Guestbook Number 14

Numbers 326 - 350

October 28, 2003 - April 13, 2003

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350. D.A. Williams dawillims24_7@yahoo.com
Los Angeles , usa
April 13, 2004 at 05:44

I have been wearing Jobst Stockings for sometime. The edema just seems to be going into my knees. When I first was diagnosed with edema it was primarily in my ankles. Now it has spread up to the knee cap area. Is this a sign that I have some other type of disease like congestive heart failure or something. Is there a cure for lymphedema. I have been prescribed diuretics by doctors but they are not working.

I have also had a few gout attacks. Is my health starting to fail me. Will this get worse as I get older?

349. patty pattymaguire@avmats.com
st. louis , usa
April 12, 2004 at 18:58

Two months ago, I had a bilateral mastectomy. I had recurrance within 10 months of a lumpectomy, chemo and radiation. Am now 1/2 way thru this batch of chemo and have recently started physical therapy and drainage massage. I can't tell you how much reading your letters have helped me develop more questions for my doctors and therapists re: lymphedema. Thank you all so very much and God bless.......Patty

348. Steve SMBEERER@aol.com
Corona , USAa
April 8, 2004 at 20:25

My son Joshua is 22 months old and was recently diagnosed with milroys disease. We first noticed swelling in his right foot when he was about four months old. Swelling in the left foot soon followed. We have seen several doctors and all of them have had different opinions as to his treatment. It is very difficult to find doctors who have any experience with this disease! We were referred to a doctor at CHOC hospital who has had Joshua in plastic compression boots for about a year and a half. We did not see much improvement and were tired of everyone staring and commenting on them. After a bout with cellulitus in January 2004, we were referred to Stanford University. They supposedly have the premier Lymphedema research clinic in the country. We met with a Dr. Stanley Rockson, who is considered to be the foremost authority on lymphatic diseases. He is currently conducting extensive research on Lymphedema. We don't feel like we learned anything new! He has referred us to a MLD therapist in Temecula, California, whom he says in one of the best in the country. I wish someone could give us some definite answers! They are great at giving you the textbook definition of Lymphedema, but are unable to give us a definite prognosis. He could grow faster than the disease progresses and never have a problem or he could have lifelong problems. Very frustrating! My wife and I want to have more children, but are very hesitant. We have seen a geneticist and have been told the probability of this occurring is very low. This disease has never occurred in either of our families before. They believe that it was just a mutation that started with him, but the best odds they can give is a 50% chance or less.

I would like to hear from others that were born with this disease and find out how it has progressed and what has worked for you.

Thank you, Steve Beerer

347. Haddie haddie28532@yahoo.com USA
April 8, 2004 at 05:53

I was diagnosed with Lymphedema in 2003 after a major infection in 1999 and a really bad time with swelling and illness in 2000-2003. This is what I have found out about this condition.

1 It is chronic once it is Lymphedema stage 2 (uncurable) 2 Surgery on an affected limb or area only makes it worst 90% of the time 3 Manual Drainage Massage, wrapping, and compression stockings do help (stocking's come in all colors, sizes, and compressions needed) 4 A good Lymphedema Therapist can be found in alot of areas (call Physical Therapy places and ask if qualified Lymphedema Therapist on staff) 5 You must learn to help yourself with this as otherwise it can become expensive (qualified therapist can teach you alot) 6 Stay off your feet as much as possible 7 Put feet up as much as possible 8 See doctor about pain control or pain management 9 You can work to help control it and keep it from getting worst 10 Be careful to not break the skin on affected area and see doctor immediately if you get infection of any sort 11 The pumps are not much help unless you are stationary for long times so save money (95% of time the pump only pushes the fluids to other parts of your body and causes more swelling there; does not help drainage)

I have total body Lymphedema ( both arms, both legs, abdomen, face and throat, and well just about any other place you could name) and I will continue to fight this forever.

346. UWAEZUOKE UDEGURU@yahoo.com
ABA , USA
April 7, 2004 at 14:46

I LOVE THE PAGE.

345. Marg Bowen margfb@yahoo.com
Lacey, NJ , USA
March 29, 2004 at 15:02

I was just diagnosed with lymphedema, although I have had it for about 2 yrs.It went undiagnosed because it was in my legs, feet, arms, hands, face, stomach: pretty much all over. I do not have cancer thankfully, and the doctors, of which their have been many, do not know the cause and only diagnosed by the process of elimination.

I'm having a problem with my insurance company as the doctor prescribed massage therapy first as it is in so many places, and PT would put me on disability and I really cannot afford it as I now work a FT & Pt job. So I'm interested in acupuncture as an alternative. If anyone has experienced this, I would appreciate an email.

Thanks for listening,

Marg

344. J Miller eye2eyej@yahoo.com
Chicago , Cook
March 28, 2004 at 23:04

I was just diagnosed with lymphedema about 3 weeks ago and I am always on my feet because I am a chef. I just do not understand how to stop the pain in my legs. I wear surgical stockings but the pain is still constant. Does that mean I have to change my career?? I do not know why this illness has picked me but it is a painful one indeed. I would appreciate any input anyone would like to share with me.

343. Gloria Gloria9281@aol.com
Brooklyn, N.Y. , USA
March 28, 2004 at 05:05

Would someone be good enough to describe lymph drainage for lymphedema of the arm? Also, how does one go about finding a therapist for this? Thank you all.

342. Tania USA
March 27, 2004 at 15:38

Has anyone seen a kinesiologist for their lymphedema? If so, what were your results?

341. chloe douglass alfychloe@aol.com
gillingham kent , united kingdom
March 26, 2004 at 16:28

I have just visited this site and although most of you have got or had cancer which has caused your lymhphedema, I fortunately have not had cancer, but was treated for arthritis for a few years. My left leg became very swollen and I was eventually diagnosed with lymphedema 2 years ago. I am attending the clinic at St Thomas Hospital in London and was told the illness is genetic. I was also told this is what used to be called elephantitus. My left leg is three times larger than the right and I find it very difficult to get around as the leg is heavy and tight all the time. I am waiting at the moment for surgery, but all this will do is remove the glands and excess flesh from my legs. What I would like to know is, if anyone has had this operation done and how have they coped after?

340. Cyndi Ortiz NVLymph@aol.com
Henderson, NV , USA
March 19, 2004 at 06:59

The information regarding pumps not stimulating remaining lymph nodes is only partially correct. Manual lymph drainage is very beneficial in accomplishing that. Pumps are used as a bandaging alternative. Pumps apply external compression and in doing so, milk the excess edema causing fluid back into the vascular system for removal from the body. Pumps can be an extremely beneficial method of treatment as long as they are used properly, and the correct pump is used. You want to use a gradient pump, which means the pressure is graduated with more pressure at the foot than at the thigh or more at the hand than the shoulder. You also want to find a pump that operates on a 30 second cycle versus a sixty second cycle. The more chambers the more effective they are, as it mimics manual lymph drainage more than the pumps that compress longer. Also make sure you never ever obtain a pump from a provider that does not properly instruct on its use. Shipping is not appropriate unless you are just replacing an old pump you have already been using. Stanford University published a clinical study in the Cancer Journal that compared treatments on post-mastectomy patients. One group received MLD with bandaging, One group received MLD with a pump, and all received graduated compression stocking garments for daytime compression. The group with MLD and a pump achieved the best results. When the right pumps are used properly, they can be a fabulous adjunctive therapy for lymphedema.

339. Gayle Roskelley-Brown gbrown538@aol.com
Modesto, California , USA
March 17, 2004 at 23:42

I have had Lymphedema for the past 15 years. I had to diagnois the problem myself through information I read on the internet five years ago. I'm not sure how I even got the problem. I am so tired of not having a doctor who knows what Lymphedema is, and how to treat it! I could really use a good profesional. I have had Manual Lymph Drainage and bandaging, and also a Circ Aid to wear at night. It took me almost 2 years to get them. Mean while, my legs are worse. I am so depressed. I feel just like Marjorie from Chile. I have been so hurt by not being able to play with my 7 children, and to not be able to clean my house, kneel, or take car trips. I am also poor, and have been on Medi- Cal for the past 1 1/2 years because my husband has been out of work. (The treatments I have had, were when I had health insurance). I need a pump, and something to wear durring the day, other than stockings or bandages. I am in stage 3 Lymphedema.

338. Kathie Wood billkate@comcast.net
Brier , United States
March 12, 2004 at 21:10

I was diagnosed with stage 2 breast cancer 9/24/02 and underwent 2 lumpectomies & an auxillary lymphnode dissection to the left breast & arm. All my medical care has been through the Univ. of Wash. & the Seattle Cancer Care Alliance. After surgery I underwent 6 months of chemo & then 38 radiation treatments, with the last 8 being radiation boosts to the tumor sight. Approximately 2 months after the surgery I was diagnosed with stage/level 2 lymphodema. I exhausted all my annual physical therapy benefits to regain control of the lymphodema and then first purchased an over-the-counter compression sleeve & glove which did not work for me. I was later fitted for a custom sleeve and glove, which my insurance paid for. I am an accountant, and continued to work full time throughout my treatments, so that I could retain my insurance benefits. On 2/5/04, I underwent bi-lateral carpal tunnel surgery, which in turn caused additional flair-up of the lymphodema in my left arm and hand. I have been undergoing daily lymphatic drainage massage through the Univ. of Wash. since 2/17/04 and am finally seeing results once again. I have to keep my left arm & hand wrapped in cumbersome bandaging 24 hours a day. I do exercises daily for the lympodema, and try to control my salt intake and drink plenty of fluids. Unfortunately I am about 85 lbs. overweight which I believe contributes to the lymphodema. I have also used acupuncture to assist with the lymphodema, but the juries still out on the effect. I belong to Team Survivor NW and participate in many of the activities they provide. In addition I plan to attend a lymphodema support group offered by the cancer lifeline here in Seattle. I have been advised by 2 physicians and 2 physical therapists NOT to waste my money on a pump, as they do not stimulate the remaining lymphnodes in the body to accept the additional lymphatic fluid. If I can provide support to anyone, please feel free to email me.

337. Cyndi NVLymph@aol.com
Henderson, NV , USA
February 28, 2004 at 23:07

What a great website and source of support!!! I have been working to help those with lymphatic and vascular disease for twelve years, and would like to offer information for anyone who may need it. There are sooo many awesome treatment options available that will totally make your lives much easier. I work with providers all over the US, so I would be happy to provide names and phone numbers should you all need it. I may also have helpful hints too. I have put together a Lymphedema Patient Rights Bill, and provided it to members of the US Congress that will require much better coverage by both Medicare and Private Insurance Companies for treatment. Basically, if your doctor orders it, they will have to cover it should this bill pass into law. So far, Congresswoman Rosa De Luro of Connecticut has agreed to help sponsor this bill in the congress. For more information you may contact me via email at NVLymph@aol.com or 702-897-0841.

336. DELORES SMITH tommysgirl7167 @ aol.com
TALLADEGA , UNITED STATES
February 23, 2004 at 03:25

HELLO, I WAS DIAGNOSED WITH BREAST CANCER IN 1991 & 1992. I WENT THROUGH SURGERY AND CHEMO & RADIATION TREATMENTS. I WAS ON TAMOXIFEN FOR ABOUT 10 YEARS. I HAD NO PROBLEMS TILL I WAS TAKEN OFF MY TAMOXIFEN,AND NOW I HAVE LYMPHEDEMA IN MY LEFT ARM. I WENT THROUGH PHYSICAL THERAPY LAST YEAR AND MY THERAPIST REQUESTED THAT I GET A COMPRESSION SLEEVE. THIS REALLY SEEMED TO HELP ALOT. MY ONOCOLOGIST SAID THAT IT WAS RARE THAT I STARTED HAVING PROBLEMS WITH SWELLING AFTER THIS MANY YEARS . I KNOW THAT THERE ARE LOTS OF OTHER PEOPLE WITH LYMPHEDEMA AFTER BREAST SURGERY. I WOULD LOVE TO HEAR FROM OTHERS WITH MY SAME PROBLEM. MANY THANKS FOR YOUR TIME.

335. Tamie circle_of_faith@hotmail.com
Indiana , USA
February 22, 2004 at 03:55

I should tell you all that when my Lymphedema was mistaken for Rheumatoid Arthritis I was put on Salsalate (a.k.a. Salaflex or Salycate) a Non Steriodal Anti-Inflamitory Drug and it took the swelling in my Left foot down by about 75% and got me back to wearing the same size shoe on that foot as my normal foot. I had been wearing a size bigger. I haven't heard much about Lymphedema being treated with NSAIDs. But obviously it has helped me a great deal in my foot, unfortunately not in my hands though. Its worth trying if you can.

334. Tamie circle_of_faith@hotmail.com
Inciana , USA
February 22, 2004 at 03:48

My name is Tamie and I have recently been diagnosed with Primary Lymphedema. The swelling began in my left foot at the age of 13 and started in my hands during my 1st pregnancy at 19 years of age. It took 15 years and 9 doctors, the 9th being a Lymphedema specialist to diangose this. And many of the other doctors said the swelling wasn't that big of a deal. Once it was misdiagnosed as Fibromyalgia. I am all for doctors being further educated in this field!

333. Gloria Gloria9281@aol.com
Brooklyn, NY , USA
February 4, 2004 at 01:28

May 1 will mark seventeen years since the bilateral mastectomey - modified radical. I knew that the left side had to be watched, and have been quite careful over the years not to carry anything heavy on that side. I've had a couple of slight swellings of the arm after exercise in a gym which I stopped immediately. Lately, have been picking up my grandchild, about 25 pounds, and I believe I have developed arm edema. I understand that it will not go away but the arm band can control it? Tomorrow, I am scheduled for a chest cat scan (sp?!) at the suggestion of my doctor. I'm pretty frightened. Thank you for any information anyone will be kind enough to share.

332. Sherri yogasher@comcast.net
Dallas , USA
February 2, 2004 at 03:55

I am a yoga instructor, and one of my students has asked for specific asanas (poses) for those with lymphedema, which I can find NO WHERE. Can you help me? Thanks!

331. Eleni hboukis@juno.com
Flushing , USA
January 14, 2004 at 21:32

Help! We are DESPERATELY looking for help. My mother has secondary lymphedema of her right leg. Her history is: she had a radical hysterectomy in '92 and radiation therapy following because of cervical cancer. Six months later she developed lymphedema and cellulitis of her right leg and was hospitalized. This poor, lovely, lady who deserves better than this, has been hospitalized over ten times for cellulitis over the past 11 years. 2003 has been an absolute nightmare because she was put in the hospital 4 times for cellulitis and been given intravenous antibiotics. She also has avoided going to the hospital by taking oral antibiotics when she feels the cellulitis coming on. All these antibiotics can't be very good. Why is she getting so many infections? Will it ever stop? She is meticulously clean regarding her hygiene, bandages her leg every day and tries to take care of it. She is now also experiencing lympedema in her genitalia and the last couple of infections have started in the lower abdomen and gentalia. This is getting so nightmarish. Years ago, she went to Dr. Lerner's Lymphedema Center for therapy so she learned the whole routine. He has since retired. I don't know where to turn. She is getting increasingly depressed and frustrated and has said she wants to give up. She is free of cancer, thank God, but her suffering continues with the lymphedema. Can anyone help with information about her frequent infections? or where to go in NYC? Please email me or answer in this website. Thank you and God bless you all and good luck to all of you.

330. Geeta Bissoon rani60@msn.com
Rousillac , Trinidad and Tobago
January 10, 2004 at 01:39

Hi Yvonne, I joined this network when it started in February 2000. I am 44 years now, never married and still works in the bank. I have had lymphedema in the right leg for 22 years and it is a challenge. A vegetarian diet really helps as the meat keeps away the toxins in the body. I have found that stress of any kind impacts negatively on the leg. I have been using the Sigvaris compression stockings for 22 years at daytime and I can't do without it. I have found Sigvaris Stockings are really the best. Also elevation of the feet at night is a must and a good Craftmatic bed helps, by the press of a button, your leg is elevated. I get all my footwear which is most comfortable from Easy Spirit. They have comfortable shoes. I had a lymphshunt operation in 1986 in London which also helped but didn't get rid of the LE. You can lead a normal life, but it is really a challenge. Groups like this help to give consolation that you are not alone and I wish I can be part of a bigger movement to really help people understand that all is not over with LE. Happy New Year to All

329. hhenderson hollylind@aol.com
Los Angeles , USA
January 9, 2004 at 15:15

I'm a thirty-five year old female with primary lymphedema -- left foot/calf swollen. Does anyone know if there is a coorelation between primary lymphedema and hormone imbalance/thyroid/etc? I just went to my obgyn for a complaint of missed periods and lactation (i'm not pregnant) -- and my prolactin levels came back high. I have an appointment in a month with an endocrinologist to figure out the cause.

328. Fitsum Fitsums@hotmail.com or Fitsum@xmsg.com
Addis Ababa , Ethiopia
December 30, 2004 at 10:35

Hi My name is Fitsum Negussie I am 25 yeas old male .I had lymph edema for the last 14 years because of some accident on my leg while playing football. here in my country there is no lyephedema therapists I am living with my complicated situation with out any treatment or any advise for the past 14 years but I know well about lymph edema I learn more from internet . I always wear elastic bandage at a daytime and I freely move place to place .Any one who talk about my case I will replay him or her soon.

Fitsum

327. mary cariboo72@aol.com usa
November 14, 2003 at 06:35

Hi, my name is Mary. My dr. had me go to a vascular surgeon because of my leg swelling. He said everything else was ok, but he thinks I have lymphedema in my lower legs. He gave me a rx for compression stockings and said if I loose weight that will help too. Does anybody know if they really work? Someone told me they hurt. Will I have to wear them day and night? Will I have to wear them the rest of my life? My legs have been swollen for years, but keep getting bigger probably because I have gained weight. I also have overactive thyroid -mild graves disease. One dr thought my calf swelling was from overproduction of hormones from my thyroid, but my other dr did not agree. So this is where I am at. I am 36 years old and otherwise in good health. Any advice or email would be appreciated. Thank you.

326. Marlous Vervoort marlous13@hotmail.com
Schiedam , The Netherlands
October 28, 2003 at 09:49

dear yvonne, I'm making an assignment for school, about elefantiasis. It's very hard to find any information about this subject. I've got to know some things about this deases: the history of this desease, when is elefantiasis been found? where it came from, how many people are infected, are there getting more people infected, or is het getting less? what can you do about it, can it be cured, if yes, in what stage? how can you be sure your deseas is elefantiasis? what happends when you're getting infected, what are the symptones? I hope you can send me some stuff so I can make my assignment. You know a lot about it, so I think you can help me... Some own experiences are welcome to, maybe I can interview you??? Thanks! With love, marlous.

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