Guestbook Number 2

Numbers 26 - 50

April 11 - August 19, 2000

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50. Marilyn mfjfcf@aol.com
Oswego , USA
August 19, 2000 at 05:53

I have had lymphedema for the past years as a result of breast cancer. I wasn't told anything about the possibility of this happening to me after the surgery. I had 2nd degree burns from radiation treatment and each thing that happened thereafter only made the lymphedema worse. I was biten by a spider that lead to extreme celluitis and blood poisoning. After that, my arm became quite hard. My current insurance company has finally agreed to pay for mld. I've been that that for close to a year now. It has helped the skin and to soften the inside of the arm. The summer months aren't kind to me though. I suffer with the swelling when it's warmer. I wear 5 bandages to work daily, have massage therapy once a week, and attend an exercise class 2 evenings a week with the arm bandaged. I am now waiting for the reid sleeve which I hope will reduce the size of the arm. If not, then I know that I had tried everything to this point and will have to endure this for the rest of my life. The breast cancer seemed somewhat easy compared to what this does to me physically and sometimes - mentally. My mother died from breast cancer at the age of 30 (I was 8 years old). I started having tumors removed when I was 24. I literally begged for a prophylatic double mastectomy several years ago but the doctors thought it was too severe - now they are doing it with quite a success rate on women that have a history of bc in their family. So, for them being able to tell me what to do with my body - I am the one who will get to suffer with lymphedema for the rest of this life. this angers me! I am thankful that I am alive but I want to make sure that any person who goes through surgery for any type of cancer or anything where the lymph nodes are removed knows about this condition.

49. Athena jaibaby@hotmail.com
Kent, Ohio , United States
August 4, 2000 at 06:53

This is so confusing to me. Last January (1999) my left ankle began to swell. From then on I was told everything from a sprained ankle to tumors. In July of that year I was told I had this condition. I had CAT scans, ultrasounds, bone scans and anything else you can name. The doctors told me they didn't know where it came from. They offered very little hope of there being anything to do. I feel completely in the dark. All I know is that my left leg but mostly ankle/foot are always swollen. I can't wear anything except for tennis shoes. It's so depressing. I can't explain to other people how I feel because all they see is swelling and not all the the mental drama that comes along with it. It's scary too because I have no idea what I am supposed to do. What I was told was that there is no cure. Can anyone help me understand this or at least lend an ear when it gets me down? I would greatly appreciate it.

48. Crystal Lexie_Q@webtv.net
Salem, Oh , USA
August 4, 2000 at 06:10

I would like to talk to some women with LE about the risks I might be taking if I choose to get pregnant in a couple years. I'd love to have kids, but I don't want to pass my LE to them, and I don't want to endanger my health any more. Please email me with any info!

47. Lucinda Tate pleatsplez@aol.com
Manhattan , USA
August 2, 2000 at 19:21

After learning my total hysterectomy due to Stage 111C Ovarian Cancer, I developed lymphedema in my legs (moreso in the right where my Oncologist removed over 40 lymph nodes) as well as what once was my flattest of flat stomach and even in my arms. When I went into the Hospital im January 1999, wore size2 jean. Now, I don't evem look at pants since my knees have enlarged also. Thank the LORD that we are ALIVE to make such complaints, yes?!!!!!! But after going to The BEST lymphedema Center here in the entire City, the bandages did not work. I used to weigh 100lbs. and now nearly 145........ I do hide it well but it exists and HURTS like the Dickens in my calves and feet. My shoes barely fit properly and leave an indentation almost immedietely as I slide them on. Socks, the same thing around the ankles. My dearest and most unbelieveable man of my life puts me to sleep by messaging my feet about 5 days a week. My Husband has gone through so so much with me which regareless to this particular web site is irrelevant but it is a BLESSING. Hey! Eme. We can share our own experiences which now must focus only on the POSITIVE!

46. Jessica Scotton thescottons@cwcom.net
Meadvale, nr Reigate , UK
August 1, 2000 at 20:14

I am 8 years old. My lymphoedema first showed when I had a fall 3 years ago.It is in my right leg. I wear a Jobst support stocking every day and my mum trained as a Vodder MLD therapist so my leg is stable. I have 1 penfriend in England who is my age & has primary lymphoedema too, but I would like to be able to talk to other children like me. I look forward to hearing from you.

45. Louis L Weaver WBudjoan@aol.com
Front Royal , Virginia
July 31, 2000 at 19:03

I have this condition due to cancer in the upper thigh. My leg has been amputated below the knee and what remains is hugh. Any thoughts on what I can do to help this situation?

44. Mary maryhelenwaite@hotmail.com
Calgary Alberta , Canada
July 28, 2000 at 10:00

Hi, I am 40 yr old female, with lymphedema of left leg for past 9 years. Swelling is from toes to buttocks, only on left side, have had all the tests which most doctors read as normal, except one who says 'delayed clearance on left side'. Left leg is 3 to 5 inches larger, depending on the day.

Unknown cause and cannot find a 'specialist' Doctor interested or knowledgeable in my area. My family doctor and myself are very frustrated. I recently got turned down from the only treatment program in the province of Alberta. They would not even accept me for assessment because I did not have cancer. Would like to hear from anyone who has attended a 'great' treatment hospital in United States.

Also like to hear from anyone who has advice on how to get the Alberta govnt to pay for treatment. Any advice on lymphedema or treatment welcome, thanks.

43. Rosalind Nicholas rosviv@yahoo.com
Hassocks , UK
July 2, 2000 at 15:49

Can anyone tell me more about the Reid Sleeve? What does it do? Is it good? Is it expensive? Worth it? Where could I get one if the answer is yes? Has anyone tried reflexology? I've had 2 sessions and my masseuse thought that my arm felt softer after the first session. Might be worth a try.

42. Andy Abbas sk84me@Juno.com
Hanford, California , United States
July 2, 2000 at 06:11

Hello, I am not used to doing something like this, but here goes. I have been struggling with lymphedema in my left leg for a few years now. The swelling comes and goes. But every once in awhile it explodes into a bright red and the fever and the disorientation take days and somethimes weeks to overcome. All the "good doctor will do will give me some ceflon to take the explosion away. And it seems different people have their opinions however knowledgeable. My question would be: Basically, is their a cure? What can I do to prevent the explosions? Where would be a truly helpful place or doctor to see for treatment? And what has helped your attitude or given you encouagement in dealing with this? Thanks for the help? Andy

41. Justin66 helter9873@aol.com
Buffalo , USA
July 1, 2000 at 21:39

Sometimes the best cure for something is music. If you ever get a chance, check out Powerman5000 and see if ya like em. Their newest album is Tonight the Stars Revolt. You can never go wrong. J66

40. Carole Touzalin Touz123@aol.com
Yonkers , United States of America
June 30, 2000 at 01:59

I have had lymphedema since the age of 16. It came on me suddenly and there seemed to be no reason for it at the time. This was back in the 1950's and MD's knew very little about this strange swelling in my left leg that was there for no known reason. I know more now but find it a very frustrating condition. A few weeks ago I had an attack with a high fever etc. I took antibiodics and the infection part cleared up. The skin on my leg blistered and peeled from the fever. It is healing slowly but there is a constant discharge of clear fluid as the area gets new skin. Do you have any advice for care during this healing process. Any help would be most appreciated. Thank you Carole Touzalin

39. an francx an.francx@pandora.be
Leuven , België
June 24, 2000 at 13:59

I was born with le in my left leg. My parents feel guilty. So they sent me almost every hollyday to the hospital to get more test. I had them all.
When I was 14 years they sent me to the hospital 3 hours a day: one hour before school, one hour during lunch and one hour after school. I had jobst stockings, manual massage and massage in the jobst machine, medicaments etc...
When I left home, I was 18. I stopt everything. I wouldn't life in function of my leg. I had at home a massage machine I slept with every night. The man who sells the machine said to me, that I had to put it as hard als I could stand. And I could stand a lot, so I put it on the highest position. After 4 years I saw an old friend who was now physiotherapist, starting to specialise in lymphe oedeem. He said to me that my therapy, putting the massage machine in the highest position, wasn't good. So I stopped with everything.
My doctor said to me if I don't use any therapy for my leg, my leg would start to become very hard and the chance that they must amputated it when I'm 50 years old, would be very high. I could live with that, I was only 25 and 50 was far away. Who knows they found new therapies the next 20 years.
Now I'm 43, and I still have my leg, and it doesn't bother me at all. I can do whatever I want. Sometimes it swells a lot so I get a bit worry. It swells more when it is hot.
Last month I visited my sister, who was travelling with her family for a year in Thailand. It was very hot so my leg was swollen. I like her very much, but 3 years ago she started with Reiki and want to treat me the whole time. I don't believe in reiki. When I was in Thailand she treated me also. First I said nothing. Then I asked her if she know something about lymphe massage. She said she didn't. I explain her that the therapist first opens the lymphe node in the abdomen, and then starts from the feeth to the abdomen, and then close the lymphe node in the abdomen. So she did the reiki that way. She treated me 5 days during my stay.
Two weeks after I went home, I feel some pain in my left knee. I look to it and I saw my left leg was almost as small as my right leg and it didn't feel hard anymore. I think the pain came because my left knee wasn't swollen for the first time in years and so the muscles weren't stong enough to take it over. Now we are again three weeks later and I still don't believe it. I can't explain it, but my left leg is still soft an now it started step by step swelling again. Even when its for only one month, it feels good and perhaps I can hold my leg longer.

38. Blossom Blossom_01@hotmail.com
Montreal , canada
June 11, 2000 at 03:41

I had a friend who had this disease. I, lost her last year. It still feels like there is an empty hole inside of me...I'm glad I know I'm not the only one who had to go through this. I miss her so much. This was for you Ann. Mum loves you ever so much. Ann: 1992-2000

37. Traci teddy@mail.westco.net
Morgantown , USA
June 10, 2000 at 16:53

I have primary lymphedema in my right leg. My mother first noticed the swelling when I first began to walk. Of course, for a long time the doctors had no idea what was wrong. I was just instructed to keep it elevated as much as possible, and wrap it with an ace bandage at night. I wasn't until I was in junior high school, that a vascular doctor in town diagnosed it as lymphedema, and he prescribed Jobst comp. stockings. My leg wasn't too bad then, so I could get by with wearing it most days, and leaving it off when I wore shorts or dresses out. Gradually it got worse though, and by college, the days I left the stocking off, I had much more swelling. Now I really pay for it if I even leave it off for special occasions out. Luckily, if I am just at home, and am not on it too much, I can usually leave the stocking off for a while. I now wrap it almost every night with two-way stretch compression bandages. I also am now under the care of an infection specialist, because in high school, I started getting cellulitis infections in the lymphedema leg. Then, I only got them about two times a year, but when I started work, after college, I started getting them about once a month. Each time I got one, I would be on amphicillin for a week to get rid of it. Finally, I got one so bad that I had to go to the emergency room because I got weak, chills, my pulse was racing, and I was out of it. I had to have an iv of Keflex for several days off and on. When I was admitted to the hospital, my pulse was 190, and my temperature was 103F! This is the only time I had ever run a temperature with anything--I don't even with the flu, so I knew this was bad. This was when I was referred to an infection specilist in town (not a lymphedema specialist--there are not any close). He has had me on a maintenence dose of Keflex (one 500 mg a day) to prevent the infections. It has worked pretty well. Now I only get one or two a year, and they are not usually bad, because I am already on the maintenence dose and can more quickly recognize when to up the dose in infection time. My insurance company will not pay for me to go to a lymphedema clinic for MLD and treatment even if I pay the travel expences, so I am very frustrated with that. I would also like to try the Reed Sleeve at night on my leg instead of bandaging, but they will not pay for that either. If anyone uses that and likes it, please let me know because I would consider paying for that out of my pocket since it wouldn't be as much as treatment. Also, I know use the Juzo hostess style stockings, and find them much more comfortable than the Jobst, and much less noticable.

36. Joy koolloosjoy@hotmail.com
Minneapolis , USA
June 4, 2000 at 04:53

I got lymphedema in both legs following cervical cancer and radiation treatment 7 years ago. I have had the lymphedema for approximately 5-6 years and at first had no idea what on earth it was. What really frustrated me orginally was that I was doing aerobics (high impact) daily as well as running 2-3 miles everyother day and was feeling pain in my right groin area. I assumed it was pain from a strained muscle, but never did it cross my mind that it could be causing more damage which could lead to this. I cant stand wearing stockings (they hurt and dig in). They then cause sores which then lead to cellulitis. I hate to wear the bandages because my legs instantly fall asleep. I also cant stand walking out in public and having people stare any longer. My legs used to be so shapely and nice and now they are HUGE. I have named my larger leg BERTHA (No offense to anyone named this, but if I wanted someone or something to be hanging around with me I needed a name I could swear at or talk about when referring to my leg). So now if I go somewhere and I cant quite climb the bleachers at a game or cant get do other things I can blame BERTHA. When my Mom calls she even asks me how BERTHA is doing.

I know all of that sounded weird but it was one way to deal with it.

I hate not being able to wear shorts, dresses or bathing suits. I hate the fact that I have a class reunion coming up and I dont even want to go because of my appearance. I cant stand the fact that I have avoided going to weddings because of it. I guess one positive thing that has developed due to lymphedema is my ability to sew. I am seldom able to find any pants that fit so I sew them myself.

I would love to hear from other people with lymphedema. there are days that a little support would be great from others who understand.

I am so glad this website is here. Hurray!!!

35. Yvonne Janssen yvonne@weezenhof.nl.eu.org
Nijmegen , The Netherlands
June 2, 2000 at 12:05

Hello,
I've been trying to change the drab flesh color of my arm sleeve into a more sophisticated black.
For this I tried Dylon Cold Fix, but now it looks as if I put it in a pool of mud.
Is there anyone who can tell how to get a beautiful color to my sleeve?
Thanks a bunch,
Yvon.

34. Ylva Tribastone Vylva@cs.com
Webster Nyw York , USA
May 29, 2000 at 20:28

Hello, My Lymphedema, in my right leg started for about 4 month ago. So you I am new at this. Operation 14 years ago! I like to know if any one "out there" been treated with the drug Benzo-pyrone. Greatful for any response, Ylva Tribastone

33. Rosalind Nicholas rosviv@yahoo.com
Hassocks , UK
May 28, 2000 at 16:54

It was great to find this site. I understand the feeling of isolation that some of you feel. I go to concerts or theatre and think 'I bet I am the only person here with this problem.' But then I probably see someone in a wheelchair and realise it could be worse. I agree that the effects of the condition are totally underestimated by doctors who don't understand the severe psychological effects it can have. I was devastated when I realised that I had this for life - found it much harder to cope with than the mastectomy, shocking though that was. I go through cycles of paranoia, thinking that everyone is looking at my arm,to feelings of 'sod it': i'm going to brazen it out. The latter is much better if you can get there! One lady I heard of even embroidered red roses along the end of her handpiece, in the same colour as her bright red nail varnish - that's style! Reading other's accounts, especially in the Netherlands, I realise how lucky I am. I visit a lympho. clinic every few months at a nearby hospice (not a nice place to go but worth it,)get sleeves supplied free plus bandaging if I want it, have a masseur trained in the Vodder technnique whom I try to see every week if possible. I do the exercises and self-massage unfailingly every morning and night, do exercise classes and swim when I can. I find that I can now forget about it more (I'm lucky in that I have no pain or aches usually). The worst time is when buying summer clothes or when, as now, fashion decrees slim sleeves. I generally find exercise helpful - I wear 2 sleeves if I do classes. I found that bandaging seemed to do more harm than good in the long run. My arm looked wonderful for a short time afterwards (almost worth everything just to see that!) but my fingers usually swelled up a bit and, within a short time, I found that my arm seemed worse than before for a while. I very much welcome this site and would love any advice on what anyone else finds helpful or harmful.

32. Jean Friendly jfriendly@home.com
San Francisco , USA
May 25, 2000 at 09:26

I have had a swollen left foot since my son was born 3 years ago. I have tried a variety of treatments but like the rest of you find the treatsments invariably worse than the symptoms. Starting one week ago I began acupucture treatments and I have started to seem some positive results. Who knows if it's a placebo effect or an actual change - I will however keep you posted if I find that my foot and lower leg continue to get better.

31. valerie Hanlon vhanlon@eircom.net
Co. Wicklow , Ireland
May 24, 2000 at 11:05

My 55 year old Aunt has suffered with lymphedema since birth. She has never attended school, but instead was taught by my grandmother, and is as literate as anyone who attended school all their lives. She is a dressmaker and has done this since her teens. She has always used a compression pump for her lymphedema. In Late November of last year she broke a bone in her affected left arm. Now nearly six months later the bone is still broken. Doctors here have never seen a case like hers before and therefore do not know how to treat it. She had keyhole surgery in January to try to join the bone but this was unsuccessful. Since she broke the bone she has been in a lot of pain and her arm is increasing in size rapidly. Before the break it was very large measuring approximately 26 inches and very heavy, but now it has grown much bigger and weighs about two stone. I would be very interested to hear from anyone suffering from lymphedema who ever broke a bone. I think the break was caused due to the weight of the arm. She is very depressed at the moment as you could expect, and I am trying to find any help I can for her. It would be great to find someone else who had experienced a similar situation.

30. yvonne janssen yvonne@weezenhof.nl.eu.org
nijmegen , the netherlands
May 19, 2000 at 14:42

ANSWER TO CATHARINE (nr. 63):

Hello Catharine, I understand how you feel about le. I have the same feelings about it. I must confess I sometimes think: why not just let people die when you only put them off with something incurable? But then I think: at least I can still enjoy drinking coffee in the morning and watchin movies and there are a lot of other things I can still enjoy.

Unfortunately cancer uptill now can only be cured in mideaval ways: treatment either kills the patient (radiation therapy or poison), or mutilates him/her for the rest of his life. In our case our mutilation was the removal of lymph nodes (apart from the removal of breasts). Unfortunately doctors do not think lymphedema is interesting at all and they cannot be bothered with it. They think we should be thankful to them for saving our lives and instead of this we are moaning and wailing because we're stuck with puffiness and are ugly. It's so unthankful. No wonder they hate us. So we are left to ourselves to find a cure for it (and it isn't there) and try to adapt to the changed circumstances of our lifes.

I have an implant. Maybe you could have them too. The outward protheses are too heavy. They hang onto the straps of your bra and obstruct the flow of lymph fluid going through your shoulders. They also look more natural when wearing clothes.

I think I have grade II lymphedema. I am having the hardest time caring for myself consistently. I HATE the sleeves. In fact, I'm pretty sure that the sleeve and glove make my arm (and especially my hand) worse, not better. Wrapping seems to do the best job, but it's so frustrating... I wrap my arm, leave it in the wrap for twelve hours, take the wrap off so I can take a shower, and *poof* within 15 minutes my hand is swollen again.

My arm was like this too, before I found a good therapist. It went thicker and then it slimmed down a bit (never enough). I the beginning I measured it twice a day. The skin felt hot. I think you should have a intensive therapy (manual lymphdrainage) to slim down the arm. Then have a sleeve made especially for you. Look at the links page of the guestbook to see if there is someone near you or go to the site of the NLN (also on the links page). They can help you to find a good therapist near to you. Also go and see the directions of how to live with le on the NLN site, if you don't know that yet. Be prepared for a shock 'cause there are a lot of life rules you must attend to (good grief indeed). I hope I helped you with this. :)

Take care

Yvon.

29. Michael Fairbanks Michaelfairbanks@hotmail.com
Encinitas, California , USA
May 19, 2000 at 06:47

My mother just had radiation about a month and a half ago. Her Lymphedema is really bad in her left arm (she had that breast removed), and the LE is really bad in her NECK. The arm is painful enough, but she can barely breath, and when she lies down for too long the neck swells even more. When I feel her neck I am amazed by how tight it is. When I push on her skin (gently, of course), there is no "give." I am afraid it will swell up and strangle her. I just read the entire message board, and not one other person had it in the neck. I hope her thorasic duct heals so her neck can drain. She can handle the arm, but the NECK? That is too much burden to carry. I question my faith too now. Jesus suffered for a few days, but all of you are suffering for life. My mom is in as much agony as he was, but she sees no relief in sight. How can this be justified. She lived a good, Christian life devoted to serving others. I am convinced that God is not going to do anything to help the suffering people. He just lets it all happen. He needs to show mercy.

28. Catharine Honeyman cathony@yahoo.com
Midway Island , U.S.A.
May 19, 2000 at 00:14

LYMPHEDEMA SUCKS!!! I was diagnosed wih BC last year, at the age of 36. Double mastectomy, modified radical on the left side. I didn't have any lymphedema symptoms until I started wearing weighted breast prostheses... ah, vanity! I think I have grade II lymphedema. I am having the hardest time caring for myself consistently. I HATE the sleeves. In fact, I'm pretty sure that the sleeve and glove make my arm (and especially my hand) worse, not better. Wrapping seems to do the best job, but it's so frustrating... I wrap my arm, leave it in the wrap for twelve hours, take the wrap off so I can take a shower, and *poof* within 15 minutes my hand is swollen again.

I wish I knew that my arm will be this size for the rest of my life and will never get any worse *or* better. I could accept that. The constant up and down is killing me. I switched to non-weighted prostheses. They don't look nearly as good as the weighted ones, and I think they're not working yet.

I am lucky; I am not in much pain. My hand feels tight when it gets swollen, and I have very mild pain down the back of my upper arm, but that's it.

I went shopping for clothes for the first time since my surgery last week. I was nearly suicidal when I finished. If the left sleeve wasn't too tight, the neckline looked horrible and my prostheses showed. Sometimes I am sacriligious and wish the treatment hadn't worked... if I were dead, I wouldn't be stressing about whether or not my arm will fit into a party dress.

I don't mean to moan, but I just feel sorry for myself sometimes.

And aloha to you in the Netherlands! I am Dutch-American (my maiden name was Shootman) and have always wanted to visit "the old country."

27. Annelies koulilbbind@hetnet.nl
Bergen op Zoom , Netherlands
May 9, 2000 at 14:49

Hai, Yvonne. I have primairy lyphedema on both legs. From the age of 16 ( 41 now)I sleep in a bed with my feet in a higher position. During summer the swelling is worse and my legs ache sometimes. I don't wear stockings, because I hate to weare them and the swelling isn't becoming worse during the years. I had a shunt-operation here in Holland, but that didn't help. Than I had massage therapy, that didn't help either. So now I am looking for more information everywhere about this subject. Yvonne, I can't give you any information about good fitting stockings, I'm sorry.

26. diane loislane@hills.net
Rapid City, SD , usa
April 11, 2000 at 03:51

my mother suffers from a number of medical ailments... diabetes, chronic heart disease, thyroid problems, arthritis and most recently they thought she had a tumor in her lungs when she was hospitalized with pneumonia. A biopsy was done on thelymph nodes, which were swollen and they said all she had was an infection inthe lymph nodes. Meanwhile, she suffers from serious problems of her legs swelling to the point where she cant bend her knees and the pain is unbearable. Shes been hsopitalized for nearly a month and is going homee, but I cant seem to get doctors to think there's more of a problem other than arthritis in her knee and they can't explain the swollen lymph nodes inthe llung area. Is she likely a lymphedema candidate? Is there someone in the Rochester NY area you could recommend she see?

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