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Does M.L.D cause more problems

PostPosted: Wed Jun 23, 2010 7:55 pm
by cjhurt92
Hey, its Carlos im back home recovering from another infection,collapsed lung and bad cause of ascites. :roll:

Anyways, i Was wondering if M.L.D has caused anyone else problems? . I was talking with doctors and they want me to go back to having Manual Lymph drainage 4 times a week (its been 3years since i had it done). I told them i would have to think about it cause my theory is that MLD made my condition worse by pushing the fluid from leg to grion to stomach and getting into lungs. The Doctors don't think its because of MLD, but i do cause weeks after therapy my condition got worse and spread everywhere else.

Is it even possible? My doctors haven't been much help. so i'm currently working on seeing Dr. Witte in tuscon Arizona. I talked to her office and she's interested in seeing me. :)

Re: Does M.L.D cause more problems

PostPosted: Thu Jun 24, 2010 7:52 am
by patoco
Hey Carlos

My friend, so good to hear from you :!: :!: :!: I'm always telling people about your great work helping those with lymphedema in Spain.

Please, please whatever you do - do not - have any further MLD, use pumps or anything else that moves that fluid. You are 100% correct in your theory and the doctors are simply wrong. The MLD may not have caused the fluid build up, but now that it is there having MLD could even get into the cardio (heart) cavity and that would be disasterous and potentially fatal (causing heart failure).

I too have horrible fluid buildup in the abdomen, lungs - even show up in my back arms and hands now. The lung fluid is so bad that two years ago we installed a Pleurx catheter in each lung and I drain my lungs every three days. Each time i get about 650ml from each one.

My lymphedema doctor who is Dr. Paula Stewart in Birmingham, Alabama absolutely would not do MLD on me and my oncologist and lung doctors here agree with her 100%. They also have me on oxygen therapy 24 hours a day. Because of the fluid mashng the lungs and because of the lung damage done due to the fluid, it is so hard for me to get a healthy amount of oxygen. BTW, also they actually did find out that the fluid has damaged the lung tissues. My doctor said it is damage similar to what cystic fibrosis patients experience from the fluid they get.

We also did an all-over body lymphoscintigraphy a couple years and found that there is almost no lymph fluid movement through my thoracic region and that the right side lymph drainage network has almost totally shut down. So, remember once that fluid gets into you abdomen, it has no where to go except into the pleural cavity and eventually into the cardio cavity.

I can totally understand how you must feel both physically and emotionally. The effect of all this finally forced me to retire from work and I am unbelievably limited now in what I can do. It turned my world inside out.

If Dr. Witte will see you, please go as soon as possible. It is imperative now that they find a treatment for that fluid.

My very very best to you and don't be a stranger, I love hearing from you.


Re: Does M.L.D cause more problems

PostPosted: Sat Jun 26, 2010 4:14 am
by cjhurt92
Hey thanks Pat. I Appreciate your Quick response as Usual. Yes I'm working on seeing Dr. Witte I'm really hoping she has a solution its only been 6 years of having lymphedema and Its felt like a life time.

I had a question for you. You said you have to drain your lungs. Do you have bad breathing problems??. cause I've had The fluid in lungs for 3 years and only within the last 2 months i been having trouble when i sleep. I wake up in the morning with pain in left lung and it feels hard to breath so i get up and sit up in couch. it normaly takes an hour for pain and shortness of breath to go away. I know its obviously from the fuild i think it just accumulates from laying down. It worrys me cause I dont want to end up not waking someday. But my wonderful doctor belive its all in my head or anxiety case by the time i see them fluid goes back into stomach (or where ever its sitting) and they can't hear any problems when the test lungs. I been trying to get them to give me a breathing mask i could wear at nights . cause theres been timess where im gasping for air. But they don't think i need it and if they dont no way insurance will pay. So i was wondering if you hand a problem similar?.

Re: Does M.L.D cause more problems

PostPosted: Sat Jun 26, 2010 9:40 am
by patoco
Hey Carlos :)

Absolutely, I had the same problem. We knew that I had a slight effusion (liquid build-up) for several years. but, it wasn't a problem. The big change came in 2006. Then, i would wake up in the middle of the night having "drowning" episodes, where the fluid literally shut off my ability to breathe. Talk about fluid shifted when I was lying down and moved into the upper part of the lungs. It then got so bad that I could not even sleep in a bed. Even now, I sleep in a recliner, as every time I try to sleep in a bed, I still have those episodes.

Doctors like yours just drive me crazy. Trust me, it is NOT just in your head. Tell that dummy to fill his lungs with fluid and see how it feels and how well he can breathe. Also, and this is very important, if your oxygen content is low, it eventually will do major damage to various organs such as your heart. If your blood oxygen level isn't in the mid-ninties then you are not getting the oxygen your body requires to function.

Take a look at this article from the Mayo Clinic:

Hypoxemia (low blood oxygen)

The lung has to be drained, and if you have an blood oxygen level lower then 90, it is very important for you to be on oxygen therapy. I'm on oxygen now all the time and even when I go out, I have to use oxygen tanks so I can breathe.

What in the world is wrong with these doctors. This really is basic medicine we are talking about.

They say they don't "hear" anything, but what other tests have they done to determine the actual fluid level? have they done an xray, CAT scan, MRI? They also need to do a pulmonary function test?

Pulmonary function tests ... 003853.htm

I've been through several so that they can monitor how well my lungs are doing. This will help show too whether or not your lungs are getting better or worse.

Also, if these tests are necessary and oxygen therapy is required, I can not imagine any health insurance turning it down. How could they as you could eventually wind up in critical condition.

Stick to your guns, my friend. Go through those articles and you may want to show them to your doctors as they are all written by doctors.

Here's another good one, in this article it is referred to a a pleural effusion - the same thing - different term.

Pleural Effusion

Finally, if these guys are determined not to do anything, is there any chance of your finding another doctor? See if you can get an appointment with a pulmonologist? They are the specialists that should be making the decisions on this as the lungs are their specific specialty.

Also, is there any way to file a complaint against these guys?