Guestbook Number 3

Numbers 52 - 75

April 11, 2000 - January 14, 2001

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For your info., there are trials being done in the UK by a leading hospital, The Royal Marsden, into a possible treatment for Le. When they were giving treatment to someone for another condition, they discovered that it seemed to reduce her limb with le. They are trialing it on people who have le as a result of surgery and radiotherapy. It involves putting the patient in a decompression chamber and having them inhale pure oxygen. The trials are happening about now: I couldn't take part as I had had treatment within the last 5 years. It may not come to anything of course,but I'll let you know if I hear anything further. At least someone's _interested_!

74. Angela and Angela athea17@hotmail.com
sandwich , us
January 8, 2001 at 16:08

We need some information on Lymphedema....can you send some to the e-mail address above? thank you.-angela And angela

73. Lynda dick@mwci.net
Keokuk , united States
January 2, 2001 at 01:45

I think I have lymphedema, no I know I do. Doctors are not helping very much. I was diagnosed with breast cancer May of 1999. I had a lumpectomy followed by chem and radiation. My arm has hurt ever since. I have gone to the pain clinic, with very little results. Help me please, don't know where to turn. My surgeons response was "I wouldn't be able to do the things I use to do." Why didn't he tell me this before he operated. My family doctor is trying. The doctors at pain clinic said I was depressed I told them I probably was, this arm is wearing me out and is a constant reminder of my cancer. Why are doctors so ignorant on this subject? Thank you for your time.

72. Dr.Leo Nieuborg MD.PhD Nieuborg@cs.com
Maastricht , Netherlands
December 30, 2000 at 18:33

Fantastisch initiatief. Als ik kan helpen met vragen dan hoor ik het wel.

Goed 2001!!!!!!!!!!!!!!

Leo

71. Gloria Lane Earthparent@CS.COM
Columbus oh , usa
December 30, 2000 at 00:19

Hi, My name is Gloria my son who is 21 months has lymphdema. He was born with swelling in both legs. Caleb also has some swelling in both arms and one side of his face. We had an lymphocintrigphy on his legs. It is really hard to wrap a toddler. He screams and cries a lot. We have seen more doctors than I can count. His left side is huge. If any one would like to write me please do.Gloria

70. Preston George weeb2@hotmail.com
Holtville , United States
December 21, 2000 at 08:01

I heard that Lymphnodia is a disease of the uterus, is that true? i'm not trying to be ignorant, I am just confused.

69. Sandra Yahn yahns@planetc.com
Newport, TN , USA
November 9, 2000 at 07:38

Hello everyone, I am glad to have happened upon this site. Reading about others with the condition makes me feel not so alone. I have LE in my left leg and recently diagnosed. There are some indications that it is also in my right leg. I have a physical therapist who has me do some exercises and massage. The massage feels good while administered but not so helpful short thereafter. Has anyone used the CircAid? We are looking into this as a possibility for the left leg and hose for the right leg. You can find info. at circaid.com along with pictures. I have no idea if this will work or not but am willing to give it a try. I am in a flare up and have been for several months now in the left leg. Doctor put me on Keflex for a month but did nothing. My leg also pains, aches etc. so I can sympathize with others with this condition. I sleep with a pillow under my legs a night and it helps some. My feet are so swollen I cannot wear anything but one pair of sandals. I have no idea what I will do when winter comes and I need to go the doctors. Even the widest of special order women's shoes will not fit on my left foot and is questionable on the right. The swelling really has put a hamper on any form of life at all. I am not comfortable standing or sitting. Anyone wishing to email me is welcome to do so. Thanks for being here.

68. Sally Kennedy sakmrk@flash.net
San Diego , U.S.A.
November 7, 2000 at 23:10

I am a 46 year old female who 7 years ago had a radical hysterectomy involving removal of pelvic lymph nodes. Last March, one week before my first half marathon, I noticed some swelling in my left ankle. Following the race, I continued running and noticed only that on Fridays (my day off from working out) my left leg would swell. My doctor had no idea what it was. Finally, in July, after a few long plane rides, it really started to swell and my husband, through the internet, figured out it must be lymphedema. I met with a lympedema physical therapist who gave me some exercises, fitting me for a stocking and gave me a list of precautions. For a few weeks I quit working out and it seemed to be getting worse and worse (bigger and more achey). I started swimming, which felt good but didn't seem to help with the swelling. Finally, I started running again. At first it was painful, but after a few miles it started to feel better. Now I'm back to running around 6 miles a few times a week and have started bicycling (spin classes) and Masters swim twice a week. In fact, I did my first (sprint) triathlon last month. I wear my compression stocking all the time (except at night) and my leg seems to stay fairly consistently 1-2 inches larger in circumference. I recently tried two weeks of daily MLD combined with multilayered bandaging, but the bandages kept falling off and it all left me about where I started. Just seems like exercising (esp. running and bike) is keeping me on top of this (both physically and mentally!). Would be very interested in hearing from others who have tried to keep up with an exercise program through all this. (Have also tried yoga and pilates, which, like swimming, feel good, but don't seem to have much impact on the swelling.) Thanks for listening.

67. Micki bixby@telusplanet.net
Calgary, Alberta , Canada
November 6, 2000 at 22:57

I have lived my whole life (33 years) with a deformed leg. I have had times when I was growing up, that I felt sorry for myself, but really, who is created perfect? I live my life as any normal person would. I don't wear shorts or skirts, and my jeans fit tight around one leg, but I am able to walk and run. I look at it this way. My leg keeps me humble and reminds me that I cannot be perfect. I am not God. I am only a one little speck in a vast universe. What is one swollen leg? There are plenty of people all over this world plagued with diseases and losses far worse. I am one of the fortunate. So are you.

66. Jeanne B. Msuestar@aol.com
Lima , USA
November 2, 2000 at 17:21

I had an mastectomy with 22 lymph nodes removed and I am suffering with Lymphedema in my left arm. I am thinking about buying a Reid sleeve. I would like to have any feedback from anyone that has used one. Has it been successfull?

65. Lou irisquilt@ivillage.com
Denver, CO , USA
October 28, 2000 at 00:38

I have been serfing the web to find other people who have this condition. I have lymphedema in both my legs. My thighs are huge. I get stares all the time and I hate it when teenage boys snicker. I went to different doctors all the time and they said its justlymphedema and you will have to live with it. I couldn't stand it anymore this summer. My feet were swollen so much that it hurt to just sit. I thought if someone would stick a pin in the top of them, a steam of fluid would stream out!!!! I have not had surgery, nor have I had cancer to cause this.I work in the vocational rehabiitation field and work with alot of people with disabilities. I am always looking on the web to find information about them and so one day I kicked in lymphedema. I was surprised to find all the information. I was really surprised to find out that there is a treatment for it. None of my doctors have ever suggested that there might be something to do. I found the name of a therapist in my area and talked my doctor into referring me to her. After just three months, I have seen a great difference in my feet and lower calfs. I hope, with time, that my thighs will reduce too. I have always felt alone with this problem. I always thought I was just fat. I am so happy to find others to talk to about this condition. It is hard to think that I will have to spend so much of my time wrapping, exerising and messaging. I can't wear support stocking yet because my legs are so big. I have been able to get into another pair of sandals I brought but were not able to get on. Now I can get them on. If anyone with leg lymphedema that is not due to cancer or surgery would like to email me I would love to talk to someone else. Please email me. It would be nice to talk to someone who knows where I am coming from!!!

64. Susan Tewksbury susant@nctimes.net
Escondido, CA , USA
October 24, 2000 at 03:46

You have a very good website. I want to tell what has helped my hand and arm. The problem is that when the wrapping, or the sleeve, or the glove is too tight at the wrist, the hand will swell more. My hand was actually getting worse when I began therapy, and my husband said-make it looser at the wrist. The therapist began to do it that way and it worked! Then when I got my sleeve and glove--- the therapist did the fitting and made the measurements for the wrist of the glove bigger than they actually are, so it wouldn't be too tight. Well, the sleeve was too tight at the wrist and my hand swelled up so we cut the sleeve at the bottom and that sleeve and glove worked great for many months. Then I discovered, when they were starting to get stretched out, that I could sleep in them, and didn't have to wrap every night!!! That was great. Now I have a different glove and sleeve and have to start all over again. they are too tight to sleep in, so I wrap every night. It is worth the trouble. The acorlymphedema support group helped me the most, the doctors don't know.

63. Les teacherinal@iVillage.com
October 15, 2000 at 04:57

I have lymphedema in both legs. The left started after a soccer injury when I was 12. My ankle never seemed to heal and my foot would swell for no known reason. I went to dozens of doctors, none of whom knew what was wrong. When I was in my mid-20's, I had pt which involved using a Jobst pump. Shortly after, I developed an infection in my thigh (my only one ever) and discontinued using the pump. Within 6 months, I developed LE in my right leg. I didn't know what my condition was called for the first 15 years I had it. I consider my condition to be moderate and fairly stable. After graduating from college, I pursued MLD therapy, which consisted of daily bandaging and massage. It was a trying experience due to the time involved. I saw good results, but was very discouraged by the hours of rolling and applying bandages. My PT recommended the Reid Sleeve and my HMO miraculously covered it. While it's not a cure, it allows me to maintain and reduce the swelling to a certain extent. I highly recoomend this product. I wear knee high stockings (PT wants me to wear thigh-high, but I just can't do that yet--I despise wearing them--can they possibly make anything less attractive?!?) I feel very down about my condition at times. It is hard to find shoes that fit, I avoid wearing shorts/bathing suits because I feel self-conscious. Once I went to the doctor because I had a sore spot on my leg and the nurse called in her friend to take a look at my legs. I felt like I was in a freak show. I'd love to hear from others who feel discouraged about this condition and also anyone who is coping better than I am with the challenges of LE.

62. georgia bartlett jesus@efn.org
eugene , usa
October 7, 2000 at 15:52

Hi! I had cancer surgery 2 years ago but wasn't diagnosed with lymphedema 'till last month. I'm fortunate that my insurance (oregon health plan) covers 6 treatments with a physical therapist, who is also teaching me how to do the massages myself. I never knew until recently that this could be a (lifetime) problem after surgery & radiation. I wouldn't mind sharing what I learn with other sufferers who do not have this care available. Good Luck!

61. Daniel Carrero bowlerdan@prtc.net
San Sebastian , Puerto Rico
September 19, 2000 at 09:03

I'm 41 and have had this condition for about 8 years. Doctors say there's no treatment.My leg swells to about twice normal size.It is very frustrating when your told there's nothing that can be done.Lately I've surfed and found some things but there's nothing in Puerto Rico.I dont know what to do about this.Good luck to all of you. Daniel Carrero bowlerdan@prtc.net

60. Angie angie@angiecarolyn.com
Boston , USA
September 12, 2000 at 22:04

Thank you for the site, I am glad I found it. I have had primary Lymphedema of the right let since I was 13, however it wasn't diagnosed until I was 23. I have found it is very difficult finding information about this.

59. Laura sailor_l98@yahoo.com
Huntington , USA
September 10, 2000 at 22:47

Hi everyone...I am 30 years old, and I just found out a week ago that I have lymphedema..It's in my right leg, and I have had it ever since I was born..I know how depressing it can get, because it has me in a depressing mood. I tend to ask myself the questions that everyone else tends to ask.."why me??" No one else in my family has it, and it just doesn't seem fair. I've been to 2 orthopedic doctors when I was younger, because it would start swelling around the ankle, and move down to my toes, and up the leg..they couldn't figure it out, and would diagnose it as a sprain, or no arches in my feet..I have to be careful about getting shoes, because even wide widths don't always fit..I don't wear shorts, skirts or dresses because I'm really subconscious about how I look..Since I've found out I have this problem, I've been trying to read and understand what it is..and then I cry..I wear a compression stocking on it, 30-40, and it hurts..and the "skin glue" that they tell you to use, is just plain awful!! I can't stand this stuff..I'm suppose to wear it all the time, and only take it off when I shower or go to sleep...I'm very confused as to what I'm suppose to do, what I'm limited to, and such..It hurts my leg, even with the stocking on, to walk even a few yards...and when I take the stocking off of a night, my leg will "jerk" and then start aching...I elevate it, but it doesn't always seem to make it stop hurting...No one in my family really understands how I feel, and what I have to deal with..Could someone please tell me how to understand this, and maybe talk about this "problem"??? My doctor tells me it is "Milroy's Syndrome" that I'm suffering from..that I have a congenital defect in my lymphatics...I'm really confused and scared...

57. Erin Hauntedbyed95@netscape.com
Florence, Colorado , USA
September 5, 2000 at 09:37

Thank you for this site, my mother had cervical cancer in '95 and among other things was treated with radiation, she has had terrible swelling of her left leg and her last bout brought her to the hospital all because of her leg. It was 3X the size of the other one and her roommate made her go. she has laid in bed for 5 yrs and has lost weight and become very depressed. Movies and pillows are her best friends. She has denied any further diagnosis of her cancer, because if it is that- there is no treatment. She is in terrible pain and has all the symptoms your page and the others descibe, right up to radiation destoying the lymp nodes...am I grasping at straws??? the VA says her cancer is back, but only because of her history she will not have any further tests..too exhasting and painful. I have moved here with my husband and children to care for her as she is bed ridden and can not care for her self...oh...do you have any advice?

56. Toby Corn nubbincorn@aol.com
Omaha, Nebraska , USA
September 3, 2000 at 23:06

September 3,2000

My husband found the Lymphedema Guestbook and called me in here to read the comments. It does help to hear from others who are experiencing the same frustrations.....you simply can't explain it to anyone, no one understands, do they? Even those closest to us cannot begin to understand.

I began experiencing some swelling in the groin area of my right leg about 25 years ago...at the time my internist put me in the hospital thinking possibly that I had a blood clot somewhere above the swelling. After an EKG, and venograms to the legs nothing was found and I was diagnosed with malfunctioning valves in the leg veins....which did not completely push the blood though the veins and therefore blood pooled in the leg....causing the slight swelling. This slight swelling continued for years and was not too bothersome. Then about 12 years ago the swelling started increasing and a vascular doctor put me in a knew high compression stocking, Jobst. That worked well for about 4 years. Then the swelling moved upward to include the thigh and so I went into a Jobst full leg compression hose that had a velcro piece that wrapped around the waist. I wore that for several years and then went into the thigh high that just was a full thigh. All this time my leg was maintained with the compression hose....but summer heat made it worse with the swelling. My leg swelling always went down at night, but due to the years of swelling had probably grown about 2-3" larger than my left leg.

In April 1999 I returned from a trip which involved a long flight time. A few days later my leg swelled as never before....but this time the swelling did not go down. I was in pain and went to another vascular doctor who diagnosed me with lymphedema....which he had a hard time explaining....I had known that I had had edema for years and had been told that it was "faulty" valves but now that the fluid was from the lymph system....a much finer set of vessels without its own pumping system.

I found not satisfactory explanation from vascular doctors.....their explanations were vague and "you'll have to learn to live with it". I took things in my own hands and went to the internet and found the Natonal Lymphedema Assoc., got on their mailing list and they sent me their newsletter. I was in that newsletter that they listed the treatment centers across the USA, doctors and therapists. A physical therapist was listed in Omaha who I called and that's how I got connected with lymph drainage therapy. I went through seven weeks 5x a week therapy. My leg was reduced almost to normal size. I am still going through trial and error as far as getting the right stocking and brand that will maintain. My therapist is confident that we will find a hose that will work....I get discouraged and am beginning to wonder but am trying to hang in there.

After downloading a lot of factual info from NLN I went "armed" to my doctor and only then did he start saying that these were alternative treatments.....I don't think most doctors want to venture out into those waters. As a patient suffering from lymphedema...I said to him "if there is a possibility that it will help, how can I NOT try it?" He wrote the doctors orders for me to receive treatment at the hospital that was offering treatment, which was nnot where he practices.

The email address for National Lymphedema Network is nln@lumphnet.org Website: www.lymphnet.org I think you'll find answers to your questions. It was most helpful in educating me.

55. Rosa H. Colón rhcescorpion@hotmail.com
Salinas , Puerto Rico
September 1, 2000 at 20:50

For many years I have lived without adequate treatment because of my ignorance about the condition. Now I am looking forward to palliative treatment which will help me in the future.

Thank You Ivonne.

54. sterlena a harris
las vegas nv , usa
August 30, 2000 at 20:00

I'm sorry, but I don't have cancer. My name is Sterlena Harris and I'm 39 years old. When I was 17 and about to start college I got the flu (or so I was told) and it landed me in the hospital. That was in 1979. I thank God for the internet because I know NOTHING on how to treat my own condition. Yes. It's been devestating for sure to be told time and time and TIme (did I say time?) again that I would have to "just live" with this. Due to my strong family support system, I have and will survive this (Sorry, my spelling is horrible and I'm at the library, so I must hurry). Yes, for years I have allways thought I was the only person with this (in both my legs). The feeling of being out and about and people quaking and pointing. Here's a tip: the next time you go out: to school, work, church (and yes you must still continue to live!), and someone stares and point: Ha! Point back and say, "Aren't you blessed you don't have to be like me?" Give them a big SMILE and watch their reaction. I guarantee that it will make people pause and smile.

53. uli whitt@aug.com
ST. AUGUSTINE , usa
August 23, 2000 at 11:01

I came upon this site yesterday. My lymphedema is in the left leg. I occasionally wear a compression hose and occasionally wrap my leg (on long flights f.ex). Two years ago, after I was diagnosed with LE I had to make a choice: to be constantly depressed and miserable while following all the medical instructions, or be more laissez-faire about it and move on with my life. I chose to go to swimming almost everyday, and it has helped a lot. First, I have improved my swimming skills enormously, secondly I am physically in much better shape then ever before. The size of my left leg seems to be constant. Still, I do a lot of research. I am looking into that reid sleeve (a woman on a plane ride to Germany this May was lauding hers a lot)/accupuncture/diving etc. Anyone who has tried accupuncture?

52. bigleftleg@yahoo.com
August 22, 2000 at 00:49

This is an additional message to my previous one from yesterday. I wear a Jobst 40-50 mg,(special made to fit, using measuring tape), Medi-Plus(they come in several different sizes, they are a lot cheaper, or Jobst (over the counter, (they too are a lot cheaper) The special made one are about $60.00+ per Each stocking, not per pair as the over the counter ones are. I wear a stocking from the time I get out of the shower to the time I go to bed at night. I also have an electric bed, which is a lot easier than putting, several pillows, blankets, etc to prop the end of the bed up. P.S. If you get a prescrition from your Dr. for the bed, It is Tax Exempt.. I also have, but don't use anymore a Jobst Home Medi II Extremity Pump. It didn't really work well for me, but my lymphedema is not as severe as some. Mine is 2" to 6" thicker/bigger from ankle to about half way up my thigh. It has been stationery for the past 15 + years. I believe wearing my stocking EVERYDAY is what has helped it stay the size it is. I know we will never have normal size legs or arms, but I guess this is as good as it gets! I also elevate my leg whenever possible, eg. sitting on the couch/ottoman, driving or riding in a car, also I use my computer tower, cardboard box/pillow when sitting at a desk. I put my leg up whenever possible, etc.. expecially at night. I hope this may help some of you who are new to this terrible thing we have...lymphedema. I also keep an antibiotic nearby, just is case it starts to flair up. eg.. reddening of the skin, hot to the touch or starting to ache. Thanks for reading, I'd like to hear some feedback.

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