We have arrived at the 6 month mark following my Lymph Node Transfer in May. It just so happens that Dr Becker was in my neighbourhood this week (yes, random I know!) and we took the occasion to catch up and check out the fatty leg.
Firstly, its still too early to see the proper results. Remember that a VLNT can take over one year to see proper results. This is simply because it takes time for the lymphatic vessels to grow in the body.
With the lovely Dr Becker.
The best improvement so far is my upper leg. Especially my hip area which has gone down heaps. Its softer and smaller in size. My knee cap is also starting to appear again. Improvements are starting to be seen around my knee/ behind my knee and its a bit softer just below my knee. Dr Becker said that my calf and ankle are definitely going to need some more work in the future (which is so great to hear because it gives me direction and the next step in this puzzle!). My calf is kind of hard and my ankle doesnt respond much to MLD or bandaging at the moment, so she believes that a second lymph mode transfer around my ankle or middle calf will improve things greatly. She also said that typically, patients that receive TWO flaps (lymph node transfers) generally do heaps better than with only one (so keep that in mind for yourselves). I was told this before my operation so I knew what to expect.
My next step is to have another LymphoMRI (hopefully I set this up for next week) and see how the vessels are growing so far. Dr Becker will be able to see from this MRI if they are still growing or have stopped. They should be still growing, she doesn’t think they have stopped but basically we just need to see how its progressing.
Also, another thing she wants to do to help improve my leg is some general liposuction. Upper leg, on the side of my thigh, which will make it exactly the same size as the good leg again. YEAH! At least this is one area we can say has “come back to normal” in a way. She will do this using a special laser technique that lights up all my lymphatic vessels and nodes in my leg, so that she can avoid damaging or touching these areas.
I told Dr Becker that I had booked a consultation at a special hospital (that has a division for Lymphology) to organise a week long intensive bandaging session. She advised me against going here and gave me the contacts to someone in Italy who is apparently the best person to be treated by. I’ll give them a call tonight and organise a rendezvous. Luckily we live close to the border of Italy so its not far to go.
Voila! Those are all the main points we discussed. It was really important for me to go and see her today because its given me some new direction and a renewed positivity about everything. The last few months have been hard and my ankle/ calf feel terrible- but now I really know what to expect for these areas and know my next plan of attack.
I’m going to approach my second operation very differently to the first time, because there is NO way I am going to be out of pocket money wise like before. I can’t afford another 20,000 euro operation, hello?!! The next time will be planned properly and insurance is going to pay back a LOT more. You know why? Because I’m going to fight my ass off for it. Others have done it in the USA and won, so why can’t I? Im going to schedule appointments to meet with my insurance company, discuss my case and make sure I have supporting documents from Dr Becker that explain everything in detail– so they can see the problem in its entirety. I will not stop until there is a reasonable coverage and reimbursement of surgery and hospital costs. Trust me, I am a stubborn bitch and won’t stop until I get what I need!
On another note, I was chatting generally to Dr Becker (who is just so fricken nice! How many times have I said this about her?!). I jokingly apologised to her for the influx of emails that carry my name as a referral “Sarah told me to email you about my lymphedema!”… and she laughed and was apologetic saying she is SO busy and just can’t get around to answering all those emails in a timely manner. So if you have emailed Dr Becker and haven’t had a reply, its because she is one busy busy lady. Try again until you reach her, or better yet, call her office and book an appointment to see her.
She also told me a story of how she had a Doctor training with her recently and explained to him that the majority of her patients cry in their first appointment with her. This is because they have been pushed away by countless doctors and specialists and told there “is no hope, you have to live with this, there is no solution,” and finally they discover that YES there is a solution, there is a possibility of improvement, and its extremely emotional for them. This probably sounds familiar to you, right? I know it resonated with me (because I cried AFTER my appointment with her haha).
Never, ever let a specialist tell you that surgery is not an option for your Lymphedema– they don’t know what they are talking about!! Get a real expert opinion, find a surgeon who does this microsurgery and take an appointment to discuss your case with them. Then, get that bad boy fatty leg or arm out in public with your beautiful compression garments on (vomit!) and spread awareness of our condition.