You're welcome. I've noticed the same thing, but I was so grateful for this forum and the people on it that I promised myself I would keep checking back, even if I improved so much I'd rather forget the words "thoracic outlet syndrome" ever applied to me. This forum gave me so much information and hope when I needed it - I can't pay it back, but if I can help someone else, now or in the future, maybe I can pay it forward. :-)

So, on to your questions! None of the doctors I saw ever suggested Botox, or really even mentioned it, other than that it was listed in a handout. From what I understand, it's a pretty hit-or-miss thing with patient response - your experience with it is not unusual.

By the time I made it to Dr. Pearl, I had already had every test in the book - MRI, CT, contrast MRI, contrast CT, contrast CT with stress movements, vascular ultrasound with Doppler, trans-esophageal echocardiogram, multiple neurological assessments and multiple nerve blocks. I had a scalene block done about a week before I contacted Dr. Pearl that had given me enormous relief, and that's generally the "acid test" for whether or not surgery will help you. Based on a thorough review of my history and test results, he gave me a physical exam with some stress positions, an assessment of reflexes and nerve function in office and was satisfied that surgery was indeed needed.

When I contacted their office to make an appointment, they scheduled me the way they schedule their "long-distance" patients - the first appointment of the day with a surgery slot for the following day. That way any diagnostic tests Dr. P wants to run get done right after the appointment, so he can still make a decision that day. If it turns out surgery isn't indicated, they just cancel your surgery slot. All I had done there was pre-surgical bloodwork, ECG, chest x-ray and spirometer reading (since they collapse your lung for the surgery and want to know how you breathe prior to surgery so they can get you back to that point post-op), and they did all that the next morning before surgery.

It might be set up differently for someone who had NO prior testing, but I doubt most people end up contacting a TOS specialist if they haven't already been through a lot of them. ;-)

If your current vascular doctor is stymied, I would strongly suggest you make an appointment with an expert, preferably one that has been recommended by someone with personal experience with them (people on this forum are a good choice!). Even though no one here had posted about a personal experience with him, I went ahead and made the appointment with Dr. Pearl based on the information that he had studied under Dr. Urshel, who is highly recommended on this site and listed in the list at the top of the forum, and he was close enough to me geographically to take the chance - after all, if I hated him and wanted to go to someone else, I'd only wasted a day driving to Dallas and back. But after meeting him and talking with him, I felt confident proceeding with surgery with him, and I'm glad I went with my gut (and everyone on the sports-loving side of my family were glad I went with someone CC had confidence in; yeesh!). I absolutely think he should be added to the list on the forum, btw.

There are so many experts in cardiovascular surgery and neurosurgery where I live that I couldn't understand why everyone local that I saw was either ignorant, scared, or both about TOS surgery, but I've come to understand the complexities well enough to see why (finally). After dealing with all their worries and excuses, it was startling (and VERY reassuring) to me to have Dr. Pearl discuss it as though it were a very routine thing - but I guess when you do several of them every day, it is a routine thing.

And I would also encourage you to go with your instinct. I saw Dr. Sam Ahn before I saw Dr. P, and I know some people on this forum have had good experiences with him. Personally, I didn't like him, or the facility, so I kept looking, and I'm really glad I did. There may not be a plethora of TOS experts out there, but there are enough that you should be able to find one that you are comfortable with and have confidence in.

Thanks and I cannot tell you how hopeful this has been. Unfortunately I have had several surgeries on cervical spine and shoulder that were a misdiagnosis before getting the TOS diagnosis. I first went to Dr. Atasoy in Kentucky who gave me this diagnosis. He is one of the pioneers in this space but is 80 something years old and I do not want him operating on me even though he offered. I brought this home to my local orthopedist who has seen me through all of this (but missed it) and he ordered the scalene block which was wonderful like you described. He then sent me to the local vascular guy who was trained at Johns Hopkins. He wanted to operate without seeing anything else but I wanted more confirmation and asked for botox. When I went back to him with the botox only giving partial relief he really did not know what to say.

The local ortho guy also referred a local college basketball player to Park and he got the surgery and is playing again this year. I am wondering why he sent me to the B team and the athlete got the A team. I am going back to him to ask him to send me to Park. I will get back on here and let you know if successful. Again thank you so much.

I meant Pearl (not Park). Sorry.

I wish you the best of luck! Definitely keep me posted!

thanks for all the info.If I decide to look into surgery again I will definately check dr. Pearl out.

you can (and should) post dr.Pearls info on the dr's and pt thread on the top. they are all posted by different members. The actual list is pretty old and outdated and for some reason hasn't been updated

Hey LosingHope,

It turns out my local ortho guy is a team doc for a local college and he has referred a couple of TOS cases to Dr. Pearl. Both were successfully operated on and doing well now. Of course these were healthy young athletes and I am a 54 year old who has been suffering for years, been misdiagnosed, multiple misdiagnosed operations, etc.

Anyway he is referring me to Dr. Pearl. Can you tell me how long it takes to get an appointment? Given I have already been diagnosed positive TOS, had a confirming scalene block and failed multiple attempts at physical therapy do you know how Dr. Pearl will start with me? I am not within driving distance of Waco but will do whatever it takes to get my life back. People think I am crazy to sign up for another surgery but they do not realize how difficult it is to live with an advanced case of TOS. What has me most concerned is this is the first year I have developed symptoms on the other side and it is developing more rapidly than it took my dominant side to develop. Abnormalities are now showing up on nerve studies after being negative for years. It feels like I am running out of time.

I recommend calling them and telling them your doctor is referring you and sending records, but you wanted to go ahead and start the appointment-making process. Given that you have already had so many tests, done PT, etc and you have a TOS diagnosis, plus you are a long-distance patient, they will likely do for you the same thing they did for me - schedule an appointment with a surgery scheduled for the day after (unless you are opposed to having surgery, of course, but I didn't get that impression from you). How quickly that happens will depend on how many surgeries are already scheduled. When i contacted them, the first available surgery was 6 weeks away, but I emphasized that if there were any cancellations, etc. to please let me know, and a week later they called with an appointment 2 weeks earlier than the one they'd originally scheduled. If you have to fly in, doing that might not work for you, though. You can expect to be required to stay nearby for 4 days post-op, but you probably won't actually be hospitalized that long.

Baylor has several hospitals in Texas; I saw Dr. Pearl in Dallas - actually, I didn't realize he was doing surgeries at the Waco location, too, but, if that's the case, if one hospital is too heavily booked, you might try the other.

I can only imagine how much more devastated I would have felt after multiple surgeries that didn't help; my heart goes out to you. But take heart, I'm not a young athlete either - I'm in my mid-thirties and could stand to lose about 20 lbs; it's damn near impossible to stay in shape when TOS has you laid up for years on end - but, as I said before, I'm doing better than I had dared hope. I'm so glad you got a referral; fingers crossed there will be an appointment available for you PDQ!

I would like to know where he's located.

I wish I had found him or dr. Atasoy early on. I know he's up in age, but he knows his stuff.

There are major improvements in surgical techniques, I know.

Loved your post.

Hang in there and praying your outcome is great and everlasting.

Life keeps comi g at you, sometimes like a freight train.



Dr. Atasoy is my doc and I'm pleased with him. He helped me in so many ways.

They called today and I have an appointment!! Praise God. They work exactly as you said. I was given the option of two trips or office visit one day and surgery the next. I am tentatively scheduled to do this in one trip but my wife and I need to work out the details.

One thing I may need to mention to them is the botox shot. I am actually getting some benefit from it and if I understand how it works it may have dropped my rib a little from the muscle relaxing. It typically lasts 3 - 4 months so I am wondering if I need to let it wear off completely. It's always hard to put percentages on stuff like this but I would say it has given me 30% relief. I can make it a while like this but not where I was.

I cannot thank you enough for posting on here. Please keep posting and telling me how you are doing. If this works I will probably go through it twice as I have it bilateral.

Dr. Atasoy was the first doctor to diagnose me with TOS. I agree he knows his stuff and he was the first doctor to do a rib ressection and scalene muscle removal in the same surgery. He offered the scalene muscle removal to me after physical therapy failed. I was concerned with his ability for a surgery that delicate at his age so I decided to get another opinion. I did ask his nurse why he recommended the scalene muscle surgery and not the rib ressection. Apparently he no longer does the rib ressections and I did not really understand why but assumed it was something to do with his age. She told me he was retiring at the end of the year but he has been saying that for years.

Good luck and I do hope you are able to get better with or without surgery. Please keep us updated as to how you are doing.