no, i am actually probably the best i have been. this is due to completely changing my life, completely not doing anything, and the botox helped some too. but i have seen doing the smallest things make me go, so i stay away from them.

just have the numbness in the pinkies and pressure in forearms/eblows.

Hello,

I am so sorry you are struggling with TOS and the decision on what to do going forward.

I wanted to chime in to let you know that there are success stories out there as long as the workup/diagnosis is accurate. I had bilateral thoracic outlet decompression and scalenectomy w/neurolysis on 7/20/11 (left) and then 8/10/11 my OS did the same on the right side. I was immediately free of all symptoms within hours of waking up from the surgeries. Prior to surgery I was very nervous about the recovery and long term prognosis after reading many horror stories on the internet. I had mixed TOS both vascular and neurogenic that had caused severe symptoms that was affecting every aspect of my life which was why I decided to go forward with the surgery and I am SO SO glad I did. My recovery went very smoothly, I didn't go to PT due to other injuries from an MVA but, that didn't at all affect my overall recovery. The only residual issue I have is a numb patch on the back side of my bicep which was initially annoying but now I don't really even notice it but otherwise full function.

The only thing that concerns me in reading your story is the burning pain.. this type of pain can be a symptom of a more severe type of nerve injury/damage like CRPS/RSD for instance. I would highly recommend discussing that particular description of pain with your doctor and get another opinion or 2 prior to any surgical intervention. I see you have had CT scans - has your Cervical spine been completely worked up? Are you also seeing a physiatrist as part of your diagnostic team? How about B12 are you taking it?

I wish you the best and hope that you find relief one way or the other sooner rather than later.

-Tessa

I take a multivitmin that has 300 percent daily value b12. is that enough? i have heard people say on here to take like 26000 percent daily value or something. that seems a lot.

when i said "burn" I didn't mean burn. i get a huge pressure and then I guess you would call it pain. i never like to call it pain because to me, nerves don't cause "pain" they cause something really really odd that hurts but it isn't like if you stub your toe pain or bite your lip pain, i dunno how to say it.

What doctor did you have?

Personally I would add an additional B12, Vitamin C 500 and Vitamin D3 2000 to your multivitamin.

Actually I would have to disagree nerves can and do cause severe (worse than any pain one could imagine) pain when they are damaged. When they are irritated they can cause discomfort more like what you describe and that is often at an early enough stage that you could recover. The most important thing in helping yourself and your doctors would be to really clarify the type of pain you are having as this makes a HUGE difference in the diagnostic process. Be as descriptive as you can like is it burning, tingly, numb, crawling ants feeling, knife like, searing etc. Then also pay close attention to exactly where the pain is. It is not enough to say it causes xyz in my right arm. You need to tell them or better yet draw out where and what type of pain you are having. Color and temp changes are also very important as is things that might reproduce all of the symptoms. For example: when I would drive I could not keep one hand on the steering wheel for more than just a few min. or it would turn white, get ice cold and all then the numbness, tingling and lack of coordination in my fingers would occur. Working at my computer would do the same.

My doctor was Dr. Mark Ombrellaro at Eastiside Vascular in Washington State he is brilliant but, I see you are in MN so that won't likely help you.

Again, I wish you the best!
Tessa

I have no regrets with either surgery. The right was for severe nTOS, the left for arterial, venous TOS. Both sides had abnormal 1st ribs but different abnormalities and the surgeon handled the complications well. I have no symptoms on the right side (> 9 years ago) but I do have some residual muscle atrophy as the nerve damage was severe enough to show up on EMG/NCV.

My quality of life has dramatically improved from these surgeries. Now, if only I could stop incurring orthopedic injuries requiring surgeries maybe I could stop being a frequent flyer in orthopedic offices, ORs and physical therapy.

My surgeon was also Dr. Ombrellaro mentioned above by Tessa.

Tessa,
How much b12? I see levels that range up to 5000 i believe.

I have "burning" pain surrounding both of my incisions from my first surgery. Dr. Donahue believes this is permanent nerve damage to my small cutaneous nerves. But this not equate to having RSD. So, what I am saying is just because a person has nerve damage that is severe doesn't necessarily mean they have RSD. RSD is another difficult diagnosis to make anyway. Also, I have nerve pain down my right leg to my foot. Dr. Donahue said this is not real pain, it just because my TOS symptoms are so severe, my brain is sending signals that I have pain there and he believes this will all resolve within 1 year post op.

Parbie,
Do not you worry one bit with Dr. D !

Wondering how long ago was ur surgery? Where did u have it done?
I hope as time goes on u get better n better!
Life's not fair!
Bless you