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