Skin and Tissue Removal

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Skin and Tissue Removal

Postby patoco » Sat Jun 10, 2006 1:54 pm

Skin and Tissue Removal

Discussion started by bubba 11/07/2004

Has anyone had the skin and tissue removal procedures done? If so did it work or not. I have two Dr's saying don't do it and two telling me do the procedure.

Thanks,

Mark

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Responses

Pat

Hi Mark

Big welcome as our newest member

On this, I would have to come down on this side of the doctors that are saying - do not - have the surgeries. These surgeries today are reserved for only the most severe cases of lymphedema, usually in the tropical areas that deal with lymphatic filariasis.

The reasons are twofold. First, they are massive surgeries that actually wind up doing intense damage to the remaining lymhatics. Secondly, they simply do not work. True, all that excess tissue will be removed, but the swelling will come right back and worse because of the damages, fibrosis will set in more quickly.

I had three of these procedures done back in the early seventies. Three 9 hours surgeries where my left leg was cut from above my hip down to my big toe. These Thompsons procedure were experiemental at that time and were a new modification of the old debulking surgeries.
I was one of the first people to have these procedures and I would not recommend them to anyone.

The best treatment today remains decongestive massage therapy followed up with compression wraps and garments.

Pat

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bubba

Pat, thanks for your input. I am 34 and just got out of the hosiptal with infection in my left leg below the knee. They told me that if I didn't have the procedure that I be back in the hos.. in a few months. I wear a 40-50mm stocking but I still swell anyway. I have just started to research this topic and I am not sure what the best solution is. I question why my Dr has not mentioned some of the things that I have found. ie: what type of exercises can I do.

I will continue to search for answers because I don't know what else to do.

Thanks again,

Mark

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Sadly Anonymous

HEY Mark,

In my opinion, I wouldn't let them do that to you. As part of an auto accident, the DRs removed about half of my left calf, in hopes that it would make things better. NOT! I was in bed flat for almost 1 year because the DRs did an "experiment" to see if it would help my LE get better, too. I know every case is different, but I think you'll find that most LE patients would not opt for it, after they've had it done. Drs are only being educated guessers when it come to LE. They don't know that much about the lymphatic system yet.

Remember, THEY don't have to live with the results of their guess work.
Read EVERYTHING posted here, all of our comments/stories, all of Pat's posts, ALL the info in the Forum section, and every other site you can find, before you make this kind of decision, it's irreversible.

What kind do you have, when/where did it start? What kinds of treatment have you tried already? Do you have a good support group, & do you have a "team" working on this for you? What kind of education do the Drs have? Where did they rank in their class, 1st or way down the list? Ask all the questions, even if you think they might be offended-Again, THEY DON'T HAVE TO LIVE WITH THE RESULTS. If they're really good Drs, they won't be offended, they'll understand.

Sorry to sound so strong, I just don't want anyone else going thru what I've gone thru!!

Best of luck to you, keep us posted. We really do care, and have quite a bit of experience/knowledge. We are a family that
supports one another thru the good & bad times. Feel free to ask ANY questions, we want to help.

sadly/gladly patty

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bubba

Patty,

It started about three years ago in my lower left leg. It just mainly swells all the time. On Oct 12 I went to ER because of infection in that leg. Spent 7 days their. The swelling is much worse now and the Dr's don't know anything or alest they sure don't tell me what I can do. They just tell me to wear the stocking and elevate when I can. I am 34 with 4 children so I dont get alot of free time to sit around and elevate my leg. I am trying to find details on what type of excerises I can do. What things do help for you and others? I told the Dr's to just cut it off; I think I would be better off. Yes I am little upset with the nothing we can do saying. I am open to hear about any options or things that may help.

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Pat

Hey Mark

Good to hear fom you.

Have you tried manual decongestive therepay for the swelling? It frustrates me that the doctors tell ou there's nothing to be done and just to wear a stocking.

Does you whole leg swell to? Drop a note back - would really like to figure out something you can do.

Look forward to hearing from you.

Pat

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Sadly anonymous

Hey Mark,
I was just going to post back when I saw Papa Pat was here, too. Whole-heartily agree with him (ALWAYS!). I get so frustrated that our people have to suffer needlessly. I can guarrantee that if it was one of them or their family going thru this, they'd give/get some answers right away. I don't even expect them to find a cure, just to be forthcoming with the knowledge that IS there for us. But they don't seem to want to find the material that exists. Or at least, they don't want to share it, if they do know about it.

The exercise that seems to work best for most of the family is water therapy/swimming. The pressure of the water around the affected area seems to help, and also helps the skin keep hydrated.

Make sure you take good care of your skin on that leg, keep it soft with a good moisturizing lotion. And be oh-so-careful not to damage the skin in any way, or the infection can come back in just minutes. I've also used a mini trampoline and a foot- paddle walking device, to keep muscle strong when I couldn't get up and walk. I try to walk for a few minutes every hour or so to keep the fluids moving.

Don't know how much you know about this stuff, yet. Is this the first experience you've had with it? The more we know about your situation, the more help we can offer. Pat is extremely knowledgeable, and has amazing investigative abilities.

Also, suggest you read the exercise info in the forum section to the left on this site. There is a lot of info there, too.

Let us know how you're doing.

sadly/gladly patty

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Suess

Hi Mark-

I agree with all of the advice given so far.

Read ALL THE INFORMATION POSSIBLE!!!! It will help a great deal.
Check out the list of Doctors on this site....is yours on there? If not, can you get to one on the listing?

Also.....the compression wraps will DECREASE the swelling. We've got to get it elevated above the heart. The stockings will MAINTAIN it, but not decrease it. We've all been disappointed to find out there is no "CURE" for this illness. Some Doctors will try just about anything you want them to, regardless if there's a successfull result.

Did you know you'll have to turn into a real pushy, crabby, complainy-demanding person to get the help you'll need? (Pretty good, eh? No foul language!) This is when you have to be selfish. I know you have a family, but this is about you, and you have to demand the information and demand the best treatment you can get.

Be Careful. Be Persistant.
Hope you find the info you need.

(Ok, I'm off the soapbox now.)

suess

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Silkie

Hi bubba

Sound advice you always get from Pat snd the family here.
There is a file in here for nearly every sonario.
The best file isnt listed has no name

Yet its always open, ready for us to use.

Its friendship and love of a family that knows all your doubts all your pain and tiredness,you cant get that sort of medicine from doctors or hospitals. Every one here understands,they have felt the same. They surround you and support you when its tough going,then there is Pat He is a Star!!! always there for each and everyone of us and anyone else he can find on the world wide net/

We may not have a cure, we may not have enough medical help
yet. But while were all waiting we got PAT
welcome to the best family .

huggggggggggggggg silkxxxxxxxxxxxxxxxxxxx

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bubba

WOW!! First and formost thank you all for hearing my questions. Pat, How do you do "manual decongestive ". and the swelling started in the ankle and toes then progressed in to the shin. After the infection my knee is starting. I never took the precations that I needed to very early on. I had one DR. tell me that I just hurt my ankle. I used to do alot of martial arts.

Yes I now understand that I need to take very good care of my leg. I was being very stuborn!!!!!!!!

I am going to night classes to get two more degrees in Accounting and Business. Maybe I should become a Dr. hahahahaha

Thanks to all of you again,

Mark(bubba)

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patoco
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