Quote:
Originally Posted by TraceyW
Hi Ozzy,
Im from the UK and like you feel that there is little knowledge (or perhaps understanding or acceptance of it) by the doc's over here!.
Im going to have a MRA to look at blood vessels next friday, think they will take it with my arms by the side and then up over my head, whilst lying down. My pulse does diminish on the adsons test so seems that vascular tos is something i probably have!. Sounds like your symtoms are quite similar to mine - colour changes etc.
Have you had any surgery?
This forum seems fantastic for support - i felt like i was the only one suffering until i stumbled across this website!....everyone has been so nice and helpful
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Hi, Yes I do think I have vascular TOS as my pulse also goes away. Your test sounds similar to what I had done, it was like a ultrasound of your arms. Im not sure if its called something else in the UK.
You will find some fantastic people here and some excellent information from people like Jo etc.
As for surgery......I would like to have my C5/6/7 problems fixed first to see if it makes any difference. The Dr's want it the other way around they want me to have the TOS surgery then the neck surgery. Also, there are not many Dr's who have performed TOS surgery and the Dr I did see (that was a hand surgeon) told me I would be her first TOS patient. She was located in a rather large private hospital in Sydney. After what I have read here and the stories I have been told I have decided against surgery at the moment. I know there are a few people that have had sucessful surgery but there are more who havnt. I either find people end up with scar tissue build up which cause their TOS to return and starts a whole new round of problems or the TOS just returns on it's own after a few years. I think surgery is a very personal choice and some people are just in sooooo much pain they will give anything a try. I am not to that stage yet, thank god! I can take the edge off the pain although can not be pain free. I am extremly scared of surgery and cried when they put me under to have my wisdom teeth out!
I know the Dr's accept what I have as my test results state that but I feel that I just get pushed from Dr to Dr. I get referred onto new Dr's when my current specialist doesnt know what to do with me. I have been asked to go to the university of Sydney and let the students have a look at me, so i do know that my condition is considered rare.
I was once told by a physio that "TOS is not a very nice thing to have but it wont kill you". So considering that I thought I might have a brain turmour or something very sinister prior to my diagnosis, I count my lucky stars that I dont.
Continue to get support and ask all the question you like, there are some people here that know more about TOS than any Dr I have seen. You will benefit especially as your not in the US. They seem to have all of the upto date information.
Talk to you soon.
Ozzy (Lisa)