TOS rebirth-Help!
 

I am a victim of bilateral, Vascular TOS. In 1996 underwent a scalenectomy on the left that allowed me to go on with my life with modifications and although had some small flares I couldn't distinguish the old pain or the difficulties brought on my an accident and shoulder replacement in 2003. In 2012 I again had a double cervical disc fusion after injury. What I thought was residual numbness and pain in my right arm, is now being diagnosed as a return of the old TOS.

Since the neck surgery was so new, I assumed it wasn't corrected as I had hoped, but the neck I'm being told is fine, that the numbness, tingling and should/arm/hand pain is a return of the TOS which I had not repaired since fixing the left side seemed to help overall.

It's deja vu, now that I've been told that (the neurologist) didn't even know I had TOS in 1996 I can see the symptoms are the same hot/cold arm and hand, constant numbness in my hand with the feeling of wearing a baseball glove when I wake in the am. The pain that travels up my arm feeling like ulnar nerve compression and shoulder pain and stiffness which I thought was overuse from all the time my left shoulder was broken and the replacement performed. Apparently the cervical changes have made this rear it's ugly head.

Since it's been so many years postoperatively for the first scalenetomy, I have come here today to see what other people are doing for treatment. Have things changed in those 17 years?? I am miserable, need my arm back since I have at least 10 more years to go and have lost the ability to do anything I enjoy like driving a motorcycle, photography and gardening. Help!

If you read here long enough you will find that there are a select few doctors who really KNOW TOS. One such Dr. is Dr. Donahue at Mass General Hospital. Look him up.

Generally, scalenectomy only is indicated for some cases of NTOS by mostly neurosurgeons and proteges of Dr. Sanders (Annest, Avery).

VTOS treatment by vascular and cardiothoracic surgeons usually requires cervical and/or first rib resection in addition to scalenectomy/scalenotomy.

You costoclavicular space may still be compressed due to the rib and scar tissue could have built up on the brachical plexus.

Who was your original surgeon? I second the recommendation to consult with Dr. Dean Donahue.