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Hi, i'M Lindsay from Dublin, Ireland.
i have primary Lymphedema, officially diagnosed in 2005, and i'm Awaiting bariatric sleeve surgery
I had a benign tumour removed in 1996 and since have had many problem & am on numerous meds which cause weight gain & fluid retention. I fell in 2005 & was diagnosed with primary Lymphedema.
i am due to have the sleeve surgery within the next month or so but I have many questions the doctors have failed to answer.
i have diabetes insipidus so i have to drink at 3 litres per day, i'm on steroids, which are regularly increased when I have infections causing further weight gain. I did lose just under 100lbs by healthy eating but have since put it back on due to illness & meds so i'm hesitant about getting surgery.
can anyone give me advice?
I'm suffering with leaking at the moment, how do you deal with it?
You GO Sarah!! 
I'm really proud of you for leading this ( necessary) charge ...
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
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! :)
https://www.aging.ohio.gov/services/ombudsman/
This is the local number for Toledo Ombudsmen. They help people in LTC faculties access care:
Region 4 - Toledo Area
Serving Defiance, Erie, Fulton, Henry, Lucas, Ottawa, Paulding, Sandusky, Williams & Wood counties
Stacey Premo, Advocates for Basic Legal Equality
525 Jefferson Avenue, Ste 300
Toledo, OH 43604
1-800-542-1874
Also try this:
Lucas County Board of Disabilities 20 N Saint Clair StToledo, Ohio 43604
(419) 244-6632
They can direct you to the right resources.
Interesting. I have had never thigh pain when ever I wore anything right for years and now that I've lost some weight I can feel painful lumps in my thighs. Especially the upper thigh. I have lost 1 0" from my waist and almost 5" on my upper arms and almost 4" mid thigh but less than 2" off my upper thigh. I am at a loss about that to do and was considering lymphatic massage.
