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!!

I did not know about the extra muscle until after the surgery. Dr. G seemed quite surprised by its presence but it was obviously causing problems.

I received IV toradol the second day after surgery. I am not aware of getting one prior to surgery though. I was sent home with narcotic pain meds, 600mg ibuprofen to be taken 3x a day and 10mg of flexeril (muscle relaxant). I followed up with a visit 2 weeks after surgery. At the 2 week mark Dr. G encouraged me to use the right arm. I started PT 3 weeks after surgery.

I don't believe Dr. G did anything to avoid scar tissue during the surgery nor did he seem concerned at my subsequent checkups. Dr. G encouraged me to use the arm and seemed more concerned with my energy level then any symptoms I might be experiencing. He said if I did too much and caused additional swelling that my body would let me know (pain, numbness, etc) but not to worry. Just rest and resume activity as tolerated. He was big on using the arm and not just sitting around.

Reoccurence of symptoms might happen if the scalene muscles that were detached from my 1st rib attached to my collarbone. If this happens and causes problems than another surgery to detach the scalenes from the collarbone would be required. Dr. G told me not to worry about it. I think that is good advice because I have no control over what my scalenes do or how much scar tissue it's going to develop as a result of the surgery. Worrying about it just takes energy away from healing and keeps me hyper-aware of any lingering symptoms.

The hardest thing to get through for me was not feeling the pain anymore. I had been in chronic pain for so long that when it wasn't there anymore, I was in shock. I just couldn't wrap my head around it. It took several months for my brain to catch up with my body.

I encourage you to seek out all your options before making a decision because it's a big one. When the time is right, you will make the decision that is best for you.

Best Wishes!

Thanks so much for all this info!

If you were given IV toradol on the second day, I’m guessing you may have also gotten it on the first day, perhaps while you were still under anesthesia. My understanding is that it’s just a stronger anti-inflammatory that helps w/ pain control and inflammation…and thus scarring. Not sure why all docs don’t use it (as long as patient doesn’t have NSAID issues).

A few years back, I had a more distal nerve decompression in my arm and the doc also strongly encouraged early, active use of my arm…no sitting around!...and resuming normal activity as soon as tolerated. She further explained that she wanted my arm moving throughout the day (not just in PT sessions!), so that the nerve would be regularly gliding back and forth (and all around) causing the scar to form long and loose --as opposed to tight and constrictive. Sounds like Dr G has a similar philosophy.

I’ve been in pain so long now…that I sometimes wonder if it’s even possible to go back. But, seems like you were in a similar situation and certainly sounds like you’ve gotten significant pain relief…which is super encouraging!

Thank you so much for taking the time to share your experience. It’s been very helpful. And I wish you much continued success and improvement in your recovery!

I'm new here, recently diagnosed by Dr Gelabert as well. I had been positive for a few years that I had TOS, but no one would listen to me, so when he did and confirmed the diagnosis, I was in shock!
I'm so happy to hear someone else had good experiences with Dr G as well, it makes me feel better about trusting him for my care. When he gave me a copy of the paperwork for my scalene block, he told me to email him if I hadn't heard back from the other dr in 2 weeks. Of course the other dr didn't get back to me, so I emailed Dr G and heard back from him within the next 2-3 hours. Awesome!
Titansophie, is there anything you'd like to pass along about how things might go when I end up having surgery? I've heard the dr is great, but the UCLA system can be a little sluggish.