Guestbook Number 16

Numbers 376 - 400

July 9, 2004 - September 4, 2004

Kinesio Taping

Just found this web site and thought I would introduce the company Limb Volume Ltd. Limb volume specialises in the supply of Lymphoedema treatments. However, they also the official supplier of Kinesio Tape. Kinesio Taping has gathered huge interest in much of Europe and has huge success when treating Lymphoedema.

Kinesio Tape is like a bandage. However, it is very unique in that it takes a totally different approach. Instead of bandaging for compression, Kinesio Taping is used to support the mussels and skin and can be used to directly aid Lymphatic Drainage. It does not replace other treatments, but the technique has had amazing results with many people saying it's like having MLD 24 Hours. The Tape is designed to be worn for up to 4 days and because is supports the body, it also aids movement and increases mobility.

For more information, visit Limbvolume.com
[Lymphedema patient].

395. Lisa Ford Giantss12@netscape.net
Virginia Beach , USA
August 30, 2004 at 14:08

Back in 1997, after loosing an excess of 200 pounds I needed skin removed from my legs. I went to see a plastic surgeon, here in Virginia Beach. He showed me pictures of what my legs would look like after surgery. However he did not show me or ever mention the word Lymphedema. So needless to say my legs never looked like the picture. I have gone through MLD treatment, Bandageing, Wearing a brace and at 44 years old very depressed about my legs, mostly my left leg. It swells to 4 times it's size. Now I am researching more therapy and new ways to keep the swelling down. I just got out of the hospital with an infection in the left leg. This took about a month to clear up. In the hospital then at home with IV's and a visiting nurse.Thanks for listening Lisa
[Lymphedema patient].

394. janet olivedawgs3@aol.com2nd time around
sandusky , U.S.A.
August 28, 2004 at 21:59

Second time around for lymphedema in right leg. Hodgekins lymphoma twice, lymph nodes removed from right and left groin. So far left leg OK.
[Lymphedema patient].

393. Cyndi NVLymph@aol.com
Henderson, NV , USA
August 28, 2004 at 19:55

If anyone needs a really good letter of medical necessity for treatment, you can email me and I'll send you one. I have one that makes denials extremely difficult. Feel free to change it around so that it's applicable for your needs. I can just email it as Microsoft Word document as an attachment, and then you'll have access to make the changes pertinent to your specific needs. The President of a very large insurance company helped me write it. He is the President of an insurance company and a doctor so since he told me more about what utilization people are looking for, that has been extremely helpful in getting approvals for treatment of MLD and external compression devices.
[Lymphedema patient].

392. Cyndi NVLymph@aol.com
Henderson, NV , USA
August 28, 2004 at 19:50

Hey Everyone who may be having problems with insurance coverage. There is an accredidation company that many insurance companies are certified through. This company is associated with JD Powers and Associates. They monitor utilization management and consumer satisfaction. Their website is www.URAC.org. If you go to that website, look on the left hand side for Consumer Information. Click on that. Then, you can click on the option to file a complaint. This company will investigate and help you get the help you need, if your insurance company is accredited through URAC, and most are. Insurers don't want a dink against them, so that should provide assistnace with getting the disease management for lymphedema.
[Lymphedema patient].

391. Pat O'Connor lymphedemapeople@aol.com
Atlanta , USA
August 25, 2004 at 14:34

Hi Trish

What a nightmare!! Really upsets me to hear of things like this happening to people. Here's a big hug - there is treatment that can bring the lymphedema under control. These are a couple links that can provide you with resources in Australia. You may have to cut and paste them into your browser -- http://lymphedema.omno.org/thesite/lymphedema_therapists_australia.htm -- and -- http://lymphedema.omno.org/thesite/lymphedema_organizations.html -- in the second link scroll down has a complete listing of lymphedema organizations by state (Australia) - here is also a list:

The Lymphoedema Association of Australia Address: 94 Cambridge Terrace, Malvern, SA 5061 Telephone: (08) 8271 2198 Fax: (08) 8271 8776

Email: casley@internode.on.net

Web: www.lymphoedema.org.au

--------------------------------------- ACT

Lymphoedema Support Group Address: 19 Bardsley Pl, Holt, 2615 Telephone: (02) 6254 4753 Contact person: Jenny Moore

-------------------------------------- NSW

Lymphoedema Support Group of NSW Inc Address: 204/9 Everton St, Pymble, NSW 2073 Telephone: (02) 9402 5625 Contact person: Ms Barbara Smith

-------------------------------------- Support groups are being set up at Westmead, Mt Wilga Hospital, St George Hospital and Royal Prince Alfred Hospital for lymphoedema. Their aims are to provide support for people living with lymphoedema and provide education and information on lymphoedema. Meeting details can be obtained through the following contacts:

♥ Westmead: Lara Griffiths on (02) 9845 6500 ♥ Mt Wilga Hospital: Barbara Smith on (02) 9402 5625 ♥ St George Hospital: Lianne O'Brien on (02) 9350 2163 ♥ Royal Prince Alfred Hospital: Sally Latchford on (02) 9515 9965

Charge of $2 per person to cover coffee/tea/biscuit costs.

------------------------------------------ Northern Territory

Breast Cancer Support Group, run by the Cancer Council NT

For more information, contact:

Cancer Council of the Northern Territory Address:PO Box 42719, Casuarina, NT 0811 Telephone: (08) 8927 4888 Fax: (08) 8927 4990

------------------------------------------ Queensland

Lymphoedema Association

Address: PO Box 3068, Bracken Ridge QLD 4017 Telephone: (07) 3269 1498, page (07) 3833 4376 Contact person: Nerida Smith (President)

-------------------------------------- South Australia

Lymphoedema Support Group of South Australia Inc.

Address: PO Box 1006, Kent Town, SA 5071 Telephone: (08) 8336 7748 Contact person: Maureen Bartell (President)

-------------------------------------- Tasmania

Lymphoedema Support Group

Address:42 Stanley Street, Bellerive, TAS 7018 Telephone: (03) 6244 4634 Contact person: Ms Jill Wood

-------------------------------------- Victoria

Lymphoedema Association of Victoria

Address: PO Box 2412, North Ringwood VIC 3134 Contact person: Jocelyn Mason Email:info@lav.org.au

Website: www.lav.org.au

-------------------------------------- Western Australia

Lymphoedema Association of WA

Address: PO Box 2037, Claremont North, WA 6010 Telephone: (08) 9497 1378 Contact person: Ms Dorothy Rich (Secretary

Hope this helps - keep the faith - we are all here for ya

Pat O'Connor - Lymphedema People
[Lymphedema patient].

390. TRISHA SCREED@OPTUSNET.COM.AU
SYDNEY , AUSTRALIA
August 25, 2004 at 14:15

HI MY NAME IS TRISHA I AM 32 YEARS OLD AND HAVE BEEN TOLD THAT I HAVE LYMPHEDEMA I HAD VEINS REMOVE FROM BOTH LEGS AND IN MY LEFT LEG THE LYNPH NOTES WERE REMOVE OR TOUCHED I THINK THAT THE DOCTOR THAT DONE IT WAS INEXPERIENCED AND MADE MISTAKES BEFORE THE SUGERY I TOLD HER I HAVE FOUR SMALL CHILDREN TO LOOK AFTER SHE TOLD ME SIX WEEKS ILL BE FINE NOW I AM DEPRESSED HAVE SLEEPLES NIGHTS AND ONE BIG LEG I AM TRYING TO GET SOME TYPE OF THERAPY BEFORE IT IS TO LATE CAN ANY ONE EMAIL ME SOME ADVISE PLEASE
[Lymphedema patient].

389. Pat O'Connor lymphedemapeople@aol.com
Atlanta, GA , USA
August 22, 2004 at 18:55

Hey Mike

Welcome!! Must be an incredibly frustrating situaiton for you. had some thoughts. First, have you appealed the decision? If not, find out the exact procedure for appeals. Then file a formal written appeal. If that is turned down than there are other avenues you might be able to pursue. California has a law that requires insurance companies to provide all necessary treatment for lymphedema (IF) the lymphedema is a result of breast cancer. For lymphedema from others sources (hereditary, injury, infection, other cancers) it has been pretty much up to the insurance company. I'll write a friend who is super knowledgable on the California laws and see how they might be applicable in your situation. Also, are you under Kaiser or Northern or Southern California? Write back, either posting or contact me at the email above - lets see what we can do!!!Best to You - Pat O'Connor - Lymphedema People
[Lymphedema patient].

388. mike mmmonforte@hotmail.com
los angeles , usa
August 22, 2004 at 08:01

hi, I am 31 and I 've got lymphodema on my left leg for 6 years Kaizer Permanente Hospital is my provider and they prescribed compression garments, that I am wearing for 4 years, but beside that they didn't do anything for me. They didn't want to do any PT or MLD, they mention about compression machine but I ve got a letter that I am not eligabale for home support, since I am able to work I had cellulitus twice this year, once in February and once in June been takin Keflex for 10 days in each of the cases don't know how to fight it or what to ask in Kaizer or where to look for help
[Lymphedema patient].

387. Pat O'Connor lymphedemapeople@aol.com
Atlanta, GA , USA
August 11, 2004 at 04:53

Hi Nicki

I so admire your daughter's determination and courage. Let her know too that i know of teens with lymphedema that are cheerleaders, on baseball teams - all sorts of activities.

As someone who grew up from day one with lymphedema of the legs, I was always doing something. Broke one arm wrestling, the other playing soccer, loved running, football, swimming (yes even jumping out of trees and off buildings).

To me one of the saddest things about lymphedema is when people quit living life. You don't have to be a couch potato and stay plastered to a chair jsut because of lymphedema.

Give her a hug and tell her from an old timer - never give up your dreams - life is far too important and has too many wonderful adventures for her to look forward too. By the way, absolutely love skating and almost never miss watching it - we will all look forward to seeing her! Pat O'Connor, Lymphedema People
[Lymphedema patient].

386. Cyndi NVLymph@aol.com
Henderson, NV , USA
August 9, 2004 at 04:32

Hi Nicki, Good job on your daughter's determination. Let her know there is also a professional volleyball player, Canyon Stevens, who has lymphedema as well. He doesn't let it stop him at all. We have had difficulty with ankles from time to time. I have a couple of patients that were able to get complete reduction everywhere but the ankle. We applied athletic tape around the ankle and that took care of the problem. You may also want to check out kinesio taping. They have a website with a ton of information and it is now indicated for lymphedema. The website will also provide information on where to buy it in your area. It is kinesiotaping.com. Try that and keep us posted on how that works. Sincere Regards, Cyndi Ortiz, CCT
[Lymphedema patient].

385. Nicki methettaz@aol.com
Upland , USA
August 9, 2004 at 03:39

My daughter was diagnosed after 7 months of testing for anything that could be a cause for her persitant swelling of her right ankle and lower leg---to make a really long story short--she has bilateral lymphedema. The right ankle is the worse because it had gone so long without treatment that the swelling never goes down on the inside of her right ankle that she looks like she has no ankle. The vascular surgeon said it is primary probably due to her age--started at 13 and just turned 14. When he told her the first thing she asked him was "can I ever skate again?" You see she has been a competitive ice skater for years and of course all thought it was brought on by the intensity of the sport and training. He told her to skate--skate all she wants as long as she can comfortably. The PT she was sent to told her that the compression of her skating boot and the pumping action of the skating motion actual helped move the fluid out of her foot and ankle and up her leg. You can tell this is correct when she takes her boot off the swelling starts at the part of her leg where her boot stopped and her ankle looks almost like an ankle. I even contacted a PT which had worked with National and Olympic skaters and verified if I was doing the right thing by letting her skate. She told me "absolutley". There are some things we must watch carefully but let her pursue her dreams. She does the MLD at night, bandages, and does exercises for both legs. She has been experiencing numbness to her right toes and foot which make it difficult to jump. At her most recent competition she skated her short program with numbness in her toes and foot. I could tell that it may be happing as she was tapping her right boot at the toes against her other boot right before they anounced her name. She skated the most beautiful program to LOVE STORY that I have ever seen her skate landing a double axel and a triple/ double combo (stepping out of the double) it brought tears to my eyes. On the way home I asked her how she can land jumps if she can't feel her foot and she then told me that she can hear her blade of her skate touch the ice and she knows she has landed---that if she didn't hear it she wouldn't know it until hr "butt hit the ice" I was amazed but when she skated her long program the next day she had numbness occur up to above her knee and fell on almost everything BUT attempted everything and landed some jumps and finished her program. I finally put my foot down and told her we needed to make an adjustment to her boot to relieve the pressure off the nerve under her ankle bone because she couldn't risk gong numb like that again----she may break somethng. The swelling in that area never goes away. The adjustment was made two days later and so far it been better. She's doing her best to manage the condition and vowed to not let it stop her from skating. She is one gutsy kid and I hope she can continue to do what she loves most. For her controlling the swelling and making some adjustment to her footwear and her skating regimine, so far, knock on wood, she is doing as well as we can expect.
[Lymphedema patient].

384. Laurie glrefyd5@yahoo.com
Cortland , USA
August 4, 2004 at 17:22

I just found out yesterday, Aug.03,2004 at the Cleveland Clinic Foundation, in Ohio, I have lymphedema. I have gone from doctor, to doctor, looking for relief, from swelling, and pain. This all started almost one year ago. January, of this year I was hospitalized, for what the doctors thought was congestive heart failure? I have had, shortness of breath, chest pains, swelling in my lower extremities, (severe swelling) and constant pain. My abdoman has grown, and does everyone get the same response? LOSE WEIGHT? Hello, I was thin before all this took place in my body, and has made me feel like a big overstuffed water baloon, let alone look like one. Why is this an incurable disease? I know GOD can cure it, and he will. What about those who do'nt believe in GOD, what are they going to do? I am a fourty four year old, so where do I go from here? I have been off work on medical leave, since April of this year. Needless to say I am losing a bunch of money, and my company is not to happy either. To all of us with this disease, GOD BLESS YOU ALL, and I will keep you all in my prayers. Have a GREAT DAY!
[Lymphedema patient].

383. Linda fergfarm@ascent.net
Oneonta, NY , USA
August 4, 2004 at 10:37

I have LIPedema, there seems to be no sites out there for that, I was first told I had lymphedema, but because my feet are not swollen , they changed the DX I am not a DR going person, frankly I think-- ( NO, I KNOW) there are many out there who do not know or care and frankly all my life being fat and getting very negative comments, looks and ---well , you know the story. I really look toward alternatives rx's for all I can. I just have little faith in Drs-- not that I would not go when I have no choice. I am very obese. I find that elevation as much as possible and swimming is best for my leg. From the original first two "infections " I had the "rash", "redness" became a scar and the dots around it , sometimes will become brighter or less depending on temp.-- But it nevers goesaway completely and after two- going on three years, I know it will always be there. I have been told that lipedema, could be complicated by lymphedema someday, which I pray it won't. I know that there are people out there that must wear stockings, but for mr now , I feel that the restriction is a bad thing and circulation in and out of the leg is important. I, like most of the mail I read feel life's restriction with this a very bitter pill to swallow, but I try to do the best I can-- as I said before swimming is best for all of us and saving my money to get a better swimming pool is always a thing I am doing and I try to think about other things and live my life "with" this . God Bless all and am always glad to hear from others (esp with LIPedema). Linda
[Lymphedema patient].

382. Pat O'Connor lymphedemapeople@aol.com
Atlanta GA , USA
August 2, 2004 at 15:21

Hi Alice

The amount of bandaging and therapy required is based upon your individual situation. Hopefully, your lymphedema can be managed with a compression garment instead of having to wear a sleeve or the wrapping. Here in Atlanta, the heat and humidity is so bad, I don't see how anyone can wear a sleeve at night.

Paroven is a drug used to prevent fluid accumulation due to blood flow disorders. Examples would include venous pooling, chronic venous insufficiency. It is contraindicatd to edema caused by heart disease, diabetes and liver disease. Also, since it works of the cardiovascular system it would have no affect on lymphedema.

I understand how overwhelming it is right now - had two cancers and the lymphedema too..... here's a big cyber hug for ya!

Pat O'Connor - Lymphedema People - http://lymphedema.omno.org/
[Lymphedema patient].

381. Alice Cannistra acannistra@stny.rr.com
Oneonta, NY , USA
August 1, 2004 at 01:52

I had breast cancer, a lumpectomy and lymph node dissection surgery in 1999. I developed lymphedema in my right arm one year, almost to the day, after the lymph node surgery. I am currently going through MLD Therapy but have read some information about Paroven. I would be most appreciative if any of you who have tried this drug and have had any success would respond. Should I pursue this?

I am also curious about follow up bandaging after my time with the therapist is over. I have heard stories ranging from having to bandage every night for at least a year after MLD therapy, to those who just used a compression sleeve. This is all so overwhelming and right now, being bandaged to the armpits in hot weather (right arm only, thank God!) is very disheartening.
[Lymphedema patient].

380. Pat O'Connor lymphedemapeople@aol.com
Atlanta, GA , USA
July 29, 2004 at 14:31

Hi Jennifer

Welcome to the Guestbook, appreciated your post. Just wanted you to know too, that as a 51 year Milroy's person, I'm here for you as well. If you ever have any questions on what to expect or how to deal with or handle something, drop me a line. I am so encouraged to hear more and more that doctors are diagnosing Milroy's in infancy - when treatment can begin immediately. He will be spared so many of the complications we used to face. Back in the dark ages, I wasn't diagnosed until I was six years old and none of the modern treatments were available or known about then. With a mom like you to encourage and support him, your son is going to have a great life. Best to you both! Pat O'Connor - Lymphedema People - http://lymphedema.omno.org/
[Lymphedema patient].

379. jennifer Chavez lovely liz11@verizon.net
riverside , usa
July 26, 2004 at 01:02

I am using my sisters e-mail as I don't have any set up yet but I have a 6 month old son with milroy's or congenital lymphedema and we have been goiong to physical therapy for about 3 months now and I have learned how to care for my son with massaging and compression wrapping. His progress is wonderful and if I could be of help to anyone I would love to , I remember how scared I was when my son was born with both of his legs, feet and an arm severly swollen so if I can be of any comfort, please contact me through my sisters e-mail. I would like to talk to those of you who wish to reply to understand more on what my son is and will be going through.
[Lymphedema patient].

378. Pat O'Connor lymphedemapeople@aol.com
Atlanta GA , USA
July 15, 2004 at 06:51

DECONGESTIVE THERAPY I received an email request to describe what decongestive therapy is since I have mentioned it so many times. It is the treatment of choice presently used for lymphedema.

To understand how and why decongestive therapy works, first you need to undersand exactly how the lymph system is made up. We generally think of the lymph system as these "channels" the go throughout our body and are connected by lymph nodes. However, it is also comprised of an unblievable network of lymph capillaries that network under and through the skin layers our of body. This almost microscopic network collects fluids and channels it into the lymph veins to be filtered through the lymph nodes and eventually carried out of the body. In lymphedema, because of an impaired lymph system, fluid collects in the interstitial areas (tissues) between cells. This fluid is composed of proteins and electrolytes and even includes the liquid of blood plasma. You normally have about 15 quarts of this fluid in your system. With our condition, this liquid doesn't move as it should and eventually the affected areas swells from the excess fluid, the whole system becomes "clogged."

Decongestive therapy is a massage technique that helps unclog the system. It gently moves this fluid, in the direction of normal body flow so that it can be eliminated. In unclogging the system, the tiny network of lymph capillaries are able to help move the fluid.

There are two basic types of decongestive therapy.

Manual Lymphatic Drainage (MLD): is a unique, therapeutic method of stimulating the movement of fluids in the tissues. The gentle, rhythmic, pumping, massage movements follow the direction of lymph flow and produce rapid results. It assists the cutaneous lymphatics in picking up and removing not just fluids, but all the waste products, protein particles and debris from our system. It also is successful in breaking fibrosis and fibrotic areas of a lymphodemous limb.

This treatment was created and developed Danish therapists Dr. Emil Vodder and his wife, Estrid, in the 1930's and was introduced in Paris in 1936. They are also credit with creating a specialty of medicine called Lymphology.

Comprehensive Decongestive Therapy (CDT) is used primarily in the treatment of lymphedema and venous insufficiency edema. It is a combination of MLD, bandaging exercises and skin care. CDT may also involve breathing exercises, compressive garments and dietary measures. A frequent indication for CDT is lymphedema caused by irradiation or surgery due to cancer. It can relieve edema, fibrosis and the accompanying pain and discomfort.

Also known as Complete Decongestive Physiotherapy (CDP) or Complex Decongestive Therapy (CDT).

After each session, your limb will be wrapped in compression bandages to prevent reswelling until the next session. Once the limb is down to the desired size, you will be measure for a custom made compression hosiery type garment and pressure sleeve.

WHAT HAPPENS WHEN LYMPHEDEMA IS NOT TREATED?

I sound like a broken record on urging everyone to get decongestive therapy, because for me, it came too late. By the time I had heard of this treatment my left leg (the worse one) was already beyond treatment. I have had three lymphedema therapists tell me that there was nothing that even this treatment could do.

Like most hereditary/primary lymhpedema patients (Milroy's Syndrome) my legs are not as large as lot I have seen. They are about twice the normal size. But, the left one is totally fibrotic, literally as hard as a rock. It is the hardest and most grotesque leg you would ever NOT want to have or see. As such, the infections, which have been plentiful and furious, especially during the past two years can only be controlled through months of IV antibiotics. Sometimes, I have even had to use a combination of Unasyn and Gentimycin.

It is also where the first of my two lymphomas appeared. I am now also loosing venous flow to my left foot because of the fibrosis. On my left ankle, I have an ominous and rapidly growing purplish nodular growth (soon to be biopsied). The change in this leg has been more dramatic and intense during the past year than all the other 50 years I have had lymphedema. What ever you do...get that lymphedema diagnosed early and get treatment immediately. I wish with all my heart that none of you have to experience the complications I now face.

Finally, (whew, am I not longwinded? I especially want to thank Yvonne for the new section, "FAQS on the Treatment of Lymphedema" by Cindy Ortiz , you did a five star job on your article. Special kudos to you both! I recommend everyone who visits the Guestbook to take a few minutes and read this wonderful new section.

Kind Regards to All

Pat O'Connor, Lymphedema People
[Lymphedema patient].

377. Pat O'Connor lymphedemapeople@aol.com
Atlanta , USA
July 13, 2004 at 18:53

Hey Lori

Hope you can get both that cellulitis and lymphedema in control. You didn't mention whether or not you have or are going to do decongestive therapy. It is a great treatment modality which will help tremendously on the swelling. Once the swelling is down, you risk of cellulitis decreases. Know what you've been through, I have had so much cellulitis that I now even have a port a cath in my chest for antibiotics (lymphedema since 1952 - no effective treatment back then).

Also, with getting into decongestive massage therapy, you will notice a decrease in pain too.

Kind regards,

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

376. lorie swtnhoney2002@yahoo.com
richmond KY , USA
July 9, 2004 at 18:09

Hi, my name is lorie and i just found out that i have Lymphedema, which in turn went to celluitis which really sucks :), but anyway im glad to know there is a web site and plp out here tht know how it is to have it, i have a question though, does it ever stop hurting or at least make you think it does? just send an answear to my email, i know its a stupid ? but id like to know thanks
[Lymphedema patient].

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Guestbook Number 16

Numbers 376 - 400

July 9, 2004 - September 4, 2004

See also:

Kinesio Taping