View Single Post
Old 01-15-2018, 07:38 PM
Alice P Alice P is offline
Junior Member
 
Join Date: Aug 2017
Location: USA
Posts: 54
5 yr Member
Alice P Alice P is offline
Junior Member
 
Join Date: Aug 2017
Location: USA
Posts: 54
5 yr Member
Default

Quote:
Originally Posted by Littlepaw View Post
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.
Littlepaw,

Wow, I hit the jackpot with your response! Yes, CRPS is really hard on the people that have it and those who love them .

I do know that Dr. Tollestrup has had really good results treating CRPS patients with Peripheral Nerve surgery . He also does a surgery called Segmental Denervation, which involves cutting a nerve to interrupt the pain response. I’m glad you had success with it. It must have been a HUGE disappointment when the CRPS came back after your other procedure. I can’t imagine the stress and emotional rollercoaster that you went through with that realization !!

The Ketamine is something we are really interested in because its non invasive and it seems like people are having really go success with it. Good to hear that you’ve had success with it as well. I think at that clinic here in Reno they do four treatments over a few weeks and then if needed, maintenance treatments. Some people have a complete recovery (remission?) and don’t need any further treatments.

I really want to do some research on nerve entrapment and "scratch collapse test". My husband has an appointment with his doc at the end of the month so will ask about both of this things.

I’m SO HAPPPY to hear that you are riding your bike, running and swimming !!! It gives me hope for my husband. I just want him to be pain free and happy again .

Thank you so much for reaching out to me and sharing your story. I greatly appreciate the information. All the best to you.
Alice P is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
catra121 (01-16-2018), ger715 (01-27-2018), Littlepaw (01-17-2018)