Musician with NTOS - botox reactions?
 

Hello everyone! I'm new the forums, but I've been reading a lot of the old threads. Thanks for the good information!

I'm a 24-year old musician with NTOS (though I haven't been able to play since last year due to pain). A little background:

I've had it since I was 11 years old, but only got it properly diagnosed a little over a year ago. I've seen 15+ PTs over the years, a chiropractor, many massage therapists, and I've tried trigger point injections, myofascial release, all sorts of different drugs for pain relief, etc etc etc. None of these have helped at all, I've only gotten steadily worse over the years. I have severe pain from the tips of all of my fingers all the way through my arms up to the top of my neck on both sides.

I'm currently seeing Dr. Donahue in Boston, and I've been having PT with Regina Campbell (maybe some other musicians on here have seen her?). My PT is currently out-of-commission due to her own health problems. Any recommendations for other people to see in Boston in the meantime? I know that I have about a zillion trigger points all over my arms, shoulders, neck, and back, and that my fascia is tight everywhere, so I feel like some sort of manual therapy is the way to go for now (as opposed to surgery). I've yet to find any manual therapy, stretches, or exercises that don't make me feel significantly worse, though.

I got Botox injections in the pec minor and anterior scalene muscles, and I was just wondering if other people who have had them could share their experiences. I had them a little less than two weeks ago, so I know it's a bit soon to be feeling any differences. Starting yesterday, I've started to feel rather strange. I wouldn't say my pain is any "better", but I feel like it has changed qualities. The pain is less "achy" and more "burning", and it feels like it's all over my body rather than just in my arms and neck.

Can other people who have tried the Botox please share their experiences with this treatment? Thank you!

I received Botox in my left anterior scalene early January and I play the cello. It took almost a full month to be almost completely pain free. I did have some general weakness in my left arm and hand and it would fatigue easily. Nerveless, I enjoyed the minimal pain but it did not last long. By mid march the pain started to return and has become unbearable. I would have done the Botox again but it's not offered where I currently live and I have decided to fly back to the US in June to have my cervical rib removed.

Minouche, what instruments do you play?

But for the most part, nearly all fall into the static positions/ repetitions category.
All the practicing required totals up to a lot of hours too.

Sometimes if you can get the pain & symptoms under control, then go to a professional movement (musician) specialist, you may be able to continue playing at some level.

One of the Jonas brothers had TOS surgery years ago, but I don't know what he played or if he mainly sang..or how he is doing now, years later.

hanson brothers

Thanks for the responses!
I play(ed) French horn professionally. So yes, holding a heavy instrument for many hours a day in relatively static positions with repetitive motions of the neck and arms...
I'm glad to hear that you had some relief from the Botox! I hope mine goes as well. Good luck with the surgery in June.

Thanks for the responses! I play(ed) French horn professionally. So yes, it's heavy and requires using muscles in static positions for long periods of time.

Good luck with your surgery in June! I hope I respond as well to the Botox as you did.

oops, got em mixed up:cool:

I am also a patient of Dr. Donahue, and prior to deciding to have bilateral rib resections last year, I tried Botox in my scalenes and pec minor muscles. Unfortunately, I didn't have any relief from my symptoms, so I opted for surgery. It was a long road, but I would certainly consider doing it all over again if I was given the opportunity. Dr Donahue and his team are amazing , and surgery was totally worth it, given that I had run out of other options.

I saw Eileen Collins at MGH and Catherine Wee at Spaulding Rehab prior to surgery. Both individuals said they were unable to assist me further at that time.

Please let me know if you have questions! Happy to help!

I had botox once on the right side (post op > 8 years) and about 3 to 4 times on the left side (post op ~ 10 months). After about a week, the right side was symptom free for a glorious 25 days. When it wore off, it was like going from 0 to 100 in 10 seconds flat or no pain to horrific flare. The doctor who gave that shot was anti-TOS surgery until the shot wore off so quickly and so dramatically for me. I got the idea that my results weren't typical. Surgery did turn out to be the best decision for me as I had an obvious bony problem involving the 1st rib.

My experiences on the left side were probably more similar to others - gradually wearing off of the effects of botox, gradual return of symptoms, etc. These shots were given by a different doctor and used a different formulation or brand of botox which might explain the different experiences. The effect of these shots lasted longer but were not so dramatic as the right side. I ultimately had surgery on this side due to the significant vascular problems.

Thanks for the responses, everyone!

I'm sorry if this is a silly question, but those of you who had the surgery, does the doctor chose a different surgery depending on whether the Botox works or not? I was told that mine was diagnostic and he would not repeat it.

Also, how well did the surgeries work? Are you pain-free now? Or in less pain? Most things I've found on the internet talk about people's bad experiences, because people with good experiences aren't as motivated to write about them. I also haven't been able to find any good studies on what the success rate is on surgeries, probably because each patient is so different. And given that I've never felt relief from the pain, I'm having a hard time imagining anything working!

But I'm slowly regaining feeling in my fingers after these injections...