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Huge Port Wine Stain

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Summicron_i.e._Michael
Summicron_i.e._Michael

I suffer with a huge port wine stain that covers the whole upper right hand side of my body, back and front, the whole of my arm and hand. I have suffered swelling in my hand and arm, when the weather becomes hot, and my hand becoming blue and feeling really cold in the wintertime.

For the past couple of years, numbness has been creaping into my fingers then the whole of my arm, this numbness is accompanied by stinging pains in various parts of my hand. The sensations are becoming so bad that it is becoming almost unbearable to touch anything, fastening shirt buttons, tying shoelaces, and writing is becoming almost impossible as I can't feel the objects in my fingers. Washing is even causing lots of discomfort, and I just don't know where to put my arm when I'm in bed. This pain and numbness is constant now.

I did go to Preston hospital to have a test patch treated by laser, but the laser never looked at it, at all, it simply had no effect, this was done about twelve years ago, but the surgeon who did the test never followed it up, and I don't think such treatment would prove beneficial anyway.

During my teens my doctor suggested I have radio active thorium treatment, which I kept up for about a year, but my stepmother, didn't like me having time off work to visit the hospital, so that got stopped. My hand looks like the red hand of Ulster on the Northern Ireland flag, so that's what I call it, anyway bearing up under the strain, I would like to photograph the extent of the birthmark and let someone else see just how extensive the birthmark is, as I have never seen this in anyone else. Michael.

0 likes, 2 replies

2 Replies

  • Cazv
    Cazv

    Posted

    I was treated in early to mid 1960's with topical application of Thorium X administered on a facial port wine birthmark. Just over two years ago I developed multiple Basal Cell Carcinoma's on the area of the birthmark. My dermatologist strongly suspects that this is as a result of the Thorium X treatment. Anyone else had similar problems?
  • graham83568
    graham83568 Summicron_i.e._Michael

    Posted

    Hi Michael, just stumbled across your e-mail from 10 years ago ,and every single word you wrote is a mirror image of me. I thought I was the only one in the world with this problem until now. I never learnt to swim because my arm

    became numb after a few minutes in the water and also I hated to strip to the waist, still do and always wear long sleeved shirts. Another problem is any slight nick or abrasion will cause excessive bleeding and would take for ages to clot. I am 77 years old now ,cant play my guitar [cant feel the plectrum] cant  do my oil painting [cant feel the paint brushes] the list could go on. I hate the winter and cant wait for summer.

     Nice to have come across you Michael, all the best for the future.

    Graham.

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