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

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

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.

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.