Thoracic Outlet Syndrome Thoracic Outlet Syndrome/Brachial Plexopathy. In Memory Of DeAnne Marie.


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Old 11-07-2015, 02:46 PM #1
Nellyzen Nellyzen is offline
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Default Update on my health

Hello everyone,

I haven't stopped by in a while mainly because I've tried to forget about TOS this summer. It's not easy to forget about something that hurts every day but reading about it all the time gives me anxiety.

So it's been a year since the surgeries. Although the blood flow is good, the pain is still there. I still can't work or do any extended activities. I've been seeing a neurologist since May and have gone through another round of PT which has done nothing. I was referred to a local TOS surgeon who ordered an MRI to see what is going on with the brachial plexus. I probably need a reop but it really needs to be done by a top TOS surgeon so it seems the only viable option is Boston. I don't like it because I'm not a fan of out of state care and it's very expensive but what other options do I have?

I've been reading around here today and I'm sorry to see a lot of you are still suffering, just like me.

Sending everyone a hug!
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Old 11-09-2015, 08:55 AM #2
tpula tpula is offline
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It sounds like you and I are matching bookends. Same symptoms, same surgeon, same post-op experience with robotic rib resection. I noticed early on that my symptoms were not improving after surgery plus I had new issues to contend with. I never proceeded with the second surgery. We should synch up offline.
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Old 11-18-2015, 10:27 AM #3
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Heart better to travel for the best care

Try to get over the out-of-state anxiety. Its not much more costly that a local surgery, but going to a top TOS doc will give you a better outcome and likely better treatment by hospital staff who are used to this sort of procedure. Worth any extra $$ in travel.

I went thru the same thing in 2004. Read my posts to see what HELL I went thru getting a bad surgery from an inexperienced doc, just because he was in-state. My right arm will never be the same.

I need a cleanup surgery, but have some other health concerns to resolve first.

Peace to all,
Anne
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Old 11-22-2015, 09:50 PM #4
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Yeah, Dr. Donahue is great. My TOS has been flaring for the past couple of weeks since the weather has gotten cold. I'm going to the neurologist tomorrow, so hopefully they will have something new.

Please look up "Hospitality Homes" in Boston, it is $20 a night donation, it makes the cost of out of state travel so much more affordable, I wish I knew about them at the start of my trips to Boston, they are really great. Also, use the Subway system and taxi cabs (following surgery) in Boston, you absolutely do not need to rent a car, the public transportation system is excellent.
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