuroma that didn't show on nerve conduction. It was when a fellowship trained peripheral nerve surgeon (trained at Washington University) went in that the problem was found and repaired to the degree possible. I already had symptoms of CRPS at that point. I was in such pain they didn't feel they would make me worse. The difference after having nerve surgery was immediate and significant. I felt relief quickly and the color of my foot became normal for the first time in 9 months.

My CRPS symptoms returned after a later procedure. I believe partly because it was on the sole of my foot where there are a jillion sympathetic nerve endings. After several months of only minor improvement I pursued ketamine treatments. My doctor uses a sub-anesthetic dose and it isn't a five day protocol. Results built over time and allowed me to pursue rehab more aggressively. It wasn't a quick fix but I credit it with changing my outcome entirely. If you search on the forum for ketamine posts made by me an entire thread about my experience should come up. I need to update it. Still doing great!

I have also posted some on peripheral nerve surgery. There are cases where the CRPS was caused by a nerve entrapment or injury that was amenable to repair. The skill and training of the surgeon is important as well as having anesthesia geared towards CRPS. I would recommend looking into getting a "scratch collapse test" done. The PN surgeon may be familiar with it. It is a test of reflexes used by Dr. Susan Mackinnon from Wash. U. Mine was positive before surgery and negative now. Really interesting.

Making decisions about treatment are so highly personal. Get as much information as you can and do what feels right for your husband.
There is hope. 80% of CRPS cases improve over time. It can take trial and error to find what makes the difference.

As for me- I get a booster of low dose ketamine by infusion about every 6 months now. I still get a little symptomatic sometimes. However, I bike, run, swim and completed two 5k's last year. That was after a year on a scooter. I am admittedly a stellar outcome that may be atypical. But even if my results had been less impressive the relief would've been worth it.

I wish you and your family the best and hope your husband finds relief soon. You are welcome to PM me if you have specific procedure questions.
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