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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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#1 | ||
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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 |
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"Thanks for this!" says: | Dew58 (04-23-2009) |
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Quote:
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. ![]() RSD in right arm only at the time of procedure. Last edited by DianaA; 04-23-2009 at 07:06 PM. Reason: add a line |
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"Thanks for this!" says: | Jennelle (04-28-2009) |
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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
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Laugh until you cry, don't cry until you laugh. Living, loving and laughing with RSD for 14 years and counting. |
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"Thanks for this!" says: | Jennelle (04-28-2009) |
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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.
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#5 | ||
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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.
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In Remembrance
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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 |
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Magnate
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I also agree with what the others have said and give the Sympathectomy some very serious thought and research before you decide to go ahead with it! From what I understand, it is now supposed to be one of the things that ISN'T suggested for RSD so I would ask why your doctor is even considering it??
I have spoken to a few people that have had a Sympathectomy and for most of them, it made the RSD pain worse and it spread throughout their bodies unfortunately. A friend of mine that had a Sympathectomy told me that if there was ever a cure for RSD, she wouldn't be able to have it as the sympathetic nerve that is affected isn't there. I'm not sure whether that is true or not but thought it was really interesting and pretty upsetting. Obviously, everyone reacts differently with RSD but I would seriously give the sympathectomy some research and serious consideration before you decide to go ahead with it. There are many medications and therapies out there that might help you instead of going down the route of such drastic surgery. It might be useful to get a second opinion from another dr also and see what they think is the best treatment for you. Take care and I hope you feel better soon!
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To the World you may be one person, but to one person, you may be the World. |
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"Thanks for this!" says: | Jennelle (04-28-2009) |
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i also wanted to comment on this subject .. i have not had this done. and wouldnt even consider this period.. i think like other said this is barbaric at best. there is so much info that this doesnt help at all but usually makes things worse.. like others have said please look into finding another doctor as there are other treatments are so much more effective then this..
carrie
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hope this finds all in less pain . rsd DX 99 had since 98 full body and organ involement,fibro ,pelvic pain ,etc,,,,,, please check out our website to help bring awareness to RSD! . |
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"Thanks for this!" says: | Jennelle (04-28-2009) |
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