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


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Old 02-15-2011, 11:51 AM #11
Anne4tos Anne4tos is offline
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There is no 85% success rate with N-TOS. The rates Jo Mar had and Tossucks are the rates I have heard. They quoted 50% for a bit, but then as they track more patients long term the number deteriorates.

Removing ribs and muscles is not the answer to this thing. There is no answer yet.
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Old 02-18-2011, 05:51 AM #12
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Originally Posted by tannemich View Post
i was diagnosed with tos in may 2005 from a work injury. my surgeon says i have the worst kind - neuropathic. i have been on tramadol, the max dosage per day, for almost 6 years now. i have been on methadone for a year, and now dilaudid. i work full time as an insurance adjuster, so i am at a desk and computer for 8 hours a day. i am finally having surgery in 2 weeks, for the 1st rib resection on my left side. my surgeon wants to wait and see if we need to do my right side also, but i know we will have to.
i'm scared. i'm on such high meds my surgeon won't prescribe me meds for after care. i have to have a pain pharmasist. he said we are going to have a hard time getting your pain under control. i'm scared after the after care and what to expect. will i be able to use my left arm? how long is the recovery period. surgeon says i'll be back to work in four weeks. is this true?
i'm starting to take out my fear and frustration on my loving boyfriend. my ex-husband couldnt handle this at all...he actually said no one else will love you with all your medical problems. that's another story. i don't want this to affect my relationship. i love him so much and he doesnt derserve to be the target of my frustration. it's like i can't let the little things go. and i'm MAD! i'm not like this. this is not me. i know it's the anxiety from the upcoming surgery. i don't care about any scars, i just want my life back. i want to have a baby. i want to be a good (future) step mom. i want to hold my babies. i want to garden, and walk my dog, and i want to work out! i can't even do yoga anymore. sometimes it just feels like there isnt a point to it all. my surgeon is not hopeful this will cure me. i know it's an 85% sucess rate, and he is a really good surgeon, so i'm sure that's why he is concerned...cause it's not 99%.

any experience's with this surgery, or how you have handled life would be so appreciated. my boyfriend is the only person who actually understands everything about this, and he cares about my health. he doesn't deserve for me to pick a fight.


Hang in there tannemich, im only 20 and i had my left side done with a scalenectomy on dec 1st. i found myself over stressing so much before the surgery that when i had it, it wasnt as bad as i assumed or the world told me. i also have neuropathic and am just starting pt and occupational therapy to learn how to use my hand. pain management docs are saviors and they understand the extent of the surgery. have you heard of ganglion nerve blocks ? or stimulators. theres loads of things to help! i had mine above the clavical. its a heavy scar but its safer according to my surgeon bc of all the nerves. ik the whole ordeal is terrible trust me i had to drop outta school and loose my scolarship i was nuts about this but it gets easier promise!!!
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Old 03-01-2011, 12:24 AM #13
2laurie2 2laurie2 is offline
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Please let us know how surgery goes- I also am considering surgery for this.....also live in Sac....I totally understand your fears- I am a bit older (47) and have had children but am afraid I will not be able to hold a baby when I have grandchildren- I tried to hold a friend's baby and could not handle it.....I am also worried that I will not be able to function at work- it gets worse every year......I love my job and would hate to do nothing! I am not on any narcotics but am on neurontin- just started. The bummer of TOS is that it makes you want to do nothing- just come home from work and lie down......I have had four thoracic vascular surgery consults and all had differing opinions of the symptoms.......12 doctors in three years......interestingly, the one who had the most experience gave the most promising opinion of surgical outcome and was able to give me a lot of information about the specific nerves causing the problems/symptoms. For years no one could tell me if the scapular burning pain (severe at times) was related to the bilat ulnar nerve pain. I recently found out that if I press right under clavicle, the scapular pain is totally reproduced- it was like a lightbulb went off.....yes, it is related and due to compression under the clavicle. I have tried almost everything (everything that is evidence-based) as well as Rolfing which is not evidence-based but I wanted to try as much as possible.......now looking into Botox into pectoralis/scalenes but I do not know if anyone around here does this (one of my MD is checking). The research I did is not promising for the botox- if anything just temporary with risk. I do not know of any other disorder that causes so much frustration!

Good Luck and please post after surgery!
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Old 03-03-2011, 11:44 AM #14
dsikma@msn.com dsikma@msn.com is offline
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Quote:
Originally Posted by tannemich View Post
i was diagnosed with tos in may 2005 from a work injury. my surgeon says i have the worst kind - neuropathic. i have been on tramadol, the max dosage per day, for almost 6 years now. i have been on methadone for a year, and now dilaudid. i work full time as an insurance adjuster, so i am at a desk and computer for 8 hours a day. i am finally having surgery in 2 weeks, for the 1st rib resection on my left side. my surgeon wants to wait and see if we need to do my right side also, but i know we will have to.
i'm scared. i'm on such high meds my surgeon won't prescribe me meds for after care. i have to have a pain pharmasist. he said we are going to have a hard time getting your pain under control. i'm scared after the after care and what to expect. will i be able to use my left arm? how long is the recovery period. surgeon says i'll be back to work in four weeks. is this true?
i'm starting to take out my fear and frustration on my loving boyfriend. my ex-husband couldnt handle this at all...he actually said no one else will love you with all your medical problems. that's another story. i don't want this to affect my relationship. i love him so much and he doesnt derserve to be the target of my frustration. it's like i can't let the little things go. and i'm MAD! i'm not like this. this is not me. i know it's the anxiety from the upcoming surgery. i don't care about any scars, i just want my life back. i want to have a baby. i want to be a good (future) step mom. i want to hold my babies. i want to garden, and walk my dog, and i want to work out! i can't even do yoga anymore. sometimes it just feels like there isnt a point to it all. my surgeon is not hopeful this will cure me. i know it's an 85% sucess rate, and he is a really good surgeon, so i'm sure that's why he is concerned...cause it's not 99%.

any experience's with this surgery, or how you have handled life would be so appreciated. my boyfriend is the only person who actually understands everything about this, and he cares about my health. he doesn't deserve for me to pick a fight.
I had surgery 5 weeks ago...rib resection, scalenectomy, minor pectoral clip of ligament. I wish I could tell you that it has been a breeze. I am a nurse and didn't imagine what I might encounter after this surgery. I had caught a falling patient in july 09 and suffered for months until I was able to have surgery. I stayed in the hospital for 5 days and another 2 in a hotel that was attached to the hospital in case complications arose. While in the hospital, I was on a pain ball which allows medicine to go directly into the brachial plexis area. My arm was completely 'dead' at that point. After the ball was removed the feeling in the arm came back and I was able to go home on oral pain meds...percocet, oxicontin, robaxin, ibuprofen. Quite honestly, this has been a horrid recovery at this point. I am able to move my arm, however, it is painful, and very weak. My chest, neck, and side of face continues to be numb. I am going today to my second physical therapy. The long thoracic nerve is causing my scapula to 'wing', which means not working properly. The phrenic nerve which controls breathing was also not working properly, however, it didn't make me feel short of breath, and should resolve. The pain meds I have to take have made me a zombie over the course of 5 weeks. I haven't been able to drive. I have 4 grandkids and can't drive to see them, or at this time even lift them. The incision area to the neck is very sore and swollen. I can't imagine being able to go back to work at any month soon. I love my job and it is very depressing. I am sure by now you have had your surgery and would like to hear how you feel now that it is over. I do not want to be discouraging, however, this recovery is so much more difficult than i imagined. I am hopeful and praying that it will get better with physical therapy and time. Good luck to you!
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