I'm still in the dealing with doctors who don't have a clue phase. I'll try and make my history brief as possible (ok that wasn't very brief... sorry!)...

• Noticed symptoms in late 2006. I thought I was sleeping on my arm funny to make it numb.
• No accident.
• 1/07 Pointed out to my Orthopedic (for my lower back) that my hand goes numb if I hold it up. He did Adson test and noticed I completely lost my pulse. Sent me to hand doctor...
• Hand Dr. said possible TOS, but he doesn't treat tos... numbness faded some so I didn't go do nerve tests.
• 6/07 - headaches started. Assumed it was stress (had no clue headaches were a symptom of TOS).
• 6/07 - Family dr put me on anti-depressant for stress headaches/muscle (neck/shoulder) tension.
• 10/07 headaches so bad I asked for stronger anti-depressant. He tried adding a light dose of a 2nd one. HATED how that made me feel so I dealt with the headaches.
• 10/07 - 1/07 massages as I could afford them. 1 hr deep tissue massage focused on neck/shoulder doesn't do squat.
• 2/07 - no stress at work anymore... thought maybe it is sinus headaches... even went and got allergy testing done.
• 3/08 - Went to general orthopedic for the problem 3/08 because the numbness/pain/tingly in my right arm was getting worse and is to the point where I'm having trouble working. Pain in the neck/headaches is also a huge problem. I do computer support so I type/mouse 9-10 hrs a day 5 days a week.
• March & April '08 - tests... tests... and more tests...
  • total body scan - rule out any bone tumor/arthritis
  • complete blood/urine tests - normal thyroid. No indicator of RA.
  • c-spine xrays (no extra rib)
  • EMG/NCV of ulnar and median nerves - normal
  • dopplar study - showed "strongly abnormal thoracic outlet evaluation with near complete occlusion of arterial waveform to the right upper extremety at nearly every degree of limb manipulation"..... left was moderate occlusive waveform. (left doesn't really bother me).
• Vascular surgeon consultation (didn't like him - Dr. Azizzadeh - supposedly he does TOS surgery in Houston) - he said he thought it was neurological (eventhough he had the dopplar test results in front of him... just because my hand didn't turn blue if I open/closed my fist).
• My orthopedic dropped me... said "do pt, then if that doesn't work get the surgery, and if you have problems after you've recovered from the surgery come back and see me again" (yea right!)
• My family doctor is trying to help (ordered MRI that Physical Therapist suggested). Family Doctor knows what TOS is but said he's never seen anyone who actually had it. At least he admits it and he didn't just dump me off with noone else to go to so 2 brownie points for that at least.

Coming soon:

• c-spine/shoulder MRI - to be done tomorrow.
• Nerve testing of thoracic outlet scheduled with a neurologist for 6/23 (I could try another neurologist to see if I can get in sooner... but don't know who else to go to in Houston)

If I have arterial blockage (as indicated in the dopplar), is it more important to see a surgeon (one who knows what they are doing) sooner rather than later? Right now I'm just waiting for nerve testing appointment. I don't even know if this neurologist is any good. I was refered to him by Dr. Noon (Houston Baylor Dr who supposedly treats TOS).

I don't even really have a doctor at this point so I'm not really sure what to do next. I only got the name of the neurolgist by calling Dr. Noon's office a bunch of times saying "there HAS to be someone I can see between the orthopedic who diagnosed it, but won't/can't treat it, and the surgeon.

I'm still reading through post histories on here but ANY suggestions would be greatly appreciated!

I love how clearly you laid out your history

So are you having any kind of good PT now??

My thinking is - you didn't have these symptoms before - so you should be able to turn it around {with an excellent care team} without surgery.

How is your overall posture? upper body posture?
Bad Habits & such- holding a phone with shoulder to ear, desk not ergonomically set up, sitting crooked or tilted often

That is one main thing to address, if the head or upper body is rolling forward or hunching and causing some of the trouble. This happens over time and takes a long time focus to turn it back around.

No Drs mentioned clots or anything??

Thanks for your reply!

I'm in PT now, but I've only had 6 sessions. My PT seems to know what TOS is. Mostly doing neck stretches and working on shoulders/improving posture. Tingly/numbness & neck pain seems to be getting worse, but that may be normal. Just doing the neck stretches is very difficult (plus I've been doing similar neck stretches for about a year at work during my typing breaks because my fingers get so cold).

My workstation isn't the greatest, but not the worst I've had. My monitors need to be a little higher. I have trackball and switch between that on right and mouse on left hand. ergonomic keyboard. Waiting on work to get me ergonomic eval so they will order the kboard tray and monitor arm.

I don't think I've gone to a doctor yet that has a clue enough to tell me if there is a clot of any type.

My mom has ALWAYS nagged me about my posture (slouching my shoulders). I'm 41 now. She's been on my about that for about 20 years now. I know I need to focus on posture.

I've had problems with my hands getting cold when I type (even with frequent rest breaks) for probably 15 years. My right wrist is really weak. I always thought I was developing carpal tunnel but that's been ruled out now.

Are they doing any heat /ultrasound/massage/ trigger point?? besides the stretching?
IF stim is nice as long as they don't turn it up too high.
and low level laser is great for really sore spots and trps.
Do they know about trigger points?
Have they mentioned if you are having muscle spasms? {a locked up feeling of some muscles}

But actually my chiro did the IF stim & the LLLT, PT place didn't.
And he was the one that fixed me up when I was having severe spasms in my scalenes , SCM and traps.
Now our new drs office has PT /clinic and lots of testing equipment on site.

I found a lot of videos at the library about Alexander technique, Somatics for posture, it was something that helped me, to see it and replay it so it sinks in...
I soaked up some much bodywork stuff from books and tapes & just took what helped and made sense for me.

If you didn't see our useful sticky yet - it's a crash course of of sorts - links to videos , sites, articles-
http://neurotalk.psychcentral.com/thread84.html

Hello, I live in the Houston area. What is the name of the neurologist you have an appt with? My Neuro is on the north side of Houston. However like most doctors they are pretty booked up and it takes weeks to get an appt. He is the one that ordered the doppler ultrasound on me to diagonse TOS.

Roy -
I acutally live on the north side of town. Dr. Kant at KSF Orthopedic diagnosed this and sent me to PT, but he doesn't know how to treat it so I'm looking for a doctor who can manage my treatment in the phases in-between diagnosis and surgery (which I'd prefer to avoid if possible).

Dr. Noon (surgeon noted on this and other TOS websites) referred me to James Killian (Baylor-Houston Med Center) or Igor Cherches (The Neurology Center of Houston). Both are in the medical center. I haven't seen either yet so I can't give an opinion on their knowledge. I did talk to the receptionist at Dr. Cherches. Not sure I feel all warm and cozy about their knowledge level of TOS (especially if you have vascular & neurological TOS). I'm waiting for a call back from Dr. Killian's assistant (just called them a few minutes ago).
---------
For my PT... My therapist said I'm only the 4th person he's treated for this and the 1st that wasn't a result of a trauma/injury. I don't know if I'd find a PT around here that has more TOS experience though (or how to find who that person may be). We're doing heat, TENS, massage, trigger point, stretching, postural training (strengthening muscles in shoulders/upper back to improve posture). He tried some machine that does traction, but I like the TENS better. Every session he's adding something new. I didn't ask, but it seems like he may be researching it and adding new things.

They haven't said anything about muscle spasms, just that my neck muscles are EXTREMELY tight and have had to modify some of my exercises so those muscles aren't aggrivated.

I haven't seen a chiropractor yet, but the massage therapist who had been working with me on my neck/shoulders before I was diagnosed gave me the name of someone she likes in the area. Not sure if they treat TOS.

Thank you for the link to the resources.... I've definately got alot of research to do still!

My neck muscles wouldn't fully release until the adv PT tried the top rib mobilization/lowering technique - and that was months after the spasms were gone that I went to him.

chiro did do NIMMO {trp/deep slow pressure stretch type thing} on my scalenes & SCM * upper chest muscles -right under collarbone.

That relieved a lot of discomfort but the top rib dropping was a final big fix for me. chiro always checks it at my monthly appts now.

I'm not positive what this is. Is this when your laying on your back with the therapist behind you and they press down on that top rib?

probly. my PT and chiro both adjusted and dropped my top ribs, but they always popped right back up....

Don't know why Jo was so lucky But she was.


my favorite 2 PT's were 1. a feldenkrais certified practitioner and 2. one who was trained in a lot of ostepathic techniques. Both looked at my body as a whole instead of just at my collar bone area (like the first PT'ers did) if PT is making your symptoms worse, tell them that and don't strain yourself. What you need is help relaxign your muscles.

I need to find a way to post something i read out of Egoscue's work, re posture, e-cises for headaches and TMJ...good stuff. Not as foolproof as he might suggest, but helpful for sure.

i know Jo had a post about him a while ago, i should go dig it up.

in any case, good luck to you both- I would vote neuro/pain mgmt doc for treatment shoudl you be able to find one. adn I think the bloot clot (vascular) folks are the onyl ones who need rush to surgery. if you are arterial you could try some good PT for a while. I also had a good xperience with botox injections.

Hi Colleen,

I'm concerned about exactly what your PT is having you do:

"For my PT... My therapist said I'm only the 4th person he's treated for this and the 1st that wasn't a result of a trauma/injury. I don't know if I'd find a PT around here that has more TOS experience though (or how to find who that person may be). We're doing heat, TENS, massage, trigger point, stretching, postural training (strengthening muscles in shoulders/upper back to improve posture)."

What type of stregthening are you working on ? I'm hoping it's not weights or therabands, because both of those modalities started too early are known to worsen TOS symptoms in many people........they sure did on me ! Be careful if the PT is making you have more pain !