Hi, My son Sam is 12 years old and has a PWS on his left hand and arm. He has just had his first treatment. Sam did not want the treatment for cosmetic reasons either, but decided to go ahead because we were told that cobbling (thickening etc) will definitely occur if treatment is not given. There were signs of Sam's PWS already changing - the doctor pointed tiny dark red dots within the PWS (very hard to see) and apparently these are the first indications.
He had his treatment on Thursday at Great Ormond Street Hospital in London by Dr Syed and they were brilliant. He had a local anaesthetic cream applied and we have been bathing his arm in iced water and applying a cream and dressing since then. Dr Syed did tell us that the skin on the back of the hand is far more sensitive when treating so may hurt more. I hope this gives you encouragement to try your treatment again. Michelle.