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Saturday, March 2, 2013

Lymphedema Tools in my Self-Management Toolbox

I have been blessed to be able to add some very useful tools that help in my daily management of all over lymphedema.  I want to share them with you, along with a review of how the product helps me and give you a link to the company who makes or sells them.

Flexitouch machine: 

Above is the Flexitouch machine controler.  My machine is about 5 years old and is an older design.  The cost 5 years ago was about 11K; however, since I have to have pieces for all 4 limbs my cost is higher than most patients who only have 1 or 2 limbs affected.  A cycle is about 1 hour for each limb.  I normally run 3-4 cycles a day, which means i must devote 3-4 hours or more per day. This machine has helped me control my lymphedema, better than any other tool I have used; however, it is time consuming.  I have to either be laying down or fully reclined to use this machineIf I overdo it one day, I will run extra cycles and it will bring down the swelling.  This machine mimics a therapists MLD(manual lymph drainage).  Please follow this link for more detailed information on the Flexitouch:

 Above is the set of 3 pieces that are used when treating my left arm.  I have another set just like this for the right arm.  As you can see on the front and back that the chest/torso piece does not come all the way down to overlap my lower piece that come up to my waist.  This exposed area allows the fluid to pool and is causing me severe lower back pain.  I was informed by the company rep last month that they have changed the design and the pieces now overlap, which should alleviate my daily lower back pain.  Once I have the money to purchase the new pieces and possible new updated machine, I will go see my lymphedema therapist at Retreat Hospital in Richmond, VA and we will meet with the rep to access how they new pieces can help me and if insurance is approved, I will receive the new pieces.

Above is the 2 pieces for my left leg limb.  I also have another 2 pieces for my right leg. 

Reid Sleeves:
As you can see I have reid sleeves for every limb.  I have been using Reid Sleeves since 2004 and they last me about 4-5 years.  This is my second pair and they are about 4 years old.  I do not use them every day, since I now have the Flexitouch machine that I use daily.  I now use the Reid Sleeves as needed, when I need extra compression, either to sleep in or on days when I want extra compression, but still want to be mobile. When I fly, you will see me wearing all of these, so that I do not swell in flight.  I just wore the two leg pieces this week for the day when I stayed at home all day and cooked:
I also use them when I may not have the 3-4 hours I need to devote when using Flexitouch.  For me it does not work as well as the flexitouch, but allows you to be mobile and is cheaper.  If I recall 4 years ago the price for $1100 each for the custom legs and $400 for the over the counter arm pieces.  I do have lymphedema all over, so my case is rare and harder to treat, since all my lymph nodes are damaged.  I know patients that only have 1 limb affected and they love and swear by their Reid Sleeve.  For more detailed information on the Reid Sleeves, please follow this link:

Kinesio Tape:
I was introduced to kinesio tape, about 3 years ago, after going to my lymphedema therapist about my continued lower back pain.  Kinesio tape was a recent option for the clinic and I was game to try it.  I use the tape 6 days a week on my back, giving my skin a day to rest in between applications:
If you can see, right above my shorts is a pretty big pocket of fluid.  I have so much fluid, that they kinesio tape does move the fluid; however, it is unable to move the amount I know have.  Getting the new pieces to the Flexitouch machine will cover this area and hopefully allow me to better control this area of swelling.

I also started taping my arms and hands, to see if the tape could replace full arm compression sleeves and full finger compression gloves(with only the fingertips exposed),  I was so happy that the kinseo taped worked and I was able to wear the tape every day, instead of the hot arm sleeves and full gloves. If it is hard to see where I have the kinseo tape on the arm, it is because I use beige and it does a pretty good job of blending in with my coloring.  When i replace my tape this week, I will use a color, and retake a picture, so it is easier to see.  About 6 months after I started taping my hands, I decided to try and see what would happen if I didn't tape and lucky me my swelling stayed down, with just taping my upper and lower arms.  I still need to tape my arms, but so much better than wearing compression sleeves.  It does not work on my legs, probably because of gravity pulling the fluid down.  In December 2012 I found a different brand of kinseo tape and it cost $8 a roll, but stays on for a week at a time.  The previous tape I used had to be replaced every few days.  Please see this link for PerformixTex tape:

 Compression Vest:
To try and combat the severe lower back swelling and a place on my stomach, in July 2012 I finally broke down and tried a compression vest.  I have been reluctant to try a compression vest because I was worried about how uncomfortable it would be to breath and just the overall comfort level.  This vest has 2 sets of hook and eye closures so it can be adjusted if I needed it bigger or smaller.  We tried to get the vest to hit at my hip, to try and compress the area where my hips are so much bigger than my waist, without luck.  I wear this on the day I go without the Kinesio tape and on days when I need more that just the tape.  I should really wear it everyday, but the discomfort made me keep it in the closet a little more than it should have been.  I recently lost a little weight and it is not lose on that area in my back, so it is not as tight or as uncomfortable, but it is also not working as it is fitting now.  I will be getting a new one when I go back for therapy if the new flexitouch pieces do not work.  If I order a new one, I will have the back of the next lower, as it feels to tall.  If you look in the picture of the kinesio tape on my arms, you will see I am in the compression vest and you can see that the back of the next comes up pretty close to the neck.  Juzo is the brand of this compression vest.  I do not see a place online that has more info on the compression vest, which is pretty new.  You can contact you lymphedema therapist who can contact Juzo on ordering this vest.  I do not have a price on this vest, as it was the first one the rep worked thru the order and did not charge me for the vest.  This has only happened one other time and it is normally because of how expensive custom compression garments are and they feel for me because I have it all over so they cut me a break on garments.   So blessed when a company does that because it is very expensive for me to purchase garments and supplies.

Compression leg garments:
 I do not have a great pic of my compression leg garments, but will insert one when I do have it.  I wear capris with an adjustable waist band, to help them stay up, you can do this with at least Juzo garments, but you have to ask.  I wear 2 knee highs as well.  I have only worn closed toe since I started wearing garments, until last summer.  I went through therapy again and was able to get my feet down enough to use open toed knee highs with just a toe cap on the right foot.  This allows me to wear flip flops and sandals during the summer.  For more information on Juzo garments go to this link:

I will continue to add to this as I can and please let me know if you have any questions regarding these items.  Lisa


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