I had botox Thursday (10/10/13) at Massachusetts General Hospital in Boston. I am seeing Dr. Donahue. I'll hold off on any opinion as to effectiveness until more time passes.

Hi Seeman,

Thanks for contributing to the post. Most definitely keep us updated as to what the outcome is.

Did you have both sides injected? What muscles did they inject? Scalenes as well as pec minor? Or others? Was it Botox A or Botox B? And, how long did they say it would take before possibly starting to feel relief?

thanks again. Hope to hear back from you....

I have bilateral arterial & neurogenic TOS. I had injections to my anterior scalene & pec minor on both sides. The doctors who were in charge of doing the injections read Dr. Donahue's orders wrong and were only going to inject on one side, but I caught that mistake. Basically, I was told it can take a few weeks to take effect. Everybody is different.

In case anybody wonders how much it hurts, both of my sides had very different levels of pain during the procedure. Left side barely felt anything (like a bee sting. 0.5/10). Right side had a mild level of pain, which I'd rate at a 2.5/10. Neither side was particularly painful.

I spoke w/ Dr. Donahue yesterday. After telling him that I felt relief w/in the first couple days of botox, but wanted to wait to tell him, he is ordering PT to start 10/25/2013.

The last week has been the best week I've had in two years. At times, I've completely forgotten I have this condition, even if just for a short period of time. Puts a big smile on my face.

That's great! Congrats!

I think someone else asked this: Can you just get the botox every few months? Why/why not?

Wow - Seeman -- so great to hear! Thanks for updating us....
Its been so long now, I can't even imagine what it would be like to be pain free for just 48 hours straight.....uhhhhh....

What kind of PT does Donahue recommend??

He did not specify anything to me. I live very far from him, so I can't exactly use therapists that he recommends.

According to Dr. Donahue, he does have patients that are able to manage their condition w/ regular injections.

Any idea what percentage are abke to continue with the botox
without it loosing effect, and for how long? Thanks!

I expect it might be hard to come up with an accurate number for this...

But, I have also been told, that if Botox works for you, then it might be possible to continue to get Botox every 3-4 months to manage symptoms and continue a PT program.

Botox
 

I was one of Dr Donahues Botox pts in October for left TOS. A nurse Julie calls every week for pain scale, and subjective feedback to assess treatment success
I had initial relief with pain with the scalene injection and the pec minor, but after putting up screens and vacuuming windows (overhead activity), I triggered the worse headache, pulsing Tinnitis, arm pain, chest pain I'd had since the beginning. Everything eventually calmed down with three HTN meds, pain and sleep meds, but I knew I couldn't go thru that again. At about week 5, PT was making the pain worse and I couldn't wait for surgery....a left PM tenotomy last week.