I have both neuro and vascular myself and empathize with what you are going through.

I don't have the level of collaterals that you do though which makes me think you are closer to needing surgery. I have been able to put off my surgery as I developed some other conditions I needed immediate surgery for and as a result of time and PT I have been able to get some relief of my serious vascular symptoms. I will have the surgery, like you, when I get to the point that I must. I want to avoid clotting of course and having to make due with increasing symptoms compromising my life even further.

I too went to several surgeons and although I haven't seen Dr. Annest in person, I really liked all the information he provided to me over the phone and his proposed method of surgery. He did go over my Venogram, ultrasounds, and results of my 3D MRI/MRA/MRV with me over the phone after I mailed him my stuff. I think I would choose him for a surgeon if/when it becomes necessary.

I also have the pec minor problem and when I looked around only Dr. Sanders was offering this surgery. Long story... but basically when I went to Denver to meet Dr. Sanders, he asked me to have surgery locally instead of travelling to him as he felt my symptoms from my neck pain and prior neck surgery would make me a poor candidate for travelling. The local surgeon was just getting into doing the pec-minor surgery so I decided to wait until he had more experience. However, after doing a handful, he decided not to offer that surgery and I didn't like the idea of doing one surgery with him and then going back to Dr. Sanders for the pec-minor part. And that of course is 2 surgeries per side.

At any rate, now I have moved. There is a local surgeon who has a LOT of surgeries over many decades for TOS under his belt. However I would NOT choose him as his approach is what I am told "decades old". He is popular and well respected here. I offer this info just to remind you to make a choice that will truly support you for the best outcome.

you can PM me if you'd like.

best,
fern

That said, I have had relief of some level of symptoms when I got a long course of PT. It sounds odd, but the wmn does lymph drainage along with cranial sacral and myofascial. I have had many many courses of PT over the years and this was truly the right thing at the right time.

Carrie, a few more things. Dr. Annest said that a clot from this goes to the lung rather than the brain and is usually not fatal. I'd get in touch with him if you are able. Also I don't think this type of TOS is as rare anymore. And there's been a lot of publicity-several athletes have developed vascular TOS and have recovered and gone back to work. I've had a long, long history of RSI, cervical problems w/neck surgery and then the development of bilateral neuro & vascular TOS. The likelihood of dramatic pain relief from surgery is lower for me than for someone who gets vascular TOS and has surgery sooner. There have been several people on this board who have had surgery for vascular TOS. They may not be visiting the board now so I would recommend searching the threads for their surgery and post stories.

Hi Carrie

I think we made contact ages ago when you were first given a possible diagnosis of TOS - sounds like you've now slowly made your way through the system.

I'm now almost exactly 8 months down the line after first rib resection. I had both vascular and neurogenic TOS but the main indication for surgery was the vascular problem, no pulse, collaterals etc especially as I also had something called subclavian steal too which meant that when I turned my head to the right I cut off most of the blood supply to my head and fell over or got dizzy. I also have a family friend who had vascular TOS with a subclavian artery aneurysm who had similar surgery with repair of the subclavian artery so I guess I have two experiences to go on.

For her, she only had vascular symptoms and made a very fast recovery from her rib resection and all her symptoms went away. It's definitely true that if you have either other medical problems (like many people on this forum are unlucky enough to have) or neurogenic symptoms pre-op, then recovery is much harder.

All my vascular symptoms went away almost immediately and my repeat angiogram showed a really good result. Pre-op I had a clawed hand with no sensation and within less than 48 hours (when the neurologist turned up with colleagues to show off my weird neurology), I already had most of my power and sensation back. The rest however is taking longer - and don't underestimate how shattered you will be post op and how long it can take to recover. My neurologist tells me you have to wait till 18 months till you know whether you have any permanent loss of function and as my nerves were compressed for a long time pre-op, I'm trying to be patient.

However, I'm now back at work full time and have just returned from a cycling holiday - this time last year, I was still just at work but on a cocktail of so many meds and able to do virtually nothing. It is a hard choice to make to have such major surgery but sounds like that your decision is going to be made for you pretty soon if your symptoms get worse and this is definitely the kind of procedure I would want to have done electively rather than in an emergency situation....


Good luck whatever you decide

jenny