Guestbook Number 19

Numbers 451 - 475

December 6, 2004 - July 23, 2004

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475. melissa tremlett mel.mat.t@bigpond.com
sydney , australia
July 23, 2005 at 05:05

I'm 30 and have had primary lymphedema in my lower legs since 18.... It's Great to see a site dedicated to this problem...... I would love to hear from anyone who is around my age and is living wih this condition.

474. Carol Moore hbrown@cableone.net
Ponca City, Oklahoma , usa
July 21, 2005 at 18:40

This condition is really getting me down! I have gone to a physical therapist and was shown how to do the wrapping, which did help but is a pain in the neck. I am very interested in getting a pump for my leg. I have secondary lymphedema from a cancer surgery in my groin and did have a couple of seroma's that had to be drained. I would like to know what kind of pump is the best to use and if there is anything else I can do. I am wearing 30-40 compression hose, and they do help alot. I dont have all day to spend on the internet searching for products cause there are so many and I get confused. My doctor's referred me to a therapist for treatment and dont really offer too much about the pumps. Any info on this would be greatly appreciated. Sincerely, Carol Moore

473. Paul AttyDallas@aol.com
Garland (Dallas) Texas , U.S.A.
July 18, 2005 at 02:15

I have been suffering from severe, bipedal edema for many years now, of unknown origin. &:-((...

One thing I have wondered about many times since starting on this painful and disfiguring journey is: have medical researchers, using microsurgery, ever tried transplanting "good" lymph nodes/ducting from other parts of the body not affected by lymphedema? is this possible? could it cure the lymphedema condition?

I've also wondered if lymph nodes/ducts could, if needed, be transplanted from a donor or even if scientists can develop artificial nodes/ducts for implantation?

Anyone have any information or thoughts on any of this?

&:-)) Paul

472. Crystal Johnson austin_iz_2_cute@yahoo.com
Rancho Cordova, Ca. , USA
July 15, 2005 at 06:33

Thanks to everyone who put fourth the idea to form a LE website. I have learned a lot and have been able to make friends with others that have it. Thank you all. ~Crystal~

471. Doctor husnucelik@hotmail.com
Elazig , Turkey
July 14, 2005 at 11:39

Hello Thank you for this website. I research treatment of leg odeme in cervival cancer.

470. Pat patoco2@aol.com
May 18, 2005 at 14:29

Hi Again Nikki and Emily

Due to quite a bit in posting and inquiries from teens with lymphedema in several areas, we have created a group specifically for teens:

Teens with Lymphedema

Description

Support group for teens and friends of teens with the condition lymphedema. This will be a safe forum where teens can meet others who share the same struggle with this condition. A place to find information, encouragement and hope. A home where you no longer have to feel like your the only one with lymphedema.

Teens with Lymphedema

Subscribe: Teens_with_Lymphedema-subscribe@yahoogroups.com

469. Pat patoco2@aol.com
May 16, 2005 at 20:14

Hi Nikki and Emily

Wanted to mention there is now specifically a Yahoo support group for Children with Lymphedema. The group is made up of parents and children - children range in age from infants through teen years.

Children with Lymphedema

Subscribe: childrenwithlymphedema-subscribe@yahoogroups.com

468. Nicki
California , US
May 11, 2005 at 01:20

My daughter was diagnosed at about age 13 and now just turned 15 with primary lymphedema in both legs. She has been doing MLD daily and bandaging every night for over a year. Her right leg has become worse with fibrosis and just was put on a pump and it has helped some. She is a competitive figure skater. Emily, if you would like to talk to her about what the two of you share you can e-mail her at SweetAngel2943@aol.com. It is uncommon to fine someone your age dealing with this. I know whe has been very frustrated lately and knows of no one her age with lymphedema.

467. Shari tootiredmom2@cs.com
Wildwood , USA
May 10, 2005 at 19:51

My 80 year old mother had a pacemaker put in 9/04. Immediately after a mass appeared in the cavity between her neck and shoulder and then later a mass appeared under her armpit. (Both masses are soft and appear to be fatty or fluid filled). Doctors performed ultrasounds and CT scans and could see nothing so they told us to just keep an eye on it. Then in March her arm on the same side as the pacemaker (left) started to swell. After almost a month and every blood test, CT scan and ultrasound you can imagine, they couldn't find anything -- so they diagnosed it as lymphedema and sent us to a physical therapist who has been wrapping the arm and performing manual drainage massages. For the past two weeks we have not seen any reduction in size or swelling. I have three questions. (1) Is there a way to definitively determine if she has lymphedema? (2) Has anyone else out there ever had this happen due to surgery from a pacemaker? (3) Any advice on a way to "fix" or repair the damage?

466. Antoinette Zertuche ant247@aol.com
Ontario Ca , San Bernardino
April 14, 2005 at 06:37

I have Lymphedema not too bad. It is the weakness that is severe, along with numbness. My arm from the point of the surgery (under my arm pit) to my finger tips and shoulder always feel asleep. I find it hard at Work, Home, Funtimes. I'll just drop things and not realize it until it hits the floor. BreastCancer two year's ago. Antoinette Zertuche

465. Emily USA
April 13, 2005 at 00:41

Hello all. I'm currently 16 years old. I was diagnosed with primary lymphedema at age 12 in my lower legs. I do take some pride; (though its not something I wish to have to take pride in!) I believe I am the youngest to be seen with primary (at least on the east coast?) lymphedema. It was not caught earlier, because I am rather petite; I am 5'5" and weigh 135; and also very active with soccer.I play as goalkeeper; so I am constantly (more like my mother is) vigilant of getting bruises and such. It really sucks having to deal with all of this now. High school is the time to go wild and no cares, right? I never really let my issues get me down. I usually view it as an inconvience, not a life-ending....curse, I guess. Today though, I went for a check-up, and apparently I'll have to have the MLD treatment on both legs, and an arm and then wrap the arm and legs again at night...in the summer. (My arm looks completely normal, but apparently shows signs of lymphedema...) (Playing in goal I've banged up my elbows pretty severely; pinched nerves and the like might not help matters). On the matter of hands; I've also Reynaud's (sp?) phenomenon; which really doesn't bug me too much; It's just annoying; and apparently perpetuated by Adderall...:/ Its just hard to feel confident when I feel like a freak sometimes. But all in all, I know I'm really lucky to have it so easy. This site is truly wonderful; it provides wealths of information as well as an outlet for people like me just to share their thoughts with people who understand. Thank you so very much.

464. Judy saskjl@yahoo.ca
Saskatoon , Canada
April 4, 2005 at 03:08

This is a wonderful site, very informative for persons with this problem.

I was initially mis-diagnosed at age 15 with deep vein thrombosis. Many drs later and many (painful) tests later, I was finally diagnosed with lyphedema of my lower left leg. I have had this problem for 20 years now and am still trying to find ways to deal with it on a daily basis.

Michael - I have had two children, had toxemia with both of them, which added to my circulation problems - both of my legs were like tree trunks by the end of my pregnancies! The swelling did go down somewhat after my children were born, but losing the baby weight (which also helps reduce the swelling) has been a harder chore for me.

Thankfully, both of my children are doing fine so far, but as I wasn't diagnosed until a teenager, I will have to wait and see if my children will be affected by it.

In the 20 years I have had this, I have thankfully had only one incident with infection in the affected limb. However, the infection quickly spread into blood poisioning, thanks to an emergency room doctor who told me to go home because I had the flu....little did he know I would be back at the hospital the next morning, almost incoherent.

I have not been subjected to a lot of teasing about my condition. However, I feel uncomfortable wearing shorts or skirts, and have difficulty finding footwear that will not only fit my feet, but make me feel like a woman as well. The main problem this condition has caused for me is a severe hit to my self esteem. But websites such as this one are helping me realize there are other people out there who understand what it feels like.

Thank you so very much for sharing your stories and allowing me to share mine...

463. amanda fowler amanda81373@aol.com
cumming , u.s.a
March 22, 2005 at 16:37

I'm so glad I found this page! My mom has lymphedema, elephantasis, diabetes and recently on feb. 1 lost her left leg above the knee because of this. She is always getting infections and is now treating 3 very deep pocket wounds on her stump that has staph in them. I have been reading alot of information on line to find her some treatment options. We are from a small town in G.A. and she went to Atlanta before to have wrapping done. It seemed to help the swelling when it was wrapped, but when we would take off the bandages, it would swell right back. There are really no doctors around here that know a lot about these diseases. One doc told us, that they could do surgery that would possibily help, but that there was no doc in the state of Georgia that had done the surgery. Has anyone ever had this type of surgery or knows what I'm referring to? How do you know what kind of lymphedema you have? I know that there is 3 grades of it, but how do you find out what grade you have and what caused the on-set of it? All of this is very new to us, and we don't know much about it. All I do know is my mom is very dear to me and I want to do everything I can to help her and find treatment for her! I have an 8 month baby and I'm concerned for her as well as for myself. I'm very worried that I will have this disease and I will put my daughter through the same thing that I went through and are still going through with my mom. If anyone can help me I would be so grateful! Thank you for your web-site, amanda fowler amanda81373@aol.com

462. Bill WFHBear@aol.com
Las Vegas, Nevada , USA
March 15, 2005 at 05:53

I am suffering with massive lymphedema of the leg (right thigh) from my groin area to my knee. It is affecting my gait and is now causing me problems regaining complete mobility from a fractured left femur. I have had massage and wraps but, they have not worked at all. I am really starting to "lose it" over this problem. From all I read, surgery is not the answer. I have had two surgeries with drains that have failed. I was removing about 1200 cc of Lymph fluid a day from the second JP drain implanted. Now, with the drain gone I have experienced spontaneous eruptions of fluid. This eruption will spray fluid across the room and will not stop until the area has drained itself. Sometimes this takes a few hours. Lymphadema has severely damages my outside of the home life. I'm becoming a hermit. If anyone knows of any experimental surgery trials being conducted. I will gladly be a participant if I can get some relief.

461. Michael Demaris words4life_110@yahoo.com
Houston, Texas , United States of America
March 13, 2005 at 19:06

Dear Lymphadema Readers: I have a 29yrs girlfriend who is pregnant with primary lymphadema in her right leg. We met almost 3 years ago and she had just started getting treatment for her condition. Unfortunately she wasn't able to get a solid diagnosis for her condition for over 7years. Her leg is of considerable size and it worries me deeply on what will happen to it if it gets bigger. Thankfully we have two places here in Houston that treat the condition manual drainage but for ME THAT IS NOT ENOUGH. The women at the 2 treatment centers where she goes say that since the condition doesn't affect men as much that is why there isn't enough research done. She is 7months pregnant and her leg is encroaching on being 3 times what it should be. Her situation depresses her and myself and living in a virtual Metropolitan Swamp the humidity in the summer doesn't help. HAS ANYONE THAT HAS HAD PRIMARY LYMPHADEMA AND BEEN PREGNANT SEEN IT AFFECT THEIR CHILDREN AT BIRTH OR LATER? 2) BESIDES MANUAL DRAINAGE, AND WE AREN'T CONSIDERING LIPOSUCTION BECAUSE IT MAKES IT WORSE WE HAVE HEARD, WHAT ELSE IS OUT THERE? She has a pump that she used off and on and she has done lots and lots of ACUPUNCTURE which has slightly helped and kept the leg from hardening. Has anyone REALLY SEEN THERE CONDITION GO BACK TO NORMAL FROM A LARGER SIZE? I hope and pray the all of you do as I do for her and continue to research for a solid cure. GOD BLESS, Peace

460. Joanne Johnson Bookworm04@excite.com
Mahopac , United States
February 21, 2005 at 06:42

I have primary lymphedema in both legs from the knee down. I have someone sew pants for me as I am unable to find any pants in the store that fit my legs. I cannot find any socks that fit my swollen feet and ankles. Any ideas??? I am able to buy some ugly shoes in a store that specializes in very wide withs.

Is lymphedema considered a condition, disease or what? Thank you for any information someone may have.

459. Cyndi NVLymph@aol.com
Henderson, NV , USA
January 20, 2005 at 06:25

Hi CW, Reid Sleeves work really well for our patients. We have a lot that take Cruises regularly and travel to Europe frequently. Not many want to haul that pump around. They have had really good success just using Reid Sleeves and compression stockings. If you are looking into a Reid Sleeve, you may not want to get a Classic. They are bulky and if you live where the climate is hot, it's almost impossible to tolerate. In Nevada, it gets up to 120 degress in the summer. Most of our patients are using the Optiflow SC, or the Optiflow EC with a Cinch. Hope that helps!! Cyndi Ortiz, CCT

458. driver igbo tata@uzoagba.com
jackson , usa
January 4, 2005 at 15:16

Thanks so much for the information. I'm trying to decide if the Reid Sleeve is for me. I do quite a bit of traveling abroad and can't take my pump with me so I thought it may be a good idea. My insurance will help with the cost. I've been very careful with my leg and have followed instructions. I haven't run into and problems but want to continue without issues as I get older. I think it's probably harder as we age :) I appreciate your input. Thanks again, CW

457. Jocelyn L. Walker jocelynlwalker@comcast.net
Jacksonville , US
January 3, 2005 at 02:38

I am a 40 year old woman that was diagnosed with breat cancer at 30 and 32. I went through years of chemo and radiation. I am now cancer free, but I've got lymphedema now. No one ever mentioned this condition while going through treatment.

I have good days and bad days. I try not to complain but sometimes the pain, swelling and reduced usage of my age really get to me. Today is a bad pain day.

If anyone has any suggestions to reduce the length and frequency of flair ups I would like to hear from you.

Tomorrow is another day. I look at each day as a present that I open up in the morning. Hopefully, tomorrow will be a better day.

456. m m.f@chello.nl the netherlands
December 28, 2004 at 13:54

I have primair lymfedema sinds I was 12 years old. I'm almost 34 yaers old. Does anybody know something about 'big'lymfvessels? my therapist sais i have Hyperplasie of the lymfglands. I always was told that i did not have enough lymfglands. but she thinks I have enough, but they are 'oversized'. people who have 'big lymfglands' often have hot feet/legs after eating dinner, or atleast food that is hot/warm.

primairy lymfedema can be: -a lack of lymfvessels =Hypoplasie -lymfvessels that are too big =Hyperplasie (can't close, they are 'worn out'if you know what I mean)

455. Julie Ellis wintanka@msn.com
Beloit , USA
December 21, 2004 at 20:05

I am 39 years old and have primary stage 3 lymphedema in both legs. I also struggle with Chronic Venous Insufficiency, Lipedema, Angioedema, Idiopathic edema: Pretty much anything that can swell, does. I've had the more acute form of LE for about 10 years. I've had chronic weeping leg ulcerations on my calves (which are presently not weeping/still healing: :-)!!!!), chronic cellulitis infections, fibrotic tissue, neuropathy and Myofascial Pain Syndrome. I had signs of LE at least since I was a teenager, but it was not recognized by doctors for what it was (I was told I was fat.).

My first experiences with swelling of a limb (my feet and hands would swell 2X bigger than their normal size or more) and angioedema (the skin on my face would swell my eye shut) involved an allergic reaction (hives) to NSAIDS (OTC pain relievers). I had these problems throughout my childhood off and on for as long as I can remember, until my teens, when we realized it was NSAIDS that caused many of my problems. I continue to get hives (and the resulting swelling), occassionally, whenever I get severely stressed (though Claritin really helps that). I have not read anywhere where there is any kind of connection between LE and hives, but for me, there may be, or at least, hives may have masked the LE when I was a child.

My mother has LE and CVI, too, and chronic cellulitis, though on a much lesser scale. My uncle had a "mysterious" problem with fluid in the lung cavity which had to be drained years ago and has had swollen lymph nodes and other minor swelling issues much of his life. Needless to say, I think there's a hereditary factor to my condition.

I am forever grateful for the resources available on the net: It is through the self-education that I was able to do on the internet that I got a proper diagnosis and treatment.

thanks so much for being there!

julie

454. Pat O'Connor lymphedemapeople@aol.com
Atlanta, GA , USA
December 17, 2004 at 00:30

Hi Pam

Good to hear from you!!! No, you're not alone and there are many of us out there with lymphedema and we are only to glad to help each other, we ar a global family!

We have a relatively new page that I don't know if you have seen yet.

Leg Lymphedema - Leg Lymphedema.

This page wll give you info on specifically leg lymphedema; has info on leg self massage; some exercises; diagrams on how to measure the leg for compression stockings and a section with links to suppliers of leg wraps, compression garments and sleeves. You may be able to communicate with them via the net and they may be willing to work with you on getting some compression garments. Hope this can help - keep in touch!! Pat O'Connor - Lymphedema People - Lymphedema People

453. Pam pamassmail@yahoo.com
Kampala , Uganda
December 16, 2004 at 09:49

Hi Everyone, I have had lymphedema in both legs since I was 11. Now Im 26. I'm suprised there are so many people with this condition, especially since most of the doctors I went to knew nothing about it. Im so glad for having found this site, for it is a big encouragement. I now keep searching the net for information to help my doctor help me. All the tips that have helped me live with this condition,I have gotten from the net. Unfortunately finding compression stockings in uganda is next to impossible. So far I have failed. I therefore use bandages, which often get very uncomfortable and ofcourse are not sylish. Im very glad for all your sharing. It makes me realise that Im not alone.

452. Tamie Kwist circle_of_faith@hotmail.com
Indiana , USA
December 14, 2004 at 19:17

I have Primary Lymphedema. I have recently moved my personal website and updated the page about my personal experience to include tons of links on research articles for Hereditary Lymphedema and the FOXc2 gene to Tamie's Lymphedema

I have an idea. Lets all start raising awareness by wearing tshirts Saying "Ask me about my mismatched _________". Fill in the blank with arms or legs, or think of a slogan that applies to your own condition.

451. CW wilsoca@hotmail.com
Kitchener , Canada
December 6, 2004 at 00:58

Hi Angela, Thanks so much for the information. I'm trying to decide if the Reid Sleeve is for me. I do quite a bit of traveling abroad and can't take my pump with me so I thought it may be a good idea. My insurance will help with the cost. I've been very careful with my leg and have followed instructions. I haven't run into and problems but want to continue without issues as I get older. I think it's probably harder as we age :) I appreciate your input. Thanks again, CW

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