Guestbook Number 15

Numbers 351 - 375

April 16, 2004 - July 9, 2004

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375. Carol M mancinicr@aol.com
July 9, 2004 at 05:57

Hi, hope someone can point me in the right direction. Just recently I moved my elderly mother into a nursing home. She has a variety of debilitating conditions, including lymphedema in her RL. As I cleaned out her home, I found a brand new lymphapress, purchased in 1985. Is there any market for this product, or has the technology changed to such an extent that I have a dinosaur on my hands? Please respond directly to my email, as I am not sure how I discovered this website. Many thanks, Carol Chicago, IL

374. Pat O'Connor lymphedemapeople@aol.com
Atlanta, GA , USA
June 30, 2004 at 14:30

Hey Mike

Been where you are - my lymphedema started just about the time I popped out of the womb! Had many experimental surgeries and stuff back in the 1960'-1970's. Now I'm an old timer at 51 :-)

On my website, just added a new article on How to Apply for Social Security Disability - has some good info and links for help.

Drop me a note too, very definately have much in common.

Will look forward to hearing from you.

Pat O'Connor Lymphedema People http://lymphedema.omno.org

373. Michael Heyn w1fred2jo3@aol.com
Milwaukee , USA
June 30, 2004 at 01:49

Hi My namw is Mike and I have had Lymphedema since I was 17 days old. I have been sick in the hospital every month for the last year for at least a week at a time. I have it From my chest down to my toes. It has really taken over my life lately and at the end of May I signed up for getting disability.Does any one out there get it because of this condition? I have to wait 120 days to find out if I am going to get this. It is very diffficult to work as I have a hard time breathing and moving. I am only 24 and I feel 100.Anyone who would like to write please do. It get borred would like to write to others who know how I feel. Mike

372. Pat O'Connor lymphedemapeople@aol.com
Atlanta, GA , USA
June 23, 2004 at 19:38

Hi Marie

Welcome to the Guestbook, glad to see some new posts here as well. You'll be amazed at how effective MLD can be at controlling lymphedema. It can even reverse a large amount fibrosis from long term lymphedema.

Let us know how your first visit goes/went. :-) Best to You

Pat O'Connor Lymphedema People

371. Pat P'Connor lymphedemapeople@aol.com
Atlanta, GA , USA
June 23, 2004 at 19:30

Hi Cyndi

Thanks for your notes on the Lymphedema Patient Bill of Rights. I have also been spreading the word. We have started a yahoo group specifically for lymphedema advocacy - it's not a support group - strictly to further the cause of advocating for lymphedema, called Advocates for Lymphedema

Subscribe: AdvocatesforLymphedema-subscribe@yahoogroups.com

This is an election year with new possibilities opening up - let's not loose heart, but keep pushing!

Pat O'Connor, Lymphedema People

370. Cyndi NVLymph@aol.com
Henderson, NV , USA
June 3, 2004 at 19:56

For those of you who are keeping up with the progress of the proposed Lymphedema Patient Rights Bill we are making progress. The US Congress has begun making changes to Medicare guidelines to include coverage on compression stockings bandaging, and other bandaging alternatives. These items are not currently covered. Initially they will address changing regulations because it is faster. They will then work on introducing legislation to solidify Medicare's coverage guidelines. If anyone would like to know more or obtain contact information to voice support, please feel free to email me.

369. Marie mariebcj79@hotmail.com Ireland
May 30, 2004 at 02:58

I have had lymphoedema since my teens-some thirty years ago.At first the swelling was in my right ankle; in time it spread to my toes and instep and more recently right up to my knee. The left leg is also swollen,to a lesser extent.Having been told that there was no cure I accepted my condition -my two main worries centered around people's ignorance (is it from your heart or your kidneys? etc.)and the footwear problems. But wait...after all this time is there a light on the horizon?? I am due to visit a therapist this week .Am I looking forward to MLD and bandaging ? No,I'm really quite anxious about it but surely it's worth a try.I have experienced pain(sharp and stabbing)in the limb for the first time; it's also quite red with some blisters and what an odd shape!Have I a choice? It has been good to confide in you all!(fellow-sufferers!)Take care!

368. Bryony Darvill bjd100@hotmail.com
Portsmouth , England
May 24, 2004 at 21:22

Hello I'm a physiotherapist in Portsmouth and I've recently been given the opportunity to set up a management proposal for a lymphedema clinic in the Portsmouth trusts. I have never suffered with lymphedema and so I would really like suggestions from people who actually live with the condition. What would you want to be included in a clinic ie, information talks, lessons on massage etc. If anyone has any advice I would be extremely grateful. Thank you, and good luck to you all in fulfilling your goals.

367. joanna m joannacre@hotmail.com
crete , greece
May 24, 2004 at 17:40

hi i really like this page i just found it actually and have been reading the posts written by other people.im 28 diagnosed with lymphodema in my arms legs and face and have been treated with manual lymph drainage and wearing my stocking .yeah they yucky brown ones!!id like to ask when going to a gym what types of exercise should i do?tredmill i guess is ok and mild weight lifting like say five kilos?do u know of any other exercise that would be good?take care

366. Pat O'Connor lymphedemapeople@aol.com
Atlanta GA
May 22, 2004 at 11:53

Hi Jervette and Gene

Welcome to the board. I wanted to second what Debbie said about the pump, especially if the lymphedema has already spread to another limb. Decongestive therapy with compression wraps and garments is simply the best treatment option available. I tried the old Jobst compression pump way back from 1968-1970 with no success.

If you have not had decongestive therapy and compression garments do consider it. I am not sure either why the doctor said to expect cellulitis every 7 - 8 years. Cellulitis and lymphangitis both are infections that every lymphedema person should be on the watchout for 24/7. It can strike seemingly out of the blue.

Since you have had LE since you were 10, what stage is your leg? Even if you are stage 3 with extensive fibrosis, that can be treated and reversed thru therapy. The stage will also make a differance in how cellulitis is treated. In later stage LE and in recurrent cellulitis, it make be neceesary to have IV antibiotics for a couple weeks. Oral antibiotics sometimes find it difficult to penetrate fibrosis.

Gene, thanks for helping your brother in law.... it is such a morale booster when you are first diagnosed to have someone by your side!!!

Best to All

Pat O'Connor Lymphedema People http://lymphedema.omno.org

365. Debbie mickeymom659@aol.com
Gaithersburg, MD , USA
May 21, 2004 at 22:21

Hi Jervette

Glad you found this site too (I just found it this week). We live somewhat near each other. I thought that Johns Hopkins had a massage therapy unit (you didn't mention that you had tried that). I once spoke to someone there, but found a place closer to me. From what people say the pump sounds risky. That is awful that it spread to your right leg (of course it is also awful that you have had this since you were 10). Why did the doctor tell you to expect cellulitis every 7-8 years? Do you walk around without the stockings? Sorry all these questions. I have it in my left leg and am praying it doesn't spread anywhere else. I have four kids (10, 12, 14, 16) and watch other people's kids, so I'm around children and on my feet a lot like you.

364. Jervette Ashton ashtonj268@aol.com
Baltimore , USA
May 21, 2004 at 03:43

My name is Jervette. I have had this disease since I was 10 years olds and suffered with a broken ankle. After that my left leg was swollen everyday but would go down with elevation. There was no pain. My Mother carried me to Doctors around the Baltimore area and no one knew what was going on. I had whirpool baths, wore the tight stockings, told to keep my legs at heart level and even was approached about a vein stripping procedure. Nothing worked. As a young lady growing up I could never wear the shoes my friends wore all day because of my swelling feet and ankles. When I became an adult (early 20's) I suffered with my first bout of cellultis. I was told then that I would suffer every 7 to 8 years with this and to watch out for cuts and bruises on my leg. Then would you know it the swelling begain in my right leg. This leg is the worst of the two. It is huge. I have heard of the pump, but never had one. The last time it was infected the leg temp was so hot and high, it turned fire engine red and I almost had a case of blood poisoning and stayed in the hospital for two weeks. Currently, I am a Kindergarten Teacher and I try to stay active and I was very excited when I found this web site. I didn't know so many people suffer with this disease. Now I know I'm not alone. Thank You!

363. gene guffey tracker554@yahoo.com
london ,ky , usa
May 16, 2004 at 21:36

i have been doing research for my brother-in-law gene. he has been diagnosed with lymphedema. was sure glad to find this website( not that i would wish this on anyone) but just knowing there is other people you can talk with and maybe get some answers.

362. Debbie mickeymom659@aol.com
Gaithersburg, MD , USA
May 16, 2004 at 00:16

Thanks, Pat, for your concern and words. I will keep you posted. My surgery was going to be next Friday, but I postponed it until July 21st because it will be summer and my kids will be out of school and around to help me. I also daycare children and most of them are at camps for the summer. Now I am really glad I postponed it so that I can get a little educated about my existing condition and hopefully get my doctor to read up on it too. The funny thing is that I was all excited about possibly getting a tummy tuck at the same time (I'm seeing two plastic surgeons this coming week), but I don't know why I didn't think of the complications of my lymphedema.

About my weight, I'm constantly counting calories (but I do drink coffee and wine and eat things that aren't recommended for lymphedema) and I go on my treadmill and walk 3 miles every day and have since college. I'm very conscious about my weight and shape and it was very upsetting when LE set in because I had never heard of it.

I know there are worse things to have and there are people with worse lymphedema stories than mine, but it's so upsetting and depressing and frustrating that doctors and researchers aren't seeming to be looking for a cure. I am glad I found this website today and anyone who wants to email me is welcome. I will be visiting here daily. I don't know anyone, personally, who has what I have, so it's nice to know I'm not alone on the internet.

361. Pat O'Connor lymphedemapeople@aol.com
Atlanta , USA
May 15, 2004 at 19:40

Hi Debbie

Just read your post. Its a tough call when it comes to any type of surgery with lymphedema. While I am not a doctor (just a lymphedema life), I would encourage you to go ahead with the surgery, if you (the doctor) thinks it is necessary. I have had two aunts die with ovarian cancer so I am well aware of the seriousness of that condition.

I would urge your doctor to be extremely careful in the operation - to be aware of the lymphatics... and be sure you are placed on a preventative therapy of antibiotics to prevent any infection.

While there is always a risk for lymphedema patients, there is more probability that the surgery will not worsen the lymphedema if done carefully.

I really want to compliment you on your weight too. Maintaining a healthy weight is so critical to lymphedema patients - that's a super big plus also in your favor for the surgery.

So my friend, take a deep breath - relax - and do what you need to do to keep yourself healthy. Please do let us know how you are doing and when you have he surgery!

Hugs to Ya!

Pat O'Connor Lymphedema People http://lymphedema.omno.org

360. Pat O'Connor lymphedemapeople@aol.com
Atlanta , USA
May 15, 2004 at 19:23

To Dennis:

You brought up several important points. I know this is all frustrating and terribly discouraging, but I really want to encourage you in your battle with LE.

Please do continue or begin decongestive therapy and follow consistanly the bandaging. Its a must for you to avoid further complications. I was born with bilateral hereditary lymphedema in 1952 - decongestive therapy came along too late for me so I am a real soap-box person when it comes to getting treatment.

If you don't get the proper treatments you'll face a terrible time with fibrosis and infections - both of which lead to worse lymphedema. With treatment, you can get that leg down so much that you'll be will able to enjoy a better life and be able to do so many more things you enjoy.

I understand the embarassment about your leg. For 52 years, I have been stared at, gawked at, called a freak and everything else.... but you just somehow how to develop the attitude *&*% you - if people stare, now I look them square in the eye - its usually them that crawls into the hole, not me. Swimming is the absolutel best exercise a person with lymphedema can possibly do. The gentle pressure of the water acts much like decongestive therapy.

If you leg is still red and hot, that tells me you continue to have underlying infections... your infectious disease doctor should be on top of this. Has he done cultures and or you on any type of antibiotic? It is imperative that all the infection be cleared up.

Incidentally, the discoloration probably will not go away... but if you follow thru with treatment and get rid of infection, the pain level will go down tremendously. Hope you'll post back, would really love to help.

Pat O'Connor Lymphedema People http://lymphedema.omno.org

359. Debbie mickeymom659@aol.com
Gaithersburg, MD , USA
May 15, 2004 at 15:24

I have been told that I have primary lymphedema in my left leg. It progressively got worse from 1994 until 1999 when my entire leg swelled to my toes and did not return the normal. To make a long story short, I went to massage therapy and have been wearing compression stockings day and night since spring of 2000. I am 5'4" and weigh less than 110 pounds. I am now 44. It has been very depressing, especially in the summer when I can't dress like everyone else because I am self-conscious. I have four children; 2 adopted from Korea and 2 by c-sections (cause of lymphedema--I don't know). Now I have to have a hysterectomy because of a fibroid and a cyst (my mom died of ovarian cancer at age 48 and my doctor wants to prevent that happening in me and so do I) and I was so happy because I have been wanting a hysterectomy because of my mom, but now I am realizing that it could make my lymphedema worse and even spread. I am so nervous and don't know where to go for help. My gyn says that no lymph nodes will be touched during my operation, but I know that the lymph system is everywhere. I'm looking for anyone who has advice or experience with this. I am not a cancer patient (thank goodness), so I am not having radiation.

I am so upset that doctors don't know much about this condition. When I called NIH years ago to ask if any studies were being done, the guy said, "it's just a swelling". Uh . . .it's not JUST a swelling!

358. Dennis Barlow, Sr. dmb874@optonline.net
Nutley NJ , USA
May 15, 2004 at 13:59

Having read some of the Webmaster's comments and messages, I realize that I have not given my lymphodema a proper priority. I developed lymphodema in my left leg (knee to foot) in 2001 after a month long hospitalization for an infection resulting from a swim in an unclean motel pool. Starting after my recovery at home, I was totally unprepared for the gross swelling, pain and leg discolorization. When I went to my Doctor (Infectious Disease Specialist), I was first told about lymphodema. I was told that the swelling was caused by lymph gland fluid, that it was permanent and uncureable and that I should go for some physical therapy. Since my wife and I do not believe in law suits, I did not sue the motel so all treatments were paid by us. I went to a physical therapist who gently massaged the leg and my lymph glands and wrapped my leg with a 5 bandages. She had me bring my wife in to learn how to do this. She also ordered a stocking bandage for my leg (expensive and does not last long)which I used for some time. Treatments helped the swelling somewhat, but the discolorization and pain remained the same. After a while, I just used the bandaging 3 or 4 days per week. To me, the bandaging is almost as bad as no bandages. To this day, my leg swells, is red and is quite uncomfortable.

I would appreciate any information, suggestions and new treatment ideas from the message posters. I am 56 years old and ashamed to go swimming because of the leg. I desperately need advice before I go out of my mind about this.

Thank you,

Dennis Barlow

357. Pat O'Connor lymphedemapeople@aol.com
Atlanta , USA
May 13, 2004 at 21:32

This is to Linda Wyatt

Hi Linda

One option might be to put blocks under the foot of the bed. However, I did have some questions and/or observations.

Many of us have tried the wedge and/or elevating the foot of the bed and abandoned it as we saw no results from it. Also, I am generally against the use of pumps because of the possibility that the pump will simply push the fluids into the abdomen causing either genital or abdominal lymphedema.

Has your daughter received a lymphoscintigraphy test to determine where the lymph blockage actually is? Also, the most preferred treatment option today is decongestive therapy. This has proven to be the most effective treatment at safely moving the fluids in a manner that the body can safely eliminate them.

Do write back as I am very interested in seeing that she receives the very best treatment for her in her situation. I was born with this in 1952 and have waged a lifelong battle against it.

Back in the 1960's they tried the pump on me with no effect, and even went through experimental surgeries in the 1970's. I'm here for you and your daughter.

Kind Regards

Pat O'Connor Lymphedema People http://lymphedema.omno.org

356. LINDA WYATT linharchr@aol.com
BREAUX BRIDGE , USA
May 12, 2004 at 04:00

My 26 yr. old daughter was diagnosed with primary lymphedema of the right leg one year ago. Besides a compression stocking and using a pump, she sleeps with her leg on a wedge. As she moves during the night, the wedge moves also and often causes many a restless night for her. Is there a "simple" solution to keeing the wedge in place or anything else you might think of? Thanks for any help you can give. God bless!!!!

355. Pat lymphedemapeople@aol.com
Atlanta , USA
May 7, 2004 at 06:58

NECK LYMPHEDEMA - J Robson

Didn't see a response to your post on neck lymphedema, wanted to offer a few thoughts. Have the doctors been able to confirm the blackage or impairment of the lymphatics?

There is decongestive therapy for lymphedema of the neck. However, because of its rarity, many therapists may not be aware of the techniques.

Bandages Plus does offer a video on the therapy http://www.bandagesplus.com/ssen/product660.html

Also, there is much disagreement on whether or not it is safe or appropriate to use any type of compression garment on the neck because of potential breathing problems.

You may also wish to contact MLD UK - they may be able to help you locate a therapists that is trained in faccial/neck lymphedema.

Best to you

Pat O'Connor "Lymphedema People"

354. J Robson c9jcr2002@yahoo.co.uk UK
April 28, 2004 at 17:00

I first became aware of a svere case of swelling in the face and lips when i was 5, until i was 19 i was put on stone age diets had hundreds of allergy tests, biopsy's and countless days in hospital and off school/work because of the fear of being made fun off. It was only 2 years ago that i was refered to a specialist and was diagnosed with lynphodema in the face and lips a rare condition. I was having breakouts which left me looking like i'd done 12 rounds with Tyson, i am now controlling it with antibiotics but would seriously like to hear from anyone who may of heard of this or knows any further avenues to completely curing it.

keep battling on everyone

353. srikanth sachin_4_love1@rediff.com
hyderabad , india
April 21, 2004 at 17:02

I think according to my research on net lymphedema can be treated using a combination of albendazole and ivermechin for more details Plz visit http://www.lymphovenous-canada.ca/treat.htm

352. Steve SMBEERER@aol.com
Corona , USA
April 16, 2004 at 22:34

Hello again. My son Josh started his MLD treatments last week. The change in his feet is remarkable. After the second day of treatment, I bought him his first pair of shoes (Vans). They were a little snug at first, but after wearing them for a whole day in conjunction with the compression socks his feet were so soft. I could feel the bones in his feet for the first time in almost a year and a half. So far this week, his feet have reduced almost 2 cm. I can't tell you how excited I was to take him out with his new shoes on. He could not stop talking about them. The best part was that no one was staring. He was just a normal little boy for the first time!

Steve

351. Helen G greetingsfromhelen@yahoo.com
St. Petersburg, FL , United States
April 14, 2004 at 16:17

I'm glad I found this site. And believe me, having Lymphedema and somewhat keeping in control is a full-time job for me. I discovered I had this edema in my early twenties when I was a size 7, in those hip-hugging, bell-bottomed, disco days. I was a knock-out-----except for the knees and down. Though I weighed 125 lbs., my legs looked like I just had a little extra padding. I new different. Started going to doctors for answers. All I got was: "just fat". So I joined a 'women's only' health/gym club and would exercise my brains out. I wanted gorgeous legs!!!!! My face was my best feature, my body was like Britney Spears, but those calves and ankles could not fit into boots my size. So I just wore pants and no one noticed anything unusual, but I knew. As I got older, things began to show more. More fattiness around the knees and of course the calves and ankles as mentioned. I discovered caffeine, sugar, salt, sodium nitrite (hotdogs, coldcuts, and such) too much beef, were all a NO NO!! Sitting in a chair for more than an hour would make my legs swell, standing in one spot for more than 5 minutes made me sqirmmy, all I really wanted was to lie down and elevate my legs, my whole body!! Oh and drainage, oh yes!! Let me tell you, the best drainage would only come about was if I had a good nights sleep with my legs slightly higher. Otherwise, if I had a bad night (tossing and turning) the legs would already show (in the morning) that my edema would just be set in for the whole work day. So to work I went just to have everyone ask questions. Sure they noticed my extra padding before, but somehow this time when they saw the size of my legs beyond extra padding, made people look at me and say, "I don't envy you at all". Well that's what one co-worker said to me. So from then everyone knew, "oh she's got problems" Not one office guy would want to go to lunch with me. I forgot to mention: I wore dresses on and off, then stayed with dresses till today. But anyway, If I had to go to a meeting room at work, the guys would walk faster or slower, as not to walk with me. Hey, its a guy thing, don't want someone to think that this chick is his chick or that he's interested in her. Sure, my health was my primary concern, but so was my 'look'. I'm not going to kid you. Now at age 51, I still have my great face, and not 125 lbs, but not obese. I look good for about an hour in the morning until the lymphedema overtakes. If you were to see my legs, they look like they would belong on a woman 7 feet tall, not 5'4". My legs don't look like tree trunks, just oversized with the 'normal' shape of a leg. I do wear compression stockings, eat 3 grapefruits a day, hope that my hormones don't act up (I'm in that stage of possible menopause soon), eat plenty of high fiber this and that, NO fried anything, NO submarine sandwiches, NO preservatives, NO caffeine, NO High Protein Diet of Beef (just easily digestables: chicken, fish), NO constipation, I try to find rest mid day or right after work, Walk Moderately and breath correctly, NO high animal fat, PLENTY of fresh vegies, steamed if possible. Maybe a pat of butter. Broiled or boiled chicken, whole wheat pasta, fruit, good water, NO HIGH SALT or any of those meat tenderizing spices. And when I do indulge in maybe a cheese pizza, I make it 2 slices and a salad. NO desserts for me, and if I have a piece of cake or pie, then that's it for the week. So yes, I do have my favorite foods and goodies. However not constantly. If I eat a fast food breakfast, lunch and dinner (like McD's, Burger K, etc) YOU SHOULD SEE MY LEGS! at the end of the day!!! I cry myself to sleep at times. So ladies and gents, enough about me. I wish you well and strength to keep this edema under control. Like I said, for me its a full-time, not part-time job. But I have my interests and outlets, and I enjoy the things I enjoy (I know you know what I mean). So may the positive forces be with you. Today, I've read this site and say this to you, "You are all beautiful people" Bless you all. Sincerely, Helen

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