7 weeks with no MLD!

Last week I had my first physiotherapy appointment back home in the south of France since about 7 weeks. Yes, it’s been that long since I had MLD done and it feels wrong!

I was looking forward to seeing my physio to give her the good news about my surgery, show her my MRI scans and also explain the new bandages I am using now. Mostly however, I was interested to see her reaction to it all.

Firstly, she was extremely impressed to see the MRI and how clearly it showed the lymphatic system and the problems in my leg. She didn’t realise that this was possible to do. Secondly, the surgery- she was in shock that a surgery exists for Lymphedema. Lastly, the bandages- again, in shock that the ‘long stretch’ bandages I had been previously using were not the right ones for Lymphedema.

At this point, I kind of felt sick. No sorry, I felt really sick. I went to the physio thinking I was going to be so happy to explain the progression I had made, but instead, I honestly had a ball in my stomach when I left because it worried me about the quality of treatment I have been receiving. It worried me that a professional, who is supposed to know about Lymphedema, knows so damn little. She even joked with me and said, “Ohh, well you’ve come back an expert on Lymphedema haven’t you!” and I was thinking to myself, well someone has to be!!!!

We discussed for a while the whole bandage issue, short stretch vs long stretch. She explained to me that about 5 years ago, she attended a conference in Montpellier, France, for Lymphedema management and they promoted the long stretch bandages as the ones to use on our fatty limbs. My doctor (who diagnosed me) also attended this conference with my physio… (so at this point I was wanting to run for the hills after hearing this revelation!!).

Can I insert a massive rant of swear words right here?! No, I will refrain, but you probably know the feeling.

The worst news of all is that my physio is completely booked out until after the 17th May (operation day) and I can’t even have a single MLD with her. As part of the preparation for my operation I’m supposed to massage as much as I can, plus wear my bandage as much as possible… So this is pretty bad news.

BUT! As I have said before, I am now taking matters into my own hands and being active about my condition. I messaged the amazing physio in Paris (who works with post-op patients of Dr Becker) and asked her to recommend me a physio here in the south that can do some MLD for me. She responded immediately (8pm Saturday night I might add), and I have the name of another physio who can treat me. Luckily. My physio does a good massage (I think she does anyway, not that I’ve ever had anyone else massage my leg), but I am interested to see how the physio in Paris does the massage (post-op) and then I will re-evaluate my long term plan. Maybe a switch of physio is in order…

It’s funny how quickly we can swap from feeling like we have this thing under control, to feeling isolated and in a downward spiral. I really felt like this after my physio appointment. I literally shook my head the whole way home like you have to be kidding me!?! Except that now, I feel so much more empowered by the knowledge I have and ultimately said to myself “I don’t need these people because I know what needs to be done, I know the right way to manage this, I will surround myself with the right people who will assist me in the best way possible.”

xoxo

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The Wolf Pack.

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How to hide a Lymphie Leg 101: A sick maxi-dress!

 

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4 thoughts on “7 weeks with no MLD!

  1. Rbmcg says:

    Keep up the fight! You’re getting so close to such a big and important step. Keep one (swollen) foot in front of the other and focus on the end goal!

    I had an appt with a General MD who told me that my leg issues are probably just cosmetic. Then she looked at it. Then I told her what it feel like when it gets hot and how sometimes my leg feels like it’s going to explode. I have quickly learned not to use the word uncomfortable, but instead have to say the word painful instead. That’s so eff’d up, but I’ll do what it takes. I’m taking my courage cues from you. Thank you!

    Like

    • lymphosaurusrex says:

      Hey there, thanks for your message 🙂 Cosmetic hey?!… wow… I cant stand these uneducated comments anymore!!!! I hope that my experience can give some hope to others, regardless of the outcome of my op– just knowing we ALL have options is the main thing. xxxx

      Like

  2. Sara says:

    Just found your blog, feels good to know there are people just like me, even in a another country. Even crazier we have the same name 🙂 I can’t wait to here how your VNLT turns out. My doctor said I wasn’t a candidate for the VNLT b/c she said there was risk with lymphedema happening from the transfer site since I have had it for 21 years. I was just denied by insurance to have the LVA procedure done in the states this June. Insurance said it was experimental and not enough research. Thanks for your openness and can’t wait to here your results!

    Like

    • lymphosaurusrex says:

      Amazing NAME! haha 🙂 You know in Paris, the Hospital American I am having my surgery done in– well, my hubby told me that apparently Americans get a free stay there (like hospital costs covered?!)… Not sure if this is true but I would definitely look into it if I were you. This is where Dr Corinne Becker works. I know a lot of people are denied this surgery by insurance in the USA… its shocking. I would seriously get a second opinion about this “not being a candidate” comment because for example, taking lymph nodes from the back area does not cause another lymphedema (which is where my surgery will take them from)… Keep fighting, thats all I can say. Go get more opinions. and good luck xoxo

      Like

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