My Introduction

HOSPICE, genetics clinic, leaking legs, EMG, nerve conductions, phantom liquid feeling, chronic fatigue, chills, malaise, ankle pain, swollen feet, transient lymphedema, full body lymphedema, tissue hardness, dystonia, painful boil

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My Introduction

Postby patoco » Sat Jun 10, 2006 5:12 pm

My Introduction

Originally posted by Bill 03/105/2005

Hello All,

My name is Bill. I moved Las Vgeas, NV from NJ in 1996 after I retired from the Police Department in NY.

I developed lymphedema over about an 8 year period. Originally I thought that I was getting fat because of my age. The mass in my right thigh just seems to "be there". Then after retirement it began to get bigger, to the point where now it is massive and prevents me from driving because I can't get my legs together enough to work the gas, clutch, and brake pedals. I have great difficulty walking and belive I appear like an old cowboy with bow legs. Finally, last November I broke my left hip. My recovery has been slowed by the lymphedema mass as it presses on my left leg and forces it out into an abnormal position. I am though, finally away from the walker and using a cane to get around. Physical Therapy has helped the busted hip but, not the lymphedema.

I was always an active person. I am a Viet Nam Veteran and spent 26 years as a Police Officer, Sergeant, and Lieutenant in New York City. I have been in relatively good health all my life. There is no incidents of Lymphedema in my family history. Yet, for all my active life I am now disabled by my problem.

I have received little help easing my mass with binding and massage although, pneumatic sleeves on my legs do help reduce the fluid levels for a while. I've also had two surgeries where parts of the mass were removed. The JP drains that were inserted would draw off 1200 to 1500 ccs of liquid a day. Do to the threat of infection I could not keep the drains very long and have wound up with spontaneous eruptions of fluid from sinuses created in my skin by the fluid pressure.

I still hope for relief. I am willing to endour just about anything to control this problem and bring my life back to some order. For now, I don't go out of my home much except to Doctors and I definately don't socialize. This has also caused a strain on my home life. My Wife is a constant help to me and I am worried that she will finally collapse under the burden of my problems.

Thanks for listening. It is good to finally know that there are others with this same problem. It does make me feel a little better knowing that with all of us raising our voices to the medical community maybe someday we will all be helped.

My Regards,

Bill

........

Responses

Tina

Welcome to the lymphomanic world!

Were you born with the mass in your leg? Is the mass fluid or lymph vessels, fatty deposits?

Lymphedema can really be sometimes very difficult to control. Did you have tests done to see how the lymph routes past the mass? Just wondering, that might be a good idea to see what alternative paths therapy could move fluid out by. Have they ever done any cross fibre friction work or spreading techniques on you? That is usually done to break up fibrotic areas or scar tissues. I guess that would depend on what the surgery revealed the mass was, fluid, fibrotic stuff, etc. Tell us a little more about that.

Great to have you on board.

tina

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Sadly Anonymous

Hi Bill, and Welcome!

You'll get the official welcome shortly, but I wanted to come in and tell you personally, being a former Nevada(Reno) for 43 years, how great it is that you found us, and how happy we are to have you here. I am also happy because you're on the same side of the country/time zone as I am in Oregon!

This is the greatest support group you will ever find. We feel like a family, we care about each other, and WANT to help other LE People learn about this condition. There is so much info on the forums on both side, that you'll be reading for a long time. But DO READ, and learn. You'll be so glad you did

Pat O'Connor, our administrator, and all around nice guy, has had this since he was born, he knows the answers to the questions we haven't even thought of yet. You will find him of immense help, and so understanding. If it can happen to you, it's happened to him! You two should get along great, he's a super investigator! We're happy to have you post here, and encourage you to go to the Lymphedema Men website, where he has a great group of men who can feel free to talk, about whatever is troubling you with LE. I did a post about that in the last few days, so you should be able to find it easily.

Thanks for sharing your story, look forward to learning more, soon

sadly/gladly patty

........

Bill

Tina,

Thanks for the note and the interest.

This all started about 8 years ago and has proceeded (increased) over time. There are ares that are lymph fluid, ares that are hard and fiberous, and areas of scar tissue from the two surgeries. I have been told that the hard areas that are not near the incisions are most likley protien deposits.

Armed Forces Institute of Pathology,"Right Thigh Mass: Consistant with massive localized lymphedema"

University of Nevada Medical Center (Pathology), "Spindle Cell Lipoma with localized lymphedema."

The Lymphedema Clinic I am going to will stary the fiber break up process soon. They are preparing some type of material (like bubble packaging) to place on my thigh before wrapping. We will see shortly how that works.

Thanks for writing.

Bill

........

Bill

Patty,

Thanks for your note and the welcome.

I have had contact with Pat already and he has steered me to a couple really good articles.

I will take a look at the Lymphedema Men Group soon.

I hope things in Oregon are beginning to warm up. It is time for spring and some nice weather.

Regards,

Bill

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Joyouse66

A big family welcome to you Bill, we all are family in these web site - just read our stories - when you have a bad day just come on and tell us we will help you in any way we can.

Also bill thanks for sharing your story.

have a great day

joy

........

Bill

Hello Joy,

Thanks for your comments. I will be looking around a lot and hopefully I will be getting to know everyone better.

Regards,

Bill

........

Coyote

Hi Bill, I just wanted to add my welcome to you to the others!!!!
Its helpful to all of us to read more stories about our different experiences with Lymphedema....we can, and do, learn so much from each other!!!

I was born with faulty veins and not enough lymph nodes, or so is the theory of my lymph therapist. We have realized in only the last few months that my problems developed gradually over time. I began exhibiting signs at puberty, but it was not recognized until I diagnosed myself a couple of years ago or so. I am 39. On my medical files, it says I have lower leg lymphedema, but the truth is I have full body Lymphedema.

I've learned that what doctors called "fat" on me was lymphedema. I thought it was fat, too: Who wouldn't? It creeps up on you. Its taken quite awhile to realize just how much of my body is affected by Lymphedema.

Don't give up on lymph massage just yet!!!! Is the bubble wrap-like stuff like tribute or jovipak????? (Looks almost like a moving blanket custom-made garment?) It really helps to soften hard, (elephant hide) areas of the body. I found that it took months of consistent everyday massage, wrapping and tributes to get any results at all on some areas of my body.

There are some areas where "myofascial release" worked on me, a physical or occupational therapist should be aware of or able to do this technique if you want to try it.

I believe the areas that have been swollen the longest, that are fibrotic can take a long time of persistent work to get results! So, that's why I say not to give up on those techniques just yet. Its hard to stick with something faithfully if you don't get results right away, but in this case, its worth it.

julie
aka coyote

........

Bill

Julie,

Thanks for the welcome and the much needed information.

You asked, "If the bubble wrap-like stuff like tribute or jovipak"

Sorry I don't know what those are yet. This is just like packaging bubble wrap and goes on my thigh prior to being wrapped. The idea is that it will help break up the hard protien deposit.

Thanks for writing me.

Bill.

........

Coyote

Bill,

F. Y. I.: Information about tribute garments can be found at: www.swellingsolutions.com. Jovipak and tribute garments are basically the same type of garment. They work great on tissue that has become fibrotic (or hard).

coyote

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Pat

Hey Bill

Just rereading your notes. Has this massed ever undergone a scan? What are the doctors thoughts on the possibility of it being a lipoma?

Have the doctors ever mention any type of surgical treatment?

I tried finding those two articles you mentioned by couldn't.

Looking forward to hearing from you

pat

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dragonfly

Hello. I am familiar with the police department in NYC. Reading your messages has brought back a flood of memories. I worked for an intense period in the office of the Chief Medical Examiner of NY. Collecting and analyzing evidence, etc. Listened to a few men tell of their first experience at a crime scene. Not easy work, forensic medicine. Police related work of any kind can be very demanding. I read of your difficulty to drive. Seems like you drive a car with standard shift (you mention a clutch). I now use hand controls to drive, rather than my legs. Makes a big difference. Hello also to your wife, who I'm sure is supportive. Good luck in your search for answers.

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Sadly Anonymous

Hey Bill

How are ya doin', haven't heard from you in a while, comin' over to ask ya to come out and play with us! Memphis/Tommy has joined the group, too. He's a great funny guy, thought it might be fun for the two of you to meet, tell funny stories!
How's your leg doing, when do you see DR/PT next? Keep in touch!

sadly/gladly patty

........

Memphis

Bill-

Tommy here, really had to comment on this if I may, please uunderstand my asking questions is wanting more information/wanting to know more of our disease. With that I wanted to ask, do you stay in your house because you physically cannot or vanity prevents you? Again a question because it was not clear to me. weather its vanity or physical I recommend starting small if you can....Buy a wind chime....sit on your front or back porch. Listen to the cars go by, listen to the kids playing, the birds chirping.... I was/am quite active like you were Bill and you know what.....I am like a 2 year old child again...........................

Think back to a 2 year old child, their days and lives are totally full of new discoveries...weather its seeing how something works, discovering that birds can fly....their eyes light up...Bill my eyes light up like that again as I have sooooo learned to appreciate things and life more. No kidding, I got a wind chime, threw it on my back porch, lay in my Hammock (have I mentioned I love that hammock) and read....usually I read Chicken soup for the soul...these darn books make me appreciate my life and darn near bring me to tears! Bill get out on the porch if you can my freind, smell the fresh air, what color are theleaves on the trees, what are people doing outside, look up at the warm sun on your face....your alive Bill!!!!!!

........

Silkie

Tommy Thank you
Usually if i am honest on a bad day (not often i have a real pain in the rear one) i get mad and moody.
Next time one comes along ill remember your chimes and maybe take my paints outside let my imagination wander. I usually cannot paint
on those rare days because i am so mad at life.
In fact i think i might make my own wind chimes
I'll give it a go
thank you huggggg Silks xxxxxxxxxx

........

Dragonfly

Life seems to just show up in different ways and different forms. In my case, it's showed up in the form of new neighbors very nearby. There is a lot of activity in and around their home a lot. Their cats have adopted me. The cats come to call me outside sometimes when I feel ill. When I feel the worst, they know this, and tend to leave me alone. There continues to be a lot of building going on. We share a driveway. I must pass their house to get up the driveway to the mailbox. So I can't avoid this energy and activity.

There are things I haven't done for many years, and have wanted to. Now, I find assistance from the neighbors in the form of constant inspiration. It's still very chaotic and disruptive. It's still very rattling, especially since all senses are heightened when
my immune system is crashing. But I'm starting to make some changes. I love wind chimes. I bought a used one (fixed it), now installed on one side of my house. It has a sweet voice. Then I bought another one (deeper voice) which hangs on the other side of the house. Today, I set up a larger outside umbrella, to give more shade than the umbrella I've been using, in the middle of a plastic table. I also purchased a large plastic tub after setting up a hose with faucet outside. Since I can't get to a beach, I want to do this. I want to fill the tub with water from the hose. After letting the sun warm the water, I will add some sea salt. I will use this water to wash my hair. I want to also use some sun-warmed water with sea salt added to wash as much of my swollen body outside as possible without shocking anyone too much.

I already warned my neighbors that if I think a tick has landed on my clothes, I will remove the clothes before going into my house. So that they shouldn't be surprised if once in a while they see a flash of skin moving quickly from the deck into the house. I write this, and once in a while get up to look at the new umbrella set up outside. Sometimes I step outside to shake a wind chime, so I can listen to it's voice. It took the cats and birds a while to get used to the new sound. Starting from scratch, looking at things from a different angle. I get so depressed and discouraged sometimes that it's hard to breathe. So I fall into the arms of the recliner, lean back and sleep. Having a body with such concrete needs is what it's like to care for a young child. Children have very clear, physical needs. They respond quickly, and complain loudly, when a need wakes up. Many kids also fall asleep almost anywhere, it seems.

Sometimes, Ifall asleep in the stores. Socially, though, there's a challenge. How much do you say? Someone offers to drive me to a dinner gathering a few towns away. It sounds like fun. But there are so many questions in my mind, linked up with real concerns. Are there gas stations along the way with bathrooms that I can use? Is the meeting room air conditioned enough so I don't pass out, as I almost did yesterday? Yesterday's unexpected challenges triggered a small smattering of cellulitis lesions in various places that I found today. It just gets exhausting. Boy, do I need chocolate ....

I have to stop thinking in order to feel myself at peace. - Malidoma Some (African shaman)
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