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


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Old 01-27-2010, 06:26 AM #111
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Default I think I'm home

think this is it. been >3yrs now since cycle flipped sideways. shoulder pushed up and spine over shoulder (helmet bouncing off road). funny bone hit for months. nervey up right cervical, down right thoracic, and out towards right shoulder. wasted. winging scapula. clunky neck. just such rubbish pain.

why is computing causing such problems?
why does using the arms?

i can't live like this. shoulder surgeon sending me for possible modified eden-lange or serratus anterior surgery. but i was just examined by a medic about 2 yrs ago and i had a MASSIVE reaction - whole nerves flared up (he was trying to figure out why the right side was more forward and down than the right). what to do? any recommendations? i am so scared. i was lying on the floor in agony for months and only recovered to how was before (rubbish if you try and do anything) over a year later.

what is wrong with me?! had axonopathic proximal plexus and spinal accessory nerve lesions finally in sept 09. had all of right cervical and thoracic spine denervated before then, because pain guy thought it was spinal. right, best go, arms hurting like ... anyone else have very tight thoracic spine and crushing pain around the chest (along with the rats eating your shoulders, heavy electric arms and cold hands, stabbing neck, aaargh!)

why me? my daughter is 7 (she was 3 when this happened) and all i ever wanted was to be a good mum and a hard worker. sorry, feeling down. pain consultant saying my doing computing for 22.5 hours a week is not 'an insurmountable' for me. wish he knew what this felt like when i type. can i show him anything? he probably just thinks i'm workshy (had 1, 2.5, 1, 2 days off sick in 4 years prior to accident, bar 4 days for missed miscarriage, have 1st from cambridge and a ph.d. and post-doc research), but my pain just becomes unbearable doing this or anything else like sewing, or hoovering, or keeping my neck and upper back rigid. i was/am a maths modeller / software engineer.

does this make sense to anyone? i feel so alone.

after doing an hour computing through the day yesterday i ended up where i spent most of 2007 (when i was forcing myself back into work). on the floor, on my front, with my hands and arms under my shoulders and thorax, with hot wheat pillows on my back and neck, a fentanyl lozenge in my mouth, and sobs of pain and frustration. i couldn't even collect my daughter from school 10 minutes away. her father had to, and he'd been up for work at 5am.

i feel so useless. unhappy smiley face.
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Old 05-09-2010, 12:13 PM #112
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Default New to thw Site, Not to TOS


Hi! My name is Tracie, I live in Santa Monica CA. I amfinally having surgery on my left side tomorrow.I can no longer deal with the chest pain....just found this forum by accident will checkin after surgery. I wasnot able to post a picture
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Old 05-20-2010, 09:02 PM #113
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Default Back to the TOS Problems

Had surgery for TOS Rib removal and muscles removed 16 years ago. This was from a card accident. Did ok after a while and 2 days ago some idiot rear ended us while we were stopped at the light. Here comes the paid shooting down the arm. Pain under the arm and hand killing me. Thought I finally was out of this. Don't know where to go or what to do at this point. We to urgent care they havn't a clue.....
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Old 07-10-2010, 04:23 PM #114
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Hi all,
I was hurt at work in 2007, diagnosed with TOS in 2008 have cervical ribs on both sides. I hit the jackpot and have venous and neurological TOS. Had TOS surgery, removal of 2nd rib surgeon couldn't reach 1st rib in Sept. 09. Relieved some symptoms, still have numbness, tingling, right sided weakness, someday's have blurry vision and migraines that continue off and on. Have major flareups that cause a lot of pain in shoulder, neck, and arm. Also have back pain and right leg pain. Had an ovarian venous thrombosis in February that doctors claim is unrelated to TOS. Workman's compensation in California is not good, everything gets denied therefore limited treatment in form of physical therapy, or chiropractor. Have had steriod injections for pain relief, no botox yet. Surgery did help as i no longer get dizzy, or have symptoms of a stroke. Hospitalized twice in past with stroke symptoms because my arms were lifted over my head. Unable to work full time since May, was on partial work schedule off and on for over year and a half.
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Old 07-19-2010, 02:17 PM #115
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Default TO surgery 3 weeks ago

I was involved in a car accident Nov 09. My life has not been the same since. An 18 year old ran a stop sign and T-boned me and totaled both cars. Eventually after symptoms started to appear had Cervical Fusion Surgery C5-6-7 at end of March. About 7 weeks later I was diagnosed as having thoracic outlet, both sides, right side worse. After much thought I decided to have my right side done 3 weeks ago. My brother had to have both of his sides done over the last 20 years which helped in my decision to do it. My surgeon, who was his on his last side done, is one of the top in the area. I did not expect the pain, I was in afterwards, and the slow recovery. I am concerned that the TOS pain has really not gone away. My doctor seems to also be a little bit concerned but my brother did not get relief right away, so I am hoping with time the TOS pain will go away. The surgical pain and numbness is in armpit and back of arm (tricept), I am told, is normal and eventually will get better. That I can accept, but am still concerned that the TOS pain is still there, arm and hand. I was a mess according to the surgeon and he had done many first rib resection surgeries. Hopefully time will heal this to my satisfaction. Have not had PT yet. Hope that helps to although people I have heard have had mixed results.
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Old 07-19-2010, 04:00 PM #116
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Feel free to make a copy of your post and place it in a new thread for yourself down in the main TOS forum section - sometimes if there's only a single post up here the members miss it.



Follow this link to make a new thread for yourself on the main TOS section - http://neurotalk.psychcentral.com/ne...newthread&f=24
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Last edited by Jomar; 09-03-2010 at 07:31 PM.
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Old 07-19-2010, 08:42 PM #117
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Default New Philadelphia TOS patient bilateral

I have been diagnosed with bilateral TOS and it is destroying my life and fast. The pain is absolutely horrible on both sides....plus at 31 I jave cervical disk degeneration. I really think the chiro messed me up more. He was using an activator gun on the my back and neck before I even had mri's done to tell me that I have a herniated disk at c5-c6 and degenerative disk disease on multiple levels. You would thing that I was rear ended by a mac truck. What brought this all on was me walking up almost 100 steps with my 13 pd. daughter in one of those frontpack carriers...it straps on your back and you carry them in the front...don't know what I was thinking...thought I would get exercise I guess...but instead of taking the elevator I decided to walk up 8 long flights of steps with her strapped to my chest...horrible, horrible mistake because when I got to the top I seriously almost passed out, was sweating and in pain. As the weeks and months passed and several chiro and PT visits later I got much worse. I am not sure what to do now
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Old 09-11-2010, 02:30 PM #118
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I haven't been officially diagnosed with TOS yet, but my GP is leaning that way. I've had a cervical X-ray and MRI that has come back normal, EMG test on my arms that showed no peripherial nerve damage and now I'm being sent for a MRI on my entire chest and shoulders. I have pain in my neck and shoulders. Left side is worse than the right. Hand whitening and reduce radial pulse on my left arm, when stuck straight out to the side. My biggest complaint is the pain in my chest, especially behind the pectoral muscle where it goes up toward the shoulder. Does anybody else have terrible chest pain with their TOS? Thanks for the help.
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Old 09-18-2010, 05:24 PM #119
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Hi there,

I've just joined this site, although I spent quite a while reading other people's posts on here when my TOS was diagnosed.

I'm a medical student, so it was really discovered by chance when I realised that the pulsation in my neck wasn't normal! It had been there for years, but when I saw a vascular surgeon (he decided to do a doppler ultrasound and a CT angio) he diagnosed it as arterial TOS.

I have a pair of extra ribs, but the right one was causing my subclavian artery to be constricted and as a result had developed a pseudo-aneurysm (what I had seen pulsing in my neck). I'd also had some splinter haemorrhages in my nails due to micro-emboli in my fingers of my right hand and was strongly advised to have surgery as the surgeon thought that there was a high risk of eventually getting thrombus in the subclavian artery, potentially cutting off the circulation to my arm. He also put my on aspirin to try and prevent this before the op.

A lot of the symptoms I'd been getting suddenly made sense - aside from the pulsation in my neck, and the splinter haemorrhages, I also had a colder right hand, and got tingling in the little finger of my hand intermittently (it turned out my T1 nerve was also hooked over the rib).

I went ahead and had the surgery 3.5 weeks ago. The surgeon removed the scalene muscle and the cervical rib (I got to see it, and it was so much smaller than I'd imagined!) but had to make an incision above my clavicle to get access to the artery. It went well and I've been back at uni for the past couple of weeks... no info yet on whether the artery has repaired itself, but I have an appointment in a couple of weeks to find out...
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Old 10-08-2010, 11:26 AM #120
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Well i have TOS in both shoulders. My TOS was caused by large pendulous breasts. I had a reduction mammaplasty in July of this year to try and relieve some of the symptoms. It helped alot. But symptoms are still there, just not as bad. It seems some symptoms are better but some are worse. I have had TOS for a few years. I always new something was wrong, just didn't know what. My collar bones (both) are deformed. They are pulled down From the weight of my bra straps. I have dents and scars on my shoulders from my bra straps. My neck is curved weird. So the orthapedic surgeon told me. He says from the back view, it curves to the right? He was the one who told me i had TOS. My left shoulder seems to hurt alot, along with my arm and the last 3 fingers and part of my hand. The pain is worse in my left side. I also get the burning sensation in my left side. My right side hasn't done the burning thing since the surgery. My left arm is extremely weak. Now my right side has the pain in the last 3 digits of the fingers, part of the hand and a spot right in the middle of my forearm. Those same places also feel like someone dips them in ice water. My right arm is always cold and icy feeling. When i go and pick something 15lbs or heavier up from head height my arms stop working. IT is the only way i know how to describe it. One minute i am holding the object, the next it is on the floor and i cant move my arms. They eventually start working again it takes a minute or to. I avoid picking up anything that triggers that nowa days. I guess i will quit jabbering. But that is part of my story.

Last edited by Jomar; 10-08-2010 at 12:31 PM. Reason: a copy of this is placed in a thread of it's own for hellos
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