Quote:
Originally Posted by SleepyGuy
Hi Everyone!
I'm scheduled to see Dr. Thompson in a few months. I've been struggling with TOS symptoms for 8+yrs and have seen numerous Doctors although no-one who specializes in TOS. I have scoliosis so my posture is slouch a bit which I think might be the cause. All my testing, (XRays, MRIs, EMG/NCVs, sleep studies) have been negative so I'm wondering if anyone else has had a hard to diagnosis case like that and what to expect when I go to St. Louis? He's a vascular guy so is he skilled in the neuro side of things?
I've had some folks (Good Chiro & PT) say T.O.S and MD say not positive for venous TOS based on maneuvers.
My symptoms:
- Have to Wear Night Splints or else I wake up with painful frozen hands
- Constant Perceived Bilateral Hand Weakness when I do where splints
- Hands / Upper Extremities go numb / tingling / Pain when talking on phone or laying flat
- Hands turn blue in certain position
- Very poor sleep quality unless I wear splints and use Neurontin (This is actually the ugliest part of this all). No sleep = No Life.
It's puzzling as their are some venous issues and some neurogenic issues. Any info on what to expect would be great. I definitely don't want someone to operate without a cause (which is one of my fears).
All the best!
Sleepy Guy
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I had similar symptoms to you. The vascular surgeons are best equipped to deal with all forms of TOS, much better than neurosurgeons who generally do scalenectomies only and generally cannot perform rib resections which is sometimes necessary. Most neurosurgeons don't even treat TOS. Dean Donahue is the exception as he is a thoracic surgeon and quite capable of doing everything the vascular guys do.
Generally you will have some vascular symptoms even if it is mostly NTOS. It sounds to me like you are having arterial symptoms (cold, blue hands) in addition to NTOS.
Dr. Thompson has some great info on his website which you should read.