Picture of my lymphedema before LVA: Here is a picture... - LSN

LSN

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Picture of my lymphedema before LVA

12345- profile image
12 Replies

Here is a picture as promised of before the operation, I will put another one on too, cant seem to put them on together sorry,

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12345-
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12 Replies
lymphite profile image
lymphite

I love that you are giving pictures and your experience with LVA for leg LE. Most of the info out there seems to be for arms. More information needs to be out there for people that are seeking options for leg LE. I hope you have a fantastic results!

12345- profile image
12345- in reply tolymphite

Thank you, I just hope all my posts are being seen, can you tell me if you can see day 2 3 4 etc, , I am so pleased with my results so far, and the feeling I have when my stocking isn't on as in no tightness in my leg and skin is just wonderful, they don't do as many legs as arms I was told.

lymphite profile image
lymphite in reply to12345-

I’m not sure I have seen all your posts. I have been trying to follow you since I saw the pre-surgery post. I am really not very good at navigating these sites, this one and the US one on Inspire. I tried after you asked and I only found the pre, the one with both legs and a grey skirt and this one. I also just saw the 11 day one and I am so happy for you. It was the same for me with my arm. It just slowly dawned on me that my arm was normal sized and was staying that way.

12345- profile image
12345- in reply tolymphite

It is such an amazing feeling, I really cant believe it to be honest, I am so happy, I think I may re write the experience but I don't want to keep going on with my face everywhere, I thought I had messed up the order so pleased for you too.

lymphite profile image
lymphite in reply to12345-

I worried about my posts being seen bragging if I posted how happy I was. But then I thought the word needs to get out. There is a woman here in the US that has been posting on inspire and she said that her Lymphoedema Dr. is against the surgery because it hasn’t been shown to be successful!

I had insurance coverage but a lot of insurances don’t cover it and I think that is terrible. Getting the word out there might get enough pressure started that this would change.

12345- profile image
12345- in reply tolymphite

That's actually what I really wanted to say, I am feeling sad for the ones that cant have it done through either money or that they have primary lymphoedema, I have been told that they are having way more calls recently so I do hope this is because of what I have written, I genuinely what to share this amazing treatment for lymphoedema, I do totally agree the more we put it out there the more chance it has of becoming available on the NHS. it is something like 86% successful possibly more I need to get my facts straight . its very high I do know that and high enough for me to have taken that chance, I found the whole experience really good and I have put in a post that I am a big pansy , I am dreading having the stitches out on Tuesday, that goes back to when I was 10 I had stitches in my arm and they took them out too early, never forgotten that, I will do one big long blog so everyone can read from beginning to end, thank you for replying and great news about yours being successful,

12345- profile image
12345- in reply tolymphite

Hello can I please ask you as you have had this surgery too, how long did you elevate your leg, I am into the end of the 2nd week now, I have my stitches out on Tuesday I am still elevating not all the time, I am back hovering and cooking etc, but wondered if I am overdoing it, not out walking the dog yet, kids and hubby do that for me, many thanks. my daughter is 21 on Friday and we are going out for a meal hoping my leg will be ok down for around 3 hours, I may message Kate again but would be interesting to know what you did after your operation and as yours was leg too I think xx

12345- profile image
12345- in reply tolymphite

Hello, can I ask you if you got instant results with your arm, or did it take time for the swelling to go down after you started using it more after the operation?

lymphite profile image
lymphite in reply to12345-

I saw some change early but more as it got close to 3 months and i think a little more after three months.

I was wrapping 23/7 for the first 4 weeks. My arm was definitely smaller when i had the bandage off but deeply wrinkled from the ridges and folds in the bandage. It seemed to me that it would have not been smaller except for the wrapping. Gradually over the 4 weeks the wrinkles got less deep ant the ridges less translucent. After that i started weekly with a therapist, daily self massage and compression sleeve. It was smaller by measurement and visual appearance to me. Over the next 2 months it went up and down in a tiny range per the measurements by the therapist. My eye is pretty good at seeing this small range of fluctuations. After three months it seem to get a little smaller still but the thinness of the surface skin has been the biggest change after three months.

lymphite profile image
lymphite

Yes and one of the most important thinks is to get it done early! I was worried they wouldn’t do my surgery because my disease was mild and somewhat controlled by conventional therapy. But in my research I learned how the inflamation on the lymph vessels from the back pressure causes progressively worsening of the vessels. If it gets too bad there are’nt Any vessels left to use for the LVA.

lymphite profile image
lymphite

I had it in an arm. So i can’t really advise on recovery for a leg.

I had to do short stretch bandage 23 hrs a day for 4 weeks. No lifting over 10 lbs and no aerobic type exercise or MLD for 4 weeks. I think other doctors are much less strict.

cinthiaalbu profile image
cinthiaalbu

my leg looks like this, but my toes are more swollen. how far up did you swelling go? mine go from my toes (and bottom or foot) all the way up to mid-thigh. interesting info on this procedure. i'm still afraid though. what are the negatives?

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