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

I'm also absolutely terrified of developing a blood clot or aneurysm

I have V tos too and i'm scared too

Compression syndromes may cause aneurysms due to chronic traumatic damage. We can control by echo-doppler if there is aneuvrysm.

I would make sure any surgeon does plenty of testing to know exactly where the compressions are before going in and just "guessing" at what might fix the problems.
Why cut more than what is needed to reduce the compression.

tight scalene's might be able to be resolved with expert PT - not exercises or things like that I mean ultrasound, LLLT, massage, triggerpoint work...passive for you they do the work.


Make sure the surgeon is very skilled & expert in this subject.

There is always a chance of scar tissue issues down the road.

I'll add more pros & cons later on

I've had a CTA and MRV so far. I'm about to go to UofMichigan to have some more extensive testing (C-Spine XRay, CT with specific TOS protocol, EMG, and arterial and venous ultrasounds) so the vascular surgeon can get as xomplete a picture as possible of my specific anatomy and compression areas. I know the CTA said something about the scalene muscle being involved and no extra rib or bony abnormalities. That gives me a bit of hope about non-surgical options.

Are LLLT and triggerpoint work common therapies that PTs use? Did you have to search around to find a PT who knew how to treat your TOS? I know in another thread you mentioned having some arterial involvement, have any doctors tried to push surgery on you?

My chiropractor is the one that uses ultrasound, LLLT, IF stim (electrical stimulation) & triggerpoint as needed for me now.

Most other PTs usually would do ultrasound & massage and that was it.
then the stretches, then advancing to more active things - but mostly I was lucky that they didn't ask me to push ahead too fast.

My arterial sx are very mild now, and as along as I keep up w/ my home stretches, posture awareness- i can maintain pretty well.
Technically I don't have a formal dx by any MD, probably because my symptoms were not severe enough to warrant a bunch of $$ testing.
I improved a lot with finding an really good chiro and I also had found a teacher of PT that had his own clinic, he was very helpful and I shared the info with my chiro.

The pictures I have on my profile page are things he suggested to me.
He said that everyone really should be doing these to avoid the forward head & shoulders postures that modern life & jobs put us into.

Even just sitting in a chair most of the day, you body will change after many years of that.

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.

Wow, that's great that your pregnancy was a break for you! Did your venous symptoms subside as well? I may never have realized I even had TOS if not for getting pregnant! Looking back I can see I had some mild arterial and nerve symptoms for a while, but the vein problems only showed up while pregnant.

What imaging studies were done to show your compression on the left? Is it constant compression or position dependent? What is the advice of your doctors regarding surgery? I just figured vein and artery problems required immediate surgery, so when my local doc said he could operate now or five years from now and it wouldn't make a difference I was pretty shocked. Although he insists that only repetitive over-the-head motions cause clots, and I'm not so sure about that if there is compression already.

Raising the arm don't close scalenes space... but costo-clavicular.

So if you have more trouve when arm is abducted, it may be cc


tight scalene's might be able to be resolved with expert PT - not exercises or things like that I mean ultrasound, LLLT, massage, triggerpoint work...passive for you they do the work.

Stretching ?

Hi

Welcome to NT

There's lots of info here for you to go through.

It's full of helpful hints and ways we've manged to overcome and carry on.

Keep us posted as you go along. We've been there.