3 months post-op follow up

Hey Hey!

So at the time of posting this “3 month follow up” its actually more like 4 months post-op now…! I’ve been incredibly busy and haven’t had the time to blog- apologies!

A few weeks ago I had my follow up appointment with my surgeon, Dr Corinne Becker, which took place in the front seat of her car. I love how this story is starting already…

We met in a little french city called Toulon and had lunch together on the harbor. Unfortunately there was nowhere private for us to “inspect the fatty leg,” we moved outside to her car and had the consultation there. Luckily for us lymphies, the dashboard in a car is our favourite place to elevate so I was feeling quite at home.

There were a few main things that came out of my appointment:

  1. Bandaging to be changed: Dr Becker recommended I buy a Circaid Reduction Kit because my current bandages keep slipping and bunching around my knee (thus having the opposite effect of bandaging and cutting off the flow of lymph fluid). I haven’t had great results from my traditional bandages- they slip, the don’t compress very well, I need to re-wrap after an hour and most annoyingly, the ankle/ foot part always comes unravelled and gaps appear.

    IMG_0659

    My second night with the Circaid Reduction bandage and I can see some better results around my ankle and calf. Much better compression than traditional bandages!

  2. SWIM SWIM SWIM! She said to swim as much as possible, every day if I can. She said this is not even negotiable! On the days I can’t get to the pool, she said to buy a small little pedal exerciser and put it in the bath and pedal! Swimming and biking are probably the two best things that can be done for the lymphie leg.

    IMG_9349

    Does this classify as swimming?!….

  3. Start living more normally: This shocked me a bit I have to say! Dr Becker told me to start trying to live a bit more normally, like take off my compression stocking for a while during the day and let the air/ light onto my leg, stop bandaging so much, put some sun onto my skin… Like all the stuff we are told not to do! She said that if things are feeling very swollen at the end of the day (which will be normal) then put the Circaid bandage on for the night and when I wake up it will be better (which I have been trying and has been working well). I hesitate to take my compression stocking off, so I only do it every now and then, but wouldn’t go a whole day without it.

Three months post surgery isn’t very long for this kind of procedure. She said I won’t start seeing results until around 6 months, so I need to be really patient. The patients who have arm lymphedema and get the VLNT have quicker results than leg patients, because an arm is shorter than a leg and takes less time for the lymph system to grow into it. There is no difference in success rate between arm and leg VLNT operations.

So! In the weeks following my appointment with Dr Becker, I’ve been swimming as much as I can, I have my new Circaid reduction bandage (I’ll do a separate post about this) and also ordered some Juzo compression stockings (which are specifically for lymphedema, because I was told that my Sigvaris ones are more for vein problems??!!!)…

Now about my leg…

I definitely notice a difference in size- its not heaps smaller but there has been a small reduction already in my upper leg and around my knee is a bit smaller too. My calf fluctuates a lot, some days it can be good, other days its as tight and big as anything. My ankle and foot fluctuate a lot too- but mostly its very swollen here. This is the last area to change apparently. The Circaid bandages have been making a difference too. I’ve only had them for a few days so its too early to see any dramatic changes, but I can definitely see an improvement since having them.

One thing thats been happening since my operation is lower back pain. I wake up most mornings feeling extremely stiff and achy in my lower back. It goes away by the afternoon but is really quite painful during the day. I read somewhere that feeling sore and stiff in the morning is due to lymphatic congestion, so I’m wondering if this is to do with my leg.

It’s a full time job this Lymphedema thing, but I feel like its getting easier now that I’m using the correct materials to manage it (proper bandages, physio, swimming, new compression stockings) and have professionals guiding me (who know what they are talking about!!).

Keep on fighting everyone! X

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8 thoughts on “3 months post-op follow up

  1. Michelle says:

    Hello, I just read your story and found your blog. I am so inspired by your story. I was just diagnosed with Lymphedema almost 3 months ago, most likely primary tarda as I am almost 40. I can relate to a lot of things you are saying. I just wanted to let you know about 2 things that are an important part of my treatment and have been very helpful to me. You may have heard about both, although you do not mention them. One is my Medi stockings. I learned early on that flat knit custom stockings from this particular manufacturer are the best. Second is a flexitouch machine. This simulates a lymphatic massage and has been invaluable to me. I don’t know if these things will be useful to you, but I thought I would pass on the information. I am excited for you and look forward to following your progress. Thanks so much for sharing something that is so personal it gives us all hope:)

    Liked by 1 person

  2. Janice Mansfield says:

    Looking lovely Sarah, I am dreading our approaching summer because the heat but mostly the humidity causes my whole body to retain fluid & so becomes very uncomfortable. I have to change throughout the day to accommodate the gain which can be up to 3kilos from breakfast to lunch time. No fun. I hate to leave my air conditioned house & pool because here I can be normal while cool. Best wishes to you.

    Liked by 1 person

  3. wielensk says:

    I have just discovered your blog and I am really happy about your significant improvement. In Brazil, where I live, there is a treatment called Complex Physical therapy. This means two 3 hour long sessions per week, for about a year or two. This includes pneumatic boots (they alternate models to vary the pressure), manual lymphatic drainage, ultrassound and automated pedalling. Additionally, daily dose of Clavulinate (antibiotics) and a pill of hesperidin+ diosmine. I had huge improvements after years of misdiagnosis.Wish a wonderful recover, hugs from Brazil.

    Liked by 1 person

    • Tiffany says:

      Hey Wielenk! In which part of Brazil are u living? I guess that doctors here have their own definition of “Complex Physical Therapy” , lol! I´ve seen around 3 or 4 different ways to do that and it´s always quite expensive =/ .

      Thanks for the info Sarah! I´ll take swimming lessons next month so I can exercise properly too =D It´s such a great thing you´ve been doing for the Lymph cause! ❤

      Like

      • Regina Wielenska says:

        Hello, I live in São Paulo, southeast of Brazil. My lymphologist is an expert in the area, a real scientific authority. The physical therapists only works with lymphedema patients, and he’s been doing this for about 20 yrs.!. I face two three-hour-long weekly sessions. One hour with pneumatic boots, then manual lymphatic drainage of my equally affected legs, followed by ultrassound application. The gran finale is half an hour automated pedalling (not in a stationary bike). I also follow a prescription of antibiotic in full or maintainance dosage, plus 2 substances to help vascular and lymphatic systems. This expensive and successful journey started in july 2015 and it represented a huge change in the right direction. I still have some downs, but most of the time my edema is much improved. Wish you full recovery and lots of achievements. Best, Regina Wielenska

        Like

    • Tiffany says:

      That´s awesome Regina! I´m also from São Paulo, would you be so kind as to send me your doctor´s contact pleaaase? I´ve been peregrinating through doctor´s offices for 10 years now…always with the same ineffective treatment options =/.
      I have a pneumatic boot (not flexitouch of course =(, but it helps a lot) and also use Daflon (hesperidin+ diosmine), which makes no difference for me but I still take it.

      *wrote in English so everybody could understand rsrs

      Liked by 1 person

      • Regina Wielenska says:

        LOL. Small world. With Daflon about 95% of my muscle contractions dissapeared. But I need other meds to keep things in the right track. Quick reply here, Iam leaving for an appointment http://drguedes.med.br/ is the link for my doc and physical therapist. They saved me. Good luck!!

        Like

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