Doctors want to ignore this

[guit30]

One thing that I have noticed in reading thes posts is that doctors do not want to deal with this, they just say it is normal and go home, I had to fight to get bad therapy, Why don't they have doctors that are specialists in this, is is that rare? I think it is. I am 56 and never heard of it til I got it. I don't think anyone seems to know the real truth about it, look at it, no medication available, some doctors give water pills wrongfully. From reading polls, it seems that A pump does not give lasting results, neither therapy. Anne on this site seems to care about the people who have it more than anyone else. I have bipolar illness and depression, chronic pain , both of these things also cause stigmas, I am a Christian and am afraid to drive out of my neighborhood, because I get so fatigued from Lymhe, lack of sleep, That I have alost had several accidents. Did have a 1600 dollar fender bender on the way to work a couple of months agos
Jim

[delidiva]

i think you are right drs apparently know of le but have not studied it enough to know what to do as far as meds, if there r any,which i doubt my onocologist says to me i hate this disease so much but when i ask if any new ideas have come up he says no so what does that tell you? my infectious disease doc didn't even know what it was ,i have been filling him in on my condition only, i can't speak for anyone else we are all so different in our illness but i see him every so often to renew my antibiotic that i keep on hand and my daily dose one also my onocologist had me on penicillin daily but i kept getting cellulitis and was hospitalized several times when they finally got me a infectious disease doc so now that part is good penicillin does not treat cellulitis see what i mean about docs ? we have to make the best out of a bad situation pray alot and be ultra positive blessings to you deli diva

[guit30]

Thanks for reminding me about the PRAYER part
amen
Jim

[renita]

I saw a Dermotologist when I had Cellulitus. I had the worst case the Doctor had ever seen. He wasn't sure that's what it was at first, so he did a biopsy on it and immediately put me on antibiotics. I stayed on the antibiotics quite awhile. I only have had one break out in 4 years and with that, it was not needed to be in the hospital, they just gave me antibiotics and it cleared up after a week or two. I know the therapy for my lymphedema was and still works for me. I don't go to therapy anymore, but I do the MLD (Manual Lymph Drainage) on myself everyday. If I don't, I notice a difference. It also matters what I eat and that I get my feet elevated every day for an hour or so. I try to be very careful with my legs, but sometimes it is very hard. Accidents happen. I am using only stockings now, which I purchase through Footsmart.com They are the most reasonable and best compression and go up to a 26" calf. I hope you can find peace in this situation. I know there is no cure at this point for Lymphedema. I still take Lasix,Potassium along with other medicine, but I think the Lasix was prescribed for my Lymphedema and my CHF (Congestive Heart Failure) My Lymphedema is in my legs, my arms and my stomach and have at times had a very chubby face. My arms actually hurt to touch. I have been doing some upper body exercise for only about 4-5 min. the last few days, hoping it will help with some of it in my arms. It is easy to stop doing it, but I notice a difference when I don't and am sorry I stopped. I have to do the MLD, it really helps. I would like to know if others feel the drainage like I do. I know it sounds strange, but when I do this on myself, it's like I feel it draining through my throat, kind of like saliva glands are bursting. Anyone know what I mean?

[guit30]

What is Manual Lymph Drainage? I was never told anything about this at PT. I just wear comp hose and use a comp pump
Jim

[Ann]

Manual Lymph Drainage (MLD) is a gentle massage-like technique to stimulate the flow of lymph out of the swollen tissues. It is a very important part of your daily lymphedema treatment.

In your sessions with a lymphedema therapist he or she should be performing this as the first part of your treatment. Your therapist should also be teaching you how to perform technique on yourself. If you can't do this for yourself, a caregiver or helper can be trained to perform a modified version, known as Simplied Lymph Drainage, for you.

If you use a pump, it is very important that this drainage be performed before starting on the pump. Without MLD first, the pump can push the fluid into adjacent tissues and cause more problems.

Thanks for asking. This is an important question.

Ann

[summerraine918]

Ann, I am so glad you posted about this. This is my very first post but have been lurking for quite sometime. I have a severe case of Lyphedema in both of my legs. I finally found a Dr that really seems to care about me and wants to help. She is so determined to find out more about this disease that she drove from Ohio to Chattanooga, TN to find out more information on it. There is a hospital there that specializes in Lymphedema. It's name is The Siskin Lymphedema Hospital. She talked to several Dr's there and they told her it was the only hospital in the United States that dealt with this disease. I can't believe she made the trip just for me.
Anyways, she found a Dr in my city that deals with Lympedema and I have an appt July 21. She mentioned something about the massaging thing and drainage. I have no clue what she is talking about. I called the Dr myself and from the way it sounds it's a body massage. What I am wondering is. I can't stand anyone to touch my legs let alone massage them. I just can't imagine anyone doing that to me. My husband wraps my legs after soaking them and that's about all I can stand. Can you tell me what it exactly involves? I really worried about the pain.

[Ann]

I'm so glad you found a doctor who is willing to learn and she selected a good hospital to visit. Siskin has an excellent reputation.

About the massage. Personally I find it to be a very gentle and pleasant, experience. Tell your therapist how you feel and the treatment should be modified to fit your needs. One goal is for you to be able to have massage at home on a daily basis. When the patient is able, it is performed as self-massage. An alternative is to have someone else (such as your husband) learn how to perform the treatment for you.

It would be a very good idea for your husband go to some of the treatment sessions with you so your therapist can teach him how to perform the massage properly.

Hopefully getting started in treatment will enable you to be more comfortable.

Ann

[summerraine918]

Sorry for asking so many questions about this but, the Dr said something about massaging from the neck down. Why would she do this if it's only in my legs? She mentioned drainage. Where does the drainage go?
I went to a Lympedema clinic 5 yrs ago. At that time all they did for me was put my legs in a whirlpool for 20 mins, them pumped my legs for an hr and then wrap in compression wraps. Other than the whirlpool I do the same thing now. It just doesn't seem to help anymore. I told the Dr the procedure they went through and she said it is totaly different now. They don't use the whirlpool and they don't use the rubber backing wraps anymore. I'm anxious about going but yet very apprehensive.

[Ann]

Starting massage at the neck is very important! This area, known as the terminus, is where the lymph returns to the blood stream. Massaging here first open the drainage to allow the lymph to enter.

(1) Suggestion: Go the the website of the National Lymphedema Network (NLN) www.lymphnet.org and read their current recommendations for lymphedema treatment. I think that will help you understand better what you understand what to expect in treatment.
(2) To learn how to have your husband perform this "Simplified Massage" for you, might youo might read the book "Lymphedema Caregiver's Guide " by M. K Kearsey. It includes instructions and illustrations on how to do it.
(3) You might ask your therapist about the ongoing use of Epson salts. That is no longer used as standard treatment and it might be contributing to your discomfort.

Please keep us posted as to how the treatment is going.

Ann

P.S. There are different types of lymphatic massage being promoted but not all are appropriate for lymphedema. Some are based on alternative medicine theories. You should be looking for instructions that are specific for the treatment of lymphedema.

[renita]

There is a DVD you can puchase called "Lymphatic Drainage Massage" From Real Bodywork with Sean Riehl. It is kind of expensive. I think I paid $50.+ for this CD. It goes into the full body and most of it you can do on your own. It guides you through the anatomy of the lymphatic system, the nodes and drainage patterns, as well as contraindications and indications for lymphatic drainage massage. It can be very helpful to those who have not been shown by a Therapist how to do this for themselves.
When I was in the hospital, that is one of the first thing that the Therapist did for me and it helped so much. I still do it daily. It matters!!!!!

[guit30]

How long does it take to do? I got the book, "Learning to live with Lymphedema", It gives you vague instructions on how to do it, it also says compression pumps are out now, they need to tell all of those people telling us to use them, I think they are useless, compression stockings work, My legs and ankles are 1 inch less in circum, I hardly use the pump, it knocks me out
J