Part Thirteen

Hi all, I feel the need to start a LE support group,locally. Would like info on how you may have started one . Want to hear of sucesses and non sucesses. I also feel the need for all Doctors to be more informed or more open with speaking about lymphedema. Folks have stopped whispering about cancer and colonoscopy, bowel problems, lets get lymphedema out in the open. Will welcome any email, I am a grandmother.

I am a 45 yr old female born with Milroys Disease. I would have liked to have at least ONE person to relate to growing up, but it was a long, painful road. Now with modern technology, it is possible to join up with others who have a similar cross to bear. A famous quote I love is: "With acceptance comes peace". That said, there is alot we CAN do. I am here to give encouragement. I will write again soon. -tf

Hi.My Son Michael has has this since he was a month old and he is going to be 24 in December. I did not know that so many people had this also. When we have went to the DRS.the DRS. did not know about this untill the last year.Mike has had a very hard life with this.From school age he was teased and he could not do what the other kids were able to do.Michael has this in both his legs, and in his chest and on the tops of his hands.You have to deal with the sores on legs and feet and he has had too many infections to count and the leaking that also happens.We have went for many treatment through the years but, this last year, Mike got very sick with the fluid in his chest. He was given by one of the DRS. a water pill called FUROSEMIDE. Mike took this for the 3 weeks he was in the hospital and in 10 days lost 60 lbs of water weight. I was there I saw a big difference. The draw back to this is you have to go to the bathroom alot.So with this it gets to be a fustration for him and will go off it fo a while and the water come back. He also has to wear the pantihose style stockings which are very hard to get on and off. He does his leg pump 4 times a week. The DRS. called Michaels,Congenital Lymphedema.His Dad got this when he was 16 from getting spiked with a baseball shoe in the ankle and Mikes sister has this in her ankles and tops of her ands. Not very severe. Michael is really a great young man and I am so proud of Him for all he's been through.But this does make him feel very insecure about himself and being around others. He has felt that he is the only one with this and no one could understand what he has.If there is any one who would like to write to Mike,please do so. Only someone with this could really understand....

My granddaughter was just diagnosed with Lymphedema and she is only ten, never had cancer, or chemo. I had never heard of this disease until now. can anyone help explain it,We live in the South Bronx in N.Y.C. and I would appreciate it if someone knows of a place to go for treatment for her. Lastly, Can someone please fill me in on what to expect in the future for her? She has primary Lymphedema on her foot.

I am a 16 year breast cancer survivor. (Mastectomy & removal of all my lymph nodes). I only developed LE in my right arm a couple of months ago. I just finished a series of treatments in the LeDuc method of MLD. I love my therapist, and she was extremely informative about the procedures. I am on my own now and attempting to continue with the daily Self-MLD and I was lucky to be able to get a multi-chamber compression pump. (I don't know how they got my insurance to cover it, but I'm not going to question it).

Anyway, my question is this....does anyone know where to purchase a video in the LeDuc methond of MLD? I've searched the web and it seems all the videos are from Vodder.

Thanks.

After the discovery of breast cancer and 5 surgeries later, I now have lymphedema. The pain is not so bad, but it is very uncomfortable. When it first began I had blood clots in the right arm and could not have therapy. Now I am going to a therapist and the therapy feels great, she has ordered a sleeve and until then my husband or kids wrap my arm in ace bandages which help a lot. Also, whenever I sit down, which seems like a lot once I am home from work, I elevate it. I work on computers all day and have found that a bath towel rolled up and placed under my arm pit helps too. Also a RN friend of mine has done a "healing touch" and it helps also. I am also so happy that after all the surgeries, two rounds of chemo and 28 radiation treatments, I can handle the lymphedema, and thank God Almighty that that is all there is to remind me of the cancer I HAD(past tense). Good luck to you all and may God bless.

Hi,I totally agree with the power of positive thought.I had my lymphedema praecox discovered when I was 6 yrs old. It took awhile but up until recently,I was leading a fairly normal life,drinking alot of water,wearing the support hose and doing the bandaging.Now at 48 it's acting up and I am once again looking at this condition,it's hard to believe after so many years testing and research are not where they should be.I would like to see more research as far as using an energy source to heal this.I have lived with this for so many years if you have any questions I would be happy to answer them if I can. Today is a stress free day for me and I will meditate and elevate.

I have had LE in my right arm since my mastectomy. I found out about a lymph edema suction pump (Saugpumpen-Massagegeraet) made either in France or Germany. Does anyone know the manufacturer of this pump and where it can be ordered? Please email me if anyone knows. I will do more research and post again if I found anything.

Hello everyone. I wanted to share my LE story. I've had LE in my left leg since 1992. It appeared "out of nowhere". I am now 33 years old. It was very difficult to all of a sudden have a condition where you feel like you aren't "normal". Especially in the summer-time - how I'd love to wear shorts again; to go to the pool and not feel self conscious; to just be able to wear sandals. I understand how a lot of people here feel about the self-conscience aspects of this disease, plus the lack of mobility and discomfort and sometimes pain. I have been on the constant search for a cure, even though we've been told there isn't one. I do not believe this cannot be corrected. I believe we must stay positive. I want to share a few things that have helped me. First, I have noticed a direct correlation between LE and stress levels. Stress negatively affects LE. I would get into a vicious circle where I would be stressed (from work for example); my leg would get worse and I would stress because my leg was worse. When I'm relaxed and happy, my leg feels softer. Try to maintain a happy attitute (it is very hard, I know). Diet is very important. First and foremost, I drink plenty of water. This helps to "flush out" toxins in the body. Also, look into possible food reactions you may have. A lot of people are senstive to wheat, dairy and other foods without even knowing it. Check out the book called "False Fat". He talks about how some foods cause reactions in people (i.e. swelling) and if you eliminate the food, you can decrease the swelling. Exercise: bouncing lightly on a mini-trampoline is excellent for the lymphatic system. Even if it's just a few minutes a day. Deep breathing is also another way to get the lymph moving in your body. Do internet searches on "Diaphramic breathing". THere are exercise programs called Oxycise or BodyFlex that use this breathing technique. I currently use both of those programs and think it has helped my leg become softer. I also massage my leg softly and keep them elevated at night when I can. I take my showers at night and go to sleep with my legs propped on pillows. As soon as I get up in the morning, I put on my compression stocking. These are some things that have helped me so far. I hope this helps someone out there! STAY POSITIVE! Let's help and support each other and together we will overcome this disease!

Hi I am 26 years old and by birth I am having LE in left leg.Upto 20 years it was ok and I didnt have to use any stockings but afterwards it started growing .Initially I had trouble to find right doctors and as you know most of the doctors dont have clue about LE it was really scary .In this case internet helped me lot to find right resources and then I went for physical therapy for couple of weeks .There are so many LE rehabilation centers in US and believe me most of them just want to make money .My suggestion is go for few weeks and once you know how to do massage and how to bandage try to do yourself .There are very few therapist who really know how to massage and how to do CDP and MLD .You can learn CDP and MLD on your own and if you are lucky you may get good therapist who will teach u how to do effective MLD .But its not big deal and after practice you will learn it . Anyway so after 2 months of therapy my leg sweeling reduced lot and I got confidence that Its not something which I cant handle .I started using stockings during day time , started bandaging leg 2-3 times in a week .I have reed sleeve so sometimes I bandage sometimes I use reed slive .I do all activities which normal person can do and I am living normal life .If I bandage contineous for 2-3 days my sweeling really goes down .Just take LE this way - its just excessive fluid which needs to drain from our body as unfortunatly some of our lymph nodes are blocked .So just try to make way for this exccesive fluid to drain in to proper chanels .Gentle massage on affected area is very effective for this . Just read Stephanie and Karens postings and thought to share my experience .Everyday I try to find information on LE and try to apply new things . My suggestion to you is dont get dipress and dont think its something which u cant handle .If you take proper care ,you can lead normal life and even though its hard sometimes but still try to do massage daily .Try not to take alcohol , stop smoking ,reduced salt and drink water as much as possible .Be positive and share your view to others .Mail me if you need any information

I agree with Stephanie and Karen. There should be more accounts of the treatment of lymphedema.
It's not that I mind the many stories about bad experiences with le treatment, because after all lymphedema is a disease that is discarded in many countries. It's hard to get good treatment.
But I invite all patients to let us know how they deal with lymphedema, so we might get some good ideas.
For this purpose I started a new page, especially about how I think lymphedema should be treated right here. I hope other patients will contribute their views too.
Yvon, owner of the lymphedema guestbook

I agree with Stephanie - most people write very negative stories that don't give much reassurance to us poor sufferers! I have had LE (Rt Leg)for 5-6 years and feel it hasn't got much worse during that time. The dedicated wearing of the compression stockings seems to be a must during all your waking hours. You do get used to them if you persevere. They're tight and hard to put on to start with but if you're doing it daily it just becomes another piece of underwear! Use the silk sockette that comes with the stocking and spread talcum or corn startch powder over the limb and it helps it slide on a bit easier. Elevation and self massage are really helpful too. Gentle upward strokes with the finger tips(towards the heart) starting at the top of the limb and working your way down and then up again and don't cross the middle line of your body if the LE is on one side only. For my leg I try to direct the flow to the lymph nodes under the arm on the same side. Get a therapist to show you how to bandage the limb and try to do this at night. When I do it I notice a real improvement for several days afterwards so if its done on a regular basis I'm sure it would really pay off (this is where I procrastinate a bit!) It's really nice to see an ankle or knee bone appear some days! I hope this advice will be of help to some of you and hey lets hear some more helpful tips - we're here to help each other not make us all depressed!

Hi_ i am 23 yrs old and have had lymphedema for about 14 years. I got le after a surgery i had on my upper left thigh to remove a lympangioma. I was stung by a wasp when i was 9 years old in my upper left thigh and the swelling never went down. I then went to Riley's to have the mass in my thigh biopsied and they tried to remove it with lyposuction because it was to big and they would have had to make to big of an incision to cut it out. I have had lymphedema ever since the surgery. I have been wearing a compression stocking ever since then. I just wanted to give hope to the parents of young children that have this. I have led a normal life. I played soccer, softball, diving, basketball, and volleyball all through highschool. I am married and have 2 beautiful children. I work full time at a local hospital in the cardiology department as a cardiac sonographer. Lymphedema has not slowed me down at all. I try to keep it elevated when I am not working or chasing around the kids, but I find that the compression stockings are the best. There is a place called AOI in Indy that specially fits them to my left leg, and they have been great. It seems that some of the postings that I have read on this comment page have had a negative outlook about LE. It is something that I could do without, but it is something that you can live with. God Bless all of you. If you have any questions or comments please feel free to email me.

Help I have had Le for 10 years in my right arm as the result from surgery and radiaton after being diagnosed with Breast Cancer. In the past year or two I have noticed swelling under my right breast area - mid area. At first I thought is was just mid life rolls but it became obvious to me my clothes didn't fit the same way and an obvious bulge was happening. So after discussing the situation with my doctor and asked if the Le from my arm could spread to my mid stomach area the response was yes!.After examination - she believed it had indeed spread. and wants me to hook up with a Physio thearapist again. Quesrion - HOw can this area be pumped? What are the dangers in this area? I have gone through the pumping bit and the sleeves/hand supports but saw little visual change and decided to move on with life accepting this as one of my battle scares and just accept a swollen arm/hand which did not prevent me from doing the things I like to do including sports. Anyone out there with this type of spread? Karen A

Hi everyone, I've posted here before, but this time is to tell you that I'm really sad. My lymphedema is getting worse and I can't do anything to stop it. Treatment is way too expensive for me and the only possibility is to travel to other countries. Shoes are really a problem now and It's difficult to walk with this ankle swollen...You know what's the saddest part? I can't play with my daughter anymore...

I was diag. with lymphedma or maybe even lipedema? I was told I need to wear compression stockings and use some kind of pump. I was told the pump cost $1250.00 and my insurance would pay half. Does anyone know where to get the pump cheaper? How about sucess with it?

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