My name is Celi and I am scheduled for TOS surgery on Dec. 12th. I like many others saw several doctors as well as ER before being diagnosed. I have a Radial arterial occlusion from a blood clot and swelling and pain in arm as well as numbness and pain in fingers. I first saw the Vascular surgeon October 30th and last week decided to go forwrd with sugery due to blood clot which is the second one in my arm which is believed to be caused by the TOS. I am definately anxious and scared but know I can not go on in pain and risk of the clots. I am in Houston Texas and wanted to know if anyone in this area has had the surgery. I also want to know what to expect as I read so many stories of people that have had no relief but some that have. Thanks for a place to go that others understand

Welcome Celi,
Nice to meet you.
It sounds like yours is mostly vascular so the odds are better for improvement in those cases.

We have some various threads about surgery and pre & post op tips.

I hope you have found a wonderful and experienced surgeon and your recovery goes perfectly.

From everything I've read and was told by my sugeon, chances of a positive outcome are much better with vascular TOS.

Good luck,
Kelly

I hope all goes well. I have been doing so much research on TOS surgery. I have been dealing with this for a year and it's causing so many problems. I have major nerve compression going on and it's now caused inner ear problems. I have vertigo and severe balance dysfunction now. Oh, and hearing loss. Doctor's all agree that it's being caused from the nerve compressin in my neck. I have blue fingers, veins buldging in my hand..my veins look so gross. I seem to have all the classic signs of vascular TOS. I believe I will see surgery in the near future but I'm scared. I have heard so many bad stories about it but yet I've heard good one's too. The surgeon told me there are many worries with the surgery and it's very risky but...of course the but part...it may be the only way to get better....so what to do?????live with this or try and get better...are the risks worth it? I hope so. I wish you the best.

I wish I had been able to get my rib surgery earlier (than year 4) as it was a breeze. (I got ill due to another issue unrelated to the surgery while in the hospital - work comp adjuster wouldn't approve my regular meds.) I've had other surgeries - cesarian (sp?), hysterectomy, breast surgery, and this was sooooo easy. My scar is like 1 inch under my armpit - seriously. I went to Dr. Annest in Denver. I really encourage anyone to see the docs in Denver, and hopefully more than one for a good choice of options.

Haven't had surgery in Houston, but I have had two rib resections with Dr Ahn in Los Angeles. It wasn't bad, really. Certianly no problem compared to living with TOS.

If your problem is largely that of blood clots, you probably don't deal with a lot of pain on a daily basis. I've heard that people in your position feel better quite quickly. Expect a minimum of 1 week where you'll need help taking care of you, and another week or two of help with kids or other family, but after that, my experience was that I was pretty mobile. At 6 weeks i was definitley feeling as well as i did going in, adn started going uphill.

There is a lot of swelling post surgery, so you might have funny sx for a while directly following, but those will probably clear up.

Warm happy thoughts and best of luck to you.

Johanna

Saw the surgeon today to prepare for surgery next week. He said all my test and exam point to all three types of TOS which is very rare. He also says the venous and arterial syptoms should have immediate results but everyone is different. I also have been fortunate to get help pretty quickly and get surgery before any major damage is done. He said he will do rib removal, both scalene muscles and neorolysis as well as repair artery if any damage is there. He prepared me for the chest tube and what to expect pain wise in the beginning. I have faith in God that I am doing the right thing and he will see me through. Thanks for all your encouragement and kind words.

I wish you the best with your surgery Celi. My understanding, from having all 3 types as well and visiting surgeons but still awaiting surgery, is that the surgery should most likely fix the compression on the blood vessels but may or may not help the chronic pain that is I think mostly associated with neurogenic TOS and its compression. At least that's what I was told by the surgeons I visited.

When were you diagnosed?
What were your immediate symptoms??
And finally, what testing did the docs do in order to find the clot???

I started out years ago having mild numbness in little finger and diagnosed with ulnar nerve. It flared up on and off but would go away. I had a blood clot in my arm 3 years ago while pregnant and was diagnosed with Factor V Leiden, a blood clotting mutation so they pointed to that and pregnany, was treated then all was well until September this year. I am a teacher and was decorating and hanging posters on my walls.....arms up in the air above my head several days in a row for long periods of time. I started noticing pain in my elbow to hand, numbness, trouble sleeping, driving, blow drying hair,etc.. I went to see an orthopoedic, was sent for EMG then was scheduled for surgery 3 weeks later for the ulnar nerve. A few days later my upper arm starting hurting and was swollen. I went to the ER thinking I had a blood clot since I had been down that road in that arm before. No clot was found and I was sent home in pain, and no answers. I called the orthopoedic doc and he had me come in. Upon examining me he said I had a decreased pulse in my R wrist so he was cancelling the surgery and sent me to the local cardiovascular doc. He said tos but did not treat so I was sent to a crdiovascular thoracic surgeon. He immediately did an angiogram and found that a clot had traveled from the subclavian artery and occluded my radial artery. I no longer have a pulse in my r arm and have seen a hematologist, put on blood thinners and now scheduled for surgery to stop compression and further clots and make sure subclavian artery is not damaged. This is kinda the short version as my husband would say!!