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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Postby Arizona Mo » Sat May 31, 2008 1:16 pm

I just joined your website - so thankful to have support - I felt I was the only person battling this ugly condition. I have LE in my legs and need a knee replacement. Have not found a doctor willing to take the risk - has anyone with leg LE gone through a knee replacement? I also have been reading your posts regarding kinex tape. What is that? Any information you can share would be greatly appreciated. I am so glad I found this website!!!!!
Arizona Mo
Posts: 3
Joined: Tue May 27, 2008 1:33 pm

Re: HI - I'M NEW

Postby OzClaire » Thu Jun 05, 2008 8:30 pm

Hi there, I've just started using the site too and I find it sooooo refreshing and helpful to know that I am now part of a wider, very supportive, family. I wish you all the best with your knee .... regards, Claire
Posts: 14
Joined: Sun Jun 01, 2008 9:54 pm

Re: HI - I'M NEW

Postby Cassie » Fri Jun 06, 2008 2:55 pm

Hello and welcome, Clair and Mo,
So glad you found us here. It is such a relief to be part of community, isn't it!
Mo, I'm in AZ too -- the hot part. You too? We've had a lovely Spring, but summer will get here in force sooner or later. The heat can be hard on the lymphedema, but we do find ways to cope. (I never leave the house without my spray bottle to spritz myself with water at intervals - guess that only works in places like AZ, where it's not real humid.)
Kinesio tape is a special sports tape that is used by some therapists to help reduce the swelling from lymphedema. It's slit lenghtwise into several strips still connected at the top, and applied by spreading the strips out over the swollen area, leading in the direction you want the fluid to drain. Usually you wear it for a few days, then give the skin a rest for a few days and reapply. It works quite well for some, but it has to be taught by someone who's been trained in using it. Since I'm allergic to adhesive, it's unfortunately a no-no for me, but others have used it successfully.
Hope some of that helps. Let us know if you try the taping and how it works for you,
Senior Moderator
Posts: 44
Joined: Sat May 10, 2008 3:17 pm
Location: AZ

Re: HI - I'M NEW

Postby Shirl » Sat Jun 07, 2008 10:49 pm

Hi: I am not new here but yet I am. Smiles.
I guess I am rather a lurker as I tend to keep everything about me private.
Your not alone tho re this deadful disease; I have stage 3 Primary Lymphedema also have been diagnosed Lipedema; full body Osteoarthritis; Lipomatosis; some nureopathynow in my right leg and am developing some Fibromyalgia.

In July 2003 I had a full left knee replacement. The actualknee replacement was a piece of cake.so as to speak. But with any major surgery involving the legs re Primary Lympohedema; one can expect a few side effects.
Yes I think it may have enchanced my Primary Lymphedema some what; and my recovery such as being able to get a full bend to the knee was very much slower that the average person's would be with out PL.
But I would do it again and in fact need to have the right one done soon.

With out the knee replacement I would have been in a wheelchair by now and its great to be able to move about as much as i can now.
The big issue for me was to make sure that I was placed into a good rehabilitation centre following my surgery and one that had a pool.
I went right from the hosoital after a 7 day stay and directly to Rehab center for about 5 weeks.
Its rather unsual for them, to keep someone there for this long and oh how they balked.
My biggest problem that I encountered was to make everyone understand that I had PL.
No one there had ever heard of it including all the Drs.
Thank goodness my Orthopedic Surgeon knew even if he is not familiar with this diease.
He said he would take utmost care not to disturb any Lymphnodes; and he did.

It took me about 3 times as long as the average person to regain full mobiity of that left leg and a lot of hard work in the pool here.
But would I dod it again; YES and it may be as soon as next year.
Here one has to get on a waiting list of about 10 month or more to get a knee replacement.

I am still recovering from a right Rotor cuff sugery from last December and progressing nicely.
I had the left one done in July 2006 and also had a big Lipoma removed from my left thigh March of 2007.
I still have several more surgeries to face; but I hold my head up and go on despite what may or may not happend following surgery.

One thing I did do is my Dr gave me a reqristion for preop Physiotheraphy re my leg to get the muscles and ligamnets ready for the knee rplacement.
I have for years now used the pool for theraphy as well and it woks wonders for me.
I go at least 3 times per week and water walk and jog for 45 mins no stop and then do my other excercies in the water.
Its keeping me more mobile and out of a wheelchair as I can't wwalk far on land and cannot stand more than about 10 mins at a time.

I have had NO luck with wrappings, cannot aford to have any MLD treatments but I do wear my compression garments.
The water has really benefited me and in atime span from last July to December I had 2 of my Orthopedic Surgeons as well as the vascular specialist tell me to stay in the water.

In December the day following my right Rotor Cuff surgery; my Surgeon told me that he was amazed that my bones are so suble for my age.( just turned 73) and also that it was directly related to all the hrs i soend in the pool.

Sometimes I don't feel like going but I tell myself I have to go as its like taking my medicine.
Now my body actually craves for the water when and if I ma not bale to go for a week or so like in April when I had eye surgery.

I have some of the best Surgeons available. I always seek out my own and then ask my Family Dr for a referral.
My surgeons are all professors and also travel world wide teaching.

Again re having a knee replacement its an individual's choice.
For me I am so please that we have skilled surgeons that can replace parts and also repair parts. Smiles.
I am determined to stay in the water and work hard and be persistent; and the rest lies in God's hands.

I am wondering if there is a way you can connect to me personally from here?
Be more than glad to offer any assistance that I can.
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Joined: Wed Jan 31, 2007 4:03 pm
Location: Ontario Canada

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