8 months post-op

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Hi everyone,

It’s been 2 months since my last blog and lots has happened in between now and then. These last two months have really been an emotional rollercoaster for a variety of reasons. I’ve been very immersed in my own little Lymphedema world, researching, learning more and more (and also being disappointed with the lack of up-to-date information on the internet). I’ve been connecting more and more with others who suffer from this condition, listening to their experiences and stories (2 hour long phone calls to the USA, United Kingdom, Solvenia!), which has been incredible! It always feels like I’m listening to an echo of my own story when I speak with other Lymphies; the similarities are fascinating.

I’ve really had the urge to do something more with my blog, my story, my mission to raise awareness of Lymphedema, which in turn has been pretty draining on me mentally. I feel like there is so much to be done, so how can I make a difference? It’s a bit overwhelming when we (as individual powers) try to make a dent in big international problems… but I’m slowly moving forward on a few small projects/ ideas that I’ve had, so hopefully something comes to life soon!

In the meantime, I’m still being really active on my Instagram account and I’m connecting with more and more people who suffer from Lymphedema. Its truly amazing to meet so many beautiful people, who come from such different walks of life and to be able to help each other through this journey we are all living. I have spoken to many people (some at the beginning of their lymphedema journey, some who have suffered a lifetime of bad care and misdiagnosis, who have finally mustered up the courage to share their story and liberate themselves of their “secret” – using social media of all things!)… I can’t tell you how helpful each and every person has been to help ME in my journey also. You guys ROCK.

Now for some news on my leg.

Things are getting better and better, but there is still a long way to go. It’s only been 8 months since my surgery and I see more improvement than I did 2 months ago. My ankle and foot are the major areas of improvement. There has been a big improvement in my calf too. Everything is smaller and softer.

There are a few main reasons for these improvements:

  1. I have bought an ankle support called MalleoTrain (the brand is Bauerfeind, you can find them online and just need to supply an ankle measurement to get the right size). Since wearing this I have seen a HUGE reduction in the liquid around my ankle. Its been so hard to get any kind of reduction in this area so I am literally in shock at how well this ankle support worked. I’ve had a few people who follow me on Instagram buy one (after seeing my results) and they have told me its working really well for them too.
  2. Bandaging– I have been bandaging a lot more effectively these days. I try to bandage every night during the week (I put on my toe cap and the Malleotrain), and this has helped my calf a lot.
  3. Double compression– I have been wearing a knee high compression stocking under my full length flat stitch stocking (during the day time) and this really helps to reduce day time swelling. I find that when I take my stockings off at night, my calf is still soft like it was when I woke up in the morning. Winning!

It’s taken me a while to come to the above conclusions (and a lot of trial and error in the meantime), but finally I have found my special cocktail of “things that work.”(And boy do I love a good cocktail).

All the things I am doing are temporary measures, as its part of my plan to get the liquid out of my leg, reduce in size and then order new compression stockings.

Also, in February, I will start some intensive MLD/ Bandaging session in Italy. Doctor Denisa Giardini (she is based in Milan) has been helpful in organising this, so I look forward to seeing some more results following that. (I think I’m more excited about staying in Italy for two weeks and eating a tonne of pasta!!!)

xoxo

 

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14 thoughts on “8 months post-op

  1. helensamia says:

    You will see more and more improvement as time goes by …. when I started blogging there was nothing on the internet about surgery from patients….. now there is a growing community if those ready to help others. Dont burn yourself out and always take care of yourself in this fight for recognition…you are doing a great job xx

    Liked by 1 person

    • lymphosaurusrex says:

      Thank you xx I agree. I just feel so unjustified by stories of other people I hear suffering of LE (no insurance coverage for compression stockings of children for example!!)… That it gives me the motivation to act and use my voice to change this. I cant wait to see more and more improvements, I know they are coming (patience is the answer!) xxxx

      Liked by 1 person

  2. dolores ouimet says:

    Thank you for sharing your experience! I just have one question. When I try to wear toe caps under bandages or my solaris tribute by the middle of the night I am ripping it off! The pain is too much. The pain feels like intense burning. The experts don’t really have an explanation except that it might be too tight. I have had two lymph node transplants but haven’t shared my journey yet. Good luck in Italy!

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  3. Samiam says:

    Thank you for sharing. I am considering having a lymph node transplant for my left leg. I have had lymphedema post surgery for 16 years. I no longer wear compression stockings because they all bunch on me and are very uncomfortable but I do wrap every night with compression bandages. A few months ago, I consulted with a doctor in Chicago who said I was not a candidate for the micro-surgery but would consider a lymph node transplant -taking a cluster from my neck and transplanting to my ankle. He was not very optimistic about it and said it would only reduce the size of my foot and ankle and then recommended liposuction on the rest of the leg.
    I also saw a doctor in the Santa Monica area who would do liposuction on the whole leg but does not do transplants. This means I would have to wear compression stockings faithfully forever as there still would be no lymph nodes.
    Who was your doctor and where is he/she located? I would like to get another opinion – or if you have any recommendations for a doctor in the USA.

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  4. Maria says:

    HI, I had LNT on my left leg over a year ago. They removed lymph nodes from my stomach and implanted on my ankle. I have not seen a difference in size. 😦 Although I do get less cellulitis infections since then.

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  5. Jane Gregerson says:

    I just found this site. May I ask where did they take lymph nodes from? It seems that here in the US the transfer is put on top of your skin at the ankle…pretty unsightly. And uncomfortable for wearing compression.

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    • lymphosaurusrex says:

      Hi there, the nodes were taken from my back (axilla, just below the armpit and not connected to the arm drainage)… Its so important to find the right surgeon who has done a lot of these surgeries because it really ensures you are having a “safe” surgery and not in danger of developing a secondary LE from the donor site. x

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    • Samiam says:

      Hi Jane,
      I am considering having the same thing done – lymph nodes from the neck to the ankle. What kind of neck scar does it leave. Is it worth having it done if there is no reduction in size? I am really debating doing this. How big of a lump is it on the ankle and does it go away?

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      • lymphosaurusrex says:

        Hi Samiam, the scar depends on the surgeon i guess. My scar is about 5cm long and healing nicely. It doesnt bother me to have a scar on my leg to be honest… But the neck is a different area. Who are you thinking to do the surgery?

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      • Samiam says:

        HI Jane,
        I saw Dr. David Chang at the University of Chicago and he would transplant lymph nodes from my neck (how big is that scar?) to my ankle (how big of a bunch does it make on the ankle?). I felt that I did not have adequate time to really talk with him – he had 2 interns with him and was in a rush – I flew there from CA to meet with him. He did not give me a very favorable chance of the transplant being effective and said he would do some liposuction also. Have you had any liposuction done? I have a top notch Anthem Blue Cross policy and they are not certifying me – using the excuse that it is cosmetic surgery! I will appeal and send them a picture of my leg as a picture is worth a thousand words.

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