Cutting sympathetic nerve
 

My doctor wants to cut my sympathetic nerve and thinks that this might help "cure" my rsd since the nerve blocks worked really well at firs (now they only last a couple hours). Has anyone had this done or heard of it being done. I guess they use the surgery for sweaty palms. I know the state doesn't pay for it but I might try to appeal if it would be a good option. My rsd is in both of my arms....please let me know if anyone has heard/had this done.
Thanks!
Jennelle

Hi Jennelle
 

Hi Jennelle, Welcome.
I have been directed to your post by a very caring person here. She knew that I did have a sympathectomy and asked me to post to you. Dreambeliever is like a mother here, she is always trying to help everyone.
First...Hi! I am Diana and I have had RSD/CRPS for 20 years in July, full body.
I also responded to the blocks favorably and had three series of blocks, ten at a time.
I went to the University of Mass. for my sympathectomy.
I had an upper thorasic radio frequency sympathectomy. It did seem to help for a while. That was 15 plus years ago. I know that things have changed some but, although not a doctor, I would think the principle would be the same. I was actually on the cutting edge at that time. They use to open your chest and go in from the front for RSD patients, (back in the day..LOL). I still have relief from sweating today. That is nice, but I have full body pain. For me personally, it didn't last very long. You may be different. I also know that some say it made them worse. I had a small amount of benefit and it didn't last long. I also had a small puncture to my lung during the procedure, but not serious. That was a risk of this procedure, and may still be.
Now, I have an ongoing HBOT treatments to keep my pain levels in control.
I know it is a tough decision. I would consider this very carefully.
Where is your RSD? Where and who will do this sympathectomy? How many have they done? Also, read everything you can find on the internet and hopefully others will post.
I don't think I personally would do this again. Although I think I did have THE best Doctor and didn't suffer as far as I know. I say that because, ultimately, I did have full body spread sometime after this. But, that just may have happened anyway, as a result of surgery.
If you have any more questions or would like to talk, just PM me and I'll answer ASAP. Jennelle, I wish you all the best. I'd be glad to talk this over with you in more detail if you like. Nothing seems to be black and white, with RSD. Take care dear.:hug: Di
RSD in right arm only at the time of procedure.

The one person I knew who had it done wished every day she'd not done it. IMO, it's a barbaric procedure to begin with and has been shown that not only does it NOT help, it makes things worse. The person I knew had a few months of relief, but she woke up one day completely unable to move. She was in such agony she wanted to die. Getting a sympathectomy, for her, made it go full body and the pain she felt more pain that ever.
The risk is one I personally wouldn't take. There's too much risk and not enough gain.

Hugs,

Karen

It's said to have about the same efficacy as amputation; complete relief in about 10% of cases and most of the rest it makes it worse.

There are so many different treatment options; it's surprising they would want to try this. It does not have a favorable history, and I don't think most docs would even consider this anymore. I think with this disorder we want relief so bad we are willing to do anything. But honestly, I wouldn't do this. No way.

I agree with all before me.
After 26+ years. A "Sympathectomy" is an "Old School" type of "cure".
It didn't work then, it won't work now..
It can be proven out, with a nerve "block". Using the numbing medication, does your pain stop? Of course not. You're numb, but the pain remains. This has been proven out 20 years ago, in my case.
Don't Let them Do It!


Find better "Management" doctors, not rodeo round up doctors!
Find someone who understand, and doesn't want to make you a test dumbie!

My best, and Humblest wishes to you.....


Pete
asb

Hi. This may be a little different but when I first developed this I was looking into tts surgery or nerve surgery. I was told this is the last possible thing you want to do because it can damage other nerves in the process. Surgey I have read with rsd is really the last thing you want to do. I hate to ever discourage people in case I am wrong but I would really get a few opinions on this before you do it.

Of all the procedures I've read dealing with RSD this procedure is one that seems to be the most negative. Very evasive and risky. My wife who has full body RSD ruled it out years ago.

I think permanent nerve blocks like that have long been sworn off by knowledgeable doctors.

Jennelle, You need to Pm about this. My best friend had this done with disatrous results. Her story is very similar to DianaA's . SHe would give anything to turn back the clock & never had done this. She also had a lung puncture which turned her RSD internal. SHe now has heart problems & swallowing problems because the RSD is everywhere in her chest up to her throat. She just found out she may be able to sue the doctor that did this to her for malpractice. When she walks she feels like a lightening bolt going up her spine with every step. Her Spinal Cord Stimulator (SCS) wont work in that area to help her because she doesnt have the nerve there to conduct the current. If you want to talk to her I will do by best to saee if I can hook you up. I think this is serious enough that you need to hear these stories before you consider doing something that ireversible. I hope to hear from you soon.
Hugs, Denny