[ccharris40]

I am 27 years old and was diagnosed with TOS 2 years ago. I am waiting for a call back from a surgeon to schedule a consultation. I was just wondering if anyone could fill me in on what the surgery / recovery is like. Its my understanding that i will most likely need muscle resection.

My main concern is that i'm fairly young and i will not be the same after surgery and be even more restricted than before. I'm a data enrty contractor and would also like to hear how long recovery time usually is with regards of going back to activities like typing.

I know im rambling here but its my first time ever posting on a forum for anything but... for the last week i've also started to have foot numbness on the same side that the TOS is effecting, does anyone else have this problem. Pain and numbness is getting worse by the day it seems, really starting to get me down. Thanks to anyone who responds!

[nospam]

Would you mind sharing your symptoms and what led to your injury and/or diagnosis?

It was very surprising for me to learn that TOS mostly affects young people under the age of 40. I am 37 now but I believe mine started 5 years ago.

[ccharris40]

Originally Posted by nospam

Would you mind sharing your symptoms and what led to your injury and/or diagnosis?

It was very surprising for me to learn that TOS mostly affects young people under the age of 40. I am 37 now but I believe mine started 5 years ago.

I began to have wrist pain and numbness in my first finger and thumb while typing. The pain is so bad when typing that it feels like my fingers are being it with a hammer when i touch the keys. A couple months after the initial numbness in the fingers i went to a hand surgeon to get tested for carpel tunnel. The doctor quickly ruled out carpel tunnel with an EMG and informed me that i have suspected TOS. He did the test where he put my arm up and behind my head and my hand immediatly went numb and he lost the pulse. A few months after that visit i began having terrible neck pain and spasms, starting behind my shoulder blade. I have been bounced around from Specialist to Specialist who all seem suspicious at first that i have TOS until they lose the pulse in my rt hand. I went to a Specialist just last week in hopes to have a nerve block, but he told me it would do little to nothing for me and that i need to see a thoracic surgeon. I have been through PT twice, unfortunatly the first PT i went to moved out of state, and she was terrific because she had been through it herself. The second PT i'm pretty sure was not familiar with TOS and made things worse for me.

[jkl626]

Originally Posted by ccharris40

I began to have wrist pain and numbness in my first finger and thumb while typing. The pain is so bad when typing that it feels like my fingers are being it with a hammer when i touch the keys. A couple months after the initial numbness in the fingers i went to a hand surgeon to get tested for carpel tunnel. The doctor quickly ruled out carpel tunnel with an EMG and informed me that i have suspected TOS. He did the test where he put my arm up and behind my head and my hand immediatly went numb and he lost the pulse. A few months after that visit i began having terrible neck pain and spasms, starting behind my shoulder blade. I have been bounced around from Specialist to Specialist who all seem suspicious at first that i have TOS until they lose the pulse in my rt hand. I went to a Specialist just last week in hopes to have a nerve block, but he told me it would do little to nothing for me and that i need to see a thoracic surgeon. I have been through PT twice, unfortunatly the first PT i went to moved out of state, and she was terrific because she had been through it herself. The second PT i'm pretty sure was not familiar with TOS and made things worse for me.

Where are you located? you need to find a neurologist or pain dr. that knows TOS. I went to 3 highly respected neurosurgeons who all told me I didnt have it and wanted to do disk surgery on me,before I found a dr. who diagnosed me correctly. check out the links for dr's in your area also this website:
http://surgery.wustl.edu/TOS_Features.aspx.

[nospam]

Get as many opinions as you can. Are you comfortable driving to Cleveland for the Cleveland Clinic? You are in Ann Arbor, MI correct?

http://my.clevelandclinic.org/heart/...e-webchat.aspx

I have a trusted neurosurgeon who believes that this surgery is best handled by the vascular guys. Most Neurosurgeons are overly cervogenic in their approach and don't see many cases of TOS.

[brmr19]

Dr Clair at the Cleveland Clinic did my surgery. He has understands the difficulties with TOS. He won't just do the surgery until you try PT first. He had me do over 8 weeks of PT before he did my surgery for arterial compression on the left side. My right side was responding to PT but has gotten worse and I see him again in May. My surgery helped with the arterial compression but still have some nerve issues on the left.

[Limoges]

Dr. Donahue at MGH happens to be a thoracic surgeon. He is one of the top guys in his field and is not a vascular surgeon, so it doesn't have to be done by one.

[nospam]

Originally Posted by Limoges

Dr. Donahue at MGH happens to be a thoracic surgeon. He is one of the top guys in his field and is not a vascular surgeon, so it doesn't have to be done by one.

I agree that Dr. Donahue is among the best. His bio reads: Board Certifications - Thoracic Surgery (Cardiothoracic Vascular Surgery)

I guess that means he can do it all!

I just don't think he is driving distance from Ann Arbor.

[nospam]

Originally Posted by ccharris40

for the last week i've also started to have foot numbness on the same side that the TOS is effecting, does anyone else have this problem. Pain and numbness is getting worse by the day it seems, really starting to get me down. Thanks to anyone who responds!

I have bilateral foot numbness that is due to lumbar disc compression (I just take Neurontin and deal with it...no need for surgery). I assume you are trying to get into see Dr. Walter Whitehouse of St. Joseph Mercy Hospital - Ann Arbor, Michigan for your TOS. If you don't already have a neurologist you should Dr. Whitehouse to refer you to one to investigate your foot numbness. You probably need lumbar spine imaging.

[Limoges]

Originally Posted by nospam

I agree that Dr. Donahue is among the best. His bio reads: Board Certifications - Thoracic Surgery (Cardiothoracic Vascular Surgery)

I guess that means he can do it all!

I just don't think he is driving distance from Ann Arbor.

Well, with a few stops, maybe!