We don't move for 6 weeks so packing a few boxes at a time. Luckily we are moving to a relatives house and cant move boxes in at stages with the big heavy stuff to go on a truck on the big day. I just have to convince my husband that we need to hire 2 men and a truck rather that DIY for which we will suffer

I got my results from my MRI and CT contrast from my Neuro this week. I have got some nerve issues at C7/T1 and some further disk wear further up the neck. I have degenerative disk disease on top of the TOS. As other have found Nerve Conduction Study does not always come back with a result of nerve damage. Mine was normal but I was having a good day and my strength and pain wasn't as bad as it was on my first visit to the neuro. I know TOS surgery will not help me with some of my symptoms but as long as the clotting issues are dealt with thats my main focus and always has been after several PE's http://www.ehow.com/list_6418699_sig...ted-disk_.html. I see my Vascular Dr next week to discuss the results and plan from here. I am still opting for surgery soley for the blood clotting issues and freeing up my veins, arteries and brachial plexus bundle but will see what the surgeon has to say next week. Also discovered on the MRI was a cyst at the side of the brain behind the nose for which I have to see the ENT specialist. This cyst may explain some of my sinus and vision issues that I thought may have been related to TOS. I will update further after my surgeons follow up next week.

Also there was problems with the contrast for the CT scan. They were unable to get the contrast to move when my arms were elevated as the compression blocked it from moving in the right and left side

I thought I would pop in and let people know I am still on the merry go round. The Vascular has just discovered (12 months later after CT) I have C ribs and my Neuro said I have nerve issues on my left Brachial Plexus which is what vascular has been going by. Well now I read my last MRI and it's on my right side not left!!! And they wonder why I have more issues with my left. They weren't reading the scan reports but reading each others notes which were incorrect. As a result I have no faith in either Dr and are being referred to the hospital clinic by my GP. I am waiting to have an angiogram to prove I have compression issues with blood supply on both sides. He is disregarding previous dopplers.

Always a good thing not to trust your Dr and double check the reports from tests. Yes they do get things horribly wrong

Hi Kira,
Sorry to hear you have extra ribs too. I have on both sides in the same position as you, but due to my singing I can't justify the surgery. I can't do operatic arias without thoracic rib age lift, and risk to the diaphragm is just too scary!

I only take mess about twice a week. The biggest problem seems to be for my husband tha I am always grumpy and not able to help with household stuff. But I can teach and sing, so am throwing lots of money at therapy, heat packs and dishwashers!

I am still struggling to find a doctor who will help. I have had amazing results with chiro and Alexander technique. I thoroughly recommend both to you. The chiro I have is light touch and no cracking. It is called network spinal analysis. Have a look at www.wellwellwell.com.au there is probably someone in Melbourne doing the same sort.

Penny loafer also posted something this morning about a clinic in Prarahn- doesn't help me, but see if you can find her post.

What I am struggling with is the constant decisions about what my body can handle and trying to explain to my husband that sometimes I just can't do any more. How are you coping with day to day?

Hope you find some relief.
Take care,
Ans

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.

Hi ozkira,

I am so sorry it has gotten so bad for you. Mine is annoying, but yours sounds so hard to live with. Schadenfreude I know, but I keep being reminded how good I have it from all you amazing people. I don't think I have a clot risk. Just possible dissection of the subclavian artery. Which would be bad, but not instantly life threatening as far as I can tell. It's just so hard to find people to help with day to day care. I don't know if you have come across Alexander technique, but it is non invasive and can help you to manage your condition, and help you to understand the musculature so you don't hurt yourself after the operation.

Good luck with it all. And do let me know how you are getting on.

I will have a look at the Facebook page. Thanks for this.