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Thoracic Outlet Syndrome Thoracic Outlet Syndrome/Brachial Plexopathy. In Memory Of DeAnne Marie. |
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12-23-2014, 08:51 AM | #1 | ||
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Junior Member
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Hello all. I will be having surgery in March with Dr. Annest and Dr. Sanders. I have been diagnosed with TOS and a brachial plexus injury. They believe my injury is both above and below my collar bone and their worst concern is my nerves are stretched. I have had several injections blocks and the whole works including 111 therapy appointments that have not worked or helped. It has been around 15 months since I have been dealing with this. I take several meds and still have pain. Luckily I guess, I have been on workers comp the entire time.
My question has to do with life after surgery. I know it varies from person to person. I know most people on here have unfortunately negative and bad experiences and I am sorry for that. I know I will never be the same ever again. I know that my shoulder or arm will never be 100%, I know I will always have pain. My question is how do people live and work with these injuries? There is know way I could put in a legit 8 or 12 hour shift. Don't get me wrong I would love to work I hate being home especially since my wife leaves for work every day without me. I am scared of being on disability and told it am handicapped. Maybe it's just me but this is reality. Thanks and merry christmas to you all. |
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12-23-2014, 02:19 PM | #2 | |||
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Co-Administrator
Community Support Team
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Well you have to remember that a large percentage that did recover quite well after surgery don't seek out forums like this very often..
Often we don't know the skill level of surgeon that did the less than optimal surgeries.. You have a good team for your surgery, so be optimistic. Many athletes go back the the sport after surgery so it can be done. Be cautious during recovery , but don't be afraid to move the arm & shoulder.. just avoid quick, jerks or grabs and heavy weight items.. Angry nerves just take longer to recover...
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12-26-2014, 01:18 AM | #3 | ||
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Member
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Like Jo said, people that are healed are not here anymore.
I've had both surgeries 6 weeks apart and I am 2 months out of the second one and I am making nice progress. I am very hopeful I will return to a normal life and you should be also. A positive mindset helps a lot right after surgery and with recovery in general. I know many people that have recovered and left the support groups. |
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12-26-2014, 03:42 PM | #4 | ||
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Nellyzen,
I've been on this forum and its predecessor for about 12 years. I had surgery 10 years ago and unfortunately it didn't work for me, despite my hopefulness and dedication to physical therapy. I remember only two people in all the time I've been on this forum who came back to report success or "cure" after surgery. I know many other people have dropped off the forum, but I don't know whether to attribute that to successful surgery or fatigue or something else. I do remember countless people who were initially better after surgery (as I was) only to regress some months later. I don't communicate with people outside of this forum so you probably have better information about the members here. I'm considering re-do surgery (because I'm out of other options). It would be very helpful to know who's better or been "cured" by surgery. I know the information would be helpful for me to decide whether to pursue more surgery if I knew there were people for whom it worked. Can you list the names of the members who've left the forum because they've been improved by surgery? Thanks, Kelly |
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12-26-2014, 06:29 PM | #5 | ||
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Junior Member
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I went back to full-time work 2 weeks after first rib resection and scalenectomy. You ask how do people live and work with these injuries? Well, it sucks. But, you do what you have to do to survive and live a normal life, and take it day by day. And, I continuously search for treatments and someone to fix me.
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12-26-2014, 09:36 PM | #6 | ||
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Member
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Kelly,
I am not sure if you are in the Facebook group but there are a lot of people there that had great success with surgery. I know at least 3 that were operated by my surgeon and now have completely normal lives. I still have recovery to do but so far 50% of my pain is gone and I am just 2 months out of the second surgery. If you have a good surgeon I do believe it is possible. Who are you planning on seeing? Nellyzen |
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12-27-2014, 01:55 AM | #7 | ||
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Member
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Nellyzen,
That's good to hear. Did those three have neurogenic or vascular TOS? I haven't decided who I'd consult with -- probably Donahue or one of the doctors in Denver. Who is your surgeon? Kelly |
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12-27-2014, 02:32 PM | #8 | ||
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Member
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My surgeon is dr Farid Gharagozloo in Tucson, AZ. All patients had arterial and venous TOS, dr G believes that the nerve issues come from lack of blood flow and once that is resolved, the nerve pain stops. Which I have found to be true in my case.
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12-27-2014, 03:40 PM | #9 | ||
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Member
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Quote:
My own belief is that neurogenic TOS is a poorly understood phenomenon. Doctors offer surgery to patients who are at the end of their rope, but it doesn't mean it actually offers much hope of relief. I'd love to hear of people with NTOS who buck this trend as it would offer me some hope that there was something I could do for myself. After almost 13 years of TOS, I'm ready for a new phase of my life. Take care, Kelly |
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12-28-2014, 04:41 PM | #10 | ||
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Member
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I know what you mean Kelly, keeping the hope going is very difficult with this condition. I'm wondering if your arterial issues were truly mild or just misdiagnosed, I was told I have neurogenic but the tests showed severe compression of both artery and vein. So the nerve issue was not my main problem after all and the insane pain came from lack of blood flow. Just a thought...have you had an MRA with dye and arms up?
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