[Gunner1960]

Injured in a fall in 1986 - finally diagnosed with Right side TOS in 1988, went bilateral in early 1989.

Had rib resection in 1988(June I think) worked for about 3 months....went back to even more severe and bilateral at that time.

Retired for medical in July 1990.

Treated by VA ever since.

Been an interesting road.

"You have TOS."
"You don't have TOS."
"You might have TOS."
"You may have had TOS."

Anyway...to sum it up...a LOT of tests later and over 20 years....

I have:

TOS(Bilateral Neuro/Vascular)
Fibro
Arthritis(L5-S1)

Constant pain body wide and no options left. The VA was talking surgery on elbow/wrist such as is done for Carpal Tunnel and Tennis Elbow....not interested.

Now for a question.

Has anyone had Nerve Root injections(I think thats what it's called)?
I am going for eval in early Dec and am trying to get an idea of the effectiveness of it before committing to anything. I also go tomorrow for eval for TENS unit and will actually get trained this time. Used one before but quit working after I left the hospital, probably because I didn't have a trained medical person to apply the leads where they would actually work.

Wife is now a Licensed Massage Practitioner in Washington State and will be able to help...just don't have a unit to use.

If anyone on here has any info on the injections and effectiveness I would greatly appreciate it.

Thanks

[gbsb]

Well, I'm back.

Was dx'd with TOS in 2006. Had a rib resection.
Never fully got rid of TOS symptoms in my opinion.
Just kind of dealt with it and got on with life. Now my symptoms seem to have returned with a vengeance.

Logged back in to look for some posts regarding people who've had relapses. It's depressing to see so many people suffering with what I do.

I've spent the last couple years ignoring my pain and discomfort and not letting on to people I was in pain.

Now it appears I've got to do something again.

Don't know who to approach. The surgeon who did the resection retired and moved. And I don't think my primary doc wants to deal with this again.

[mklexa]

I've had symptoms since I was 18. Misdiagnosed for the first 3-4 years, I had 2 needless surgeries before my 1st rib resection in '02. Still struggling daily though. . .

[MarketRisk]

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.

[kenn]

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.

[Jomar]

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

[BexUK]

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...

[Shadow1]

I'm 40, newly diagnosed with TOS by Dr. Hugh Gelabert at UCLA. I developed TOS through a variety of factors, mainly chest breathing, lots of stress/tension, and having to overcompensate for having a short arm cast on my right (dominant) hand for 6 weeks (plus not being able to use it 100% afterwards as I was going through therapy). My TOS is bilateral, left is worse. MRA shows greater than 90% subclavian artery blockage in arms raised position. There is also some blockage on right side. I do not have an extra rib.

So my course of therapy is to start with PT for 4-6 weeks. Dr. Gelabert mentioned the scalene blocks but I'll hold off on that for now. I've also taken about 10 Alexander Technique lessons and will continue with that as it's helped me to become more aware of the subconscious tension in my body.

To complicate all this, prior to TOS diagnosis, I was diagnosed with bilateral cubital tunnel; however, it could all be from TOS. I literally was ready to go under the knife at my elbow when TOS was thrown into the mix.

Anyhow, this is a great site and very insightful for all of us going through this "journey."

[Jomar]

Welcome all.

Just wanted to mention that sometimes the posts in this section get overlooked as they get bumped back in history due to the main TOS threads being more active, so it's good to make a new thread to say hello also.

TOS forum new thread link-
http://neurotalk.psychcentral.com/im.../newthread.gif

[chroma]

Originally Posted by Shadow1

So my course of therapy is to start with PT for 4-6 weeks. Dr. Gelabert mentioned the scalene blocks but I'll hold off on that for now. I've also taken about 10 Alexander Technique lessons and will continue with that as it's helped me to become more aware of the subconscious tension in my body.

Thanks for sharing. How is the PT going?

Also, where did you take the Alexander Technique classes if you don't mind me asking? I'm in the LA area as well.