My name is Caroline I live in Cork and am 52 years old.
My Lymphoedema started after complete inguinal lymph node removal (groin) after positive diagnosis of stage 3B nodular melanoma in left thigh in 2017.
In April 2017 after a pink round lump, (smaller than the nail on my little finger) appeared on my thigh I had a punch biopsy done in my GPs office and it came back positive for malignant melanoma 2 weeks later…..it was 3.8mm depth and Clarkes level 4.
I had a WLE (wide local excision) done on May 10th and sentinel node biopsy results came back node positive for cancer and I had a complete lymph node removal, June 28th 2017.
I contracted severe cellulitis and was hospitalized for 23 days. After several complications and intolerance to antibiotics and my temperature spiking at 41.8C, skin peeling from leg and foot, I finally started to feel a bit better when a new course of different antibiotics started to work.
But I now also had Lymphoedema. I couldn’t believe that this was the way my life now was and found it hard to accept that I occasionally walk with a limp and drag this heavy hot leg around with me.
I found a private MLD therapist in Cork from the register of MLD therapists Ireland. She said only constant ongoing massage and compression and bandaging would try and keep it from progressing…..I was devastated.
This was August 2017 and I felt worse then than the day I heard the diagnosis “malignant melanoma”. I do find some relief from the MLD and bandaging but it’s short lived and needs to be done on a very regular basis.
I visited Inchydoney and tried their Hydrotherapy salt water pool and was amazed the next morning to find I had a next to normal looking leg again!
This affect lasted for three to four days so I started looking into alternatives closer to home in my area.
I found out that The Radisson Hotel in little Island has a Hydrotherapy pool with jets but chlorinated water but I decided it was worth a try.
I went all summer and into the winter and found coupled with a few MLD sessions it helped a lot but still not an acceptable fix long term for me.
During one of my three monthly visits to my consultant (along with scans and dermatologist visits) I said it to him that “surely this cannot be it?” he said “wait until we get clear petscan and I can refer you to a colleague in Oxford”.
I found a private practice in Oxford that offered lymphaticovenular anastomosis. It means it could redirect the lymph channel in my leg back into the venous system and perhaps lessen the risk of getting cellulitis again and also lessen the swelling and the pain and tightness in my leg.
This was pioneered in Japan in the 70’s and had been performed in the USA for the last 10 years and in Oxford since 2012. It is also available in Australia, Italy and since 2018 in Canada. The cost of the surgery and hospital is £16300 (*€18500).
I applied in October to VHI and, after months and an appeal, they came back with a definitive no in mid-January.”
With the support of my Family and work colleagues and self-funding I went ahead, and travelled to Oxford again on the 15th of January 2019 to have the surgery.
I asked if anyone from the Republic of Ireland had undergone surgery there before me and with the expectation of one person from Northern Ireland, Belfast, no was the answer.
My Oxford Professor said he has been invited to come to Cork by my consultant to address surgeons in CUH about training them in microsurgery this year, so hopefully it may become more known about in the future and more patients suffering from Lymphoedema will have the option of this surgery.
It’s early days and a bit too soon to tell how well I respond to the treatment, it can take some months to see benefit. I will be returning to Oxford for my follow in a few months up and will go from there.