NeuroTalk Support Groups - Neurogenic TOS recovery: injury vs. overuse

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- Thoracic Outlet Syndrome (https://www.neurotalk.org/thoracic-outlet-syndrome/)

- - Neurogenic TOS recovery: injury vs. overuse (https://www.neurotalk.org/thoracic-outlet-syndrome/178752-neurogenic-tos-recovery-injury-vs-overuse.html)

Quote:

Originally Posted by Anne4tos (Post 925900)

Sorry to read about your daughter. I have a teen volleyball player in my house as well. As her mother, I have TOS and played a lot of overhead sports in my life, but volleyball was my passion. You probably won't like my answer, but I think her best expectation for recovery is to stop the sport and get her into an excellent PT program. After a year or two, re-evaluate her condition. She is only 16 and has her entire life ahead of her. Even if she wins the lottery and gets a four-year full ride, it's not worth having a rib removed at such a young age. Surgical expectations can never be predicted with this syndrome and neuro TOS makes it even more difficult.

As I'm about to drive my daughter to a volleyball game, I think about her playing often as surgeons have blamed my development of TOS on the sport. I think it could be one of many contributing factors, but not THE factor.

No parent wants to squelch their children's dreams, but making a decision on a surgery with so many unknowns would be an unbearable burden to make. I met a Dad not long ago whose 15 year daughter blew clots in both arms from swimming. She could either have both ribs removed or stop swimming. He chose the latter and she's doing great. Best of luck to both of you.

She gave up volleyball 3 years ago and has had at least 3 years of PT (drove 4 hours away to see specialist 4 times until we got referral of someone closer), She had seen chiropractor and even had acupuncture. The injury is in her right arm so writing, eating, art (her passion and hopefully her major) and everyday use causes pain. She gave up the guitar last summer. She has learned to do use her left hand for many functions but has slowly become more of a home bounder because of the pain and needing to be in a comfortable position. I agree with your assessment on the unpredictability of recovery. That is the main reason I am on this site seeking input and tips. She doesn't like to complain and feels awful when she has to text me that she is experiencing 7 level pain while at school.

Quote:

Originally Posted by onelessrib (Post 925938)

I just had surgeryp on 10/4 with Dr Thompson, it is now 3 weeks since surgery and I feeling better everyday. Recovery should be much easier for your daughter since she sounds like she is in good shape and 40 years younger than I am. By the way very pleased with Dr Thompson and his staff, good luck with your decision.

Regis

Thank you for your reply. I get so discouraged when I read so many negative experiences. It seems that those who have had great success have moved on and do not post their post surgery outcomes.

I think there are more surgeons now that have the skills and expertise in this surgery - it's what is needed.
Have you found our Drs & PTs list sticky thread? (above the main list of TOS threads)?

I do think younger patients tend to bounce back better also.

If she might have RSD also, more surgeries could cause it to spread, so that needs to be checked into more also, as there are blocks that can be used to help prevent spread.

the search link in my siggy might be the best way to find specific info in all forums for keywords - search terms have to be more than 3 letters.

I used search terms of "blocks surgery RSD" and selected the Reflex Sympathetic Dystrophy (RSD and CRPS) forum- and it came back with results- the results link doesn't carry over when posted or I would do that..but it might be worth seeing what you find by doing it.