Sarah Jouanny is a blogger living with primary lymphedema since 2013. She is the creator of MyLymph.com and passionately works to help improve the lives of others living with lymphedema.
7 replies to Lymphedema Awareness: Introducing myself and my life with LE.
l have stage 3 Lymphedema an l have Cirad wraps for my legs an l don’t care what ppl say when they look at my legs l wear shorts l look at this way it is my legs they was pretty at one time an maybe will be again l also have a wound that will not heal right so here is the thing go with it be proud of who you are no matter what your leg looks like.
Hi Sarah, Thank you for brining out the awareness of lymphodemia. I have suffered from this condition for many, many years in both legs from below my knees. Sometimes they swell so much I cannot get my trousers on. Whilst I have great friends who understand my condition, I too have had people make fun and say cruel things to me or loud enough I can hear them. Yes, it hurts e greatly especially from older people. If they only knew how painful it can get, the skin so tight it feels like it will burst or walking into something that breaks the skin and then the fluid escapes, stains your clothes ( best method I have found to stop, is to apply pressure by taping a tampon over the area, the pressure will stop the flow) not to mention embarrassing. I would love to be able to wear skirts or dress but as I am very self conscious I dare not. I find the best for me is to lay on a flat surface for several hours. It is funny how the legs reduce down to normal but in 10 – 20 minutes the ankles swell and the rest follows I too find I hard to find shoes and socks to fit. Sorry to go on but unless you suffer from it you don’t understand what it is like. I have look at surgery etc but it is so expensive and does not always fix the problem Anyway, thank you Jennifer, Sydney, Australia
I’m Deb Lindley from Yeppoon, Qld Australia. I have the worst Lympho in Australia I do believe all from radical cancer surgery twice – 30 years apart. The first time wasn’t so bad, quite unnoticeable with some 47 Lymphnodes taken from both groin areas, but this last lot of surgery in 2013 took another 9 Lymphnodes only on the left ! At its’ worst – my leg would’ve easily weighed 38 to 40 kgs. I have just been through some 4 weeks of Coban 2 sticky bandaging every 3 days to reduce it somewhat. It needs to be taken down even smaller.
There is a ‘procedure’ done at the MacQuarie Uni in Sydney, some $45K just for the procedure – like Liposuction, then there is accom costs for the 4 or so weeks, stockings every 3 months as the leg decreases = $500 per stocking, and the return airfares to the Uni every 3 months. It has been successfully done on a Yeppoon woman, and her leg is fabulous ! Yes, she has to wear her comp stocking 24/7, but both legs look the same now.
We need this procedure to be put on the PBS in Australia.
There is also a garment from the USA – created by a Dr Reid known as the Reid Sleeve 3D Compression Garment = arm, leg and foot. I have 2 – one leg in large and one leg in medium as well as the foot garments. They are quite effective too, but I believe that the Liposuction procedure should be put on the PBS for us sufferers !
Hi Deb, yes you are right- insurance coverage needs to be MUCh better for lymphedema patients. Its ridiculous how much treatments and materials cost. I know a few women who have had the liposuction procedure done in the USA by Dr Granzow- https://manhattanbeachplasticsurgery.com/lymphedema-surgery/
And they have completely normal legs now (but of course have to wear compression stockings for the rest of the life but WHO CARES!!!!!) If I were you and had a very severe case of Lymphedema I would not hesitate at all to have the liposuction surgery. $45,000 is a LOT of money, and I know that the cost of this in the USA is around $20,000 so its nearly the same as the Australian dollar- I would check this out if I were you. Could save you a bit of money, plus this Dr Granzow is very well renowned for this surgery. Even with flights and accommodation in the USA, it could end up cheaper than 45k. Let me now how you get on with it all and good luck! You have options, dont forget it!! xxxx
Hello I developed lymphodema 3 years ago in one ankle and spreads nearly to knee , doctors put it down to a sports injury I got to the knee ten years previously, and my biggest concern is that I am planning to get pregnant and am afraid that the whole lymphodema will get worse, I have it somewhat under control at minute with compression garments and also changing my jobs so I’m not standing on my feet for 12 hours straight. Any advice on the matter of pregnancy and lymphodema would b greatly appreciated thanks dee
Hey there 🙂 Everyone is different and has their LE affected differently during pregnancy. Mine started with my first pregnancy and then got a bit better after I gave birth. Then it really got bad at the end of my second pregnancy and never went down after that. All I can recommend is taking extra care of your leg whilst pregnant- swim/ exercise more, bandage if you need to, do more MLD, be extremely good with wearing compression stockings, drink lots of water and avoid things that are inflammatory in your diet. There is no specific set of rules to follow (as you know!) and no-one can say how your leg will be during pregnancy. Hope that helps a bit xoxo
l have stage 3 Lymphedema an l have Cirad wraps for my legs an l don’t care what ppl say when they look at my legs l wear shorts l look at this way it is my legs they was pretty at one time an maybe will be again l also have a wound that will not heal right so here is the thing go with it be proud of who you are no matter what your leg looks like.
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Hi Sarah, Thank you for brining out the awareness of lymphodemia. I have suffered from this condition for many, many years in both legs from below my knees. Sometimes they swell so much I cannot get my trousers on. Whilst I have great friends who understand my condition, I too have had people make fun and say cruel things to me or loud enough I can hear them. Yes, it hurts e greatly especially from older people. If they only knew how painful it can get, the skin so tight it feels like it will burst or walking into something that breaks the skin and then the fluid escapes, stains your clothes ( best method I have found to stop, is to apply pressure by taping a tampon over the area, the pressure will stop the flow) not to mention embarrassing. I would love to be able to wear skirts or dress but as I am very self conscious I dare not. I find the best for me is to lay on a flat surface for several hours. It is funny how the legs reduce down to normal but in 10 – 20 minutes the ankles swell and the rest follows I too find I hard to find shoes and socks to fit. Sorry to go on but unless you suffer from it you don’t understand what it is like. I have look at surgery etc but it is so expensive and does not always fix the problem Anyway, thank you Jennifer, Sydney, Australia
LikeLiked by 1 person
I’m Deb Lindley from Yeppoon, Qld Australia. I have the worst Lympho in Australia I do believe all from radical cancer surgery twice – 30 years apart. The first time wasn’t so bad, quite unnoticeable with some 47 Lymphnodes taken from both groin areas, but this last lot of surgery in 2013 took another 9 Lymphnodes only on the left ! At its’ worst – my leg would’ve easily weighed 38 to 40 kgs. I have just been through some 4 weeks of Coban 2 sticky bandaging every 3 days to reduce it somewhat. It needs to be taken down even smaller.
There is a ‘procedure’ done at the MacQuarie Uni in Sydney, some $45K just for the procedure – like Liposuction, then there is accom costs for the 4 or so weeks, stockings every 3 months as the leg decreases = $500 per stocking, and the return airfares to the Uni every 3 months. It has been successfully done on a Yeppoon woman, and her leg is fabulous ! Yes, she has to wear her comp stocking 24/7, but both legs look the same now.
We need this procedure to be put on the PBS in Australia.
There is also a garment from the USA – created by a Dr Reid known as the Reid Sleeve 3D Compression Garment = arm, leg and foot. I have 2 – one leg in large and one leg in medium as well as the foot garments. They are quite effective too, but I believe that the Liposuction procedure should be put on the PBS for us sufferers !
LikeLike
Hi Deb, yes you are right- insurance coverage needs to be MUCh better for lymphedema patients. Its ridiculous how much treatments and materials cost. I know a few women who have had the liposuction procedure done in the USA by Dr Granzow- https://manhattanbeachplasticsurgery.com/lymphedema-surgery/
And they have completely normal legs now (but of course have to wear compression stockings for the rest of the life but WHO CARES!!!!!) If I were you and had a very severe case of Lymphedema I would not hesitate at all to have the liposuction surgery. $45,000 is a LOT of money, and I know that the cost of this in the USA is around $20,000 so its nearly the same as the Australian dollar- I would check this out if I were you. Could save you a bit of money, plus this Dr Granzow is very well renowned for this surgery. Even with flights and accommodation in the USA, it could end up cheaper than 45k. Let me now how you get on with it all and good luck! You have options, dont forget it!! xxxx
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Sorry, is it $45,000 because you are doing both legs? That would be more accurate for the cost I guess…
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Hello I developed lymphodema 3 years ago in one ankle and spreads nearly to knee , doctors put it down to a sports injury I got to the knee ten years previously, and my biggest concern is that I am planning to get pregnant and am afraid that the whole lymphodema will get worse, I have it somewhat under control at minute with compression garments and also changing my jobs so I’m not standing on my feet for 12 hours straight. Any advice on the matter of pregnancy and lymphodema would b greatly appreciated thanks dee
LikeLike
Hey there 🙂 Everyone is different and has their LE affected differently during pregnancy. Mine started with my first pregnancy and then got a bit better after I gave birth. Then it really got bad at the end of my second pregnancy and never went down after that. All I can recommend is taking extra care of your leg whilst pregnant- swim/ exercise more, bandage if you need to, do more MLD, be extremely good with wearing compression stockings, drink lots of water and avoid things that are inflammatory in your diet. There is no specific set of rules to follow (as you know!) and no-one can say how your leg will be during pregnancy. Hope that helps a bit xoxo
LikeLike