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

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.

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!!!!

Lupus,
I am so sorry you are in so much pain. What meds are you on for it?

I haven't heard much good about sympathectomy. I hear you can be much worse off by having one.

Have you tried Aqua Therapy in a heated pool of about 92 or 93 degrees? I am having good success with aqua therapy. I most likely will never be able to do land therapy. My muscles lock up when I get cold. The warm water is soothing to the sympathetic nervous system and often calms my pain. It is very relaxing. Also have you been to a good OT? My OT taught me a brushing and pressure technique which helps calm down nerve pain. I use a surgical brush for the brushing technique. I use a paraffin bath on both my hands and feet to help calm the pain and nerve activity as well. I also use a heated blanket throw and a heated mattress pad. Cold is my enemy.

I have been very leery of anything invasive. I had two sympathetic nerve blocks done. The second one put the RSD in my back. I believe that a part of rsd is sensory oriented. In Sept. I had a very bad flare up that knocked the wind out of me for two months. I was unable to type at all on the keyboard because the tapping caused such pain. I wasn't able to ride my lawn tractor due the vibrations causing pain. I read an article in a Neurology magazine about how a child was rehabbed and decided to try some of the techniques myself. I am on very little medication for the RSD. I got on my tractor and started doing the lawn. Considering how weak I am, this was quite an endeavor. I had to empty two lawn bags from the back of the tractor onto a trailer. At first, I was crying because of the pain the vibrations were causing. I persisted and eventually, the vibrations didn't hurt anymore. At one point, it was very painful to touch my foot where the break was. I couldn't stand covers or anything else on it. I began to rub the area with my hands and put lotion on my foot multiple times a day. What I did to one foot, I also repeated on the other. I can now have covers on my foot, wear socks and shoes. When things start acting up, I again work on desensitizing the area. The only time I have taken a narcotic is last night and the night before due to the pain from the PICC line site. I only took the narcotic at night and hope I won't need to take the narcotic tonight. I was on neurontin and had terrible side effects with no pain control. I now take a low dose of Cymbalta and am doing so much better. If you would like to private message me, feel free. I look forward to hearing from you.

Naturelover

I have not heard anything good about this procedure and personally would never consider it.

Another thing that I recommend is tDCS. There is a thread on here about it. It is not invasive and several members here on the forum (myself included) have seen positive results from the treatment. It is fairly inexpensive (only cost me about $300 for equipment) and has little to no side effects. Some people who have gotten no relief from anything else have seen absolutely great results and I think this would be a better, safer option to try before even considering a sympathectomy. In fact...I personally believe it should be one of the first steps in RSD treatment before anything invasive.

But physical therapy and desensitization have been key for me in regaining the function and getting back that sense of "normal" in my life. I push through the pain a lot and Naturelover said...the more you do things and push yourself, the better the results over time. Hurts like all get out to do it...I know...but if you can then it is SO worth it.

Take care and hopefully you are able to find some relief.

I had a bad car accident, 24 years ago..it caused Thoraxic Outlet Syndrome.. I had two sympathetomys as a result... My Dr. At the time intentionally cut my sympathetic nerve, one on each side of my chest and first rib removal on each too.... I now suffer the worst RSD ever.. Both external and internal! So much time has passed that the Dr.. world does not even want to investigate it... Good luck with your decision on best to proceed.. I'm really sorry...

Take care, Kathy

They hardly do them anymore due to the poor success rate.

I have TOS and RSDS. I have had TOS surgery on the right side to remove a rib and had surgery under my left arm in 2004 to remove muscle to let the ribs spread.
I just saw my TOS surgeon Thursday and am having pectoris Minor surgery under both arms due to an auto accident. They are now doing this a lot of times instead of taking out a rib. They have found a lot of peoples problems with TOS do come from this.
You might want to talk to your Dr. about this. He says the cuts are small nowadays. They are learning more and more about doing this.
I had PT for a long time and it didn't help.
Ada

I'd be worried about any doc suggesting this on a RSD patient... I underwent a Radio Frequency Neurotomy years ago and it made my RSD permanently worse.

Hi Lupus,

I know where you are coming from with pain so bad you could vomit. No matter how bad things get please stay away from Sympathectomy. They are like SCS for CRPS in that they don't work and can make you worse.

I too had a spinal cord stim that worked for a little less than two years and then just stopped working. Very long story short I now have severe CRPS at the SCS surgical sites as well as spread to my wrist. How long did your stimulator work? Did you have any spread to the surgical site?

Please consider tDCS-a great alternative to more invasive procedures! The tDCS ended the spread to my wrist and the wheelchair that the spinal cord stimulator put me in is now a thing of the past!

Thanks cprsjames,
My stimulator worked for five great years. Yes, the CPRS has spread to the surgical site where the battery pack is in my side. When it first stared to burn I thought the battery itself was leaking but after xrays and tests on the stimulator my pm dr said the CPRS had spread to me side. It is the first time my symptoms spread. It really scared me. Where else will it spread?
I read about the tDCS but I am confused about how I get started. I know my insurance will say no but can I get the equipment on my own? Is it expensive?
Thanks,
Lupus