Newbie in Raleigh

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Newbie in Raleigh

Postby Xtian » Sat Jul 12, 2008 12:15 am

Hi All,

I have had Lymphedema in my left foot since puberty. I inherited it from my mother who has it in both her lower legs since birth. I'm male age 37. Just this last year my right foot also began swelling. I was officially diagnosed this year and have been taking steps to manage my symptoms. I would say I have mild stage one in both feet as they swell throughout the day from my toes and into my ankles. The forefoot and toes are the worst on bad days but can be reduced dramatically with elevation and controlled with compression...and depending on the weather or situation I can mange well. Still, even though it could be much worse, it impacts daily life choices....and, if I’m honest, has made me angry from time to time after learning about the lack of research and lack of a cure. I hate the "managing symptoms" approaches that seem to exist in the medical field, especially for Lymphedema.

I have learned a lot after discovering this website but have a couple of questions:

1. Managing: Can anyone explain why water (swimming) helps reduce the swelling so much? For years I discovered that diving into the deep end and swimming in general helped. I imagine the excess fluid is mobilized easily by the water and the equal, yet non abrasive, force the water applies. I have been trying to conceive of a device that would combine water and pressure that patients could use in the place of other pumps...I think it could be a huge help in many ways...any ideas?

2. Cure: This is probably for Pat...I read this article about Dr. Stanley Rockson from Stanford who created a mouse model with Lymphedema to test 12 different drugs. The article is from 2006 and says they hope you move into human trials. My question is twofold: I am aware of LRF and clinic trials but does anyone have any news in general as to what is leading the way to cure this disease? I read man of the pages Pat put together about trials and new updates but they are a little difficult to digest as to how they would correlate to a cure. Is there a real push for a cure or is the medical community satisfied with managing symptoms?

Re: Newbie in Raleigh

Postby patoco » Sat Jul 12, 2008 3:22 pm

Hey Xtian :)

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

My lymphedema was similar to yours. When I was born, I (or so I was told) I would have all over swelling. Then things settled down and the LE was mainly in my left leg. The right one was only an "on and off" situation until I reached adulthood, then it became permanent in the right.

Glad you've achieved the diagnoses and are making a management plan. :idea: :!: :!:

Swimming is the ultimate exercise because the gentle pressure of the water against the limbs acts very much like MLD. It literally massages the fluids out of the limb. Also, I think it is so effective because this pressure is actually against the entire body. So the abdomenal lymphatics are being cleared at the same time as the limb fluids are being pushed up and out. The idea of a machine to mimic it would be great. The only device that would come even close would be the Flexitouch.

It does have initial abdominal clearing and after that the leg (or arm). But still it isn't the same.

I've had the pleasure of meeting just about all the researchers,docs and main clinitians who treat and study LE during the past few years and I am comfortable with the thought that they really do want a cure and not just management. Dr. Rockson, of course is at the forefront of this research.

The problem, I don't think is what they want to do as much as the funding available to do the research. The tragic things is, is taht this is true the world over. Dr. Mortimer in the UK is a great one for research and helping, but his funding is limited. The U of Pittsburg has this great LE family study and genetics study. Again though, funding is lacking.

Lymphedema, ironically though it affects millions, just doesn't seem to be one of those conditions that is "glamerous" to spend monies on. Also, there is such a total lack of unity in the lymphedema world (patient and professional) that we lack any type of political clout to achieve any reforms. I think the patient world is perhaps the most dysfunctional of the LE groups. Sadly, we tend to be our own worse enemy is these terms.

The best hope for a cure, of course is probably gene therapy. This would enable to body to grow new lymphatics to bypass the damaged or missing system.

Until then, I am fairly convinced that what will work best for successful management is a "team" approach for the patient. This would be a functioning, cooperating group of various physcians, therapists and the patient. Management modalities might not only include MLD, bandages etc, but also regular physical therapy,healthy dieting (Nutrition); infections managment, psychological considerations, wound doctor or clinic - and on. The composition of the team would pretty much depend on the patients particular situation.

As an example, my basic team consists of the regular doc, oncologist, ID doctor and pulmonary doc. The LE physcian I have been too and remain in contact with is Dr. Paula Stewart in Birmingham, Alabama. I don't have a therapist or wound clinic as I can not have MLD due to pleural fluid and no wounds that require attention. carried away in my response :roll: - but this really is something I have thought a lot about and am glad to see someone post on it.

Again, super welcome and very much look forward to getting to know you. I'm just over in Georgia about 43 miles east of Atlanta.

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Re: Newbie in Raleigh

Postby roadmon » Sun Jul 13, 2008 4:02 pm

I'm with you, newbie in Raleigh. I've had lymphedema for 2 years in my right leg (knee to groin area) and it has steadily gotten worse, even though I do everything to keep it under control. I also do all I can to create awareness. Here in Atlanta area I have e-mailed my state senators and most members of Congress, TV stations, radio stations, talk show people on radio and TV, and I talk about it to anyone I know (and even strangers)....anything to help awareness. I know that Sam Donaldson has LE and he would be the person to get the word out, and I don't know why he doesn't. I follow all of the research at LRF and especially Dr. Rockson. I think and hope he can do all he can in the research area and I await clinical trials, which I am signed up for. Everyone should sign up for the newsletters that the LRF send out every couple months. They keep you up on all the new research. I hope there is a cure for it in my lifetime, because I'm sick and tired of all the things I can't do in my life. After 2 years, it bothers me every day of my life. But I go on and deal with the pain I've had for the last 2 or 3 months and all the other discomforts. I have dear friends in Raleigh who are a whole Duke family--mom & dad went and so did their three daughters!!
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Re: Newbie in Raleigh

Postby Xtian » Tue Jul 15, 2008 5:18 pm

Thanks "patoco" and "roadmon" for your quick and complete responses. I have another question or two:

1. Has anyone noticed if they have a cycle to the swelling?? I have noticed from time to time that there are days I wake up with very little swelling and less throughout the day. I am going to start to track it and see if I can’t find a pattern. I was wondering if anyone has had this experience.

2. I was wondering the other night while swimming if anyone has ever attempted to have MLD underwater? What if you were submerged in about three feet of water while having MLD performed by a therapist…I have, an hear others do to, so much success with swimming that it occurred this might be a very helpful idea. It might seem radical but I think that the same old ways need some fresh ideas.

Re: Newbie in Raleigh

Postby Cassie » Tue Jul 15, 2008 7:51 pm

Ah, Xtian, I'm delighted with this subject about the water and LE!

For a couple of years I've been bringing this up to every researcher I communicate with :D , but so far no interest. It's this: when we go to a neighbor's pool to swim, the swimming itself helps, of course. But I notice a REAL response when I stand by the place where the water shoots into the pool under water... (Is this making any sense? It's a hole in the side of the pool, several inches below the water level, where the water returns fairly forcibly to the pool after it goes through the filter). Anyhow, when I stand there and maneuver so that the flow crosses my skin in the order and direction of my MLD massage, it is WAY more effective than even the therapist's MLD. (Effective as in, I have to leave the pool for the restroom. :oops: ) For me, it's far and away the quickest and most effective way to reduce swelling that I've experienced. It doesn't take as long as a pump, and it's completely comfortable. So I'm thinking that if I had a hose under water that I could direct at will, it'd be a great way to treat this miserable condition. (As it is, contorting myself to get my body into the right relationship to the flow from the hole is a bit of a process!)

So, what I don't get is, how come nobody's been interested? Probably because it's bizarre.

Xtian, if your pool's got one of those water return holes, and if there's nobody else around who's going to think you've cracked -- or worse -- give it a try and let me know what you think, yes?
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Re: Newbie in Raleigh

Postby patoco » Tue Jul 15, 2008 9:04 pm

Hey Cassie

OK now...I'm worrying about you :lol: :D

Actually, I'm glad to see someone else in our lymph family has done this.

When I was in the inpatient treatment center, I was frustrated because those water exercises they taught me were really not that effective on my LE.

When I was healthier with no breathing issues, I would give myself an intense cardio workout while in the pool. Side strokes, back strokes all kinds of things like that. I was always totally amazed at how the intense workouts would move water. I could actually get my right leg swelling cut in half from it. LOL... led me to think, "wow, don't ever swim inthe same pool with lymphers" :wink: :wink:

They didn't allow that kind of workout in the pool at the hospital. Personally, I feel that lymphers could benefit more from water exercises if they were allowed to just swim 'til their hearts content.

You get that same action from the water hole. It is a much more intense compression amount - being focused and directed as you twist and turned.

I too wish the therapists or someone would be more interested - then perhaps the hose extension you were mentioning could be developed.

Pat 8)
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