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Does anyone else spring leaks??

PostPosted: Sat Aug 12, 2006 8:33 am
by Teddi
I was at my therapist yesterday - which did not help much - she attempted to wrap my lump but the growth on my leg is so big and so misshapen that no kind of wrap will stay on. I'm thinking maybe if I could get a piece of spandex at a fabric store and make a kind of a large sleeve, perhaps I could get that on the leg over the lump and cause some ccompression that way.

Anyway, from time to time, I just seem to spring a pinhole leak and the clear fluid runs out like a faucet!! They usually close up in a few days but they are a real pain while they are running because it's like trying to soak up a swimming pool with a sponge!! You'd think I'd get a little smaller losing so much fluid but I'm still just as big - life just isn't fair!!

Teddi

PostPosted: Sat Aug 12, 2006 12:08 pm
by joanne johnson
Hi Teddi,
I know how annoying those little "leaks" are. I usually get them right above my ankle where the skin is thick and very swollen. I usually put some thick gauze padding then wrap a long white sock around it and pin it in place.

That large lump must be so uncomfortable for you. Isn't there anyone that is willing to remove it for you? Someone has to do something esp. if it continues to get larger. I hope you will be able to get some help.

PostPosted: Sat Aug 12, 2006 3:17 pm
by Teddi
Hi Joanne -

What I usually do with the leaks is tape a sanitary pad over it and then we just have to change them as often as they get wet. This one is particularly bad - if we don't change the pad often enough I start to make a puddle on the floor.

As far as the lump is concerned, you would not believe how uncomfortable it is and I have begged more doctors to remove it with no luck whatsoever! I have been told that people with le do not heal (which is ridiculous because I heal just fine) - I have been told that the wound would be too large - but they won't listen to me when I suggest that they could take some skin from the removed lump and do a graft to make it smaller. I have been told by the so called experts, that it will eventually kill me but that they don't feel comfortable trying to remove it and I have been told by my therapist that you should never take a knife to this kind of lump! I have asked about liposuction and been told either that it is too expensive or that it only works on fat, not fluid. To be honest with you, I have been given so many different answers that the one thing I am convinced of is that the doctors know absolutely nothing about this disease.

I have heard that they are developing a drug out in Stanford - I wonder how I could get into a clinical trial - at this point I'll try anything!

PostPosted: Sat Aug 12, 2006 8:04 pm
by patoco
Hi Ya Teddie :)

OK....now these doctors out there are about to drive me bonkers.

Mind you, I'm not a doctor, just a cantancerous ole Irishman who's had lymphedema for 53 years and corresponded and/or talkedwith a couple thousand lymphedema patients.

Hun, you gotta be a pit bull here. Let me offer some ideas.

Demand (don't ask) that these guys get in touch with someone who actually knows lymphedema.

Here are three doctors, one of which at least they need to be in contact with regarding your situation:

Dr. Paula Stewart
Dr. Stewart is a physical medicine and rehabilitation physician who specializes in lymphedema treatment. *Hospital has staff of 7 therapists trained and certified in the treatment of lymphedema.*

Healthsouth Lakeshore Rehabilitation Hospital
Lakeshore Drive
Birmingham, AL

205-868-2098

205-868-2290

.................

Kathleen Francis, MD, Medical Director
Lymphedema Physician Services
St. Barnabas Ambulatory Care Center
200 South Orange Avenue
Livingston, NJ 07039
Tel 973-322-7366
973-322-7500
Fax: 973-322-7450


................

Emily Iker, M.D.
Physical Medicine and Rehabilitation
2001 Santa Monica Blvd.
Ste. 470W
Santa Monica, CA. 90404

310 829 7472

email: LYMPHEDEMA@JUNO.COM

----------

ok...now this lump.....demand they specifically tell you what it is.

Tell them you want to know if it is (1) hemangioma (2) lymphangioma (3) lymphocele or (4) lipoma or (5) tumor. Make them give a specific name.

Then...they need to specifically tell you why this is supposed to wind up taking your life. If they can't, I'm sorry, but those kind of statements border seriously on malpractice.

I would love to know from them what evidence they have that lymphdema patients don't heal. Sure, surgery of any kind must be handled carefully and wisely to prevent infections and complications.

During my life I had 2 experimental surgeries, plus 3 - 9 hour leg surgeries, multiple skin grafts and probably a dozen biopsies. Healed perfectly from every one. The clim that lymphedema patients don't heal is simply based on their ignorance.

And what's with this therapist to say you should never take a knife to this kind of lump???? Why???????? Demand specifics.

I feel very frustrated for you...these doctors sound cornier then the corn fields.

If I can also help, have them write me and I will be more then happy to share my experiences.

Big hug to ya :!: :!: :!:

Pat

PostPosted: Sun Aug 13, 2006 12:21 am
by Teddi
Pat - thank you so much for all the info and for making me feel that i am not out there alone. My doctor admits that she knows nothing about this and I gave her dr. stewart's name and address and email from the last post where you told me about her and she said she would contact her but i have heard nothing more and most probably she has done nothing about it. I know that she really would prefer to hand me off to another doctor but she has not been able to find one who will take me! There is a lymph clinic up in Rochester (Mayo) but my insurance only covers the state of Iowa!

Now, about the lump - they tested it five ways from Sunday at Iowa City and said that all they could tell me is that it is not a tumor and not a cyst! Now, this therapist says that it is actually a part of my leg which has enlarged with backed up lymph fluids and her exact words were, "we in the lymphedema world know never to take a knife to these things."

The doctor who told me it would kill me said that it would eventually break down and cause a massive infection and kill me. He then declined to operate on the grounds that it would endanger my life! Figure that one out.

i also complained to the administrator at iowa city about this surgeon who was rude, nasty and left me in tears. Every time I tried to ask a question he told me to shut up.

I am not well off and simply do not have the wherewithall to travel all over the country looking for help. I feel like the medical community has abandoned me and i feel very helpless - my husband is more like... pissed off at all these people.

Teddi

Re:

PostPosted: Wed Aug 16, 2006 10:11 pm
by raingoddess
Hey teddi, this is ellen

I'm new here at the forum and but i had to reply to to your post. I m fully aware of the springing of leaks - great way to put that btw - it is only my toes and only occurs when i stub them but since i am a huge clutz, it happens. anyway over the past 9 years i have found some good ways of dealing with leaks. first i absorb as much as i can, for about the first 10 or so minutes using gauze, then i soak my foot in ice water which slows down the flow and also aids pain that might occur with the leaks. you can also use a wash cloth soaked in ice water (or kept in the freezer) and apply it to the area that has "sprung". last I dry and wrap my toes in a thick layer on the small gauze wraps i have (you can use just whatever sterile gauze or sterile material you normally use) and then i just elevate which helps the flow keep from the leak. well i hope that helped a little bit, its my best bet!

lots of love! :D :D :D ~ Ellen

review of what i said yesterday

PostPosted: Thu Aug 17, 2006 9:28 am
by raingoddess 2
i did some thinking last night, and also realized that your leaking is worse than i realized after i read your other post, so what i said might not help as much as i thought. i do know that leaking is caused by severe pressure behind an already weak spot on your leg. when you have really bad swelling in an area and it is up against a place where it can't go anywhere like toes, ankles, and the lump on your leg, the fluid bursts through the dam and runs amok until the body can heal the wound - which takes forever. I also messaged my friend who also has le and she said that icing down the area with either a baggie of crushed ice wrapped in a towel or soaking in cold water helps her. maybe if you do that with trying to keep it absorbed it might help. the only other thing i can suggest is changing the sanitaryas often as possible because you run higher risk of infection when leaks are sprung like that and sorry if this is of no help, and please don't think less of me if it doesnt - also the fact that they won't do anything to help the lump is insane, its putting you in great discomfort and even putting the health of your leg at risk- i agree that having lymphedema does not hinder healing and shouldnt prevent doctors from operating, don't give up, maybe you putting pressure on these people will help them to listen to experts and maybe get you the help you need.

much love : ellen :D :D

Thanks, Ellen

PostPosted: Thu Aug 17, 2006 11:29 am
by Teddi
Hi Ellen and nice to meet you. Thanks for all your suggestions. Yes, this leak is pretty bad and we do change the pads as often as they get full which is about every hour or so. I know that the stuff which comes out is caustic to our very delicate skin. I think that the cut that I suffered from the wheelchair was kind of deep and that's why it's having trouble healing. Good thing is that there is no bleeding, just leaking. Unfortunately, I do not have a place to sit with my leg up. I will if I can ever get my husband to draw the plans to a chair that I like in the therapists office as I have a friend who has volunteered to build it for me. It's something i really want since not only will it be the right size but I will be able to get out of it without help - something which I cannot do from any of the places that I have to sit on right now. I'll try the cold packs and thanks for the suggestion.

I would love to find a surgeon who would attack this lump on my leg but they all keep telling me that it would not heal. I think the truth is that none of them want to deal with someone as large as I am right now. Of course it's a catch 22 situation - if I could get rid of the lump, I could exercise which would help me get some of this off... but I can't exercise and get rid of some fat and possibly some fluid, unless I can get rid of the lump. It's very frustrating!