6 months post-surgery

Hey all,

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.

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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.

Sarah Before and 6mths after.jpg

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.

Peace.

 

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15 thoughts on “6 months post-surgery

  1. Esme Bebb says:

    Lovely blog post. For your calf & ankle: You may want to consider, and see how your lovely Dr Becker responds but Myofascial release can be very helpful in helping the fascial fibrosis. You may get better results from your intense bandaging after such work. Take care and good luck Esmé

    On Fri, Nov 4, 2016 at 2:50 PM, The Lymphosaurus Rex wrote:

    > lymphosaurusrex posted: “Hey all, 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, it” >

    Like

  2. helensamia says:

    I have shared your post on my blog so others can learn from you ..it is over 3 years since My Surgery VLNT very happy with results …my leg is much better …not a cure but much better .. .thanks Helen

    Like

    • lymphosaurusrex says:

      Hey Helen! Yours was one of the first blogs I stumbled across in this search for answers- but at the time I never realised this was an option for me… I just wasn’t educated enough about it. Thank you for sharing your story, its given me hope and others too no doubt. Hoping that your leg continues to get better with time xoxo

      Liked by 1 person

    • lymphosaurusrex says:

      Thats a good thing- no more infections. Perhaps another operation would be beneficial for you? Worth looking into if you wanted to. As Dr Becker said to me, majority of people benefit a lot more from 2 VLNT than doing just one. xx

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  3. Beth Jahnke-Britton says:

    Congratulations on your progress with your lymphadema in your leg! That is awesome. Do you have someone do a lymphatic drainage massage for your foot/ankle area? Move the fluid to the thigh area after activating the nodes by your knee and groin. I can’t wait to have this massage done to my left arm after confirming no melanoma in the lymph nodes by my collar bone! Then I want to look into transplanting. My oncologist gave me a funny look when I asked 6 years ago if this was ever done.

    Like

    • lymphosaurusrex says:

      Hey! Yeah I have MLD twice a week actually, it definitely helps move the fluid out of the leg. Good luck with your journey and hopefully my blog can give you some information you need regarding the VLNT! x

      Like

  4. Susan Rogers says:

    Oh my gosh I’m so thankful to stumble across info on this and then your blog. My leg is exactly like yours but the lympedena is in my right leg. It happened to me when I was 19 (over 30 years ago). It changed my lifestyle and was very depressing for me. I was always told nothing could be done except compression hose and the massage sleeve , etc. I swim in the pool everyday to maintain my figure as much as possible. I know it’s a God thing that lead me to do some surfing on the internet last night to see if there was any new research avaiable. I saw that the dr. From Paris u spoke about had come to the US and trained Doctors at MD ANDERSON cancer clinic in Texas on the lymph node transplant procedure . I’m making an appointment tomorrow because they just opened a branch of their clinic in my town! I’ve prayed for 30 years for a cure and know this is an answer to it. I will pray for your continued healing too. God bless u! Thanks for sharing.
    Susan Rogers
    Jacksonville Beach, FLORIDA

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