Lymphedema Support Group
Lymphedema is a condition of localized fluid retention caused by a compromised lymphatic system. The lymphatic system (often referred to as the body's "second" circulatory system) collects and filters the interstitial fluid of the body. Lymphedema has been barely recognized as being a serious health problem; however, this is slowly changing due to education and awareness.
Hi there! I thought I'd jump in with both feet and post a message here.
I have Secondary Lymphedema in both legs. My right leg is far worse than the left,
but there is serious swelling in both.
My journey... (Grab a Coffee, this is a long read!)
I had ovarian cancer in September of 1994, they removed 5 1/2 pounds of cancer and my right ovary. They lost 3 litres of blood during surgery and they say I almost died. I had 7-8 months of chemotherapy. Along with a huge scar from appetite to breakfast, I still have the blond haired wig to show for it. Souvenirs. ;)
A little over a year later I was jazzed and thought for sure that I was going to be deemed in remission. I *felt* good, I was starting to get things back on track and I was ready to move forward. I was mistaken. March 1996 I was back in for a second surgery. Lost part of my left ovary, and 1 1/2 pounds of benign mass. They opened half of the same incision. I told them that if they planned to have to go back in there again that they'd better be installing velcro or a zipper this time. They laughed. I was dead serious. Told them that I'd donated all the parts I wanted to, to science. (or anybody else for that matter..)
During both experiences the doctors fought tooth and nail to remove everything else just in case. It has been an aggressive tumor the first time, and surely I wouldn't be so lucky a second time. I was a week before my 25th birthday the first time. I have always wanted children, so the idea of giving up my chances didn't sit well with me. I had two doctors, a male and a female -- My dad had dubbed them Dr. Badbreath, and Dr. ChickenLegs early on, and to this day I have a tough time remembering the lady Dr's name. I did have to admit that he had a point.. LOL Anyhow, Dr. CL really tried to brow beat me into having a complete hysterectomy (sp?) done.. but I held fast, and when all else failed, brought my Dad and sister with me to the appointment for support. I asked her how she figured that I could bake cookies if she ripped out my cookie oven. She started talking about invitro, and I asked if she was going to pay the (then) $2000 a "chance" until I'd had my babies. Of course she said no. I asked if she could guarantee me that keeping my parts would kill me, she said No. So I told her on that basis, that she was NOT taking out anything else "just in case". She had a chance to rub it in a little when I went for the second surgery, but it was not cancerous so I was not deterred.
Not long after the second surgery, I began having swelling in my legs. Edema they said. So began 6 years of taking lasix for fluid reduction. It wasn't until I moved to Ontario that anybody questioned that diagnosis. It was 1998 when I was told that it wasn't Edema, it was Lymphedema, and lasix was the worst thing that I could be doing. Ugh! I was referred to the Thrombosis unit at the hospital, and have been seen there since.
Because of the size of my legs, (the right one in particular) they told me that I could not get regular stockings. It wasn't until much later that I heard about custom stockings and even that I was told that I couldn't get because they were too big. I pretty much gave up on it, and my legs grew and grew. I stopped my home daycare because I no longer felt comfortable tending to small children, because it was too uncomfortable to keep after them, and pick up after them. (short version of course).
Not long after, I learned about compression bandaging. The "trained" RN at the med supply showed us how to wrap my legs, and sold me 9 bandages in different sizes for my two legs, and wrapped my legs the first time. Sold me the Stays On, tape and all that. For several months, we would put them on, and an hour later they were coming off. At the ankle, knee and sometimes right at the top too. MOst days hunny would already be gone to work, so I was left with no choice but to take them off. SOmetimes he'd put them back on as soon as he got home, but more often he'd be tired, and I'd get tired of bugging him about it, and it just didn't happen. Have been going to the Dr. at the Thrombosis unit, but mostly he just checks in and sends me on my way. Prescribed Legaven, but other than that, left me on my own.
After much reading online, I'd been curious about MLD. Found myself an MLD therapist about an hour from here, and went for my first visits last week. She then wrapped my leg (just the good one for now). It took all 9 bandages that I'd been sold PLUS 4-5 more!! Plus she used foam padding at my ankle, and wrapped in foam all the way up. What a difference! For two days the bandages didn't move at all! It was tight, but it was bliss. I ended up having to take them off because she didn't have the tubing to put underneath and the foam was sticking to my skin, and making it burn. The bandages also kept slipping down and making my foot and toes feel like they were being squeezed off. NOt very pleasant I assure you.
We ended up dropping the MLD because our insurance only covered to $300 a year (well 80% of it) and we could afford to be going a few times a week. Started to research other options again. We also moved in this time. Hubby was in a car accident 2 weeks before moving day. What Joy (sarcatically speaking of course). Set myself up with physio appointments coinciding with when he was going since he was at home and unable to spend much time in the car due to back pain.
In any case physio was wonderful, they were doing some manual, ordered two air splints, and were trying accupuncture as well, and I was seeing results. Though still having issues keeping the bandages on, and not having anyone home to be able to re-do them for me I was back to looking for options. Hubby also started back to work part time as well, and insurance was giving me a hard time about some of the charges so I stopped treatment while we sorted it out so as not to incur more charges we would not have help with.
I discovered that our insurance would cover home care so I made some queries about whether or not I could have someone come to the house to do some of these treatments. Thought it was worth a try. I was so jazzed to find the Access Centre, and learn that I could in fact have care at home. The doctor wanted me to be pumped twice a day, and wrapped. Despite the orders they said they could only staff the once a day, which we thought was a good start at least. So for the next month or so, I had 7 day a week care, usually in the mornings. They added a second company 3 days a week in the mornings with the hopes that the other company would switch over and take those 3 evenings, but they said they didn't have the staff.
I should mention in there though that after telling them all about how heavy my legs are, and how it wasn't really a one person job and being basically shushed and told that it would have to be a one person job. It also had to be a nurse, and they wouldn't allow a PSW or other person to assist. The second company was wonderful, personable, friendly and always helpful. The other however, started pulling all kinds of behind the scenes garbage pulling nurses, leaving while I was pumped up and unable to release pressure, use the bathroom or anything til they came back, and showing up later and later in the day -- one of them told us she was a supervisor and it turned out later that the rudest of them all wasn't a supervisor at all. From the time the second company started the first one was getting less and less reliable.
We were seeing some good progression and then one of the splints blew (just a couple of weeks after warranty was over of course) so we were alternating between the two legs daily, since we were waiting on info for a lymph press. The primary nursing company finally pulled out all together complaining that the numbers weren't coming down fast enough, or staying down. the fact that I had ankles for the first time in years, and that my skin was looking pretty good, and I was starting to get out walking a little bit more didn't seem to matter -- well not to anybody but me.
I was starting to feel more like *me* feeling a little more excited about *being* and making plans. I even met with a seamstress friend of my mother inlaw's and she made me a skirt, we plan for her to make more but I see no point until we start making headway again.
At the end of November my nursing was discharged altogether. The access centre felt that I wasn't makig enough progress, and the progress wasn't lasting. They didn't seem to take into consideration the now sporadic nursing and the lack of splint. They kept citing their budget being limited, but they would not put it through my insurance so we could pay for it, why I'm still unsure.
We found a LE clinic in Ottawa, but before I can even go I have to come up with over 8000.00 to cover treatment, a lymph press, and payment for the various specialists she wants to send me to. All pay per service, and all pay up front, not bill to insurance or anything. We just don't have that kind of ability. The access centre sent a worker here to help draft a letter for funding for a local group. She sent me an email with a started letter, (first paragraph basically) but it contained some misinformation.. I consider letter writing to be one of my strong suits so I took her sample and wrote a letter, sent it back to her for perusal. Just before Christmas I bugged her again because I hadn't heard anything in several weeks. Turns out that she'd been told to discharge me at the end of november. Nursing was discontinued then but they'd told me that all other services would continue (OT, PT, and SW) though one by one they've all stopped coming. Just managed to get the Dietician and SW back over the last couple of weeks. I gather she figured I didn't need the SW any more because the letter was done -- nevermind submitting it, or followthrough or anything. It's all so very frustrating. I have a wheeled walker now that I can't use because my cankles are back, my feet are so swollen too that it hurts to even put them on the floor, and the calf/ankles push down on top so it's almost always painful. Apparently they will look at reinstating nursing once i've been through the 2 week treatment in Ottawa, but we're stll working on the money tree..
I contacted my old physio this past week to see if I could see her, even if I can set up something a couple of times a week it's got to be better than doing nothing at all. I have to find something positive in all of this, and some way to move forward. Ideally I'd love to find someone local to buddy up with, and excercise with but so far no luck. I haven't given up yet..it would be wonderful to have others to share the ups and downs with on a regular basis. I have found a few special friends through various med groups, but there's no such thing as too many friends, or too much support right?
In addition to LE, I also deal with PCOS (irregular cycles, bleeding for way too long, low blood/iron, Insulin resistance (recently upgraded to Type 2 diabetes), Asthma, Chronic back, neck and shoulder pain (Motor vehicle accident) and Sleep Apnea. Some of which will leave or at least improve once I get my LE in check, and lose some weight.. (fingers crossed).
I look forward to chatting with others here, learning and sharing.. I can't imagine what it would have been like had I not had others to compare notes with along the way. It makes SO MUCH of a difference to know that the person telling you that they know where you're coming from, and you know that it's not just words to say..
If you're still with me after all that, I applaud you and thank you..
Cheers!
I have Secondary Lymphedema in both legs. My right leg is far worse than the left,
but there is serious swelling in both.
My journey... (Grab a Coffee, this is a long read!)
I had ovarian cancer in September of 1994, they removed 5 1/2 pounds of cancer and my right ovary. They lost 3 litres of blood during surgery and they say I almost died. I had 7-8 months of chemotherapy. Along with a huge scar from appetite to breakfast, I still have the blond haired wig to show for it. Souvenirs. ;)
A little over a year later I was jazzed and thought for sure that I was going to be deemed in remission. I *felt* good, I was starting to get things back on track and I was ready to move forward. I was mistaken. March 1996 I was back in for a second surgery. Lost part of my left ovary, and 1 1/2 pounds of benign mass. They opened half of the same incision. I told them that if they planned to have to go back in there again that they'd better be installing velcro or a zipper this time. They laughed. I was dead serious. Told them that I'd donated all the parts I wanted to, to science. (or anybody else for that matter..)
During both experiences the doctors fought tooth and nail to remove everything else just in case. It has been an aggressive tumor the first time, and surely I wouldn't be so lucky a second time. I was a week before my 25th birthday the first time. I have always wanted children, so the idea of giving up my chances didn't sit well with me. I had two doctors, a male and a female -- My dad had dubbed them Dr. Badbreath, and Dr. ChickenLegs early on, and to this day I have a tough time remembering the lady Dr's name. I did have to admit that he had a point.. LOL Anyhow, Dr. CL really tried to brow beat me into having a complete hysterectomy (sp?) done.. but I held fast, and when all else failed, brought my Dad and sister with me to the appointment for support. I asked her how she figured that I could bake cookies if she ripped out my cookie oven. She started talking about invitro, and I asked if she was going to pay the (then) $2000 a "chance" until I'd had my babies. Of course she said no. I asked if she could guarantee me that keeping my parts would kill me, she said No. So I told her on that basis, that she was NOT taking out anything else "just in case". She had a chance to rub it in a little when I went for the second surgery, but it was not cancerous so I was not deterred.
Not long after the second surgery, I began having swelling in my legs. Edema they said. So began 6 years of taking lasix for fluid reduction. It wasn't until I moved to Ontario that anybody questioned that diagnosis. It was 1998 when I was told that it wasn't Edema, it was Lymphedema, and lasix was the worst thing that I could be doing. Ugh! I was referred to the Thrombosis unit at the hospital, and have been seen there since.
Because of the size of my legs, (the right one in particular) they told me that I could not get regular stockings. It wasn't until much later that I heard about custom stockings and even that I was told that I couldn't get because they were too big. I pretty much gave up on it, and my legs grew and grew. I stopped my home daycare because I no longer felt comfortable tending to small children, because it was too uncomfortable to keep after them, and pick up after them. (short version of course).
Not long after, I learned about compression bandaging. The "trained" RN at the med supply showed us how to wrap my legs, and sold me 9 bandages in different sizes for my two legs, and wrapped my legs the first time. Sold me the Stays On, tape and all that. For several months, we would put them on, and an hour later they were coming off. At the ankle, knee and sometimes right at the top too. MOst days hunny would already be gone to work, so I was left with no choice but to take them off. SOmetimes he'd put them back on as soon as he got home, but more often he'd be tired, and I'd get tired of bugging him about it, and it just didn't happen. Have been going to the Dr. at the Thrombosis unit, but mostly he just checks in and sends me on my way. Prescribed Legaven, but other than that, left me on my own.
After much reading online, I'd been curious about MLD. Found myself an MLD therapist about an hour from here, and went for my first visits last week. She then wrapped my leg (just the good one for now). It took all 9 bandages that I'd been sold PLUS 4-5 more!! Plus she used foam padding at my ankle, and wrapped in foam all the way up. What a difference! For two days the bandages didn't move at all! It was tight, but it was bliss. I ended up having to take them off because she didn't have the tubing to put underneath and the foam was sticking to my skin, and making it burn. The bandages also kept slipping down and making my foot and toes feel like they were being squeezed off. NOt very pleasant I assure you.
We ended up dropping the MLD because our insurance only covered to $300 a year (well 80% of it) and we could afford to be going a few times a week. Started to research other options again. We also moved in this time. Hubby was in a car accident 2 weeks before moving day. What Joy (sarcatically speaking of course). Set myself up with physio appointments coinciding with when he was going since he was at home and unable to spend much time in the car due to back pain.
In any case physio was wonderful, they were doing some manual, ordered two air splints, and were trying accupuncture as well, and I was seeing results. Though still having issues keeping the bandages on, and not having anyone home to be able to re-do them for me I was back to looking for options. Hubby also started back to work part time as well, and insurance was giving me a hard time about some of the charges so I stopped treatment while we sorted it out so as not to incur more charges we would not have help with.
I discovered that our insurance would cover home care so I made some queries about whether or not I could have someone come to the house to do some of these treatments. Thought it was worth a try. I was so jazzed to find the Access Centre, and learn that I could in fact have care at home. The doctor wanted me to be pumped twice a day, and wrapped. Despite the orders they said they could only staff the once a day, which we thought was a good start at least. So for the next month or so, I had 7 day a week care, usually in the mornings. They added a second company 3 days a week in the mornings with the hopes that the other company would switch over and take those 3 evenings, but they said they didn't have the staff.
I should mention in there though that after telling them all about how heavy my legs are, and how it wasn't really a one person job and being basically shushed and told that it would have to be a one person job. It also had to be a nurse, and they wouldn't allow a PSW or other person to assist. The second company was wonderful, personable, friendly and always helpful. The other however, started pulling all kinds of behind the scenes garbage pulling nurses, leaving while I was pumped up and unable to release pressure, use the bathroom or anything til they came back, and showing up later and later in the day -- one of them told us she was a supervisor and it turned out later that the rudest of them all wasn't a supervisor at all. From the time the second company started the first one was getting less and less reliable.
We were seeing some good progression and then one of the splints blew (just a couple of weeks after warranty was over of course) so we were alternating between the two legs daily, since we were waiting on info for a lymph press. The primary nursing company finally pulled out all together complaining that the numbers weren't coming down fast enough, or staying down. the fact that I had ankles for the first time in years, and that my skin was looking pretty good, and I was starting to get out walking a little bit more didn't seem to matter -- well not to anybody but me.
I was starting to feel more like *me* feeling a little more excited about *being* and making plans. I even met with a seamstress friend of my mother inlaw's and she made me a skirt, we plan for her to make more but I see no point until we start making headway again.
At the end of November my nursing was discharged altogether. The access centre felt that I wasn't makig enough progress, and the progress wasn't lasting. They didn't seem to take into consideration the now sporadic nursing and the lack of splint. They kept citing their budget being limited, but they would not put it through my insurance so we could pay for it, why I'm still unsure.
We found a LE clinic in Ottawa, but before I can even go I have to come up with over 8000.00 to cover treatment, a lymph press, and payment for the various specialists she wants to send me to. All pay per service, and all pay up front, not bill to insurance or anything. We just don't have that kind of ability. The access centre sent a worker here to help draft a letter for funding for a local group. She sent me an email with a started letter, (first paragraph basically) but it contained some misinformation.. I consider letter writing to be one of my strong suits so I took her sample and wrote a letter, sent it back to her for perusal. Just before Christmas I bugged her again because I hadn't heard anything in several weeks. Turns out that she'd been told to discharge me at the end of november. Nursing was discontinued then but they'd told me that all other services would continue (OT, PT, and SW) though one by one they've all stopped coming. Just managed to get the Dietician and SW back over the last couple of weeks. I gather she figured I didn't need the SW any more because the letter was done -- nevermind submitting it, or followthrough or anything. It's all so very frustrating. I have a wheeled walker now that I can't use because my cankles are back, my feet are so swollen too that it hurts to even put them on the floor, and the calf/ankles push down on top so it's almost always painful. Apparently they will look at reinstating nursing once i've been through the 2 week treatment in Ottawa, but we're stll working on the money tree..
I contacted my old physio this past week to see if I could see her, even if I can set up something a couple of times a week it's got to be better than doing nothing at all. I have to find something positive in all of this, and some way to move forward. Ideally I'd love to find someone local to buddy up with, and excercise with but so far no luck. I haven't given up yet..it would be wonderful to have others to share the ups and downs with on a regular basis. I have found a few special friends through various med groups, but there's no such thing as too many friends, or too much support right?
In addition to LE, I also deal with PCOS (irregular cycles, bleeding for way too long, low blood/iron, Insulin resistance (recently upgraded to Type 2 diabetes), Asthma, Chronic back, neck and shoulder pain (Motor vehicle accident) and Sleep Apnea. Some of which will leave or at least improve once I get my LE in check, and lose some weight.. (fingers crossed).
I look forward to chatting with others here, learning and sharing.. I can't imagine what it would have been like had I not had others to compare notes with along the way. It makes SO MUCH of a difference to know that the person telling you that they know where you're coming from, and you know that it's not just words to say..
If you're still with me after all that, I applaud you and thank you..
Cheers!
please go read my lymph..info.
i didn't put alot in there but....i went through 5 pairs of stocking and one MLD PT from Hell and the other an angel..sent right from God..so know your struggle to find help in JUST ONE SMALL AREA OF YOUR STRUGGLE.
I HAVE THESE GREAT STOCKINGS MADE IN GERMANY AND SENT HERE..THEY ARE CUSTOM MADE..I'D HAD 2 CUSTOM PAIR THAT WERE A TOTAL WASTE OF $$ THESE ARE A THICKER WEAVE AND ARE SO MUCH MORE STABEL ..
MY LEG IS REALLY BIG AND MISS SHAPENED DO TO TUMORS IN THAT CALF SO..WRITE ME AND I'LL SEND INFO AND WEB SITE IF THEY HAVE ONE. GOT THEM FROM MY PT. WHO ORDERED THEM.
HUGS'JUDY
I am finding it difficuly to come to terms with loosing so much of my mobility and dignity.
I applaud you for trying to get some form of treatment, I am currently awaiting treatment and have paid for some Manual Lymphatic Drainage, which made my legs feel good, but didn't seem to bring down the size.
I will get myself upto speed with these replies, and even though I am in England it's nice to know that I can contact someone who understands.
Pat
You have gone through so much. I thought mine was bad. My lymphedema is in my right and now left leg. I can hardly walk at all. It hurts so bad. I am really trying not to be upset. It is so hard! I never cry and I am crying all the time now. A lot because of the pain, but a lot because I can't do hardly anything for my self any more. I applaud you for your stiff upper lip approach.
My leg is so deformed looking. Hurts all the time. Its hard to walk. I have to force myself to get up and do the everyday things that need to be done here at home. I am on social security and I have medicare. But they do not cover all of the expenses I was told on this problem.
So to be honest, I do not know what to do anymore. Or even where to turn to. I have been turned down so much. Now I cannot even drive. My husband has to do that for me and its frustrating. He works full time so he is not able to take me to appts etc.
I weigh more now than I have ever. I also suffer from PCOS, sleep apnea, Back pain, and Depression. Just recently started taking wellbutrin for that.
You have defiantly gone through alot. I will be praying for you that you will be able to get the help you need.
Hugs,
Denise