I had TOS surgery on November 16th of 2007. I had a first rib resection and anterior and middle scalene resection, right side, sympathetectomy. It was the worst mistake i had ever made. It made it worse. The pain is not just on my right side it is now on my right side and left side. And the surgeon said it is what it is. I was angry and upset that the surgery had failed. I was hoping this was going to take care of my pain but instead i have burning pain in both of my arms and my neck kill. My finger tips on both of my hands hurt. And to top it off my shoulder blades are on fire and have spasms. And now my feet are cold and purple. IME doctor said the surgeon didn't complete sympathetectomy. He said he should of taken out the stellate ganglion. Now i have RSD and Ranaunds Conditions due to TOS Surgery

-I also had to see a eye-specilaist- He confirmed i have Horners Syndrome. I new my eye look a little different, It was because of the sympathectic, damage to the sympathetic nervous. Due TOS surgery
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I don't understand why the surgeon did the sympathectomy in the first place.
That procedure is generally not done these days by most TOS surgeons because it is such a coin-toss - about half, supposedly, get really good results, but the other half end up with worse pain than before. What makes me really curious is I've only heard of it being done (for TOS patients) when someone ALREADY has RSD. If you didn't have RSD to begin with, what was his purpose for the sympathectomy?

I refused to go with one surgeon because he insisted on a sympathectomy along with the TOS surgery, because I had RSD along with TOS. But the little research I did online made it clear to me a sympathectomy wasn't worth the risks. You may very well want to talk this matter over with a lawyer with experience in this area to see if you have a case against the surgeon and hospital. Just suggesting, as I'm not an expert in medical or legal matters, but what you've posted does seem like questionable judgement was involved.

Having had RSD for 5 years plus, I will tell you depression and/or stress will amplify your pain HUGELY. Try to focus on each day as it comes and take care of those things that are within your control. Refuse to worry about the future or things you can't do anything about - these are the things that will drive you mad and keep the pain unbearable. Talk to your Dr about an antidepressant - when you have chronic pain and sleep is a joke, your brain chemicals become unbalanced, and an antidepressant is usually needed to correct this imbalance It may take a few tries to find the right antidepressant for you, or the first may stop working after a while and a different one will be needed. Don't give up! I was practically suicidal for months, and a change of antidepressants helped me feel more like normal than I had in several years.

A pain counselor or psychologist can also be very helpful, someone you can talk out all your grief, anger, problems, etc to without fear of losing, offending or being ignored by someone you love. Again, it may take a few tries to find the right one for you. Don't give up - it's worth it to have that support and sounding board.

Another thing to ask your Dr about is Lidocaine or Ketamine lotions or creams - rub them gently into the burning areas and you will hopefully get some relief from the burning. I have used Lidocaine patches over the shoulder blades/neck area at times and they also help with the trigger point pain.

I am so sorry to hear about what has happened, and hope your pain improves. Others will be along with suggestions as well I'm sure!

beth

I wouldn't completely believe the IME dr, just because they only see you for a short one or 2 time appt.

Do you have another {top rated} dr or surgeon you can get a qualified independent opinion from?
Take all your records, films, and surgery notes and let that second opinion dr review everything and evaluate you & you surgery results?

Beth has been thru the RSD/TOS & surgeries - she has excellent advice

Don't give up- find another specialist to evaluate where you are now and if anything can be done for you.

Dear Beth,
I had know idea he was going to do that procedure all he told us was he was going to untangle the muscles and may be remove the rib. When this surgeon was asked by me and my husband why am i worse and why does my left side hurt now, why am i burning in my arms. And why are my legs and feet turn purple when i am cold. His reply was i have know idea you better find a doctor to see what that is. It was a three hour ride home and all i did was cry. It took so long for a doctor to tell me i had tos, but know test confirmed it only visable signs and the anson test. I did talk to a few attorneys and they told me any body can get rsd . I dont have a leg to stand on. I wish i did my home work about TOS surgery i would never have done it. He was such a *** never return any phone calls. where i live there is no support there may be one doctor to give you the blocks. I will see one in two weeks. Im so glad you responded back between the pain and comp and trying to get ssd i am stressed out. I only worked part time do to my children so i get very little from comp. Its not fair he should have to pay for what he has done. Thank you for your in put any more advice would be great.

A TOS member just posted about a CT dr and a NY PT that seem to be really good -here-
http://neurotalk.psychcentral.com/thread49753.html

Hi Fire,

Beth has given great advice and words of wisdom. One day at a time. Only do what you can handle and don't overdo it whatever you do!!!!!!!!!
Get timers if need be and use them to time whatever you are doing and then u can know it is time to rest and relax. Heat or ice whatever is best for your pain...use it all the time. I live on my heat but put ice on my neck for headaches.

you are in my prayers and thoughts,
Victoria

Thank You for you kind words,

Dear JOJO,
I will not give up, i see a specilasist on thursday hope he has some good advice. Darlene

Hi Darlene,

I just want you to know that I also have RSD due to TOS rib resection surgery in 8/05. I also developed permanent nerve damage in the arm that had the TOS. I also went the route with talking with an attorney. I received the same response. Unfortuntely, nobody can predict whether you'll get RSD. You might have something with receiving the sympathectomy. I agree, there would be no reason why he would do that at the same time.

I understand what you're going through. I also have the symptoms going down my other arm now too.

I'm not sure what you're doing for medications. Everyone is so different for what works for them.

I just had a trial for a spinal cord stimulator. That might be an option if all the other things fail.

I'll be thinking about you. Please let us know how your appt goes.

Beth.