Originally Posted by OzKira

Thanks for your reply Ans. I am sorry to hear the problems this dreadful TOS has on you. I don't blame you needing to make the decision not to have surgery.

I am a blood clotter with a genetic blood clotting disorder which is how I found out I have TOS after a 2nd PE and diagnosis of effort thrombosis 3 years ago. My 1st PE the year before my 2nd was after I had chiropractic work so I am not allowed many therapies as a precaution of a bleed or moving a clot. I did try pt and do know of the clinic in Prahran that you mention but my pt was not successful and caused a massive flare and more nerve issues since then. I can only do light stretches now. I am on blood thinners for life but they dont always prevent a clot. That's why I am left with no option but for surgery because of the compression. The non dominant side is starting to flare up now I have been forced to use it more so I will eventually have to have the left side done as well. A medical report I got recently said that the first clot originated in my left subclavian vein and travelled to my right lung. It was the worst PE but the 2nd one started in the right arm and travelled to the left lung.

After having my life at risk twice so far from this I dont want to take another gamble with it.

My husband understands my condition luckily because he is that kind of guy and also he suffers from chronic pain and back injury. We make a good pair but I am going downhill fast with what I can do and self care is now something he helps me with as well as everything else I can't do. Luckily I still have my brain which he is happy about because his medications knock his thinking about.

I really struggle and had to give up work as a result. Keep going as long as you can working on what you love. I still have hobbies I do when my hands allow it but it certainly isnt something I could get an income for. I love photography but recently broke an expensive lense due to TOS. I am finding I have to buy special things like shampoo dispenser for the shower and other things that help. We are also looking at getting taps changes to handle ones because I just cant handle the knobs on anything.

I have nerve damage from my C7/T1 disk which affects the Brachial Plexus nerve bundle. All this Dr shuffling is causing a rapid decline. I keep happy though and have a TOS group on facebook for those that continue their hobbies and other things despite the TOS. Some of them are professional eg creative arts and photography. They would be lost if they couldnt work. Between us we come up with ways and things that might and do help us be able to do things. TOS has brought some of us together and we have a great support network on facebook 24/7 worldwide for people to chat to.

One thing I did find useful at the start that I still do today for TOS related anxiety and issues with breathing is mindfulness meditation. It might help you with your singing with TOS. It has done wonders for me breathing and I dont have the chest pain I used to. It takes a bit to get used to but once you get the hand of it it does help and also helps take your mind of the pain. I would be lost daily without being able to do this.