[Lupus777]

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

[gabbycakes]

Originally Posted by Lupus777

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

[Naturelover]

Originally Posted by Lupus777

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 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

[catra121]

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.

[keep smilin]

Originally Posted by catra121

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,


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

[dreambeliever128]

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

[LIT LOVE]

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.

[Lupus777]

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

[catra121]

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.

[SandyRI]

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

Originally Posted by Lupus777

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