Flexi-touch for teens?

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Flexi-touch for teens?

Postby Dee » Fri May 21, 2010 12:46 pm

My 13 year old daughter has recently been diagnosed with primary LE of the right leg. I am considering using the Flexi-touch pump. Has anyone used one for their kid ? Do I need to be concerned with causing LE of the genetalia?

The Flexi-touch website has lots of good success stories. I'm confused as to why everyone is not using one. Is there something that I don't know about?
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Re: Flexi-touch for teens?

Postby patoco » Sat May 22, 2010 2:58 pm

Hi Dee :)

I also sponsor a group called Children with Lymphedema. From what others have said they have used the Flexi with their teens with good success.

Children with Lymphedema

http://health.groups.yahoo.com/group/ch ... ymphedema/

I think the biggest drawback to Flexi (and the only one I can see) is the cost. It does seem terribly expensive.

As far as I know there aren't any documented cases of it causing genital LE. There was one woman who reported it did cause hers, but I tried in vain to get her to document it with the company and she never would - so I honestly don't know what happened with her.

You're certainly welcome to join our children's group, we have some 390 parents - just about all of which have children with lymphedema.

Pat
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Re: Flexi-touch for teens?

Postby ma1290 » Sun May 23, 2010 1:28 pm

Hello,

I just entered my twenties but I used the flexitouch for several weeks last year. I also used a much older pump system when I was five or six years old (1995). I never had a problem with genital edema. I would recommend seeing if you can borrow a flexitouch for several weeks to try it out. I was able to get a loaner to test out through a flexitouch representative that was contacted by my lymphedema therapist.

The Flexi-touch website has lots of good success stories. I'm confused as to why everyone is not using one. Is there something that I don't know about?

The flexitouch has definitely been beneficial for some people, but the results haven't been earth-shattering. I personally did not benefit whatsoever from using it, but my lymphedema was fairly severe. I have got the impression that the flexitouch is most effective on limbs that haven't reached stage III lymphedema. However, it is much easier to put on at night than it is to wrap with bandages. Many people have found it very helpful so I think that it is definitely worth a try.

Good luck,
Adam
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Re: Flexi-touch for teens?

Postby patoco » Mon May 24, 2010 8:38 am

Hey Ya Adam :!: :!:

How are you doing??????

Super idea about a test flexi machine - I didn't even know they did that. I'm not to sure either about how effective it is with stage 4 LE. LOL....I have beyond stage four in that left leg and definitely stage 4 in the right.

Here's the really strange thing about my legs. Actually, I did get a good response on both legs, but the left leg did better then the right. Same thing when I was in Dr. Stewart's Birmingham hospital. My left leg had a greater fluid loss then the right.

Go figure - it really surprised all of us. The left leg is the one I had 3 nine hour Thompson's procedure on, the one that had the radiation therapy for the lymphoma, and Lord knows how many many cellulitis attacks.

As long as I live, I don't think I'll ever figure out lymphedema. It just keeps you guessing.

Pat
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Re: Flexi-touch for teens?

Postby ma1290 » Sat Jun 12, 2010 1:08 am

Hey Pat! I'm doing well! No sign of cancer recurrence and I am getting around well. How are you????

Your results with the flexitouch are interesting! That's great that you were able to get a positive result.

"As long as I live, I don't think I'll ever figure out lymphedema. It just keeps you guessing."
I couldn't agree more!

Adam
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Re: Flexi-touch for teens?

Postby patoco » Sat Jun 12, 2010 8:24 am

Hi Ya Adam

Whoa.....good news there Bro :!: :) :!: :)

I'm doing ok....had a brief bad spell in May, but things seem to have leveled out again. I even did well enough to put in a little container garden with tomatoes, cukes, zuchinis and a bunch of different tall annuals.

I've got scans coming up the end of the month. So far, I haven't had a "malignant" biopsy for a wee bit over three years. I still have some stuff going on, but it does look like we are at least keeping the lymphoma at bay.

I'll tell ya, I sure wish I could use a Flexi. I can't because of all the abdominal and pleural fluid, but if I could, I would sure have one. Just wish the price could come down.

Great hearing from you :D :D

Pat
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Re: Flexi-touch for teens?

Postby Dee » Wed Aug 18, 2010 1:40 pm

Just wanted to thank you for your feedback on the Flexi touch. We did end up getting one and it has been in use for just over a month now. We are very happy with the results. Nothing earth shattering happens but we are able to minimze our trips to the therapist, in addition to having support while we are on vacation. It definitely makes her leg softer which we hope translates into minimizing the advent of fibroids and seems to maintain the size as well as the therapist sessions.

You are correct that it is expensive but unfortunately it was covered by our heath insurance with minimal difficulty regading the paperwork or justification. The people at Flexi-Touch are incredibly helpful with the process.
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Re: Flexi-touch for teens?

Postby evelyn » Fri Aug 20, 2010 9:52 am

I just started using the Flexitouch a month ago, after my right leg LE flared up (due to a bus tour accident on a holiday in Germany). I read about it, made sure I knew what Patoco had to say about it and then called the company. Someone came to show me the big Wrap and she assured me that my insurance would cover it and I need never worry for any unpaid portion (usually 20%). I guess I'm lucky to have a good insurance coverage. A nurse came to train and orient me with the Flexitouch and I am so happy with it. In one month, my leg is a lot less swollen and softer. I am presently planning a consult with Dr. Mara F. Massey in So. Carolina to see if I'm a candidae for her lymphnode transplant surgery. I guess I'll seek every venue for alleviate my LE and pass on the info experience to my fellow sufferers.

Evelyn
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