Guestbook Number 8

Numbers 176 - 200

May 11 - July 7, 2002

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200. Kathy Gabriel luvslife34@iwon.com
Mastic, NY , USA
July 7, 2002 at 01:18

WOW........I have tears in my eyes!! I have always felt all alone with lymphedema. I was diagnosed with it when I was 12 after I sprained my ankle and the swelling never went down........25 years have past. I am so glad I went searching again on the internet. All of you are out there too!! I still have not met someone in person who has primary lymphedema like I have. I sure hope I meet someone now!!(Over the internet would be wonderful too!!)

199. Roz gralo@gosympatico.ca
Toronto , Canada
July 4, 2002 at 03:07

I wrote on this board in the past and have been unable to contact those who contact me. I feel really bad about this. I want others to know I share you pain and wish I could somehow figure out what I am doing wrong.I sent the messages and they come back. Oh well, I explained before that I have lymhedema in my right leg mostly a little in my left (primary). I wear support hose and feel that I can't stand it sometimes like today its 101 degrees.I don't want to go out. I lost weight and gained it back. Losing the weight helped my confidence but not my leg that much. I hope I can successfully lose it again. But I suffer from depression and anxiety problems so I have to deal with them. I feel I shouldn't feel sorry for myself because others are worse off but some days I can't stand it. I feel for the lady above who suffers from all parts of the body. Is that what can happen to all of us one day? I hope not. There is so little known but so many of you out there. I think I will come tho the page more often to check on others...thanks for listening.

198. melanie melanie_stone3@hotmail.com
Lincolnshire , England
July 2, 2002 at 14:36

Hi, this is the first contact I've made to others with lymphoedema. I have secondary lymphoedema, they think was caused by an attack of proctitis (like colitis, that I have had for 2 years) This has only affected my right leg. I know that I have not accepted it yet and am only just finding out about options ie manual lymph drainage and changing diet etc. Its a strange thing to live with, I've lost a lot of confidence and feel resticted in what I can wear. To be honest, I feel as if I'm disfigured. Is there anyone out there in the same boat as me and also has anyone ever had reflexology and found it to be useful??

197. S.Bailey siobhanbailey@hotmail.com New Zealand
June 24, 2002 at 01:32

Hi, I'm a sixteen year old with primary lymphedema in my ankles and abdominal (gut) area and am looking for any information about abdominal lymphedema, I have heard of no one else with such symptoms as yet. (Please email). It is a relief to read of others with similar difficulties, as after six long years of being ferried between New Zealand doctors who don't have a clue, I had thought I was alone! - Thank-you -

196. Paddy GreenEyez46@aol.com
Paragould - Arkansas , USA
June 22, 2002 at 21:30

This is a wonderful site. I, too, belong to lowerlimblymphedema and ladieswithlymphedema at yahoo.com and highly recommend them to y'all. Because there are so many of you here, I'm wondering if you could answer some questions. I am morbidly obese due to LE (inability to exercise or move around) and have LE 111 in both legs. I'm 56 yrs old. I want to know how to give self- massage (0r have family member do it) and how to take care of a weeping sore (that isn't infected) There is no theraphist here and the pump I have I no longer use cause it caused LE in my stomach! My doctor doesn't have a clue what LE is....he thought I had water retention until a surgeon (who was gonna give me a gastric by-pass) told the doctor he couldn't do the surgery cause I have Lymphedema. I would also like to know of any exercises that have worked (I'm wheelchair bound) and any "miracle diets" hahaha... Thanks for any advice.

195. linda allen landi@webtv.net
reading , usa
June 22, 2002 at 05:20

I had a radical hysterectomy due to cancer last year and woke up one morning 2 months ago with my ankle and the area around it twice the size of my right one. I went to my primary care physician and he had no idea what it was. I was told to put ice on it and elevate it. He sent me for ultrasound and it didn't show anything. I kept going back to him and after 5 weeks he sent me to a vascular surgeon who diagnosed it as lymphedema. Now my calf is larger than the right one also and I do feel freakish at times. I do wear compression pantyhose and right now it's so hot but I'm afraid not to wear it so I do. I never knew this condition existed and was never told about it after my surgery. The vascular surgeon said that physical therapy is a waste of time and does the same thing as the compression hose so I haven't tried any kind of therapy. Also, my insurance does not cover the compression hose which I think is really rotten. Is this a lifetime concern now? Please.....anyone in my shoes, email me and let me know what you have found helpful. Thanks so much for a chance to let loose!!

194. Leslie Davis mrsmcompton@earthlink.net
Silver Creek , USA
June 21, 2002 at 00:07

I had ankle reconstruction surgery 6 years ago and the swelling after surgery got worse and worse...and not one dr, not even the specialist or vascular surgeon ONCE said I might have Lymphedema. I figured it out. My dr NOW agrees, but isn't willing to send me to the Lymphedema clinic for treatment. Talk about frustration! I wish I had never had that surgery. It for sure has ruined my life. Anyway....I'm glad the internet has alot of information for us with Lymphedema, and we are such a wonderfully supportive group of people.

Hugssssssssss

193. marcie kusto mkusto@yahoo.com
ada, michigan , usa
June 20, 2002 at 18:08

I'm a 47 year old female with secondary lymphedema of the left leg for the last year and a half. I think it was caused from an abdominal hysterectomy thirteen years ago, I may never be sure. I saw ads for a lymphedema treatment center in my area and began treatment with manual lymph massage and compression wrapping at night. I wear a compression stocking during the day and have had great progress. My lymphedema is grade I although testing was inconclusive for a true diagnosis. I was depressed at first but now accept my daily routine with lymphedema. I would like to hear from others in my same situation. Thanks!

192. Ruth
Fayetteville , USA
June 17, 2002 at 20:27

Katherine and JeAnne - I got my lymphapress pump through Luna Medical. It did require a prescription. I was surprised to read that it is considered obsolete since that is what I was told by a lymphedema clinic to make sure I got. You might check out the Luna Medical website and contact them about getting that zipper extender, Katherine. Good luck to you both.

191. Katherine Pereira Jimkatva@aol.com
Woodbridge , USA
June 17, 2002 at 19:41

Finally! I have found a website that explains my disease and a place for my voice as well. I have suffered from this disease so long that I can't remember when it all started. I have it in both legs and it seems to be creeping up into my belly (has anyone else had this happen to them?) I have a compression machine which I was told is obsolete (LYMPHAPRESS) and can no longer find parts for it. I am in need of a zipper extender if anyone else has this machine or an extra extender....I have a very hard time complying to what I need to do because I am a very active person and can't sit still for very long. (Gosh how I HATE to sit still!!!) How do you handle it? So glad to find this site!

190. JeAnne Ingersol jeingersol@arq.net
East Lansing, Mich. USA , USA
June 15, 2002 at 17:29

What a terrific web site. You may be sure I'll return to it often. Right now, trying to cope with my Juzo custom glove. Painful, miserable. Hopiing for improvement. Am curious about pumps. Prescription required, I suppose. Am also Also am debating whether to attend a Chicago NLN conference as a "cast history." Prospect of travel, hotel, conference schedule is daunting in view of need for exercise, self-massage, bandaging, all that garbage that takes much time and effort. Cost is a factor, too, of course -- on top of this miserable glove. Help!

189. Susan USA
June 14, 2002 at 20:35

Hi. New here. I have sweling in my legs and feet big time when I sit for more thn a few minutes. And I always wake up with swelling in hands and sometimes feet and legs.

Does this sound like what you are discribing at this board? Sometimes my toes just plain ache!

188. Donna Hartt wisesagicap@yahoo.com
Kamloops , Canada
June 13, 2002 at 04:06

Thank you for a really great site! It's so hard when you feel all alone with what you've got, when all you'd like to do is sit with another female who may have this and mourn not being able to wear all the pretty shoes, tee hee! I have Primary LE and have had it in my right foot since 12, and my left foot 16. No one else in my family has it. Doctors aren't able to tell whether my brother carries the genes and won't know until he decides to have children. Imagine, a genetic disease that struck only me! Oh well, nobody's perfect.

My advice to any parents with young ones with LE....counselling and support from family and professionals. I, at 32 years of age, am just now dealing with psychological effects of having Lymphedema. Your little ones need to know they are beautiful no matter what, must love and accept themselves for who they are and what they may look like, and that they are worthy of receiving love. This uniqueness has taught me great compassion for others. Tell them that it can be a gift on those days when they're finding it a curse.

Yours in Swollen Feetness ;-) Donna

187. Ruth
Fayetteville , USA
June 11, 2002 at 20:52

I have posted a few other messages here in the past. Just wanted to pass on some information. I developed lymphedema about 18 months ago after surgery for breast cancer (4 years ago). I have found that water aerobics is wonderful for treating this. I started going 11 months ago. I go 3 nights a week and have been able to sleep without the Reid sleeve for the last 2 months and don't need any compression garments during the day. I can't believe how much help this has been and want to pass on the information.

186. Nessa lynessa@juno.com
Beach Park, IL , USA
June 10, 2002 at 19:43

I am scared to go to the doctor to find out if the swelling in my arm is due to the fact that my LE may be spreading. I was diagnosed 4 years ago with Primary LE in both of my legs and now it looks like my right arm might be affected now. *Sigh* Does anyone know how I can get over this fear of finding out about my arm? Also does anyone have any info on Primary LE? Everytime I do a search I get info on Secondary LE from Breast Cancer... Please feel free to email me. Thanks, Nessa

185. Cynthia Sell [Mrs] bluetit@bushinternet.com
Tunbridge Wells , England
June 10, 2002 at 02:32

Great site! There are lymphedema support groups at Yahoo.com for ladieswithlymphedema, LowerLimbLymphedema and lesupport.

184. anil anil_ozen@hotmail.com
ankara , turkey
June 9, 2002 at 15:14

My mom had an operation of breast cancer and developed lymph edema of the left arm due to the dissection of the axillary lypmh nodes. I started surfing on the internet to find the latest and the best treatment methods in th world. I will appreciate even any short recomendations:)

183. cathy young isewright@aol.com
Salina Oklahoma , usa
June 9, 2002 at 03:09

I am 50 years old and have primary LE. Just found this site. I think it will prove very informative. I feel all alone with this disease. Their isn't vey much known about LE at the clinic where I go. Any info that anyone can share would be appreciated. Thank You Cathy

182. Suzy Pena SueSueNY@hotmail.com
Warwick, New York , United States
June 7, 2002 at 05:13

I had surgery in 1990 to remove a malignant melanoma on my right foot and ALSO the lymph nodes in the right groin area. Last year I noticed that my foot looked somewhat swollen so I go to my regular check up and was diagnosted with lymphedema in my right leg. I WAS NEVER EVEN WARNED THAT THIS MAY HAPPEN AND HAVE TRIED TO CONTACT THE DOCTOR THAT PERFORMED THIS OPERATION AND HE WON'T SPEAK WITH ME.

I feel my life has been destroyed and am devastated. I can't work and I'm in a abusive relationship which I feel trapped

My life revolves around compression bandages and stockings. I have always been a physically fit person and now I have lost the desire to live.

181. marilyn grigghome@aol.com
london , england
June 5, 2002 at 21:08

just found this web site, very informative. I had breast cancer 2 years ago, after 2 lots of surgery, chemo and radiotherapy I developed lymphoedema in my left arm, not too noticable at the moment but I'm aware that it's there. Has anyone tried reflexology to treat their lymphoedema, I'd be interested to know if it works.

180. Jessica Amanda Valentine EAR@GTY.CI.HENDERSON.NV.US
McRea, , USA
May 26, 2002 at 22:55

Hi, I have no e-mail address, my mother is posting this for me. My husband and I have recently found we have two children affected with Milroys.....one only mildly and the other, a baby 5 month old, is sever. If anyone has any info for us, please contact us at: Scott & Amanda Valentine 317 Webb Hill Road, McRea, Arkansas 72102.....or you may call at: 501-882-7673 Thank You, Amanda's mom....Ann Ruiz

179. Evelyn grose egrose@cfl.rr.com
Cocoa , USA
May 25, 2002 at 15:33

I have Secondary Lymphedema in my left arm and I am left handed. I am trying to find out if there are any drugs available on the market in the U.S. that have been aproved from the FDA to be taken for the swelling. I know they have some drugs in Sweden, but not in the U.S. Please respond I would appreciate it.

Thank You, Mrs. Evelyn Grose egrose@cfl.rr.com

178. samantha cummings goblincake@yahoo.co.uk
london , england, uk
May 20, 2002 at 19:19

very interesting and informative website, everyone has such a lot of advice and experience to offer eachother. I am 39 years old, two young kids, dropped a heavy false kitchen drawer-front on my left big toe last august on holiday and thought i would lose the toenail at least, but no bruise or anything to show for that, and it hurt! BUT a week later on a hot summer day my left leg had really badly swollen up to mid calf. I went to my GP and she had no idea, sent me to casualty at local hosp. suspected dvt, sat around for a few hours waiting ot be seen, did a blood test, no dvt. back to GP, wait months for consultant appt. eventually saw one november, he sent me for scans on upper leg for blockage, no blockage. So, back to see consultant, he says "oh, you have an edema"!?!... tell me something i don't know doc. - so i eventually get to see an NHS physio (from Australia!) who says no physio in area qualified to do anything with edema, have a tubi-grip bandage; she admitted lymphedema was much better served where she comes from. So i am on my own, i had already, waiting to see a consultant etc. surfed the web and come up with lymphedema myself! So I find tubigrip bandages are rubbish, i wear DVT flight socks by Scholl when my leg is really bad, usually when weather is warm. I am due to be visited by a private MLD physio in two days time who charges £60 an hour, so i hope i don't have too many of those to pay for. Does anyone know how you learn to do it yourself on yourself? I will try swimming but i need to overcome my fear of it first. I have found stuff on the web about horsechestnut seed extract which was trialed in germany and found to be as good as bandaging and also taking special cocktail of detox herbs which is supposed to make the treatment by mld and compression work much better and quicker. I am amazed there are so many people with this and you never hear about it till you get it. I think the CircAid stuff looks good on their website but where do you get in the UK?? I sleep with my bed end up on two huge piles of old magazines and stick my leg up in the air whenever i sit down. My brother has had non-hodgkinsons cancer, which is the lymph nodes, he has no lymphedema but it makes me wonder whether there is a genetic predisposition in our genetic makeup for problems with the lymph system. It is great to share our knowledge, thanks for all yours.

177. lajuana lajuanajeter@yahoo.com
bakersfield , usa
May 17, 2002 at 03:10

I was diagnosed with secondary lymphedema 6 years ago. I have swelling in my right foot, leg, and thigh. I like everyone wish there was a cure. I have a pump but haven't found it very useful. I perform MLD massage on myself and bandage nightly. I also wear a 30/40 compression stocking. On bad days I wear two stockings. Has anyone had much success with any herbs or medications to help with the swelling?

176. Laurie Fierro lmfierro@prodigy.net
North Bergen , USA
May 11, 2002 at 02:51

I'm a 45 year old woman with left leg lymphedema since a fall almost 2 years ago. I had manual lymph drainage at Lerner Lymphedema in NYC, a great center which is now closing. I have 2 questions for anyone who can answer them. The first is, do you know of a good center in the New York/New Jersey area for checkups and second, does anyone have a positive experience with the pump? All I seem to read about it is negative, causing infections. Has anyone had good results with it? Please email me at lmfierro@prodigy.net Thanks!

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