Full-body lymphedema + PDD + MS-like neurological problems

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Full-body lymphedema + PDD + MS-like neurological problems

Postby hanami » Tue Jul 29, 2008 3:35 pm

hello everyone --

I'm very glad to have found this site and read others' stories of their struggle with lymphedema. My girlfriend was hit by a car a little more than ten years ago (and almost beheaded!), and started swelling up around then, mostly the fluid collected in her abdomen but now her legs and arms are full of fluid as well. Her awful ex-husband refused to take her to a doctor for a very long time, and so she kept filling up with more and more fluid and by two years had gained a couple hundred pounds of excess fluid. Only recently have we started to see doctors who have some clue as to what they are doing, and a vascular surgeon diagnosed her with lymphedema in her legs, though he didn't really do a check on the rest of her body unfortunately.

We are going to see the physical therapist a few weeks from now in August, and getting a vein study done. I would like her to have a lymphoscintigram done, but we live in northern Virginia and there doesn't seem to be anywhere in this area that provides that service. I am desperately hoping that the physical therapy will help. This has been going on for so long and I just bought her a wheelchair because she has gotten more and more immobile, and because she has heart damage it is very difficult for her to move around. She has been using a cane for a couple years now, but it is very painful for her to walk at all.

The real problem with the therapy is that I am worried it will be too much for her - she is autistic and any physical touch is very painful and difficult for her to deal with, even from me. I am worried that she won't be able to handle the MDT, but I'm hoping it will work out. She has so many other medical problems that we need to have diagnosed - she has a lot of neuropathic pain/neuralgia, and a lot of other symptoms that seem like MS, she is in terrible pain all the time and the neurologist hasn't really been able to figure out why. Her heart is still in bad shape as well, and she has sleep apnea and I'm beginning to wonder how much of her trouble might be lymph fluid in her lungs as well, since she often tells me she feels like she's drowning. Our experience with the medical profession has been very disheartening - we have a few very very good doctors, but so many have treated her just abysmally because she isn't skinny as a stick. It has begun to feel like, if you're fat, you don't deserve medical care, no matter how much pain you're in and no matter how bad your heart is doing. It's been so discouraging that I really dread taking her out into the world at all. I am so extremely tired with the judgemental glances and the dismissive doctors -- I myself am tiny, and blessed with decent health, and I just want to tell them, my girlfriend eats much less than I do, how dare you think you know anything about her lifestyle.

I wish that I myself could take a lymphedema therapy certification course and do the mdt and the other stuff myself. We have compression stockings but I have had a lot of trouble putting them on because they're so painful for her and I hate hurting her, but I'm going to buck up and start doing them again in a little while when my work is over. Does anyone here know how to do MDT and can explain to a lay person, or show me diagrams? Can you do it yourself or for another person without messing the lymphatic system up terribly?

Also, has anyone been to the Georgetown Physical Medicine Lymphedema Management Program? We are going there in August and I am hoping that they will be patient and kind, sometimes I feel like I would just give ANYTHING if there were just doctors and therapists who would be nice and caring to her and appreciate the complete hell she's been through. She was a varsity basketball player and a hiker and she used to walk miles, she walked miles on broken feet once, she was incredibly active and strong before she got nearly killed by a speeding car. Now she can barely walk from one room to another in our tiny apartment and doctors act like it's her fault -- one doctor doing an electromyogram on her said she should just exercise more, that she just wasn't pushing herself hard enough, and got mad at her when she was in pain from that extremely painful test. I've never met anyone who pushes herself more or who has done more with herself despite being very ill from birth, or who can endure more pain and still be good to everyone around her. I get really angry about the medical system sometimes, and people in general, people are so incredibly cruel when they don't know anything about someone's situation and just judge based on looks.

I really wish that they could just stick a tube in her and drain out all the fluid (if only, right?). She says, echoing the people's stories I've read around here, she feels like a big water balloon. I would really do anything to help, and I hope the therapy will help, I am really hoping. If there's anything else I can do at home with her, like learn the massage techniques, please let me know. I wish we could afford inpatient care and just put her in the hospital for a while to drain everything... I hope someday their technology catches up, so that they can just drain this excess poisonous fluid and people don't have to spend their lives taking care of this stuff.

When the therapy starts, does the lymph fluid drain just from the area being massaged or from everywhere? Her face has gotten swollen too, so I am wondering how exactly the therapy's effects will start showing, if and when they do.

Also, has anyone ever had co-morbid parotid tumours along with lymphedema in the facial/neck area? I'm curious about whether or not the re-growth of a tumour she had removed a few years ago is somehow related to the lymphedema.

Last question - for those of you with co-morbid obesity - how do you, or how does your doctor know, how much of that is fat vs. lymphedema? I mean, how are they certain it isn't all just fluid? My girlfriend was very thin before she got hit by the car, but she does struggle with insulin resistance problems (which got much worse after she got hit by the car). If the surgery would help I would get it for her but I don't see how it would; she barely eats as it is.

Thank you for letting me vent -- it's not really something I can talk to classmates/work friends/etc about, so I am very grateful to have these forums and people who understand. Sorry this is so long - I think I've just kept it up inside my head for too long :)
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Re: Full-body lymphedema + PDD + MS-like neurological problems

Postby patoco » Wed Jul 30, 2008 12:21 am

HI Hanami

Super welcome to our family here :!: :!: :!:

What a horrible experience all this must be for you friend. This doctor you mentioned, is he still working with her?

I have a couple ideas and suggestions that hopefully might help. Gonna load ya down with some reading too. But, I also need to let you know that I am not a medical professional nor have I had any formal medical training.

My suggestions are from personal experience in living with lymphedeam for almost 56 years, from the experience of others and from the indepth research I have done.

Georgetown Physical Medicine Lymphedema - I don't have any experience with them, but if their lymhpedema therapists are certified they should be able to help. Georgetown is a highly rated medical center, so I can't imagine they would not have top certified therapists working for them. When in August is she scheduled to be seen? Can we move it any closer?

You may want to check over this page:

How to Choose a Lymphedema Therapist

http://www.lymphedemapeople.com/wiki/do ... _therapist


Treatment is also going to be complex because of the underlying medical conditions. My big concern is that with the all over swelling there is a possibility of fluid overload in the thoracic cavity or the pulmonary/cardiac regions. That would be disasterous.

You can tell the difference between "fat" weight versus "fluid" retention fairly easily. One biggy is that fat tissue is generally soft and pliable. If you press your finger into the ab of a obese person, the tissue will spring back and is easy to push into.

Tissue that is fluid filled is going to be hard....sometimes hard as a rock. When you press your finger into it, you going to see a dent, cavity, crater - something of that nature.

From what you have shared and based on my experiences, plus the experience of many other lymphers, I would not be surprised at all if this weight is almost all fluid. You must, she must be adamant in letting the doctors know about her eating habits and that this all started after the accident.



http://www.lymphedemapeople.com/wiki/do ... intigraphy

I would see if Georgetown would handle her entire case. They most likely do or have access to a center that does lymphoscintigraphy. personally, I feel it is imperative that she have an "all-over" body one. It is crucial that before a treatment program is started that we need to have a full understanding of what part of the lymphatic system is functioning and which is not. This helps in knowing where the fluid can be directed. An important facet of MLD is to move the fluids toards/along available healthy channels.

This will also help understand where exactly to begin a treatment program. If she has all over lymph retention and pleural edema, then she can't start MLD until that is dealt with.

When the scintigraphy is done there are a couple ares that need to be looked at specifically.

What is the condition of the lymphatic flow in and around the thoracic duct. The thoa=oracic duct is the central location where lymph fluid is "dumped" back into the cariiovascular system to be taken finally to the kidney and eliminated.

They will also want to check on the lymph exit valves are functioning.

In addition to the lymphoscintigraphy, they will also need to determine and/or rule out any congestive heart failure issues, check on what is called central venous pressure etc. The doctor will know what is meant here.

Kidney and liver function should also be checked.



Ususally, diuretics are contraindicated for lymphedema. But, in situations of life threatening or potential life threatening situations of all over fluid retention, they are prescribed.

She needs to get as much of that fluid off her abdomen and main body before MLD should be started.

If she has MLD and lung fluid, it would be life threatening to move fluid from her legs into her ab.

Pleural Effusions

http://www.lymphedemapeople.com/thesite ... usions.htm

A simple x-ray is the place to start for that. It will show up any fluid. If there is then another type of scan may be needed such as a CT or MRI.

If there is pleural edema, it needs to be removed (drained) before MLD starts. Other lymphers, including myself often have that "feeling like your drowning" experience. I can tell you too how frightening it is to be woken up from sleep and to feel like your drowning and are unable to breathe because the fluid has moved around in the lung cavity.


Blood work

This may sound strange, but she really needs to be some blood panels done. If she is experiencing all over lymphedema, then chances are the lymphatics of the intestine may be effected. If they are, not only will that cause further swelling - but the lymphatics of that area become dilated and are unable to process fats and proteins. She may start loosing most of the protein she eats. Protein deficiency itself causes edema.

It is important to know her blood protein levels.

Also, a thyroid function test would be appropriate. A malfunctioning thyroid will contribute to edema.



My gawd, from what you have shared now wonder she is in pain. I don't know where the old theory started that lymphedema is a painless swelling of the arm or leg, but trust me whoever started it obviously never had lymphedema.

Under the extreme pressure of the swelling - with the nerve compression that goes on with lymphedema (especially leg and abdomen) a person can be in excruiating pain from that alone.

There is no excuse for her to have to be going through that type of pain.

Her doctors will need to prescibe a pain management program. They should know that a person under extreme pain will experience an entire range of inflammatory responses. Those also will contribute to edema as the body tries to cope with that level of pain.


Doing MLD yourself

Normally, I would say that's a great idea. But with the complexity of her situation, I strongly urge you not to do that.

We need a systematic program of relief, treatment and management for her.

I'll close for now, but hope this is a place for you to start with.

Please don't hesitate to ask questions on what I've shared or in anything related.

Give your friend a super hug from me and one for yourself too. I so appreciate someone like you who cares enough to help :!: :!: :!:

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