My Battle with Lymphedema

HOSPICE, genetics clinic, leaking legs, EMG, nerve conductions, phantom liquid feeling, chronic fatigue, chills, malaise, ankle pain, swollen feet, transient lymphedema, full body lymphedema, tissue hardness, dystonia, painful boil

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My Battle with Lymphedema

Postby Atlantamary » Fri Feb 19, 2010 12:08 pm

I was diagnosed with lymphedema in both legs about 7 years ago. At that time, both of my legs were fairly large, and I was developing a big lump behind my left knee. I went to my orthopedist who couldn’t determine what I had. He referred me to Emory where a doctor immediately diagnosed my condition as lymphedema and the lump behind my knee as a "pseudo tumor" (basically a pocket of skin filled with lymph fluid). Unfortunately things went downhill from there. I asked the doctor what I should do to treat the lymphedema and he said....”lose weight” and that I could have a "simple" plastic surgery procedure to remove the tumor. No mention of going to an outpatient lymphedema clinic, no mention of compression wrapping, garments, etc. Bottom line, I didn't get help when I should have--partly my fault for having my head in the sand-- and partly the fault of the medical community for giving me bad (or incomplete) information.

For the next few years, my condition slowly got worse--so slowly that I didn’t really notice all the awful changes that were taking place in my legs. Then, one day the tumor behind my knee grew so large I couldn’t get in and out of my car. Suddenly I was house bound. My legs grew so heavy I couldn’t swing them over my bed and was forced to sleep on a sofa that was lower to the ground. I became quite adept at coping with my situation: using the internet to order meal services, shop, and picking up consulting jobs in order to earn a living working from home. Eventually, I complied with the doctor’s advice and lost a considerable amount of weight. This made no difference in the course of my lymphedema, and I continued to get worse and worse.

By February of this year I had developed weeping wounds (and cellulitis) in both legs, and the tumor behind my left knee was larger than the size of a basketball. My legs were huge and I had progressed to Stage III Lymphedema. Even though I had been convinced nothing could be done to really improve the condition of my legs, I was finally determined to at least try and get help. I did some research on the internet and discovered that there were a few inpatient lymphedema clinics in the U.S., but they had very rigorous procedures you must go through in order to get into them. I decided my best chance was to get admitted to a hospital, treated for the cellulitis and wounds, and hopefully be referred to an inpatient facility.

I was admitted to an Atlanta hospital and ended up staying there for about two weeks. They did an excellent job treating my wounds and cellulitis, but the medical advice I received about my lymphedema left something to be desired. The admitting physician said she didn’t think anything could ever be done to improve the condition of my legs; a vascular surgeon said maybe I could get admitted to a university hospital and they could do some sort of experimental procedure on my legs—take them down to the bone and start over; and a plastic surgeon was convinced I was about to lose both legs at any minute. The saving grace was their lymphedema therapist who volunteered to wrap one of my legs to show me what could be done with compression therapy. She wrapped my right leg up to the knee for the last 3 days I was in the hospital. I absolutely couldn’t believe the changes that took place. After the first two days, I had lost 6 liters of fluid in the leg—the equivalent of 3 large bottles of soda!

Meanwhile, the search for an inpatient lymphedema center wasn’t going well. I was rejected by a center in Tennessee because their requirements required me to have more mobility than I had and I didn’t have enough family members to assist at discharge. I was still waiting to hear from another facility located in Alabama. Then… an unlikely miracle happened. My case manager happened run into a representative of the Floyd Medical Center’s rehabilitation center (located in Rome, GA) in the hospital parking lot and discussed my situation with him. He mentioned that Floyd had 4 physical therapists on staff who were also lymphedema therapists---all had worked in their outpatient treatment center at one time or another. I met with him and quickly decided Floyd was the place for me.

It turned out I had one last hurdle to overcome before I could begin my inpatient lymphedema care. On the day I was supposed to transfer to Floyd, my insurance company denied my admission. They contended that I wouldn’t be able to handle the rigors of an acute rehabilitation center. Instead, they wanted to place me in a nursing home where I would have received wound care and antibiotics—but no lymphedema treatment. Thankfully, my admitting physician got the insurance company to reverse this decision, and I was on my way to Rome, GA.

It’s hard to put into words how wonderful my experience at Floyd turned out to be. They have a first-class rehabilitation center and the staff was simply terrific. I was their first lymphedema patient, so it was a learning experience for all of us. My primary lymphedema therapist was fearless about taking on such a difficult case and her colleagues all helped out as well. When they first started wrapping the tumor on my left leg, it took 3 people just to hold and wrap it. I stayed at Floyd for 5 weeks and had my legs wrapped twice a day. By the time I left, I had lost 134 pounds in the legs and the tumor in my left leg had completely deflated. (It mostly deflated after just a few days of compression wrapping.) I was also much more mobile thanks to a rigorous course of physical and occupational therapy. I could now get in and out of a car and walk short distances using a walker. For longer hikes, I continued to rely on a wheelchair.

Since then, I've been going to outpatient lymphedema treatment at the Gwinnett SportsRehab Center in Duluth, GA. I’ve again been blessed with a wonderful therapist who has worked tireless sly to shape my legs and break up the fibrotic tissue in them. What I love is that she’s always looking for different approaches to move the treatment forward, be it MLD therapy, kinesio taping, laser treatments, use of a Hydro Track (kind of an underwater treadmill), or meticulous skin care. I've lost an additional 50 pounds in the legs and the deflated tumor has mostly reabsorbed into my body. Now, I could probably have a plastic surgery procedure to get rid of what little remains, but I'll wait at least a year before making that decision.

I’m in the process of being fitted for compression garments (not so easy) and am learning how to make adjustments in my life to accommodate the needed lymphedema care. I feel like I’ve been given a second chance at life, and I’m determined to make the most of it. I thank God every day for no longer being house-bound, for being able to drive, being able to go to the grocery store, or to a friend’s house.
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Re: My Battle with Lymphedema

Postby langels » Sun Feb 21, 2010 10:18 pm

your story and other show lymph edema is a joke. I have it from injuries. I know it but many doctors don't. they don't have right frequenceis for lymph edema on scale for fluid is what I am told. and diagnoisis is harder. most treat by wrapping. I have done this but my lymph is my belly. I loved reading your sucess. and hope you have the strenth to continue. I also want to state diet helps too. I am on the waterfall diet. strenthen vascular and lymph as well as body is a bid deal. I have a website on tripod my water diet. it tells my story and how radiology is a joke. they can't tell how to find fluid from fat is a big thing. and after all these years should know better. but individual most doctor don't know and don't tell you helpful things. two year ago I got my first lymph therapist and he would not touch my belly. so we work my leggs and arms as it helps. he told me if you have unfound injuries anything he did would hurt me. and said to wrap my belly. which was hard as nothing fit it. I look very pregnant. thanks for sharing. I know lynog edena hides alot. nerve damage too. once they find this perhaps they find a reason to take it serious.
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Re: My Battle with Lymphedema

Postby grace » Sat Feb 27, 2010 3:25 pm

Thank you for sharing your story, I can relate to you as well. Getting in and out of bed was becoming quite the challenge for me and I was unable to drive as the lymphedema in my stomach was in the way of the steering wheel. I put the seat back as much as I could but then couldn't reach the pedals, what a nightmare.

I didn't know how or where to get help, how do you find a doctor who understands and cares about the lymphedema, instead of just criticizing and telling you to lose weight?

I got a new doctor after no help from the last one, but the new guy is also obese and telling me to just eat less. In other threads I've explained about how I'm going about weight loss, but again, it's all on my own, no help from the doctor except the advice "calories in, calories out" which doesn't seem to be working all that well for HIM. I have it under control now but it's going to take a long time.

I would love to have gotten wrapped when the fluid was so torturous but had no idea how to go about it and get it paid for. There seems to be a lack of knowledge on the doctor's parts. I need a compression garment, as I lose weight it would really help, but now that the hardness is out of my belly I'm guessing I'll be figuring it out and paying for it on my own, since I don't want or need a gastric bypass surgery and no longer qualify as a lymphedema patient.

I'm happy for you, that you were able to get real help, and also able to find REAL work you could do from home. I'd looked into that but was afraid of internet scams and once again, didn't know how to go about it.
Best wishes on your continued recovery.

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Re: My Battle with Lymphedema

Postby GingerLee » Thu Apr 01, 2010 7:06 am

Thanks so much for sharing your story! I was diagnosed with primary lymphedema two years ago. I am already a very heavy girl, so the addition of 100 plus pounds of fluid has taken its toll. I now have developed sleep apnea, and a minor heart problem that I do have to take medicine for. I so miss the old me... I used to play sports and be so much more active , but the legs really restrict me. No one in the medical field seems to know anything(I live in NY state). I went to a regular therapist that had some training in LE, was taught how to wrap and massage and then sent on my way. I wrap every day... but the legs seem to be at a stand still. Funny I read your post, because my brother just moved to Duluth Georgia two weeks ago. I really wonder if I should go stay with him for awhile, and see if I can work on this with more progress. If anyone reading this knows a good therapist near Rochester NY, please let me know. Have a Good Day everyone! :D
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Re: My Battle with Lymphedema

Postby patoco » Thu Apr 01, 2010 9:05 am

Hi Ginger

Welcome to the family!!!!

Also, I just wanted to know that I moved your original post to the top forum section "Welcome Family" as the forum is was in (as it says) is administrative.

I do know the LE clinics in and around Duluth and can highly recommend them.

The only problem you might have is in getting your insurance company to approve you going down to Georgia for treatment. However, it is doable (in my opinion" - it just might take some negotiation/communication between you, your doctor and the insurance company.

If you decide to stay where you are, I wish you all the best too in hopes and prayers that the treatment can really help :!: :!: :!:

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Re: My Battle with Lymphedema

Postby Cookala » Thu Aug 04, 2011 10:45 pm

I really appreciate your story. So happy for you and hope it continues to go well. Related to it so much. This is the first forum I have ever joined and have been reading it for some time, felt it was so good in many ways. Spend most of my time researching, and searching for what I need. That is in between the four hours I have just spent trying to put on my rubber soled slippers so I could get out of bed without slipping and falling. I wrote a forum note last nite, (my first) and made it short and pithy like a grocery list. After all, why bore someone with all my "yabbing". Yes, I know if I love and value myself, then I love and value others and know I am worthy of the same. Still, I have been in this small and shrinking space for 10 years and no matter how hard I try, I continue to decline and my resources also and I am afraid. I have more of a story that I want to share and will do so. Again thanks for sharing - you have touched me.
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