Hi there,

I wanted to make my experience with the diagnosis of bilateral TOS and subsequent surgeries available to those with questions. I was a visitor to this site on numerous occasions and appreciate the posts and referrals to doctors, physical therapists, etc.

I am two weeks post op from my second rib resection and doing very well. I had my right 1st rib removed in December 2014 and the left done earlier this month. I luckily had access to Dr. Hugh Gelabert (vascular surgeon) at UCLA who took me through the process of diagnosis to surgery. I don't want to bore you with the details because we all have our own unique story.

I am available to answer any questions one might have based upon my experience. I am very happy with my decision to have the surgeries and feel as though my quality of life has significantly improved.

Thanks! What type of TOS? And, how did you get it?

Neurogenic although the artery to my arm was compressed along with the nerve bundle in the brachial plexus. I never asked the Docter if he considered my case to be arterial TOS as well. In my case, I had grown an extra scalene muscle that was wrapped around the nerves and artery to my arm on the right side. The 1st rib was also causing compression. On my left side, the extra scalene muscle cradled the nerves and artery so if that muscle went into spasm or swelled, my elbow, pinky and ring fingers would hurt.

I think my anatomy predisposed me to the condition. I am 5'3 with a petite, yet athletic build. I played a lot of sports growing up and seemed to have more muscle mass then other women my size and age. That along with the extra scalene muscle that shouldn't have developed didn't leave enough room for everything that needs to pass through the area. That's my best guess based upon the post surgical information I got from the Docter.

Thanks so much for the quick reply.
You mentioned symptoms in the elbow, pinky and ring finger...a somewhat typical ulnar nerve path. I have less ulnar nerve symptoms but rather significant neck pain, that also radiates to the jaw. Dr G does transax (thru armpit) procedure. One doc mentioned to me that a transax procedure is more likely to resolve the symptoms going down your arm and less likely to resolve the neck pain. Did you have significant neck pain, and if so, did it resolve with the surgery done in Dec ?? Do you have any lingering symptoms from that Dec surgery? Again, thanks so much for the info...

Glad to hear good news, Titansophie! and happy to hear someone relate a good story about Dr. Gelabart. He is not discussed that much on here.

Cyclist-I saw him for a consultation a couple of years ago and he mentioned to me that my scalpular pain might not go away. My worst pain/symptoms are also in my neck/traps and underarms while my right side arm and pinky pain has gotten better as long as I am not on the computer all day. He wanted to make sure that my neck pain wasnt coming from C-5-6 disc bulge. I eventually did have an epidural to prove that and it didnt work, but havent pursued surgery again. I do also have some symptoms now on my left side -mostly in my arm.

I did have jaw and neck pain but never attributed it to TOS. I never mentioned the jaw pain to Dr G so I don't know his take on it. I had braces put on as an adult for the jaw pain and lots of PT for the neck pain over the past 10 years. The jaw pain would come and go and I eventually got a night guard to help with that. At least I got nice straight teeth out of it.

I could deal with the neck pain until I was given a scalene block to diagnose TOS. Two days after the procedure, I was in excruciating neck pain. It got so bad that I could not support the weight of my right arm. I hear that some people have this reaction to the scalene block but the docs didnt know why. So, yes, I had severe neck pain from August until surgery in December. My neck pain is 99% better but I still have some discomfort. Keep in mind I am in PT so I am asking my muscles and nerves to do things they hadn't done properly in years.

I do have lingering symptoms from the December surgery but I was told it could take up to a year to fully heal. My nerve bundle had been compressed on and off for at least the past 8 years so it takes time for everything to settle down.
I am not concerned with any pain or stiffness I feel on my right side because I am confident it will resolve itself with time. I am 99% better then I was before surgery.

I commend the research you are doing. I was a total wreck before both surgeries, wondering if I chose the right doc, if I should wait, do a different type of surgery, etc. It is not a fun process. I don't mean to sound corny but the best advice I received from a friend was to go into a quite room away from anybody and just listen to my intuition. I certainly second guessed my gut feeling but am so glad I had both surgeries done. That was the right call for me.

YES..."total wreck"...I can relate! It's such a nerve-racking decision. I expect you didn't know about the extra scalene prior to surgery, it might have made the decision easier. I have read about that type of anomaly (scalene minimus muscle) --seems to be a rare but known risk factor. Interesting that you did have neck pain, and so glad to hear that it has largely resolved. There are so many different medical opinions on all this. While that one doc told me not to expect full neck pain relief from a transax decompression, another one told me that as long as enough of the scalenes are removed (i.e., *adequate* partial scalenectomy), it shouldn't be a problem.

I really appreciate your sharing all this information. I just have this last set of questions...if you would be so kind. Did Dr. G provide any specific direction/advice on how to avoid scar tissue issues or recurrence? Does Dr G do anything specific during the surgery to mitigate scar tissue? Some docs will place an adhesion barrier around the plexus (like seprafilm), while others don't feel it's necessary or prefer not to introduce a foreign substance. And, does Dr G pre-treat or post-treat with any type of anti-inflammatory or steroid to reduce scarring? Some docs will routinely give IV toradol just prior to surgery, or low dose steroid...while others advocate against this for various reasons.

Again, I really appreciate all the info...and so happy to hear that you are so much improved!!