sympathectomy?
 

Hi everybody,
I am new to the boards. I was wondering if anybody knows anything about sympathectomy surgey. I had been suffering from thoracic outlet syndrome with brachial plexus injury for 15 years. I have been diagnosed with RSD for the past two years. I had tried a SCS, nerve blocks, pt, ot and now my pm dr says I should consider sympathectomy surgery. Has anyone had this surgery or have information about it? Or any other ideas. I am about to lose my mind . I am a teacher, but i haven' t been working much lately. The pain makes me vomit. I take meds but they don't help much. I feel useless. Any suggestions?
Thanks,
Lupus

Lupus,

I have been told and read this procedure can be very risky.
I have had a very small sympathecomy and neuroma finding done at the same time. My surgeon did not want to do it, I quote my PM doctor at the time. "I had to beg him to do it". My PM doctor was going in looking for a neuroma so they did a slight sympathecomy at the same time. Honestly it made me worse, I should of listened to him and to this day I still have pain in that area. The neuroma was never found either so it was a compete waste.

I see you live in NJ, me too. You also stated that you have TOS and a brachial plexus injury. After my injury it took me a few doctors to find the correct ones. The doctors who got my arm back, which I almost lost complete functioning, are from the Hospital For Special Surgery, Upper East Side 70th and York, NYC. They have a new Brachial Plexus and Nerve Trauma Center. The doctors affiliated with this center are the best of the best, two of mine are part of this new department. If you can manage it I would go straight there to get an opinion.

Wishing you the best. Here is there website www.hss.edu.

Gabbycakes

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.

Don't do it!!!!!
 

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.

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

Last year my RSD spread after I had a block and the pain got so bad that I was vomitting 7+ times a day...I know what that feels like and it was so awful. I would hurt so bad that I sould sick up and then I would hurt even worse from sicking up. It took many months of me being bounced around from one doctor to the next until I found one that helped me get a handle on all of this. While all this was going on I had to be off of work and I felt some of that guilt. I love my job and wanted nothing more than to get back to it...but I could not do it in the condition I was in. The best I could do was to focus all of my energy into getting myself better because once I was healthy and able to function then I could get back to work. Once I got the right doctor and the right physical therapist...things began to really turn around. Don't get me wrong...pain is still awful and reaches the 9-10 level almost every day...but I have been able to find through trial and error a whole bunch of things that all help me to get through the day, to function, to either reduce the pain or increase the effects of other things to reduce the pain. Meds have not been very successful for me so I am not on many of them and nothing for the pain itself other than lidoderm patches.

So my advice to you (and this is advice that my dad gave me that helped me through some of my own worst moments) is to not worry about the things you CAN'T control and focus on the things you can. That's not to say you ignore the things you can't control of course...as you still have to react to them a lot of the time...but your focus should be on how you react to something not on the problem itself. Not saying that it is always an easy choice...but in most situations you DO have a choice to one degree or another of what you can do in any given situation.

I don't know the details of exactly what you have tried...but from my own experience most of my relief has come from a lot of little things I do and use throughout the day to make me able to function. And all of the function has come from physical therapy...which I know you said didn't help you but it makes me wonder if perhaps it was not the right kind of therapy (everyone's different and responds to different treatments and some physical therapists I have met think there is a one size fits all physical therapy routine and don't take the individual into account at all). But really...even with physical therapy...as much as I pushed through a lot of pain...you NEED to have at least enough relief from the pain to do it even if you are starting small.

I really do hope that you are able to find some relief soon. Last year I was a real mess as I just kept getting worse and worse and worse, until I found the right doctor to work with me and then gradually started to get better and better. I still have limitations...still have pain and other symptoms...but I am happy and feel ALMOST normal sometimes despite these things. I am well enough to return to work (though...ironically they don't want me...but that's a seperate issue) and that was a great milestone for me when I was given the okay to go back to full work duty. Hang in there and don't give up.

Hi Lupus,

So sorry that you are so sick. I grew up in south Jersey not too far from where you live now, but married and moved away to RI over 25 years ago. I still miss it down there!!

I was diagnosed in June 2008, my injury occurred in Nov 2006. In April 2010 I started ketamine infusions with Dr. Getson in Marlton, NJ. Ketamine changed my life. Dr. Getson is great, but I understand he is becoming more and more a cash up front operation, due to the difficulty of insurance coverage and ketamine.

If you would like more info, check out the Ketamine Klub page on FB. The RSDSA.org is also an excellent source of information.

Good luck, Sandy

Sandy,
I know Dr Getson but i didn't know he did rsd. I thought he was only a family physician. His kids were at the summer camp I work at in the summer. His son was in my class. It's a small world.
Is it hard to get the insurance companies to agree to ketamine infusions? I couldn't even get physical therapy covered. I will look into him though.
Thanks,
Lupus

Dr. Getson is one of the finest RSD docs in the country, and you would be blessed to have him care for you!!

It can be very difficult to obtain insurance company coverage for ketamine, and Getson's average per day (in my experience), was $1700.

My RI United Healthcare paid for a portion of my charges at Getson's, but not all. He does not accept insurance as payment in full. Eventually, the WC Court in RI forced my insurance company to cover my expenses. Otherwise, it would have been prohibitively expensive for me to continue the treatments at his rates.

I am receiving ketamine in RI with Dr. Chopra so I don't have to travel out of state anymore. He is also a great doctor. But Dr. Getson was the doctor that correctly diagnosed me, and wrote an awesome report for me, and first treated me. I will always remember him for that. He is truly special in my book...

Good luck to you. BTW, I am from Haddonfield, but my parents live in FL and at their shore house now in the summer. they came home home early in 2010 so that my dad could drive me back and forth to get my ketamine in Marlton.

Keep in touch, and let me know how you make out! sandy

Lupus,

Dr. Getson does Evaluations on Thurs., he used to charge $400. It will be the best $400 you have spent since you got sick.

Getson will be able to discuss your insurance and what is covered and what is not, etc.

Sandy

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

The equipment is not expensive (relatively speaking). Using the sites that are listed on page 2 of the tDCS thread I was able to get everything I needed for treatment at home for about $300 (and that's without any assistance from insurance). All I needed was for my doctor to write a script for the tDCS unit itself. Everything else could be ordered without a script.

Spinal Cord Stimulators and CRPS Spread
 

Hey Lupus,

So sorry about your experience with the Spinal Cord Stimulator. You were very fortunate to get five years out of it. With CRPS 3-5 years is typical with many SCS failing sooner.

Sadly, with CRPS, SCS frequently cause spreads particularly to the surgical sites. I still have mine in and with severe CRPS at the surgical sites, which is also a common side effect with CRPS, I am stuck with the implant for life. Please consider removal very carefully as I have been advised by four doctors that taking the SCS out could cause full body and internal CRPS spread.

Please review the tDCS thread. It is worth a shot at trying. There are resources listed there as well as treatment facilities. You can also learn a lot about tDCS by doing a Pub Med search.

If you would like to try it yourself you do not need a script to purchase the equipment. Just do a search and you will locate sites that do not require scripts.

I feel very uncomfortable thinking about it but one doctor suggested I might have a neuroma since my pain is usually very localized and a spot shows on the MRI. A surgeon injected a anesthetic and it seemed to help.

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

Sympathectomy
 

Hi there, I am brand new to this site too. I have had RSD for 15 years this September. In my case the RSD started in my left calf and over a couple of years went to both legs & both arms.

I had sympathectomy done on both legs about 8 years ago. This was after dozens of nerve blocks and implanting SPINAL CORD STIMULATOR one for legs & one for arms. In my case the RSD was so strong that despite cutting and gapping the nerve the RSD returned to my legs. The only good result is that it moved down off the hips down to the thighs.

My advice 1st thing is get 2nd opinion first. I have a mixed feeling about whether doing such a major surgery is called for if you have only had RSD for 2 years. You might look into less invasive treatment such as nerve blocks even spinal cord stimulator. (they can implant temp wires to see if it will work for you first) Even the use of Hyperbaric Oxygen Therapy. (You can find info at rsdhope.org - look under treatments) This is something I have wanted to do, but can't get it approved by my Workman's Comp. Now on the other hand maybe going big is the play that would work for you. If you hit these nerves before the RSD gets so ingrained that like me it can bypass the nerve being cut.

I do really think long before getting a sympathectomy I would try other treatments first.

Sympathectomy
 

Hi, I am so sorry you hurt. I was diagnosed with RSD in my left foot and calf by a vascular surgeon. He assured me that he caught it soon enough and that the sympathectomy would be the best route to go and would I mind if he brought his interns in the room to see. He described a small incision approx 3 inches long in my stomach, and that they spread it and then move all the organs aside and it would give them access to my spine- through my abdomen!. When I got out of surgery I was miserable- The incision was 7 inches diagonal and crooked across my stomach ( I am 6-3 and was 175lbs) so it went from one side to the other. This was in June 2006. In August 2006 one of the medical journals printed an article that stated the surgery was considered butchery, in that it took any chance of a neurological cure out of the picture and there was no proof of success. It didn't help me. It made it worse. I immediately got RSD in the incision area and the skin is as sensitive as my leg, not to mention I have terrible stomach gas pains since. If they ask you about doing this procedure, I would be extremely critical. Look around for yourself and find those journal reports so you have something to confront this doc with. Under no circumstances would I ever let anyone I know go through this without doing hours worth of research. Do not take this lightly for your own sake please. Best of luck, and prayers for a cure!

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.

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

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!!!!