My journey with Lymphedema

[Benita88]

Hi, I am writing today about my Lymphedema which I was born with. I am currently going thru Lymphatic therapy which is basically wrapping my leg a certain way so it can encourage my weak lymphatic system to work. It has been helping. I am also using a tactile medical machine for compression which together is helping. My right leg is 3x the size of my left, there is a lot of build up of waste. I am seeing a plastic surgeon who can perform SAPL (Suction Assisted Protein Lyposuction). It is to remove all the waste in my leg. Fingers crossed I will be able to get the procedure soon or I may have to wait another 3 months.

[Lizzy69]

I have it in both my lower limbs I know what I going through mine is not quite as big as ur leg but it horrible I have had it for 22 yrs

[Benita88 in reply to Lizzy69]

I would agree that no matter the size, it is horrible. I hope you are getting the help you need to live some what of a normal life.

[Benita88 in reply to Benita88]

Thank you, that is the plan even though my job demands so many documents to prove what is wrong with me. It's not like I can hide it. I just want to be able to go back to work. Stand for 10 hours and not see my leg grow larger. compression is helping, I would recommend.

[Benita88 in reply to Lizzy69]

i hate to hear that you have it in both legs. My leg didn't get to this size until 2010.

[Ellie2508]

Good luck Bettina 88. I hope the treatment is successful. Lymphoedema is a horrible condition to live with. Mine (in my left arm) is a result of cancer treatment. What I miss most is wearing the sort of clothes I'd like to wear and not what the condition dictates.

[Benita88 in reply to Ellie2508]

Thank you, and yes I would agree. Because my leg is so heavy I am limited with shoes and they wear out quite quickly. Are you getting compression therapy on your arm? SAPL also works for that

[Ellie2508 in reply to Benita88]

Hi Benita

I wear a made to measure sleeve which really helps. It seems to keep my arm soft. In the beginning I wore an off the shelf sleeve and I think it actually made it worse with hardening areas in the crease of my elbow. I also learned to do compression bandaging and lymphatic massage.

Before lockdown I attended a tripudio class which is gentle exercises that encourages the movement of lymph fluid. It is now being held on zoom and much as I enjoy it it's not the same as it was held in a church that had a coffee morning. We would all meet up before hand to have a chat and tea and home baking then go along to the room where our class was held. I really miss that. Everyone in the class has gone through cancer, but not everyone has lymphoedema. It was like a support group. With your family you feel you have to be brave and not mention how your condition affects you mentally. Their attitude is "well you're alive" which doesn't validate your feelings.

[Benita88 in reply to Ellie2508]

I am glad you have been able to interact with people about your condition. Though I love my family and my friends, they do not understand what I am going through nor do I have a group to interact with others who have the same thing. it's like being an alien. I found the lymphatic massage therapy and wraps are actually softening up my leg. It gives me hope.

[Perido in reply to Ellie2508]

Hi Ellie

I noted your experience with an off the shelf garment versus a made to measure one.

I had a similar experience with an off the shelf stocking; it was too stretchy and didn't fit me very well so I ended up with irreversible swelling in my ankle and foot. Two years ago I got a well fitting (took 3 goes) made to measure stocking and my swelling has been stable ever since

It's an issue I feel quite strongly about. It's easier for the nurses to prescribe off the shelf garments but I wonder how many people get unnecessary deterioration in their lymphoedema as a result.

[Lucy222 in reply to Ellie2508]

I have the same thing it started in my arm after breast surgery and now it has turned into truncal Lymphoedema there is never a day when I don't have pain or swelling. I also miss the lovely clothes that I was able to wear but now they are out of the question. What a miserable disease it is.

[Benita88 in reply to Lucy222]

I too miss the lovely shoes and clothes I use to wear, plus I have gained so much weight. That is why I decided I was not ready for the SAPL procedure ye because I need to lose weight. I will get it done, I have to b positive. Have you looked into SAPL? I have seen when get it who needed it for their arm and had success.

[AnneBury]

Very best wishes to you x

[Benita88 in reply to AnneBury]

Thank you!

[Perido]

I have had secondary lymphoedema in one leg/foot since 2017 as a result of cancer treatment. It is an onerous and potentially horrible condition to live with, and often made worse because it is not well recognised or catered for by the health services - on a global scale. I wish you all the best for your pending treatment.

[Benita88 in reply to Perido]

thankyou so much! I find not many doctors at all know about it or the steps to live better with it. Right now the lymphatic drainage therapy and the compression machine I am using is really helping to move the mass amount of waste in my leg.

[Sbluebam]

Hi Benita , I’m so excited for you . Can you share which surgeon is doing your liposuction and country please . I’ve lived with this since I was 13 yrs old and it’s destroyed. My life I badly need to try and find something succesful . My good wishes are with you 🙏

[Benita88 in reply to Sbluebam]

After help from my vascular doctor, I was referred to a plastic surgeon from NYU name Orianna Cohen. She is just lovely and she is making sure I do everything I must before I can have the procedure.

[Benita88 in reply to Benita88]

This is in NYC

[Sbluebam in reply to Benita88]

Thanks for your reply . What is the cost of the procedure you are having ?

Best Wishes

Barbara

[Benita88 in reply to Sbluebam]

I honestly do not know yet. I will share the ballpark once I find out. I have tried to look it up but there is no real info on SAPL. I do know there are 2 hospitals in the midwest that perform the procedure but I will have to look it up again.

[Kraut in reply to Benita88]

Interested in hospital info❤️I’m so happy you are getting good care❤️

[lovesradio]

Good luck Benita88, hope you don't have to wait too long for the SAPL treatment.

[Benita88 in reply to lovesradio]

Thank you, so very much!

[AngelBub]

Hey Benita, I’d love to hear more of your story, i was also born with lymphoedema. I’m fortunate enough that my condition was finally diagnosed at the age of 2 and I have benefitted from compression stockings ever since. I’m now 25 and my condition has worsened over the later years, I worry about how my condition will progress as I continue to age or have children, I was lucky enough to undergo some genetic testing recently and was found to be the first carrier of the vegf3 gene in my genetic line, how it happened I will probably never know but what I do know is going forward my descendants will have a 50:50 chance of contracting the condition, if you’d be happy to share more of your story I’d love to hear all about it

[Benita88 in reply to AngelBub]

I would be happy to share more of my life with it, you can ask me anything.

[Benita88 in reply to AngelBub]

If your condition is getting worse, I suggest you please act on it now by making sure they send you to therapy to learn the lymphatic drainage therapy and I also use a compression machine by Tactile Medical. the 2 together work well together and are giving me results. But this will take a while for me because my leg is rather large, but I get measured every week and there has been a difference. Also I am going to be fitted for a Juxta-fit. This will be easy for me to ware then all ways having to do the wrapping.

[Canada91 in reply to AngelBub]

Hi I was also born with lymph oedema but because it was in the 60 s Every time I complained of pains in my legs I was told it was growing pains. At 13 I took myself to the GP and he just asked if I had done any sports that day I had to which he replied it will go down tomorrow. I gave up and accepted it until I got married and my husband saw how much pain I was in It talk 9 years to finally get a diagnosis and that was accidental after a visit to a gynaecologist who did a full exam. He referred me to a Breast Cancer Surgeon and he performed a LYMPHANGIOGRAM The inject dye was supposed to show the lymphatic system and lymph nodes working properly. Even though they tilted the table for gravity to do its job I ended up with 2 green feet. A diagnosis of MILLROYS DISEASE was given which means I was born with a complete UN DEVELOPED lymphatic system. My surgeon explained bandages wouldn’t work because it would be too painful to put them on and as soon as they were removed things would return to normal or worse. I’ve tried Flow Tron bags on each leg but nothing has worked Had I been listened to as a child my disability would have been manageable. My arms and legs are huge. Leaving me very depressed and in a lot of pain. I need a knee replacement but nobody will do it because the risk of amputation is high. I get about the house and use a wheelchair outside. People stare because they just think you are hugely overweight. I am so pleased you are young enough to have treatment. Good Luck 🙏🏻

[Hrush]

Good luck Benita88. Please, please keep us updated on the SAPL result if it is done. However, I was always informed by plastic surgeons that plastic surgery is not valid for lymth (mine is after car accident in early childhood at 6, now I am 44).

Be strong and courageous!

[Benita88 in reply to Hrush]

Actually this is simply for debulking but I will still need to wear compression stockings which is fine by me because there is no cure and after that I will see what else can be done. But I will definitely share.

[NievesAzules in reply to Hrush]

There definitely are surgical options. I’m getting the debulking liposuction at Stanford and then in 9 months a lymph node transfer. I have primary in my right leg which don’t show up until I was 42 (9 years ago). Best of luck to Benita! I’ll be recovering with you in spirit!

[Benita88 in reply to NievesAzules]

Thanks so much and good luck to you as well!

[NievesAzules in reply to Benita88]

I just got my SAPL surgery today. I had a 5am arrival time and couldn’t sleep the night before so when the anesthesia hit I was out for 41/2 hours. The surgeon said that the surgery was shorter than she expected and straightforward.

I had bought a special wedge for elevating my legs and am beginning my recovery journey.

[Benita88]

I should also stress that my leg did not look like this until the past 10 years. Before that it was hardly noticeable but because I developed a Fibroid, I bled so much that it increased the size of my leg rapidly. My fibroid was 6 pounds and had to be removed but that did not help my leg at all. I recently had a test at the Department of Nuclear Science, it is a Lymphedema test that takes 4 hours. I will explain more in another post. But the result is, not much is going on in my veins. Oh and I am 53.

[JanCan15 in reply to Benita88]

Yes I’d love to hear about the lymphatic test you did. Mylymphedema is in the early stages but I’d love to see where it’s sttuggling so I can make sure it doesn’t progress.

[Hrush]

Yes please keep us posted with further developments on your story, may God do a miracle and heal it completely. I always put my hands on my leg and declare "Live, Live, Live" I command all my veins and other structures to hear the voice of life and live and carry on! God bless you all!

[Benita88]

God bless you as well, and that is a great attitude.

[Kraut]

Will keep you in my prayers ❤️🙏🏻🙏🏻🙏🏻

[Benita88]

Thank you

[Panda57]

Hi I would just like to say I really understand and feel for you. Unfortunately I had to leave my job over a year ago because I have M.S and I put my legs swelling and puffing up due to that but as its progressed and got so much worse it's been finally diagnosed a year later as chronic oedema. I cannot believe the size of my legs . So that's why I understand what you are saying about proving to work do they honestly not have eyes to see your condition in your legs. I do hope the treatment you are receiving helps and improves so you can manage every day life just that little bit more comfortably all the best .

[Benita88]

As of July 2021 I will be seeing my Doctor at the end of the month. I am not ready still but I am doing my best.