I was diagnosed with TOS on right back in 1994 after years of the TOS shuffle. Had Surgery in 1995 with fair success, I was able to return to work full time. However still expereinced flare ups and modified many activities to perform them left handed. Unfortunately this modification and not listening to my body (e.g. overdoing it at work, and toughing it out though pain on left rather than listening to my symptoms) resulted in bilateral TOS. I've now been diagnosed with TOS on my left side. This was devasting news since the first go around prior to my surgery and the modifications I've ended up making post surgery where a scarey thought to have now on both sides. Now for the good news... I went to the Dr. for TOS consultation I'd had a TOS doppler and then had a Marcaine injection in my scalene muscle. This injection works to numb your muscle and force it too relax... Once I had the injections my symptoms almost completely subsided... for the first time in 8 months I could left my arm to shoulder level and work overhead without causing the excuriating pain... This is a new test they are trying that they feel helps to predict your outcome to TOS surgery. Unfortunately the Marcaine wears off in about 4 hours. I followed up the Marcaine with a shot of Botox in the Scalene muscle. My insurance doesn't pay for the injection they say it is experimental so I had to shell out $500 but at this point I'd try anything. So I had the injection. Within about 2-3 weeks the pain in my arm had subsided, however I did have significant injection site pain and pain in my neck (which I wasn't having on that side). This pain lasted for about 4.5 weeks after the injection. I'm 6 weeks out now and my pain in my arm is gone and neck pain is gone. Still have occasional flare ups but they are mild. The unfortunate thing with the Botox is that it wears off after 3-4 months. Repeat injections are possible, but apparently have diminishing return.

I meet with the surgeon and based on results from Marcaine and Botox he feels my prognosis is good to excellent if I have TOS surgery on Left side. Surgery is much different than when I had it done in 1995 no more rib resection. So... good news that Botox has bought me some time and pain relief, good news that prognosis is good based on injection reactions, bad news that I'll need surgery... but looking forward to future. PS I'm going to follow up with some test of my right side to see if they can help resolve my residual symptoms post 1995 surgery. Surgeon thinks it is a possibility.

Any of you out their thinking of Botox I'd give it a try. I'd also consider the Marcaine injection as a diagnositc tool

Hi Karrie - Welcome.
What kind of work do you do? Are you still working now or back to work?

I had Botox injections into my scalenes X3. they did give me relief, seemingly for me, it was a lasting effect. I did have my right eyelid to twitch but no one thought it was from the Botox. Later, I hopped on the Internet and did research on the effects of Boxtox into the scalenes and it was noted that one of the side effects were eyelid drooping. So, I guess I was right after all. the doc I was going to quit giving Botox injections, so I haven't found another doc yet to do that. After I had good results on the second injection, the doc wrote a letter of medical necessity to my high risk health ins and they agreed to pay for the injections, even though the know it's experimental, for one year. Took the 3rd and then he quit. What luck. but I did get relief.

something else I found that gave me relief from TOS are 3" balloons. I blow them up and place them under my armpit. As silly as it sounds, this seems to give me relief down my arms. I also use 5" for my neck and 7" for my back. I carry them in my medicine bag. They are portable pillows, too.

Dr Jordan here in Los angeles was one of the first to give botox for TOS. He has several paitients with good to excellent results (i am one of them). For milder TOS the effects can be long lasting, for me it was more of a 6 week thing.

Durign surgery turns out my compression was quite severe, so i guess the short results on the botox aren't surprising. I also used it for relief on the right side when i had surgery on the left..

Also- VERY VERY important to get it in the right place....Dr J uses ultrasound and EMG guidance. Others use open MRI...