I wanted to share with you my experience, hoping this might be of some help to all those who suffer from secondary Lymphoedema.
5 years ago I discovered I had melanoma on my right sheen. After undergoing the Sentinel Lymph node biopsy and the subsequent regional clearance (during which 19 lymphatic stations were removed), I developed Lymphoedema, about 4 and half years ago.
At present I am being followed by the Lymphoedema team at the Royal Marsden in London and I am wearing a custom fit compression 3 Jobst during the day, and two garments at night (one old 1st compression Medi) coupled with an old flatknit compression 3 from Jobst.
Two years ago I saw Mr Ramsey at the Royal Marsden in Sutton, but unfortunately I was not a suitable candidate to receive LVA there.
After searching around and contacting other patients, I met with Prof Paolo Gennaro, who operates in Italy, between Rome and Siena, through Dr Michelini at the Hospital of Cavalieri di Malta in Rome.
Paolo Gennaro, who is not only a great professional but also a very kind person, accepted to put me on the list, in order to be operated in Siena. He worked with Dr Koshima in Japan, who first pioneered the LVA technique.
Being Italian by birth, I was entitled to receive the operation under the Italian Health System (ASL). In this respect I suggest that those living in the EU zone look into how to receive the same operation under the EU agreement which grants health assistance abroad (this page comes in Italian you can use Google translate to read it into English salute.gov.it/portale/temi/... else you can check this page for planned medical assistance in Europe) europa.eu/youreurope/citize...
You might need to fill a good series of forms (it's the old EU after all) and in some cases you might need to go speak to representatives in person (which takes time and effort) but it can be done!
After quite a long wait, one and half year, I finally had my LVA with Prof Gennaro.
Staying at the Policlinico Le Scotte in lovely Siena was vey nice.
I entered the hospital on Sunday, and left on Tuesday early morning, in Italy you are often required to spend at least one night at the hospital.
The operation took a few hours, I had the indocyanine test in the morning and was pleasantly suprised to see Prof Gennaro find good suitable lymphatic vessels to select for anamostosis. The operation only required local anesthetic and was no big deal. The doctor was very pleased with the immediate results, I received three anostomis in total, we will see how this goes and potentially plan for additional ones in one year of time.
My leg already feels much better, I can see details of my foot which I had almost forgotten about; from the knee down the tissue feels much softer.
I won't be wearing any garment for two weeks and then will try to get into a compression 2 and receive a bandaging session, which Prof Gennaro strongly suggests I get after an initial month of total rest.
I will be posting more updates in the next future hoping that sharing this information might contribute to helping others to make decisions about their health and find help.