Aside from sharing with you the outcome of my VLNT operation, I’m really eager to share the discussion I had with Dr Becker following my operation.
Let me start by saying that I’ve had quite a few surgeries in my lifetime for various things (two back operations for herniated discs, tonsils out, appendix out, wisdom teeth out… just to name a few!!) and have come across a bunch of surgeons who have zero interpersonal skills, very bad social interaction skills, have zero time to answer your questions and who are just plain old rude and scary. Dr Becker however is none of these things. She is amazing. For example, the very first email I wrote to her asking about the possibility of a meeting with her, she personally responded to me at 10pm on a Saturday night. Now, after my operation, we were talking on the phone at 11pm last night because I was in a lot of pain and she was advising me on what to do… Plus! I wrote her an email at 5am because I had sharp pains in my leg and it was numb, so obviously I was worried… and by the time I woke up again at 7am she had already replied and told me everything was normal that I was feeling, to relax and if I wanted to see her today we would arrange it. She has been extremely approachable, real, passionate and down to earth– it’s like being looked after by your Mum. Thats how much I rate her!
Like all of us who have Lymphedema, I am desperate to know as much as I can about this condition because there is not much info out there and its very frustrating. I was busting to pick Dr Becker’s brain and find out as much as I could about Lymphedema, her thoughts about current treatments, possible advances in technology/ surgeries.. like come on! It’s not every day that we get the opportunity to speak with someone with this level of expertise and knowledge in the field. She is like Michel Jackson, King of Pop: Corinne Becker, Queen of the Lymphies.
Yep, that was bad, I know. Let’s continue.
I told her to get ready for some hard hitting journalism type questions, so she took her jacket off and sat down and answered all the questions I had… (these are not direct quotes, I have written down the essence of what she was saying to me)…
What are your thoughts about Stem Cell Therapy for treating or curing Lymphedema in the future?
I’m not too convinced this is the answer for Lymphedema. I know it’s the fashion these days in medicine (all the hype around stem cells), but I don’t know if this is the answer. Lots more research needs to be done.
(I also watched a video of Dr David Chang discussing this, for cancer patients this can be dangerous because it could lead to growth of cancer or restart dormant cancers that are hanging around. However in animal models they are doing research on stem cells and regrowing lymphatic vessels).
What is the next step for surgery to treat Lymphedema?
(Note: Her phone rang when she was answering this question so I didn’t get all the information but I will ask again later)… There is something that has just been approved in the USA, a collegian devise that supports the transported lymph nodes. Its slowly being approved for use in Europe too. (I think that the collegian helps to stimulate/ promote growth of the new lymphatic connections, but I need to confirm exactly what she meant here).
There is also great advancement in the MRI’s that we use to map out the lymphatic system. There is a new technique where the MRI can travel down through the actual lymphatic vessels and we can see the exact areas of damage and really get a perfect view of the vessels from the inside. (I have seen a video on this and it’s great- like going on a roller coaster ride through the lymphatic system! I’m trying to find the link again and will post it when I do).
Dr Becker continued to talk about the current state of the medical system and how there is a big lack of education amongst doctors in diagnosing and treating Lymphedema (this got me speaking very passionately to her about my own experience of being mis-treated by doctors for a long time (eg: prescribing me the wrong bandages, being told there was no surgical options and that I “just had to live with it”)… and she was just as passionate about this topic and I am!! She wants to better educate doctors for EARLY INTERVENTION. The earlier people are treated, the better results they will have. Some people can be cured in the sense that they don’t have to wear compression garments anymore, no more bandaging, no more MLD. Doctors just don’t know enough about Lymphedema and misdiagnose it or tell the patient to ‘leave it for a while and see how it goes.’ She wants to get some information online but just doesn’t have the time to do it, so I immediately volunteered to help her and we will continue to discuss this project together (will keep you updated as usual).
Dr Becker then showed me a photo of a 21 year old woman’s hand that she had just operated on. I believe the story was that the woman was told she couldn’t do anything about her hand and she had lived like this for a long time (trusting the advise of her doctors who were telling her that there was no option for her other than traditional management of Lymphedema (bandaging, massage)…) Anyway, the before photo- my gosh- this girls hand was like a basket ball, not even resembling a hand. The after photo…. it was incredible the change. It was a hand, a small hand, not a basketball. This poor girl who had lived with this basketball sized hand for god knows how long, was given new life because of a surgical treatment for Lymphedema. What if her doctor had properly diagnosed her in the beginning and early intervention had been taken?
Early intervention is the most fundamental, important part of treating Lymphedema.
The truth is guys that we have no other option for fixing our Lymphedema. We can manage it, we can bandage, wear compression, elevate… but it progresses, like mine has over this last year. I don’t want to scare people because we are all different and our bodies are different, our Lymphedema is different. Some people can keep their limbs down in size throughout their lives and not be too affected by it. Others, like me, well… it gets beyond our control and no matter how much effort we put into managing the condition it continues to worsen (and it can worsen quickly, like mine did over 8 months). Surgeons see a lot of people who are at the other end of lymphedema- huge limbs, elephantiasis size limbs (like the basketball hand)… but when it gets to this stage there is less success in surgical treatments. Hence the reason to act early, treat early and have better outcomes.
If anything, this experience of surgery has left me feeling extremely empowered to take charge of my own health. Of course I want the best possible results from this surgery but I am also being realistic. I have a complex condition and surgery is not always guaranteed to give 100% perfect results. I understand this. Before surgery I felt hopeless. I felt like this was my fate, my destiny but was very unwilling to accept this because I just knew that something else must be available, medically speaking, for me to try. Realising this surgery was an option gave me HOPE again and changed my way of thinking.
LYMHPIES: WE HAVE OPTIONS! DO NOT TAKE ‘NO’ FOR AN ANSWER. KEEP FIGHTING FOR YOUR HEALTH. ASK QUESTIONS, GET PROPER MEDICAL ADVISE. CHANGE CAREGIVERS IF YOU NEED TO. BE PRO-ACTIVE. I encourage everyone to take an appointment with a surgeon to discuss your personal case with them and see what can be done to help.
Sending my love to you all, we are not alone, there are people like Dr Becker out there who dedicate their life work to helping people like us. We just have to work a bit harder to find them and get the benefits of their expertise. xoxoxo