Lymphaticovenous bypass surgery: My son who is 23 years... - LSN

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Lymphaticovenous bypass surgery

hshank
hshank
12 Replies

My son who is 23 years old, has primary stage 2 lymphedema in his right leg . He had a lymph bypass surgery yesterday. They managed to connect lymph tubes to veins in 3 different places. We were told that the chance of this surgery on a leg was very low. But the leg now looks even more swollen than before the surgery. Does anyone have experience with this surgery? Is it normal to see a lot of swelling after the surgery? How long does it take to know if the surgery will make a difference? What can we expect?

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Lynora

Talk to the surgical team, but it may be post operative oedema, which will diminish over time.

As for your other questions - the consultants should have been able to answer these for you. Every one reacts differently.

3 likes
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xvdxv

the best is campisi bypass in single site with the long term effectivness

temporary solution for a few years and resolve the problem in very very low percentage of patients

1 like
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adios44

Hi

my daugter had the same lva 2 yrs ago.it is normal to swell after the operation.it will take about a year to find out if it was sucsessfull.the chanses are better than 50 %

hope it will be .be patient/

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hshank

Thanks, good to know that there is an improvement even if it takes time

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Romaine1

Most times you have surgery, the recuperation involves swelling bc the body has been through trauma. So this increased swelling should go down. I hope that this surgery works and that your son's leg improved dramatically. Please keep me informed.

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hshank
hshank
in reply to Romaine1

He developed a bad case of contact dermatitis (rash and blisters) from the bandages that were used to cover the surgical incisions one day after the surgery. This prevented him from using compression bandages to decrease the swelling. The hospital finally told us to remove the bandages and apply cortisone cream. It has taken almost 2 weeks for the rash to go away. He now has a therapist come and bandage his legs (this is now week 3 after the surgery). We are hoping that this helps in decreasing the size of the leg, but so far there has been no change.

What is unclear is the treatment that is needed after the surgery. Is it pumping, manual drainage, compression wrapping , .... ? The surgeon just does his surgery and leaves. The therapist seems to know only about wrapping, which has not been possible until recently because of the rash.

The list of acronyms is endless CDT, MLD, CB, ... . We were not given any instructions on what to do and for how long. Quite a mess!

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Lynora
Lynora
in reply to hshank

Where are you? There may be someone on this site who can advise. This site is based in London. I live in Scotland - the users are international!

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hshank
hshank
in reply to Lynora

We live in Los Angeles

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Annale
Annale
in reply to hshank

My son had this surgery twice this year (once each leg), by two different doctors. Both docs recommended not wrapping it with compression for 7-10 days and trying to not be active then. After that, if site is healed, going back to regular activity and compression. Both said it could take At least 6 months to see if it worked. One doc recommended trying the flexitouch pump, so we will be starting that next week.

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Romaine1

I would reach out to a lymphadema specialist and ask for their opinion. I would begin calling doctors in the UK and the US. This is indeed a mess. I'm so very sorry. This is a newer surgical procedure and I just don't know what to say. It seems the team there should know, but it sounds like maybe they don't. It seems like they are leaving you in the dark. And that could very well bc because they don't know. Have you heard of the website the mighty? There may be someone on there who had had this surgery. Also Google the surgery and see if you find others who have had it and if they can shed any light and maybe any other doctors. Your in my thoughts.

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hshank

We finally got to see a therapist at the hospital and she said that the bandaging and pumping should have started right after the surgery. They have now started compression by bandaging his leg and will continue to do to it for 6 to 8 weeks. After that he will start to wear compression stockings and pump.

The therapist said in her experience she has seen improvements up to 3 months after the surgery.

Seeing a lymphedema therapist in the US is extremely expensive. They charge between $200 and $300 per visit and many of them do not accept insurance. The insurance companies in turn do not reimburse these payments.

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