I have arterial, venous, and neurogenic TOS, and am a candidate for surgery, but it won't be for at least 6 months, if at all.

I've just scheduled two less invasive procedures (one side this Tuesday morning, the other side a week later). The doctor uses CT guidance to put the needle in the muscle belly of the anterior scalene (avoiding the plexus), then pumps the muscle full of marcaine anesthetic (and maybe some neutral liquid, I forget what), in an attempt to blow up the muscle like a balloon, and break up adhesions.

Then, he releases botox into the muscle, to shrink it and relax it, with the goal of ultimately creating a modest amount of additional space in the plexus. The doctor said he wants to make sure the medication stays in the muscle, so each side he injects needs to be on full rest (can't use the arm at all) for a week after the procedure.

The whole thing is, he said, a "myolitic" procedure, which I think essentially means "muscle-destroying," though it definitely won't have the impact of an actual scalenectomy. According to MRNs, my scalenes are already atrophied, but they may be tight, and there may be adhesions in the plexus that didn't show up on the scans.

The cost will be about $2000 a side, and they don't bill insurance.

I think I am going to go for it, and see if I can't get this under control without the scalenectomy/resection. At a minimum, I am hoping this will make my life less miserable while I wait to figure out what to do about the surgery.

I had these procedures done (at the same place) 5 years ago, and they did help, maybe relieving 25% of my symptoms. I definitely thought it was worth it when I did it last time.

Now that I've discovered these forums, I just wanted to see if anyone has any thoughts or experience with this strategy? It's a lot of money, and it's two weeks of rest (I'll need to figure out child care!), but if it buys me a summer with less unbearable pain, and more arm function, I think it is totally worth it. The risks of making anything worse seem to be really minimal.

I am planning to have the first one done right away, and would appreciate any input. Thanks in advance!!!

"my scalenes are already atrophied"


Explain please How ?

You have arterial, venous, and neurogenic TOS without hypertrophy ?

The explantation I got is that there are probably adhesions/scar tissue where the scalene goes through the plexus, and it's impinging on vascular structures and nerves. As for why I have the atrophy, I don't know. Maybe the previous myolitic procedure? Maybe I have weird anatomy?

Interesting case... If myolitic procedure can give permanent atrophy, it can help many of us.

What vascular symptoms do you have ?

How do you got tos ? .. scar tissue is only perineural in RSI TOS i think.

I can't use my arms and hands at chest level or above, or they become dead and numb. If I'm flared up they become dead in any position. I also can't use my arms away from my body, unless they are supported. Even then, I have to keep them lowish, or they get puffy and numb.

As far as how I got it, it was an RSI, but that RSI came 10 years after an MVA whiplash injury to my neck that I had long recovered from, but I supposed might have contributed to my developing TOS. I didn't have arm and hand symptoms until 10 years after the MVA, during a time when I was working 60-70 hours a week with a terrible set up, and I had steadily worsening neck pain, and then suddenly all the vascular and nerve symptoms came on all at once, and have never gone away.

If anyone else has had the myolitic/botox procedure done (or has even heard opinions about it!) I would love any thoughts!

seriously, scalene atrophy on a TOSer

I have had botox injections done in my scalene muscles guided under ultra sound and emg. This is a procedure I have never heard of ever before. Have you asked him how many times he has done this procedure, and what kind of success his patients have had? $2000. clams is alot to put out on a procedure that...may work. Good way to start doing research, but I would get a second opinion, before spending that kind of money. Just my 2cents. Wishing you releief whatever the outcome.
Cheers,
Jay

I just re-read the radiologists report, and the atrophy is only on one side, and it is mild.

I think I am going ahead with the first procedure tomorrow, since it did seem to help when I had it done (at the same place) 5 years ago. I did have a nice talk with the radiologist about his outcomes, and only one patient ever felt worse after the procedure, and most felt better.

I wish I had a crystal ball!

Yes but it is frustrating.