Today I had an appointment to see the physiotherapist who works with Dr Beckers post-operative patients. I thought I was going there simply to have an MLD but it turned out to be much more than that. THANKFULLY.
This physio was extremely impressive. She is a specialist in the area of Lymphedema and was a knowledge bank full of information for me. She asked me how I found Dr Becker and I explained to her that it was only recently that I came across her and realised that there were surgical options available for Lymphedema (and that my doctor never mentioned this to me). She explained that in France, there is lots of skepticism about these types of surgeries and some doctors are anti-surgery. This to me, seems anti-medicine, anti-progress, anti-technology and completely backwards in thinking! How could doctors not advocate this?
The biggest thing about my visit was that she told me my bandages were completely wrong. Ummm, what?????! I am so angry even writing this! My doctor who diagnosed me with Lymphedema and prescribed me the bandages is a “Phlebolog” (I don’t know if this is the same word in English as in French?) Anyway, his area is Venous Disease. So the bandages he has prescribed me are for people with venous disease– issues with veins and blood circulation– not lymphedema!!!!!!!!!!!!!!! For one year I have been bandaging my leg with the wrong stuff. I am so upset about this. The physio today was shaking her head, like she had seen this kind of thing so many times, and immediately told me to ditch the bandages. She used her own (proper) bandages on my leg and it honestly feels a billion times better than it usually does when i bandage it. Go figure. (This is a typical example of the mistreatment of lymphedema!)
She was very clear about her experience with VLNT / LVA patients, saying that she has seen some amazing results over the years, but also that the surgery is not always greatly successful. So not to be disillusioned going into the surgery. I completely understand this. I know its not guaranteed to be 100% successful. The first thing Dr Becker said to me was, “I’m not God. I can’t tell you what your outcome will be but I hope we can have a good result,” and I totally respected her saying this.
INSERT JOKE HERE: What’s the difference between God and a surgeon? God knows he is not a surgeon.
In regards to the brand of my compression stockings, Sigvaris, she said they were good but I needed to throw them away after 3 months of wearing. Arghhh! What?! They are so expensive!!
Leading up to the operation I have to wear my bandage as much as possible and get my leg as soft as possible. So the next few weeks are going to be FUN.
I can honestly say that this week in Paris has given me so much more information that I have had in these past three years of having Lymphedema. I am so pissed off about the mis-information I have received from doctors who seem like they know what they are talking about but actually have NO FREAKIN’ IDEA about the very basics of managing Lymphedema. This encourages me even more to be pro-active about this condition, to never stop asking questions and to never, ever be told “just live with it” again. It’s unacceptable and I truly believe that this type of response is from people (professionals) that simply don’t know what they are talking about.
Today’s lesson: Never stop fighting, never stop asking questions, keep pressing for information until you get the right response. If something doesn’t feel right, get a second. third even fourth opinion. PLEASE!