My Experience with the Flexitouch Pneumatic Pump for Lymphedema

To pump or not to pump…that is a question that I hear in the lymphedema community. When I developed secondary lymphedema from breast cancer treatment in 2010 I asked my therapist about compression pumps. She explained that compression pumps force air into sleeves with multiple chambers. The chambers take turns filling up with air with the goal of moving excess fluid out of the affected limb and returning it to the cardiovascular system. My therapist wasn’t very keen on the use of these pumps and stated that they can sometimes hinder rather than help lymphedema. She advocated instead for daily manual lymphatic drainage and the wearing of compression garments. I met other therapists here and there and all of them preferred manual lymphatic drainage, MLD, over the use of pumps.

So for almost every night for the next seven years I sat down and performed MLD on my left arm. Then one evening last fall when I was arriving at a SWELL lymphedema support meeting I heard a buzz in the air. Words like “new kind of pump”, “different than the old types”, “favorable studies”, and “Dr. Rockson” floated to my ears. I knew Dr. Stanley Rockson of Stanford University was performing a drug trial with a medication called Uberimex for the treatment of lymphedema so I was keenly interested in learning what he said about this new pump.

The pump is called the Flexitouch System by Tactile Medical. I subsequently found out that Flexitouch had actually been around for several years but a new study had brought awareness to this pneumatic compression device or lymphedema pump. The study, published in October 2015 and authored by Pinar Karaca-Mandic, PhD, Alan T. Hirsch, MD, Stanley Rockson, MD, and Sheila Ridner, PhD, RN, showed promising results when a patient used the Flexitouch System for one year.

According to the Journal of American Medical Association (JAMA), In the 12 months following the receipt of the Flexitouch APCD: Cancer-related lymphedema patients demonstrated a: 79% decline in the rate of cellulitis, 29% reduction in the rate of out-patient hospital visits, a 30% reduction in rate of physical therapy, and a 37% reduction in lymphedema-related costs. Non-cancer related lymphedema patients demonstrated a: 75% decline in the rate of cellulitis, a 40% reduction in the rate of out-patient hospital visits, a 34% reduction in rate of physical therapy visits, and a 36% reduction in lymphedema-related costs.

https://www.tactilemedical.com/wp-content//uploads/2018/03/500266-002-RevC-JAMA-Clinical-Highlight.pdf

My interest in pumps suddenly skyrocketed! I’ve always been diligent about caring for my lymphedema but if there was a product that could further the health of my left arm, I was going to investigate. A friend who was using the Flexitouch for lymphedema in her legs directed me to Alexis, the sales representative for Flexitouch. In my home, Alexis helped me slip into a padded bolero type jacket with a long sleeve for my left arm. Another set of pads enveloped my left thigh and trunk. I was rather startled at how wrapped up I was. Michelin Man came to mind as I stretched out on the couch. For an hour, the air chambers inflated and deflated sequentially, creating a wave-like motion. The whole process, though limiting my ambulation, was comfortable and relaxing.

I didn’t make a decision to purchase a pump that day. I wanted to talk to some people who had actually used the pump. I chatted with a woman from Tacoma and another from Idaho. Prior to using a Flexitouch, the Tacoma woman had at least two to three bouts of cellulitis a year, some requiring hospitalization. Since using the Flexitouch for almost a year, she had not experienced cellulitis. The woman from Idaho said her arm was softer and found the machine easy to use.

My insurance company required me to use a different brand of compression pump and experience failure before they would consider covering the cost of a Flexitouch. I decided to purchase one without insurance. Buying a reconditioned machine saved me some money. The warranty was the same as a new machine.

I’ve had my Flexitouch for almost five months. I use it every evening. If I’m out late, I use it in the morning and then resume again in the evening. I always start with the one hour full arm and core setting. Since my trouble spot is below my elbow, several times a week I use the 22 minute forearm and hand setting. Reading or watching TV are the activities I’m able to do while I’m being treated. It’s also a relief not to manually MLD my arm every night. As one Flexitouch woman put it, it’s like finally getting a dishwasher to do your dishes.

What do I think about my Flexitouch, or spacesuit as my husband and I affectionately call it I’m glad I have it. I did a baseline measurement of my left arm before treatment and three weeks after using the pump. Except for my wrist, all my measurements showed reduction. Most significantly was the reduction in my forearm. Surprisingly, my therapist’s measurements showed minimal difference with previous measurements. I can’t explain that but I can visually see a difference. Out of my sleeve, my 3/4 length sleeves aren’t as tight. My skin appears more like the skin on my right arm. Also, when I am out of my sleeve for special occasions, the knuckles of my hand are still showing after a few hours. This all proves to me that my Flexitouch is moving lymphatic fluid out of my lymphedema affected areas.

Managing my lymphedema requires attention and an assortment of tools. I’m diligent in taking care of myself because I want to continue to pursue activities that enrich my life. Adding the Flexitouch compression pump to my daily lymphedema care regime has helped me attain that goal.

Karen Gillespie

(Note: There are other well regarded pumps on the market. This is not anadvertisement for Flexitouch.)

36 thoughts on “My Experience with the Flexitouch Pneumatic Pump for Lymphedema

  1. I am delighted to say that hubby’s minor leg swelling, from his diabetes and hefty build, are significantly less – after Flexi-Touch was added to his health regime by the Diabetes Clinic at the VA Hospital. I like to joke, “Honey, time for me to put the squeeze on you..”. He will recline, watch tv, or sometimes he is so relaxed he briefly dozes off. The sores he used to get on his legs are healing faster; he says he doesn’t feel anywhere near as sluggish. Looking at his ankles there IS no swelling now. Along with testing his blood sugar, taking his meds, and a sensible diet/exercise part of a complete diabetes maintenance routine? Thumbs up for Flexi-Touch!!

  2. Yay! Thank you for sharing your husband’s success with a pump. Yes, taking care of one’s body requires several interventions. I’m curious, was your husband diagnosed with lymphedema or was his leg swelling due primarily to diabetes?

  3. The leg garments that I received are for a much taller person. They only measured the circumference of my thighs and calfskin, not the length, so now I am STUCK with a non-refundable almost 9K system that is too long for me. I am on a fixed income and have to pay almost 1K for something that Tactile Medical SHOULD have measured for…they’re the experts and SHOULD have measured correctly. I really need this system and had such desperate hope. I need help but there’s a no return policy.

    1. Hi Cheryl,

      I’m sorry for the experience you had with Tactile Medical. I did send them an email and asked them to look at your case again. I don’t know if it will make a difference. I would suggest you keep contacting Tactile Medical. Try contacting different people. My best to you.

    2. I would contact your local news station that has a consumer investigation/help line. They are usually called something like 7 on your side or Channel 3 helps you.

      Explain the situation to them. They will reach out to Flexitouch in the process of creating a segment for the news.

      Faced with negative publicity, they often end up making things right.

  4. I have have been blessed to have the Tactile newest machine for lymphedema in both my legs. In the last year and a half I was getting cellulitis in my right leg about every 3-4 months and the last straw was in both. You have to speak up for yourself because my doctor would have just let me keep getting it and pumping me full of antibiotics. Actually they don’t know much about lymphedema. I have been thru way to much of trial and error doctors and a lymphedema physical therapist which was a joke. I was told purchased high priced left garments which I don’t think I needed. There is more to the whole story but bottom line is if you have this machine it changes everything they think they know about lymphedema! My insurance paid for all of it and the Tactile rep will help you get that. I use it everyday for an hour. I have skipped 1 or 2 days just 3 or 4 times since March. I don’t like that I have to do it but it has changed my legs back to normal. I didn’t need a lymphedema physical therapist but too much to explain here. I am in very early stages but it will only get worse if not taken care of, so be kind and good to yourself.

    1. Deborah, hello, my name is Peggy and I also have lymphedema in my left leg. I have had it some 10 years now and when it gets to the point of cellulitis I take medication which I feel is not the thing to do but it takes the pain away and eventually relieves the fever and some of the swelling. I have had the doctors look at my leg and rewrite a prescription for me but never try to see if my insurance will cover an air compression unit for my leg.
      I just came across this site about the Flexitouch Pneumatic Pump for Lymphedema. If you don’t mind, would you be willing to tell me what insurance company you have because it sounds like they were willing to help you? What really gripes me is that my nurse practitioner wouldn’t even consider ordering one.

  5. I developed secondary lymphedema about 2 years ago after I had 3 sentinel nodes taken out with a lumpectomy, chemo and 36 doses of radiation. I have lymphedema in my right arm, breast and axilla. Breast cancer and treatment in itself was an awful journey. Developing Lymphedema and not being able to get the help that I neededwas awful. Having to search it all out including bandaging and reducing myself, learning from You Tube, finding supplies online and dealing with physical therapists and oncologists and radiation oncologists who don’t know anything about this chronic disease and putting all the pieces together myself because there are people to help but no one knows where they are was emotially depressing. The feeling of devloping a chronic disease after surviving cancer was almost debilitating. I am a person who has kids and works as a hairstylist and loves gardening and working out and cooking. Everything in my life that I do and love and I am passionate about invloves using my hands and arms. It was a blow to the life I had that I once had. It was up to me to piece it together. Chronic pain all the time and the hopelessness of diagnosis was almost harder than going through chemo emotionally and physically. I went through a period of reducing with bandaging and compression bras and sleves and swell spots, tribute night garmets, flatknit sleeves and gauntlets, hours of MLD myself (still using the arm that I need to not be using) paying out of pocket thousands of dollars for professional lymph massage that insurance wouldn’t pay for.(Therapists couldn’t afford themselves to take insurance payments because most insurances do not reinburse them enough to make it worthwhile) All in all I finally found the Lymphedema Center (why don’t doctors know this) and took some classes and found an amazing therapist who has helped and has been trained in lymphedema and a few massage therapists that know what they are doing and are trained. This is a long story but I have managed it as best as I can but when I finally was ready to prove to my insurance that the Flexitouch was needed the insurance denied me coverage. So we appealed 3 times. The company Tactile medicine has been so nice from listening to me to appealing and sending people to me to make the process easy. The best thing is that after only 6 days of pumping my breast and axilla is are much smaller and I have no dull grating pain for many hours in the day! I still need to wear night garments and flat knit garmets and compression bras and self MLD but I feel like a weight has been lifted literally and physically. I will always have Lymphedema but the Flexitouch Plus was the last peice of the puzzle that I needed and I am so thankful and emotionally grateful that I am able to have it. I greatly encourage others to try to obtain one if they are able and if it is a good option for them.

    1. Hi Kristie,
      Thank you for sharing your story. I can relate all too well to what you have been through. I know many others can as well. What is encouraging is that you have had success with managing your lymphedema! The pump has helped you achieve significant results. Keep sharing your story. You are benefiting the lymphedema community.

      Best,
      Karen

  6. My husband has a brand new system that I’m trying to sell. He just never could get use to using it and being able to don the garments. It’s brand new, used 1 time. Do you know of anyone whom would want to buy it? I hate to let such an important piece of equipment sit and waste when so many people could benefit from it. Just wondering if you have any ideas of whom to contact on such a thing. I see several for sale on EBAY, but the lymphedema community is such a specific niche, I just don’t think that’s the best way to approach the need. Ideas? Thanks.

    1. Hi Sarah,
      I would suggest going to a clinic in your area where therapists specialize in care of lymphedema. They are in contact with patients who could benefit from a pneumatic pump. Selling one at a reduced cost could open up possibilities for people who could not otherwise afford them. I wish you success!

      Karen

    2. If you still have the system, I am interested. I have lymphedema near globally at this point and am trying to obtain coverage via insurance.

    3. My therapist said they cannot be reused by another. They are programed for each individual. O ce they are used the government won’t always them to use them on another

      1. Yes. It seems a lot of pumps are preprogrammed for the individual. One pump I know of that does not have preprogramming is a Normatec pump by Hyperice. I wonder if pumps can be reprogrammed.

  7. I am looking for a left arm garment for the flexitouch plus. I purchased a barely used unit but tactile will not sell me the garment since I havent purchased a new machine from them. I have searched the usual places, such as ebay, but cannot find a left arm garment anywhere. If anyone has one, or knows of one, please contact me.

  8. My husband?s pump system arrived yesterday. Because of the COVID-19 I will have to learn the ropes online because Tactile is not making home visits. I have little confidence that the FaceTime call offered will be of much use. Anyway, we are excited and hopeful this will be a part of our answer for his lymphedema.

    1. Hi Kathi,
      The FaceTime call might work! It’s amazing how we are communicating so much more through technology because of Covid. I would be interested to hear how your husband’s experience with his new pump. Thank you for writing. Keep in touch!

      Karen

  9. I have been suffering from lymphedema for the past 2 years. I have it in both of my legs mostly in my thighs. It has become so bad that I can barely walk. My thighs are so big that I can no longer Drive. My lymphedema therapist also told me that the pumps weren’t worth it. They wanted me to come there three times a week for 3 hours to be wrapped and have therapy. First of all I can’t drive, and second I have to pay a $60 copay every time I go. I go to wound care once a week because of the horrible wounds on my legs that drain so badly due to the lymphedema. I have a uniboot compressions on both of my calves. I cannot find any shoes that fit my feet or any pants that fit comfortably . It’s been tough . One week at the wound care clinic , I saw a different doctor than normal and he referred me to tactile. I had to use they’re cheaper system for one month before my insurance would pay for the flexitouch. I just received it yesterday and I’m super hopeful that it will help. I’m only 44 years old , and I have kids that need mom back. I can no longer Drive, go to the grocery store, take my kids for a walk or go to the park or anywhere for that matter. It has made my life miserable. It’s amazing to me how little doctors know about lymphedema. Please cross your fingers for me that this works. Hopefully it will give me a better quality of life because I don’t know what else to do at this point.

    1. Hi Jaime, I’m hopeful that your new pump will provide relief. I’ve heard from many people that they saw good results with their pump. Please write back in a month or so and let us know your progress.

  10. I bought a Tactile flexi-touch plus system from a Veteran on Ebay for $200. I tried to buy the garments I need from the company and they wont sell me the sleeves I need because I bought the machine from a 3rd party. I have been denied from my insurance company 3 times to get this for my lymphedema that is all over my body. I can’t afford to buy new so I opted to get one used to at least start my therapy the PT has ordered. The garments have already been measured for me at the PT office but the Company won’t allow me to purchase them from them. UGH! where is the compassion for ill people that NEED certain healthcare to get better? I only make 12k per year so it’s not like I can afford anything. I have had a DMX, chemo, radiation and will be taking medication for the next 10 years that causes swelling.

  11. I just received the flexitouch plus, but I think the leg garments are too big. The specialist who placed the order asked for my inner thigh measurement, so she ordered a medium for the legs based on that. I?m 5? 4? & weigh 126 lbs. does anyone know where I can find a size chart for the flexitouch garments so I can figure out what size I really am?

  12. I have lymphedema due to a mastectomy and 15 lymph nodes removed from my left arm. When I first went to physical therapy, she was running through some more common contibuters to swelling. When she said “piano” I froze. I’m a pianist and it’s become my safe place. My go to place when I need calming. It’s something I’m passionate about. And sure enough, even with the improvement I experienced from PT, I couldn’t play more than 15 minutes without excessive swelling. Then I got my flexitouch and my life changed. No, I still can’t play for hours upon hours but I can play an hour straight, take a break, and play some more. It’s my new normal and I’m thankful!!

  13. I have a pump system left and right leg also stomach wraps. I used it a few times and I’m good now. So it’s fairly new for sale

  14. I had a mastectomy and 9 lymph nodes removed 3 months ago. I just finished 6 weeks of radiation. I have been having weekly physical therapy to help with lymphedema and range of motion issues. My physical therapist recommended the FlexiTouch Plus machine, and my new machine arrived this week. But in reading the user’s manual I found that you should consult your physician before using a FlexiTouch garment that covers your chest if you have a tissue expander. When I called my surgeon, he recommended that I not use the FlexiTouch on my chest because the compression can make the tissue expander rupture. Has anyone else had any experience with this? Is there any evidence that a tissue expander has ever ruptured due to using a FlexiTouch machine? I feel like my physical therapist or the sales rep from Tactile Medical should have caught this BEFORE I was encouraged to order an expensive machine that I may or may not be able to use.

  15. I got my Flexibtouch plus system last week that I was never measured for so the whole system feels to big on me, I’ve had to call customer service several times because I can’t get it to run correctly, They have it set up on 104 min. trunk and full leg, The legs don’t inflate until the last 15 minutes of the cycle, and then the pressure is very weak in all of it, I can barely fill it, Its not nothing like the one I experienced at the dr office.. The one I bought from Amazon for $100 has more pressure, Does anyone know if the trunk is to run its cycle before the legs start, The flexi touch plus is a high priced machine to have that you’re not able to use. I have a co/ pay of $422.57 yet to pay, But not until they get it so it can be used I kind of wish I had never got it. .

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