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Originally Posted by pixified
Greetings, all. I have recently been diagnosed with bilateral TOS. Imaging shows compression of my arteries and veins when my arms are raised. I have nerve symptoms as well but haven't had any testing done for that yet. I have tried PT but it exacerbates my symptoms. I am contemplating surgery and have a few questions for those of you with vascular TOS:
1. From what you have learned, is surgery necessary when you have vein and arterial compression?
2. What type of surgery have you had (rib resection, scalenectomy, etc)?
3. For those of you who have had surgery, did it completely resolve the vein and artery compression? If not, was there a reason why it wasn't successful?
4. For those of you who have had successful surgery, how has the long-term outcome been? Are your veins and arteries back to normal now?
5. Have any of you lived with vascular TOS for a while without developing any serious complications (clots, permanent blood vessel damage, etc.)?
Thanks! This is all so very frustrating as you all well know. I'm trying to care for an infant (my TOS became apparent during pregnancy) and I'm just not sure what to do. Caring for her worsens my symptoms and I'm starting to feel like my only chance at taking care of her and regaining my former quality of life is to have the surgery. I'm also absolutely terrified of developing a blood clot or aneurysm  |
Hi! Sorry you're dealing with TOS and trying to take care of an infant. My youngest is 3.5 months old. For me, pregnancy was a temporary relief from TOS symptoms on my non-operated side. I developed TOS from two separate incidents/injuries on each side. Right side was primarily neurogenic triggered by an MVA but I was predisposed to TOS due to a large bone tumor on the 1st rib. Surgery was 6 yrs ago this month and so far successful (complete relief of symptoms - keeping fingers crossed). On the L side, I was diagnosed with the venous & arterial TOS 2 years ago (~70% compression) but I also have a cervical rib on this side so once again I'm predisposed to TOS. My left arm currently goes "dead" if I raise the L hand to shoulder height. Even though I had success from TOS surgery on the right, I'm still hesitant to jump in and have the left done until the symptoms are severe enough or I develop the blood clot.
I can't speak to surgical outcomes for vascular reasons but people who opt for surgery for vascular TOS tend to do better after surgery.
Caring for the infant - it might get easier as they get older even though the weight slowly increases. They start becoming more independent and spending more time playing. My 1st didn't want to be held at all. This one is the opposite.