Just wanted to let you know about my appointment a couple of weeks ago with Prof Mortimer. For those who don't know he is a Consultant Dermatologist who has developed a special interest in lymphoedema. He is (I think) nationally the doctor with most experience and expertise in managing lymphoedema. He works for the NHS in London though I believe he has quite a long waiting list on the NHS. I saw him once in 2008 and then again on 14th Feb 2009, privately both times.
The issues when I went to see him 2 weeks ago were: worsening truncal and arm lymphoedema so that the volume difference between my arms is now 36%, and, recurrent cellulitis of both trunk and arm despite being on long term daily penicillin antibiotic.
He is very thorough and very good and it was really helpful to see him. He explained that my right arm and the right upper quadrant of my trunk were effectively immuno-suppresssed. He feels that once you have an infection it never goes completely though it can be suppressed/made inactive. He advised that I change my preventative antibiotic. We also talked about treatment of acute cellulitis and he advised follow the BSL guidelines (which he developed with a team of specialists) for treatment of cellulitis.
He also advised another attempt at 2 weeks intensive treatment of the lymphoedema with compression bandaging and MLD. I had this before in 2006 when I first had lymphoedema but I wasn't convinced it helped then. I am actually in the middle of this now (provided by my local NHS lymphoedema clinic) and have noticed some improvement to the swelling of my arm.
I asked him about laser treatment both with a hand held laser and possibly going to Oz to have treatment there under Prof Piller. He was very honest and said he had no experience of using lasers and there was no research in the UK - but he had no objection to me trying laser treatment.
I'm in the bandages now and it's really uncomfortable to type so I'm going to stop now. If anyone has any queries please post and I will get back to you as soon as I can. Hope that has been useful.