NeuroTalk Support Groups - sympathectomy?

NeuroTalk Support Groups (https://www.neurotalk.org/)

- Reflex Sympathetic Dystrophy (RSD and CRPS) (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/)

- - sympathectomy? (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/167008-sympathectomy.html)

Lupus I can relate to the pushing yourself to make it to school. I am on disability now and I am relived. I was a Special Ed. Preschool teacher and worked an afternoon shift, half days. I would take a warm shower, lay with the towels to dry off and stay calm. I would work my pain medications around my schedule to be able to cope with the pain. I too felt badly when I could not go into work knowing that it is hard to get a teacher with the background needed to do Special Ed preschool, alot like PE. I hope you can get some relief and remember you are just as important as your kids at school you have to take care of yourself and let go. I am glad you have a good principal that is understanding. Take care.

Quote:

Originally Posted by Lupus777 (Post 863816)

Thanks everyone for all your advice. I really appreciate it. I don' t know anybody with rsd and for the past two years I have kept all my feelings and questions to myself.

My friends and family try to help but they really don't understand. A lot of days the pain is so intense it causes me to vomit or dry heave. I have tried to continue to work as a physical education teacher through this process, but I have missed a lot of days, well over my allotted 10 sick days. My principal is amazing and completely understands when I call out. The problem is our school is small and I am the only pe teacher there so if I miss school the kids don't have pe unless there homeroom teachers follows the plans I leave. I feel quility that the kids miss organized pe classes. Some days I have gone to school and have to leave early because I can't make it. I am currently on short term disability to go through the blocks and make some treatment decisions. I miss the kids but not the panic and stress I felt every morning when I had to decide if I could push myself and make it to school or did I have to call out again. This is the first time I have ever taken time for myself and I know I shouldn't but I feel quility. Any suggestions on how to handle this quilt?

It is amazing that in two days all of you not only read my question but took time to answer me. I don't feel alone anymore. This place is incredible.
Wishing everyone well,
Lupus

Hi
I have had crps for 23 years, In may 2012 I had a sympathectomy. It is honestly one of the worse things I have ever done for quite a few reasons.
I had injections just above my right hip, I had crps in my lower right leg and arm. I recived nerve damage to my hip and the crps spread up my leg, I also have permanent pain in my right hip. Also I had servere headaches after the sympathectomy and had to have a blood patch. I had spinal cord fluid taken to rule out infections, for some reason the dr struggled to get the needle into my back I ended uo with 10 seperate entry points for the needle. And you guessed it the crps spread to my lower back where the dr had tried to get the needle in.
Apart from all the issues from the treatment I had no relief from the symptoms after the sympathectomy. From what I understand it is not a particularly good course of treatment. A friend has also had it although she had no side effects it did not work for her and she felt it to be quite a traumatic experience. I really don't want to scare you but I think that it is best to be honest. Do the research and make the disicion which is best for you
good luck

Quote:

Originally Posted by Imahotep (Post 868606)

Sympathectomies are considered bad for RSD. They provide a "cure" about 10% of the time but 90% the RSD comes back much worse.

Hi Everyone!!! I had a displaced R Tib/Fib Fx back in 2003. I had an IM Rodding done to fix the FX. I developed the RSD very shortly thereafter! I had gone through 40+ lower lumbar nerve blocks, an epidural cath. and many prescription meds... My Dr. gave me a few choices after nothing was working. Pain pump, SCS, Sympathectomy.
After a lot of consideration I chose the Sympathectomy! After the Sympathectomy I started feeling better. About 6 months or so later the pain was back! My PMP wanted to do another nerve block except this time it would be on the L side. After the block we agreed to meet in his office. He told me I was a very rare case where the nerves on the L side took over for the R side.
He wanted me to go and talk to my surgeon about having a Sympathectomy on the L side. It took a lot of coaxing but he agreed. He advised me there were some risks to having a Full Sympathectomy but I agreed to have it done! After the last Sympathectomy in 2008 I have been in a "Remission" state.
I am NOT saying a Sympathectomy is for everyone, but I think I am in the 10% group. It worked for me and I could not be happier.
In fact I just had another major surgery on my R leg to take the IM Rod and screws out. Unfortunately the Dr. was not able to get my rod out but instead cut about 2" off that was sticking up into my knee area causing me pain. He was able to get all the screws out including the 3 in my ankle. WoW I have not been able to move my ankle like this since the day of the accident in 2003. I am back doing the things I love to do outdoors. I still have a lot of swelling and some pain but NOTHING like it was before the surgeries.

Best wishes Lupus on whatever decision you decide to go with!

Dono

Quote:

Originally Posted by Dono (Post 980312)

Thanks for the post.

Your experience constitutes strong anecdotal evidence against my theory that RSD is two infections. I thought one infection had a life cycle where it was unable to generate pain about 10% of the time and sympathectomies done at this time were successfull.

I'm very happy that your's had positive results.

Quote:

Originally Posted by Imahotep (Post 982883)

Thank you! I can't even begin to tell you how happy I am that I am able to get back to my active life. But, I do have to say I get "spotty" burning sensations out of the blue and for no reason. I believe it happens more when we have a strong fronts moving through. Compared to what I was living with I can surely live with that!

Imahotep~ if you ever have any questions please don't hesitate asking me! My Dr. told me I was a very rare case. Wanted to do a special video segment on me but we could never get together to do it!!!!