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Neurogenic TOS

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Unread 11-01-2012, 04:09 PM   #1
Joshuamr
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Default Neurogenic TOS

Saw my neurologist today and he finally agreed that I could have TOS and wants me to see a "shoulder specialist" with knowledge of TOS.....I was curious to know if neurogenic TOS would show a positive sign in the different pulse tests (I believe they are called Addison and wright tests). Or if they were inconclusive in determining NTOS. Also in regards to the different surgeries to correct TOS pec minor releases, first rib resection, or scalene release? I believe is the last one...what are, if any, permanent limitations with these surgeries? Any loss of or limited arm function? Or any things you shouldn't do due to the structural difference in that area? Right now I can't elevate my arm or shoulder without my hand completely locking up ( unable to open fingers while elevated) and experiencing pain burning sensation in the shoulder and scapula. Has anyone had loss of function that returned after any of these surgeries and to what extent? Been bounced from doctor to doctor for the last year with all normal tests (Emg w/ulnar nerve entrapment didn't explain my symptoms, mri of neck and brachial plexus, mri of shoulder). Been suspecting TOS after a friend who's a doctor mentioned it and I researched it. Crazy that all these people I have seen and not a whisper of TOS. When I started learning of the symptoms it was like a checklist of my problems. I'm thrilled to finally have my Neuro finally recommend seeing a specialist because my case is comp and without the recommendation they will never approve the visit. Good luck to everyone going through this because it does consume your life and drag you down. This site has helped so much for advice and just venting
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Unread 11-03-2012, 07:32 AM   #2
Nottherightkindofdr
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Originally Posted by Joshuamr View Post
Saw my neurologist today and he finally agreed that I could have TOS and wants me to see a "shoulder specialist" with knowledge of TOS.....I was curious to know if neurogenic TOS would show a positive sign in the different pulse tests (I believe they are called Addison and wright tests). Or if they were inconclusive in determining NTOS. Also in regards to the different surgeries to correct TOS pec minor releases, first rib resection, or scalene release? I believe is the last one...what are, if any, permanent limitations with these surgeries? Any loss of or limited arm function? Or any things you shouldn't do due to the structural difference in that area? Right now I can't elevate my arm or shoulder without my hand completely locking up ( unable to open fingers while elevated) and experiencing pain burning sensation in the shoulder and scapula. Has anyone had loss of function that returned after any of these surgeries and to what extent? Been bounced from doctor to doctor for the last year with all normal tests (Emg w/ulnar nerve entrapment didn't explain my symptoms, mri of neck and brachial plexus, mri of shoulder). Been suspecting TOS after a friend who's a doctor mentioned it and I researched it. Crazy that all these people I have seen and not a whisper of TOS. When I started learning of the symptoms it was like a checklist of my problems. I'm thrilled to finally have my Neuro finally recommend seeing a specialist because my case is comp and without the recommendation they will never approve the visit. Good luck to everyone going through this because it does consume your life and drag you down. This site has helped so much for advice and just venting
You and i have very similar symptoms. I haven't had the surgery yet, but mine is scheduled with dr pearl in Dallas on 12/4. Sounds like your neurologist isn't familiar with TOS. I would recommend You see a vascular surgeon who has done many rib resections. (Theres a list in this forum.) they too can diagnose you. I wasted a lot of time and $ going to different neurologists.
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Unread 11-04-2012, 11:39 PM   #3
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You and i have very similar symptoms. I haven't had the surgery yet, but mine is scheduled with dr pearl in Dallas on 12/4. Sounds like your neurologist isn't familiar with TOS. I would recommend You see a vascular surgeon who has done many rib resections. (Theres a list in this forum.) they too can diagnose you. I wasted a lot of time and $ going to different neurologists.
Thanks for the reply.....yeah I am in the process now of trying to find the right doctor. My Neuro made one recommendation but I am gonna shop around. Good luck with the surgery hope all goes well. When u said similar symptoms do u have a problem with opening closing hand or controlling finger function? It seems like a rare thing to me, most people I have read about complain of pain,swelling,color change in the hands.
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Unread 11-06-2012, 04:41 PM   #4
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I have problems gripping and with motor skills using my hand: buttoning buttons, zipping zippers, my handwriting is ridiculous. I never had pain in my hands - Just numbness and weakness. I had pain in my wrists, shoulders, neck, and arms though. I went to two neurologists who told me opposite things. They both agreed that I have TOS, but one told me to live on pain meds, and the other one told me I was atrophying, and I needed to do something (surgery.) I have neurogenic TOS, but my vascular surgeon told me I don't have any arterial or venous blockages, but if I continue to go untreated I could develop them.
I started this TOS journey in August (after I was misdiagnosed and misoperated on for carpal tunnel) I finally have peace knowing my plan of action. My advice: Do what you need to do until you find peace. Advice I was given and what works: go with your gut.
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Unread 11-07-2012, 04:27 PM   #5
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I have problems gripping and with motor skills using my hand: buttoning buttons, zipping zippers, my handwriting is ridiculous. I never had pain in my hands - Just numbness and weakness. I had pain in my wrists, shoulders, neck, and arms though. I went to two neurologists who told me opposite things. They both agreed that I have TOS, but one told me to live on pain meds, and the other one told me I was atrophying, and I needed to do something (surgery.) I have neurogenic TOS, but my vascular surgeon told me I don't have any arterial or venous blockages, but if I continue to go untreated I could develop them.
I started this TOS journey in August (after I was misdiagnosed and misoperated on for carpal tunnel) I finally have peace knowing my plan of action. My advice: Do what you need to do until you find peace. Advice I was given and what works: go with your gut.
Yeah we definitely do have similar symptoms. Recently I noticed I have been dropping things a lot, and having trouble with any two finger grabbing. And as far as the pain goes that's never ending. Well I'm glad your on he right track and have a plan of action. My neurologist finally said it could be TOS but suggested I see a shoulder specialist to find out. It seems like the mystery syndrome that no one knows about. So I'm gonna see a vascular surgeon hopefully. Good luck and thanks for the reply.
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Unread 11-08-2012, 06:58 AM   #6
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Hi. Just wanted to wish you both good luck! I have finally been diagnosed with NTOS and pectoralis minor syndrome. I have surgery scheduled on Nov 29. can't believe I'm actually excited (and scared to to death) but I am looking forward to some relief! It has been a long and painful road. I am a rural carrier in Florida and this has made it impossible to continue working. I have bilateral ntos and crossing my fingers that I do not need surgery on the right also. Keep looking for answers....don't give up! I wish you the best.
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Unread 11-08-2012, 08:14 PM   #7
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Hi. Just wanted to wish you both good luck! I have finally been diagnosed with NTOS and pectoralis minor syndrome. I have surgery scheduled on Nov 29. can't believe I'm actually excited (and scared to to death) but I am looking forward to some relief! It has been a long and painful road. I am a rural carrier in Florida and this has made it impossible to continue working. I have bilateral ntos and crossing my fingers that I do not need surgery on the right also. Keep looking for answers....don't give up! I wish you the best.
Thanks tsquaw. Best of luck with surgery on the 29th. My grandpa was a rural carrier. That's grueling work. I'm counting down until my surgery. The pain is so horrific today. 27 days until my surgery. We'll get there. It has to get better.
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Unread 11-09-2012, 08:20 AM   #8
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Best of luck to everyone with surgery scheduled. I had my surgery on 9/18. So far so good. I'm told its a 6 month recovery until ur at ur best. I have R sided NTOS. I also have trouble with my fingers. Always had. Numbness pain tingling small task and dropping of things. I do have a new symptom of my fingers constantly twitching. I hope it resolves soon. God Bless and keep searching.
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Unread 11-09-2012, 08:50 AM   #9
Joshuamr
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Quote:
Originally Posted by tsquaw View Post
Hi. Just wanted to wish you both good luck! I have finally been diagnosed with NTOS and pectoralis minor syndrome. I have surgery scheduled on Nov 29. can't believe I'm actually excited (and scared to to death) but I am looking forward to some relief! It has been a long and painful road. I am a rural carrier in Florida and this has made it impossible to continue working. I have bilateral ntos and crossing my fingers that I do not need surgery on the right also. Keep looking for answers....don't give up! I wish you the best.
Hey thanks for the well wishes tsq...I hope your surgery goes well and gives you some relief. I know how the journey through daily pain can effect your life and your workplace. Especially if your rural carrier! I realized that you do have to keep looking for answers, because it seems like getting a diagnosis of any form of TOS is a difficult journey. And even after your diagnosis you have another journey in finding the right surgeon and treatment that you feel is right for you. So once again good luck with your surgery and I wish you the best and a speedy recovery.
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Unread 11-11-2012, 07:01 PM   #10
Joshuamr
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Default Questions about surgery

Hey everyone....my workers comp doctor finally gave me the authorization to go see a vascular surgeon, and finally agreed that i have Thoracic Outlet Syndrome. I have started my search of doctors and narrowed it down to some in state, and if i have to, some out of state doctors. I live in NY close to NYC and the only problem i have ran into so far is that a lot of the doctors don't accept workers comp cases. I am waiting for a call back from Dr Darren Schneider from New York Presbyterian to find out if he will accept my case. I chose him based on some good reviews. I was just curious about the surgeries to correct TOS. I know there are different procedures based on your specific diagnosis, but i was just wondering about limitations after these surgeries. I dont mean right after surgery, because i'm sure there are many limitations at that point. I am talking more about long term. I am in the law enforcement field, and in my line of work you have to be prepared to use all of your limbs at any time. Right now i'm completely limited to my duties and am sitting at a desk....which often aggravates my symptoms more! With a surgery such as a rib resection or when they cut part of your pec muscle.....does this limit your arm function or range of motion permanently? After the surgery is that area now more susceptible to injury due to the change of overall structure? (like a direct blow to the clavicle/Shoulder area, or a fall impacting that area). These are all things i'm sure my doctor could answer for me eventually....i would just love to hear some first hand accounts. After my surgery my jobs doctors are going to evaluate me in order to determine if i am capable of returning to work in a full capacity. This is why i ask other people who have had any of these surgeries their limitations. Thanks for your help and support.
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