Lymphedema Mass Removal?

mmarcha3
on 12/13/17 5:45 pm

I am currently about 9 months post-op from having a gastric sleeve done. I have been living with lymphedema of the lower extremities since I was 23 (going on 7 years now). At my highest weight I was around 545 lbs and currently I am about 255 lbs.

Along with the extreme weight loss that I have had in the last year or so, my lymphedema has improved dramatically but I still have swelling in my legs, but specifically in my thighs. I wear wraps on my feet and legs but cannot seem to get them to stay on my thighs and they never work on that area of my legs.

I currently have a localized lymphedema mass on my inner right thigh and it was bigger before. With some of the weight loss, it seems to have gotten a bit smaller in size but it is still pretty and now seems to be a pendulous mass that hangs in my inner thigh and gets in the way when I walk. It is not too painful, but basically affects my mobility and I tend to have issues finding pants that will accommodate for room to fit the mass.

I recently went to speak with a plastic and reconstructive surgeon about the possibility of removing this 5-10 pound pendulous mass of lymphedema from my thigh and he seemed to feel that it could be done. At the moment I am still considering going through with this but am taking some time to think about the recovery process and what will happen once I have this done. I am hoping to decide on something after the New Year.

Has anyone had any lymphedema masses removed from any parts of their bodies, either pre- or post-op? What were your experiences like? Any suggestions or advice on this topic? I would appreciate if anyone could share their story.

Thank you! :)

Donna L.
on 12/19/17 12:36 pm - Chicago, IL
Revision on 02/19/18

I have lymphedema. I have very few masses which is weird given that I was over 750 myself. Multiple women in my family died from lymphedema and so I am taking it very seriously.

Do you get treatment from a specialist? I would consult a lymph specialist, because often reconstructive surgery can damage the lymph tissue and exacerbate the issue. you may have to have it removed anyway though because over time the lymph transforms into fat deposits.

I use special wraps right now, and just ordered compression garments. They absolutely help and it's ridiculous the degree to which they do. I have lost 11 pounds since starting OT last week. Crazy!

I just got measurements taken for the custom lymphedema garments. Only one or two places in the world makes them and it's located in Germany. They actually aren't elastic, but are inelastic. This means they don't stretch...it sounds weird, however the improvement with the lymphedema is like night and day.

Get evaluated for lipedema too if you can, by a specialist. They have special liposuction they can do for that, which helps both the lipedema and the lymphedema. It uses water rather than the cannulas so it preserves the lymph tissue.

I follow a ketogenic diet post-op. I also have a diagnosis of binge eating disorder. Feel free to ask me about either!

It is not that we have so little time but that we lose so much...the life we receive is not short but we make it so; we are not ill provided but use what we have wastefully. -- Seneca, On the Shortness of Life

spiritwolf32
on 7/15/18 12:28 am

This is several months late but maybe it will help others.

I have Lymphedema, mostly on my thighs. I have large masses hanging on them but my whole left leg is swollen all the time. I had a very large mass on my left side and a small one on my right, both on my abdomen, which I had removed before my weight loss surgery because it was hindering my mobility too much. The mass on my left side weighed 33 pounds and the smaller was 4 pounds. Recovery was hard for the first week, but it was well worth the surgery. It not only removed the pounds but I can now get up and down much easier.

I also have a mass on my left breast which bugs me and I am hoping to have it removed one day.

I am having another mass removed from my upper thigh on July 20th this year. The mass hangs over my knee causing a lot of pressure which is also keeping me from walking much. I am nervous, but looking forward to having it gone. The rest of my Lymphedema will most likely wait until I reach my final weight loss goal, but I don't regret what I have already had taken off and what will be removed later this week. It does help tremendously with mobility. Just make sure to talk to your doctor and together decide if it's the best option at the time.

donna39
on 3/12/19 3:28 pm - FL
Hello I was wondering how is your lymphedema doing. Mine is starting to get worst. My weight to up and down. I don't know my real weight. My body retain the fluid. It's just hard make me want to give up at time but I know I can't.

Donna SW- 363   CW- 326  GW- 230              VS 04/25/2013 Dr. M. Jawad

    

        

    

spiritwolf32
on 3/13/19 6:55 pm, edited 3/13/19 11:55 am

I'm doing a lot better. I've had more surgeries since I posted my message and have had other masses taken off. I still have some Lymphedema because the doctor was afraid to remove too much right now. I know there's no cure for it so I will have to manage my leg with compression, but since the masses have been removed so that they aren't huge, I can move much better and have come down about 60 lbs from just the Lymphedema.

My body also retains fluid. I have learned that a low carb diet helps with the swelling. I found that out when I stopped eating right and my legs got worse.

I hope everything works out and you can get some relief from it. I know how hard it is. I lived with it for over 20 years and still am, but it's possible to get the swelling down some and keep it under control a bit more.

donna39
on 3/12/19 3:24 pm - FL
Hello I had a large mass removed off the back going towards in inner thigh. I have chronic lymphedema in both legs. In my left leg worst than the right. It was a slow healing process due to lose skin. My doctor said he should of taken some off first. Hope all is well with you know

Donna SW- 363   CW- 326  GW- 230              VS 04/25/2013 Dr. M. Jawad

    

        

    

Most Active
×