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THORACIC OUTLET SYNDROME for A-TOS - my surgery Vlog begins

Posted , 2 users are following.

Kthud
Kthud

Hi All,

I am having my first surgery to relieve my severe ARTERIAL and true neurogenic TOS due to rather large bilateral cervical ribs next Wednesday 6th Sept in London. I uploaded my first vlog on youtube yesterday and plan to do them as often as possible running up to and after surgery. 

My aim is to raise awareness amongst loads of professionals that missed it and to encourage people labelled with chronic pain to keep fighting if you are convinced you have a medical reason for your pain despite being told otherwise. I rarely have a full pulse in my left arm now and can easily turn it off totally by just moving my shoulder back an inch. It has been ignored so long I now have muscle atrophy (wasting) in my hand and the specialist in London says permanent nerve damage too. Another specialist did not identify this although it is very obvious now. 

I have had my symptoms for 20 years yet the last few months have been a whirlwind as only just been diagnosed.

I hope you will follow my vlog and that it will help those facing surgery in the future and hope those that have been through it will send me kind words of support!!

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0 likes, 3 replies

3 Replies

  • Pineapples
    Pineapples Kthud

    Posted

    Hope your surgery goes well smile I just got diagnosed with arterial thoracic outlet syndrome a few weeks ago, but I don't have a cervical rib. It took me 9 years to get this diagnosis, after being told various things including that it was stress causing the pain and to try meditating (and that I was using my arm problems as an excuse not to work). Things I'm sure a lot of people here have heard. Anyway, I think it's great that you're trying to raise awareness, and I hope that in the future people won't have to go through years and years of different tests and doctors in order to get a diagnosis. smile 

    • Kthud
      Kthud Pineapples

      Posted

      So glad you have been diagnosed.I am two days after op and all went well. Hand and part of arm numb but early days. My hand is warm for the first time in my life. Fabulous. I will upload short YouTube clips of progress every few days. So do hope it helps. Good luck with what happens to you next and make sure you get a really good surgeon if having the op who has done it lots. 
  • Pineapples
    Pineapples Kthud

    Posted

    Great to hear your surgery went well, I hope your healing goes well too smile I'm still looking into it but I will definitely get the best surgeon I can, thanks smile 

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