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This Guestbook started on January 15, 2000
Last contribution on March 31, 2008 at 17:05 GMT +1

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543. Tina Budde
Lockport
March 29, 2008 at 05:37

I just wanted to post a note here, I see so many questions about lymphedema and it seems people feel so alone. There is hope! Patient Advocates are hard at work getting lymphedema noticed, pushing for legislation, pushing for insurance coverage, educating medical professionals, and being your voice. We need to be heard.

We have ELymphNotes.com which is a lymphedema online magazine, the only one on lymphedema. We have International support groups, chatrooms, websites, and we are not alone. There are so many people with lymphedema.

I'm the content editor for ELymphNotes, feel free to visit our magazine. Also feel free to visit my website, Lymphland.com, and lastly feel free to join an online support group. You will meet so many wonderful people.

Lymphland

Sincerely,


Tina Budde

542. Lenny N
Jakarta
March 10, 2008 at 05:06

Hi,
My fiance 35 years old has a lymphedema on his left leg about 10 years ago. He can't bend his knee because of swallon at the back of his knee. He have to drag his leg to walk because of the weight of the leg. He doesn't have any stable financial. Do you think he can get the treatment or insurance? what should he do to feel a little bit better for his leg.

thank you very much for your help.

539. tanya
new york
February 13, 2008 at 18:18

I had a breast operation 25 years ago: lumpectomy
I got some lymphodoema from it but just found out I might need another operation on the same side.
I am very concerned about the lymphodoema reaction if I need this operation. First they will do a biopsy and hopefully it's all ok . Does any of you had a second operation with a excisting condition alreadey. Thank you for your comments.
best regards
tanya

538. Joyce
Goldsboro
August 22, 2007 at 22:26

First let me tell you how mine began.
When I was 21 someone pointed out to me how my feet were swollen - I had just returned from a trip where I had done a lot of walking so I supposed that was the cause. That was the beginning of years of swelling - off and on. To make a long story short, I went to several different doctors over a 20 year period. They all said things like "some people's legs and feet just swell", "don't wear girdles or anything constricting" etc. and all prescribed fluid pills. I actually had one to say that people with my problem (what ever it was) just need to remain in a reclining position the rest of their lives". All said to keep my feet elevated above my head as much as possible. It finally got bad enough that I would have out breaks where I would have large red, hot splotches on my legs (some times with little water blisters in them) and my legs would really hurt. I would not be able to get my shoes on and it would be hard for me to walk. I had to hold on to things and drag my feet to get around. Several times I went to emergency rooms the problem was so bad as far as hurting and walking. It was always during times that required an enormous amount of time on my feet. I finally found a doctor that knew what it was (and that was the first time I had ever heard the word lymphedema). I ended up buying a compression machine (about $4000) - the machine did a great job of taking my legs down. I was supposed to be on it 4 hours a day, but that was just impossible. After a while, it seemed the compression stockings kept my legs down OK, but I found that the only kind that would work for me were the Sigvaris brand. NOW, I have not been on my machine for about 8 years and my legs have started going back up - the hose are not holding them. My machine needs some minor repair, but I have not found anyone around my area that can work on it. I am also searching for a doctor (as I have moved to a different state). If any one knows of a good doctor for this problem in eastern North Carolina area, please let me know. I need to know whether or not to go back on my machine, what settings to put it on, if my compression needs to be increased on my hose, etc. My legs are not the type that swell to twice (or more) the normal size, but they do swell enough that people ask me what's wrong. It causes me to not be able to be up on my feet for very long. I know I should be thankful to the Lord that it is not worse than it is, but I do need help. Along with my fibromyalgia and heel spurs, it sure makes life a little hard as far as getting around. Thanks for any help or suggustions anyone can give me.
Joyce

537. Jane Richardson
Lamoni
July 1, 2007 at 15:27

I have had cellulitis for years now i have lymphedema in both legs feet and stomach. I am very obese and confined to house i was allready wheel chair user because of arthritis. i am 61 years old and not receiving treatment for this as doctors in this rural area don't know much about it. would like to hear from other people with this.7/1/07

536. Surinder Bhambra
London
May 21, 2007 at 00:43

Hi to you all. I am a Father of a 2 year old Son, who was born with Lymphoedema in his right arm. At the moment he has compression garments and they do not seem to work. I have been using bandaging and velcro straps to aid compression, which seems to soften his arm so that me and my Wife can massage his arm to aid drainage. Our story is kind of complicated as we have been told that there is nothing that doctors can do, other than compression garments, because of his age. My family is of Indian/Punjabi origin. We are not blood related and there is no history of this condition in either of our families. Our son starts nursery in September and he is aware of his condition. We placed him in nursery classes early so that he could adjust and become socially accepted in school. It is hard a parent as I have noticed that people stare and talk as we stroll though roads and parks. Can anyone suggest any exercises or treatments for a young child? I would really appreciate your feedback/suggestions.

535. Emily
Richmond
April 24, 2007 at 04:10

I am 18, diagnosed with primary lymphedema about 5 years ago. I do not have it very severely, I am active and am of a normal weight. I was doing some research about inherited lymphedema, (from whom we're still not sure who I inherited it from) and I read about the whole 50% chance my kids (when I decide to have them, years from now!!) will have lymphedema, if not their children. My question is to the mothers who have lymphedema, was it directly passed onto you/your child? I had suspected this statistic, but have to admit was really disheartened to read it....

any response would be sooo very much appreciated!!
-Emily

534. Helen
Edmonton
April 11, 2007 at 03:39

Hi Carol and Marie (517 and 518): Sorry for not connecting again to find your comments. Don't know what you disagree with, about what to eat or the fact that lymph drainage is at the neck. Because I had lymphedema long before any medical profession started looking into it, I tried to help myself as the doctors said they knew little to nothing about this area of medicine. Remember I am talking about 'primary' lymphedema which means it developed on its own; that is, no cancerous aftermath. I learned that as soon as I ate certain foods, my throat felt full. We learned way back when that the lymph glands which include tonsils etc. are there to prevent bacteria entering and going down the throat. I didn't go back to research where I got the written info about drainage, but the primary lymphedema assessment I had at the Cross Cancer Institute here in Edmonton told me that lymph drainage from most of the body returns to the left side of the neck through nodes and ducts and from the neck area toxins are discarded. Toxins from the right arm and right chest area return to right side of neck for drainage. So, pain and swelling from lymph drainage at its terminus is mostly at the base of the left side of the neck. Maybe I'm all wrong but this is what I've been told. Thanks for comments. Helen

533. cici
April 3, 2007 at 15:53

Hello,
I have primary lymphoedema in both arms and right leg, and a little on the right side of my face. I started MLD therapy six years ago. It was quite by accident. I told my Immunologist that I was not putting up with it anymore. He referred me to the Physiotherapy dept who, luckily, recommended I go for MLD therapy. I had to go through the intensive programme for 6 weeks, and at the end, I lost 2 litres of fluid from both sides. As I have religiously followed my treatment, I have also gone to the Foeldi clinic two years in a row for 3 weeks each time. I hope to go again this year. They are fantastic there.
I pay for all my therapy privately, which costs me personally €3000 a year. Included in this is the cost for garments, which are €306 a pair for my arms. I also have a light compression stocking for my leg.
My private health insurance does not recognise lymphoedema as a condition, nor provide any assistance in treatment. The Irish health service has asked me on several occassions why I should receive treatment for a condition which does not prevent me from walking, talking or working.
The attitude I have experienced is absolutely shocking. It is only through my own perserverance that I have gotten this far at all, and I would urge others to persist. Try to get as much MLD treatment as possible/affordable. Make sure you get new garments regularly - usually every 6 months for leg garments. If you can at all, and live in the EU, see if you can get yourself an E112 and go for intense treatment in the Vodder or Foeldi clinics, for a minimum of 3 weeks! Its worth it! Exercise regularly, at least 30 minutes a day if you are mobile enough. Eat good food, low salt and avoid over-processed foods.
My lymphoedema is far from "managed", which is my ultimate goal but it is certainly in a much better place than it has previously been. I have set-backs and challenges like everyone else. In a way, having to organise everything and pay for it myself has really given me a sense of investing in my own health, which makes it worth even more :)))
I hope that this post may help someone out there in their efforts with lymphoedema. Please feel free to contact me if you'd like.
Take care of yourselves!

532. teresa
bakersfield
March 9, 2007 at 11:42

I am an above the knee amputee who was just told ahe will never walk again due to them finding I have Lymphedema. I have no idea what it is other than one gain a lot of weight. mostly water. I do want to walk I do want to know about this thing they say I have. Please if any one can help me I would be very thankful.

531. Carolyn
McHenry
March 4, 2007 at 17:48

I am looking for help and/or suggestions for my husband. Gary was operated on 9 months again because of thyroid cancer. It had spread outside the thyroid into his neck and lymph nodes. A large amount of nodes in his neck were removed. After radiation treatment, severe lymphedema set in. Like many of you, his surgeon and oncologist did not recognize the symptoms and it got totally out of control. We tried to point out that his problem started right after radiation. He was written off as a mental case and told his problem was psychosomatic. I tried to suggest a problem with his lymphatic system but they would not listen. After months of looking for answers,we have been given some medical assistance thru Cancer Treatment Centers of America. Pain management was finally addressed and therapy was started. We also learned that radiation indeed will trigger lymphedema. Manual Lymphatic Drainage has helped but he has had set backs and hospitalizations due to cellulitis and infection. There is information out there on lymphedema in legs and arms. I can not find much on neck, face, and upper chest areas. The swelling and pain are wearing him down, not to mention the depression that has now set in. He is a strong person but sees no hope at this point. Does anyone have any experience or knowledge about the light beam generator? Insurance will not pay for this but I would have him try it if there is a chance it could help. Our family doctor has been great trying to help, but admits he does not know much in the area of lymphedema. How does one go about finding a specialist near home? Comprehension garments were suggested but again, finding something for the upper chest and neck areas has been a challenge and battle with insurance. I have finally had success and a nightime and daytime vest are being made for him and should be here in a week to 10 days. Thanks for any ideas you may have. You are all in my prayers as you continue with your individual battles.

530. Richard Miller
Staunton, virginia
March 1, 2007 at 23:34

I have found a way to reduce and perhaps eliminate lymphedema. I have lymphedema in my lower left leg. My leg is the size of an elephant's leg. I learned from my therapist that the fluid is made up of mostly proteins that the lymph system cannot eliminate. There are enzymes that can dissolve these proteins, called "proteolytic enzymes." I have been taking Bromelain, derived from pineapples, every day for one month now. I am seeing slow, but sure progress in the reduction of my lymphedema. I take one 500 mg pill before I go to bed. I like to take the pill lying down, because that is when the veinous return is greater. After the enzymes dissolve the proteins, the residue leaves by way of the kidneys, which means I have noticed an increase in urination.

Other supplements and foods I have found helpful include dandelion pills, which removes excess fluid, B-complex, which helps the bromelain breakdown the proteins, drinking lots of water, and eating oatmeal every day, to help flush out my system. I also eat a banana every day, for the potssium.

But to reiterate, the Bromelain has proved to be the most effective supplement.
I buy it at the General Nutrition Center. One bottle holds 60 tablets. I have not noticed any adverse side-effects when taking it. I suggest you try it yourself, and see if it works for you.

529. EKESON NWATOGO
LOME
February 21, 2007 at 11:24

Hi everyone
Irene, i have heard of heard of the french surgeon was reading about him actually removing nodes from the abdominal area Sounds great that the lady that had the mastectomy has no swelling in the arm now I just wonder though Surely node removal and damage to the lymphatic system causes secondary lymph then what is going to happen to the part of her body the nodes have been removed from?

528. William Clemons
Bonners Ferry ID
February 21, 2007 at 04:10

I have inherited lymphadema and also clufe plate and the eyelash problem. I got my clufe plate fixed when Iwas four years old. I had sevarl eyelash operation to fix that and and still have some. But my lymhadema there is not much that can be done for that. But I have helped mine alot. I do not eat salt. Not a lot of suger,I limit my actives. I sit with my feet up as much as I can. When Iwas young for the ten or so I was on the go and my legs both swelled I didn't like it so I decided to change my lifestyle. And now only my left leg swells. I do have bad news I passed on to two of four of my kids.

527. marymac
Morrisburg, Ontario, Cana
January 27, 2007 at 16:28

Greetings
I have been diagnosed with Lymphadema of my right arm. I had bilateral mastectomires Sept. 2006.Cancer of the right breast with 15 lymph nodes removed. I did not require any treatment as the cancer was stage 1.
About 3 weks ago I noticed swelling from above my wrist to my elbow.I had a bad fall just before Chrismas My Family physician diagnosed it as inflammation in my elbow. I felt it was Lymphadema. This week when I vistited him again he agreed with my diagnosis. Yesterday was my initial visit with a therapist. My concern is that I'm going to Africa for 3-6 months and I'm concerned with travelling, heat in that country etc.I plan on getting a sleeve and glove. Are there any tips, suggestions that would help overcome my anziety about travel?

526. Beth
South Milwaukee
November 7, 2006 at 07:11

4 1/2 Years ago I had Gastric By-pass surgery. 3 Months after the surgery my Right leg got very swollen and hard as a rock.
I called my Dr and they had me come in. After they examined me, they said that I had Venous Insufficiency. I was given a prescription for Pressure Stockings. I have been wearing them ever since.
Then back in August I got a tiny cut on the inner right leg right above the ankle. It was not healing at all. At the end of September my leg was real swollen and hot to the touch.
I went to the ER and was given a ultra sound to see if I had a blood clot. They said it was an infection, and to see my Dr within the week.
I then saw him and he gave me different Antibiotics and had me off work and on bed rest for 7 days.
I then went back to work after 4 days. My leg was very swollen and painful. I went back to my Dr and he then put me in the hospital for IV Therapy for 5 days. Then at home for a 10 day course of antibotics.
I was told I could return to work with restrictions of 1 hour sitting w/5 min walk the 1 hour stand w/ 5 min walk and with a referal to a vein dr.
He did a ultrasound on the surface vein and was told there was nothing wrong with them and that I have Lymphedema. I now have to see another Dr and see what they will tell me to do the vein. Dr said the worse thing that I could do is sit.
My job is an 8 hour a day of sitting I do follow up for a Medical clinic. My prim dr states that he still wants me to do his recommandations for the job, until I see the specialist and see what she will have to say. My employer wont let me back until I see this Dr about the Lymphedema.
Is it true that sitting for long period of time is bad when you have this condition?
Also I am in so much pain in my right leg. Is there a chance that this Dr will tell me that I should not go back to work in my current position, or that I may be home until the venous ulcer has gone?
I right now can not wear my pressure stockings due to the ulcer because when I do, the ulcer weeps and the scabs stick to the stocking and the scab comes off and the ulcer bleeds and I am in even more pain then I was before. Does anyone have any advice about my working situation? And can this lead to being permanently off on disability since my condition has gone untreated for about 4 years. All advise would be greatly appreciated.

Thanks
Beth

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