I have just had surgery for rib resection and scalenectomy on the right side 7 weeks ago due to critical compression of the artery but when they did the MRI angiogram there was also a narrowing of the left side.
Has anyone else got bilateral arterial TOS and if so were they able to avoid surgery on the other side? I had a surgeon say its just a mater of time and I may need the other side done in the next 5 years. Is there anything I can do to improve the left side and is there things that will make it worse?

Yes I have bilateral arterial (and venous and neurogenic), and so far have avoided major surgery. I'm about to repeat CT-guided procedures where they inject a bunch of anesthetic into the scalene to try to blow up the muscle like a balloon, followed by Botox to shrink the muscle. I also rely on PT and meds, and Botox injections into other spastic muscles.

I may well have the surgeries, but those are some of the non-surgical strategies I've been using.

I think over-exertion, and bad ergonomics or body mechanics will make TOS worse, and anything that gives a whiplash-like effect. Anything that tenses the scalenes.

How is your surgical outcome so far? I haven't been able to use my arms unsupported above chest level for 10 years. I would love to get a real decompression in there. But I'm on the fence about surgery...

Can you tell me about your angiogram? I'm supposed to have one. (Also venograms.)

"I think over-exertion, and bad ergonomics or body mechanics will make TOS worse, and anything that gives a whiplash-like effect. Anything that tenses the scalenes."

I think this is great advice to try and prolong the time you have until another possible surgery on the other side.

I too have bilateral ATOS and I am having my surgery tomorrow (wish me luck ) but I have been told by the surgeon that I will have to have the other side done within a year or two depending on the increase in symptoms. Which, sadly, have been steadily increasing.

I read your response on the post op experience, and I am happy that you are doing better- speedy healing to you!!

I know that folks having A-TOS are hard to find, but I sure am happy to know that I'm in good company around here!!

Take care,
Jocelyn

I would suggest the same things.
Pay attention to your posture, alignment of the whole body, find ways to make troublesome tasks easier to do, take time to totally relax and deep breathe.
Like perhaps the corpse pose from yoga.

but for now give yourself plenty of time to heal from the surgery, be gentle with yourself.
avoid quick reaching or grabbing moves, rough, jerky, bumpy car rides etc...

Emmie, from what I have read, my surgery outcome is fabulous. I already have full rotational movement, the downsides are that the chest area is still numb, the muscles in my neck can be tight and I have pain in my elbow. My PT says the nerve pain is to do with the wasted muscles, I had no idea that having your arm in a sling for just a week can result in such debilitating muscles. I would recommend after surgery that you have gentle movement as early as is comfortable, this seems to speed the recovery.
The surgery isnt pleasant, for me it was about the lack of sleep despite being fully medicated. I was very jealous of the person whose nurse bought them a lazy boy to sleep on, I would have killed for something like that!!!
For me, there was only surgery as an option as I had already had had a blood clot go to my hand and I am hoping the residual symptoms are not permanent but its al ong way off yet to make that judgement.

The Angiograms - I had 3 on initial symptoms which diagnosed TOS. Singapore has the most advanced machines and equipment along with an ultra efficient health care system. In one day I saw a hand specialist, had 2 angiogram CT scans, saw a thoracic surgeon in the afternoon followed by a chest xray. Nothing was booked before that day!!!
However noone fully explains what you are doing. I felt a bit like someone on the amazing hospital race, I always seemed to leave an office clutching an piece of paper for my next appointment which I had to get to in the next half hour.
I felt a real idiot turning up for the angiogram ct scan and not even knowing it involved a needle!!! The scan takes about 20mins, that put a needle in, attach it to a machine and then I was left in the room. A voice told me that it was going to start and I would feel "warm". The drugs get pumped into the arm ( this can feel like burning ) and then in you go for the CT Scan. they did 2 consecutive ones, the last with my hands over my head. By the time I came out of the scanner, I needed help to get my hands back over my head they felt so dead.
My second opinion surgeon recommended an arterial angiogram, which I presumed was like the first, of course, I didnt ask, just turned up to my appointment the next morning. They wanted to check the state of the damaged artery. I was expecting the same as before however this was day surgery. They put a local in my groin and then pushed some sort of camera into the artery and up to my shoulder area. This was agony, hurt like hell and I had to lie flat for 6 hours following to stop the bleeding. I thought I would be out in a few hours so took noone with me. I felt pretty traumatised afterwards but happy it was over.

So now after tests and surgery I am a bit wiser. In the last week I have had my middle finger on that hadn go cold and numb now and again. I went backto my surgeon who has put me on Norgesic for a week but frankly I am so tired from the drug I can barely stay awake and am not capable of doing anything so thats why there are no symptoms. They want me to have another Doppler test ( no needles!!) to check the blood flow in different arm positions again.
It was so quick from diagnosis to operation (1 week and that was only because I had been taking blood thinners) that I truly didnt understand the long term recovery plan or pitfalls. I wish I had been given some sort of handout with what to expect, other pain to expect, this website has been my saviour with realising that what I am gonig through some days is normal. I guess though that Arterial TOs is fairly rare adn I was only the 6th operation the team had done in their careers, so I cant blame them. Its a very Singaporean approach to medicine.
Good luck with the operation, a speedy recover!

wow ! ! ! ! !

So glad you're through the worst part.

Do take care.

I loved reading your story. Good narrative. you're a natural writer.

This is encouraging for the two dealing with postsurgery this week I've read about. It is a scary surgery. You're very brave.

Do keep us informed.

Praying you recover Godspeed....