Lymphedema......It goes on...

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Lymphedema......It goes on...

Postby patoco » Sat Jun 10, 2006 10:28 pm

Lymphedema......It goes on...

Originally posted 03/22/2005 by KelleGirl

a quote from Robert Frost...
"In three words I can sum up everything that I have learned about life…..it goes on".
now ain't that the truth...

Before sharing my story ~ I have to say what a fantastic website this is!
The people ~ the information ~ the inspiration ~ absolutely wonderful.

This is a bit lengthy - you may wanna grab a cup of coffee, a glass of wine or just plain ol' say whew I'll read this another time...

I have had swelling in my left collar bone area-by my neck, in my left arm, left breast, abdomen, both legs since October of 2003.
Original swelling showing up in my collar bone was painful and had been there (after a 2nd visit to a new chiropractor) for a couple of days before I finally went into a local Walk-In to see a Dr.
On that day, I had x-rays which showed a gray area in my left lung - having been a smoker at that time, of course lung cancer is what came to mind.
Later that same day the Dr ordered a CT scan, which revealed that the gray area in my lung was only fluid - I was relieved.

However, the Dr indicated that my lymph nodes were extremely enlarged throughout my body...he contacted an oncologist & surgeon who I had to see the next day.

An oncologist?! I was a bit scared to say the least from what all of these Dr's could see I should have had a type of cancer of the lymph nodes.

I am happy to say this did not prove to be true after two biopsies the first in the left collar bone area the second under my left arm.

Within one week of the original swelling showing up in my left collar bone area - the majority [as mentioned above] of my body also began swelling. Prior to my first biopsy I called the surgeon to tell him of the additional swelling of my left arm and the pain.

He ordered an ultrasound and found that I had a blood clot...but the blood clot was not the primary concern at that time - cancer was...
(Actually through all of the various tests I found out that I have a blood disorder that predisposes me to blood clots – Prothrombin gene mutation.)

It wasn't until the end of November 2003 that the blood clot was broken apart - I was hospitalized for two days & they had to actually go into my vein to break apart the clot. The meds weren't doing it alone...

After that process my body became even more swollen, had to buy shoes 2 sizes larger than usual...was just unreal. Thought my skin would bust wide open...

I had to have fluid drained from my chest cavity every 4 to 7 weeks up until June of 2004. (3 liters of fluid was drained off each time)

In the past year I have lost approximately 50-60 lbs, the swelling has gone down especially in my right leg, some in my left leg & my abdomen. However, the swelling is still quite evident in my left arm & left breast.

The closest any of the Docs could come to explaining how this all came about is that it appeared as if there was trauma (typically shows up when a person has radiation therapy) in the thoracic duct area, and that coupled with a damaged subclavian vein in my left arm (which typically shows up in people with kidney disorders). I've not had radiation treatments, I don't have cancer, and my kidneys are functioning just fine...

We still do not know what has caused the lypmhedema and actually I don't even care any longer.

I have made positive changes in my life – I realized there is more to life than working (I love my job, but have put my family and myself first now), quit smoking Oct 1st 2003, going to acupuncture, still taking two different water pills, coumadin & plavix, have had lymph drainage massage and am wearing compression garments (sleeve, gauntlet and pantyhose)

* & most recently am also seeing a Holistic Dr, and am going through a detoxification process.

*wearing the compression garments when I can ~ within the last two weeks the pain is reoccurring in my upper left arm & neck area where it all began so many months ago. It’s most uncomfortable to wear the sleeve and gauntlet ~ so instead I wear the ‘tube like” material that was used when I was wrapping my arm.

These questions still go through my mind...
Will this ever go away so that I will be back to "normal"?
Are there other things I could be doing to speed up the process?

I keep thinking that there has to be others "out there" who might have had similar situations that could help me to find the right path...
So that brings me here - to you, any suggestions, direction or recommendations any one can share will be greatly appreciated...

Thank you for letting me share ~

KelleGirl

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Responses

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Coyote

wow kellegirl!!!!!

welcome...am i ever glad you found this website and forum!!!!

there are several of us here that have lymphedema that affects multiple parts of the body, if you look back in the past forum posts you would find lots of discussions about just that!

i have primary hereditary lymphedema...we think. i diagnosed myself and told the doctor what i had. after checking my liver, kidneys, lungs and heart, my doctor concurred. i have been instrumental in getting two others in my family diagnosed. it has taken me a long time to recognize the fact that i had lymphedema at least since puberty, possibly earlier. i was told it was obesity, particularly in more recent years.

i have had a chest x-ray looking for pleural effussions and my doctor said that the obstruction i had she felt was due to obesity. my lymph therapist and i have proven her wrong through being able to improve my shortness of breath and wheeze with manual lymph drainage and a medicine ball technique that i developed (there is a post here describing it somewhere on the forum.)

my lymph therapist believes i was born with bad veins and too few lymph nodes. if that is true, then sooner or later, i was bound to swell up like a balloon, it was just a matter of time.

so far the focus has been mostly on my legs for treatment, though my lymph therapist does some massage on my abdomen.

i have been in treatment for lymphedema since may of 2003. i was treating it and the massive leg ulcerations that i had myself for quite awhile before that time. i waited until i had health insurance to seek treatment.(lymph fluid is very caustic, so if your skin ever does break open.....keep an eye on it. my skin is so delicate to begin with, i can have an ulceration overnight.)

there will be others jumping in to greet you and to share their stories, i know, and i'm sure i'll be writing again....tell more about what you do for massage, exercise, etc to help yourself from a day to day basis, we might have some suggestions that might help!

again, welcome!!!

julie
aka coyote

........

Tina

Hi Kellegirl

Wow what a story and time you have had! I'm glad things are better now with the swelling. Did you have any lymph tests like a lymphoscinty? That would tell you if you have primary lymphedema. I wonder if the blood clot was just enough to trigger a back up of fluid, along with the damaged vein?

Usually lymphedema does not go away, though we all wish it did! It's pretty much a lifelong ordeal for us with the bandages, wraps, fluid, etc. The best management is keeping it under control and the lymph therapy.

You'll meet more great people here with lots of stories to tell.

tina

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Pat

Hey Kelle

Soooo appreciate your post and that you joined our family here!

I'm one of those Julie mentioned that has lymphedema affect many areas of my body. Have had recurring pleural effusions now for several years...got about 1/3 right lung involvment now...waiting to get off my duff and have it drained again.

I wish I could say it would go away. But with correct treatment and lifestyle itcan become managable.

The best help you can give yourself is decongestive therapy, keeping involved with as much as you can in your activities, exercise, good dietary habits. Taking care of and listening to your body is a major thing.

You'll find a great family here...we go from being serious at times to totally silly and really have a lot of fun together. Its great too, because when one of us gets down....other family members jump in to lift us (or in my case boot me up). LOL, some even think they can keep me ine line.

Don't be afraid to post on anything you need to..we're all here for ya!

Pat

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Silkie

Hiya Kelly
you found a great group here
So supportive, so imformative, so completely
MAD, SO WONDERFULLY LOVING,CARING.
Pat well what he cant tell you about lymph
isnt worth knowing,
and the wonderful TT'ers (thunder thighs ppl)
they will make you smile on the worse of days

It is a great big family, and they close ranks
and they pull you out of those dark moments
and make you smile
THERE THE BEST
HUGGGGGGGGGGGGGGGGGG SILKS XXXXX

WELCOME TO THE FAMILY

........

KelleGirl

WOW! thank you all for the wonderful welcome ...

As far as what I've been doing along the lines of massage, etc.
I continue to massage the "hot spots" that the therapist showed me, the knees, arm pit area, neck...also my stomach - circular type of massage. She discharged me in November of 2004 because I had plateaued; however I am experiencing pain in my arm/neck just as it had began in Oct 2003. So I'm wondering if I might have to resume lymph drainage massage...the other thing that crosses my mind is another blood clot. But I certainly wouldn't think it would be a blood clot because of the coumadin I take daily...
Anyway back to the topic of exercise etc., once it get's above 30 degress outside - I'll resume walking daily. Meantime through the winter months I have a trampoline that I use at least once a day - approx 10-15 minutes.
I went to a local athletic club (2 wk trial membership) for a type of water yoga, can't recall the name something like aichi (sp?) - which is supposed to be tychi (sp?) but in water, i guess. I really would have liked to continue that program; but it's quite pricy to have a membership to the club. I'm tempted to ask one of the local hotels if it would be possible for me to use their pool in the mornings...prolly will get laughed out of the place - but i figure it doesn't hurt to ask. :)
Also for the past year, most every day I drink 32oz of steamed distilled water with 1/2 tsp sea salt and 1/2 cup fresh lemon juice. And most recently am following the detox program identified by the Holistic Dr.

I believe I read some posts where people are using an exercise ball? Assuming this is the large ball to be used for stretching?
I'm open to try anything new - so suggestions are most welcome!

thanks to everyone again for the warm welcome! Kelley

KelleGirl

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Silkie

Hiya kelly
we were talking about the ball tonight in chat
Coyote uses one,
i uses different sponge ones for creases and back .
but the birthing Balls look strong enough and im thinking of
the excercise you can do as in pegnancy with them
It is worth a try and low impact

Im ordering one will give it a go
tried to get one before but the sports balls seem flimsy
but the birthing ball looks good

will let you know how i get on
might as well let one of us see how it goes first before we all
take a chance at breaking our necks lol
huggggggg silks xxxxxxxxxxxxxxx

im just glad this isnt going on cam lol

........

Coyote

hi there kelle and silks,

it sounds like it might be good if you were to at least check in with your lymph therapist. they are accustomed to dealing with flare-ups with lymphedema and would not be surprised to get the call. you may need another referral from your doctor...or your lymph therapist may be able to get it for you.

i've heard of aichi...it sounds lovely, wish my local gym made it available! i did t'ai chi chaun for many years before i had to give it up due to my illness. if aichi were available here, i'd give it a shot because your body is more weightless....as far as asking the hotel about there pool...you might be surprised! i got a very positive response from the one i asked and i found out another hotel does it already. it would cost you anywhere from $3-5.00 each time, but its worth it!

i must say that at least doubling your water would probably be a good thing...water is a lymph patient's friend...the daily recommended amount is 8 glasses which i believe are 8 oz which is 64oz of water recommended per day....without the salt. don't know why you do the salt, it is contraindicated for us, a low sodium diet is recommended.

i try to drink a minimum of 2 1/2 quarts (80 oz)of water per day and my naturopath wanted me to do something closer to 4 quarts per day. but then, i am a large woman and probably need more water than a smaller woman.

the round inflatible balls that you can sit on and do various exercises on, I use for some of my isometric/stretching exercises. I have a pill-shaped version that I use to "roll" while laying down so I can do the leg exercises where you bring your knee horizontally toward your chin and then kick out horizontally. i also use a smaller inflatible round ball and the pill-shaped one to roll around on the wall to massage my back and buttocks areas. a birthing ball is like these kinds of balls. sidenote: i saw where you could get a cover for a birthing ball....that's pretty cool, too.

but, the kind of ball that i use for lymph massage and get the best results with is with a medicine ball. a medicine ball can be various sizes and various weights. many people use them instead of regular hand weights in weight-bearing type exercises.

a medicine ball can be hard rubber, synthetic or real leather. it can be weighted with various substances. you would want the hard rubber weighted version, not a soft one. some of them bounce, some don't....this doesn't matter for this form of massage. it bears no resemblance to the exercise balls.

do a google search of "medicine ball" and you'll see what i mean. i have two balls, one weighs about 4.5 pounds and the other about 15 pounds. the smaller ball is about the size of a volleyball and the bigger one is about the size of a basketball. the one which is the size of a basketball is the size that the lymph therapists use at the hospital.

i have tried to use a small exercise ball for abdominal massage and do not get satisfactory results. the weight of the medicine ball is really important because it makes it a lot easier to get the results you need. you don't need to use a lot of muscle to get in where you need to.....the abdomen is a really important location for anyone to work on for lymphedema, whether upper or lower body. there is breathwork that you can do while massaging which can be helpful as well. if you listen to your body as you do it, you find a natural rhythm to the massage and breathing that creates a greater level of flow.

physical/occupational therapy depts have both the exercise balls and the medicine balls for you to try out, as do most gyms.

i believe that you must use a hard, weigthted ball to get effective results from abdominal and truncal massage with it for lymphedema.

i found out today that both of the lymphedema therapists (not just mine) at the hospital where i go for treatment are using the technique i developed with their other patients now....their patient rolls the ball around in "U" shaped motions (toward the center of belly) while the lymph therapist massages other areas.....the days are gone where you can just lay back and enjoy the lymph massage!!! its a good thing because there seems to be a synergy to the belly being worked at the same time as other areas.

coyote

........

Silkie

Hiya
Just to add to coyotes "balls"

i use a tennis size ball but sponge not one that you can aqueeze to
easy bit a firm sponge
I use this round my creases #
the ankles i also use like a worry ball for
exercise for my arm

Another thing i use at home is two tins of equal weight
in each hand (coke tins full) an starting from my arms down at
my side do straight arm lifts at 90 degrees from body
to help my arms.

I use a brush stale also to lift above head down to shoulder
ans thighs you can put a plastic bag on the end with a tin or two
of same weight in each end and use as weights (light weights)
and add to them if you feel meed to life heavier ones.

i do step up and down on my bottom stair (holding on to the bannister)
Just thought i would mention them guys you never know
Oh and coyote I use a light weigh childrens soccer ball
I sit on a chair (straight backed) get te ball between my feet and holding it lift my legs up and down
it was hard to even lift at first but im really pleased with the movement in my legs again

hugggggggggg silks xxxxxxxxxxxx

Please remember that breathing properly with the excercise
is the most important
Pat has some good info on it
I love the yoga breathing works for me
And if you feel strain or pain your going to far
ho pain or strain especially with lymph
increased breathing is cool

love silks xxxxxxxxxxxxxxxxxxxxxxx
that

........

Silkie

Cool Coyote not that i think we will ever lose the
"TT's but it does help to keep supple and i think it
does the old self esteem power of good A sense of
positivness. And Control

Oh quick story.for you my friend.
When we were in Liverpool for st pats we had great time
but you know we were leaving and the music was pouring out the doors
of a wine bar I Drags poor mandy in there all like
brittney even younger and of course the men were older oggling the girls

We stood near the Bar and the DJ Coyote i felt like
I was fitter than the lot of them no energy no rytham
no life. Sheesh even with the lymph i was moving better than they
nearly Tell you my friend i could have danced all night
had to get the train back :((
Legs body everything ached next day And i was good put the old wraps on all day Boy was it worth it
me bits really had a Ball
I am glad i was young when dancing was enjoyment rytham and energy
and not poising for the fellas
huggggggggggggggggg
lovessssssssss
syncapatin' silkie the best shaker of bits in manchester
ha ha ha ha ha!!
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