Need pneumatic sequential pump for secondary lymphedema. But what kind?

[2198224]

I'm 76, female. Have secondary Lymphedema following radical cystectomy November 2017 when 28 lymphnodes removed. Immediate swelling in left leg, thigh and abdomen, then right leg in May. Compression garments don't feel right over the stoma/ileostomy. Have hernia there as well. lSo I'm told to get a pneumatic pump with sequential compression and at least three chambers and two legs, etc. How can I find such a pump? What kind does anyone have experience with? Do you use it regularly? What would you recommend? Thanks for any help. I'm still lost in LymphLand so appreciate getting your comments!

[ofcourse]

Hi

I use lympha pants - compression uk

They are good people to deal with and years after we bought it remember and help with advice if needed

X

[2198224 in reply to ofcourse]

Thank you. I will look for their website. However, I should have said I am in rural US, so wish I would find a company on this side of the pond. The continuing interactions you've had are what I would like. Thanks again!

[naominorthenellis in reply to 2198224]

Lympha Press is the biggest provider in the USA. You will find them at lympha-press.com

[2198224 in reply to naominorthenellis]

Dear naominorthenellis,

Thank you very much for your referral to Lympha Press. I have submitted a request that one of their dealers be in touch with me. The Lympha pants looks to be what I need. Do you recommend one or another of the machines? Thanks again!

[Lynora]

Have you been advised to invest in one by your treating physician or lymphoedema clinic? Have you used one at a clinic? There are a number on the market, and they range in price hugely. Cheap is not an option!

[2198224 in reply to Lynora]

Yes, Lynora. My primary physician here in western Montana decided I need a pump in consultation with the Certified Lymphedema Therapist I've been seeing here since January. As I'm in the US, I don't know about any lymphedema clinic where I could try one. Maybe I need to go to a larger city just for that purpose. Would surely like to try before buying. Medicare may pay toward it, so we are submittinh the documentation they require. I'll need to pick up the cost myself if they don't help. One the therapist found is $1,700. So I see cheap isn't able to be an option. Thanks for your interest!!

~Mary Kay

[Lynora in reply to 2198224]

This site is based in London, & I have limited knowledge of the North American market! We have several members based your side of the Pond - they may have some ideas!

[corellc]

I have been using a Tactile pump for over a year; they are based in Minnesota - tactilemedical.com/. A representative came to my home, demonstrated how it works and measured me for the pump. I received units for both legs, although I only use it for one. I've been really pleased with the results, although I am now pumping for 2 hours daily. Medicare will pay, but the documentation requires a specific diagnosis, such as familial lymphedema.

[megs2]

Hi from Ireland... don’t know what’s available for you in America, but I’m using a full trouser garment which encloses the body from above the bellybutton down to the toes & pump. Use it most nights, seranova brand & have found it very good. Have lymphodeema from the waist down & would wonder if I’d have managed the abdominal lymphodeema as well with only leg attachments for the pump.... the pump moves large amounts of fluid for me & I wonder if I hadn’t the full trouser garment, how much of it would have stayed abdominally, despite doing additional mld. I have spinal issues & needed to decrease the pump pressure because Of pain, you might have to if you get a full trouser garment, due to the stoma. Best of luck. Megs

[AnnCarole]

I have lymphedema (both legs & torso) from hight doses of radiation for stage 4 gastric CA. Use the FlexTouch pump. Medicare covered this. It's a pain to get on your legs. Does it help? I don't know. My left leg which is worse than the right has sill gotten larger but not a lot so perhpas this is helping to keep it in line. I needed a scrip from my MD. I'm in the USA

[naominorthenellis]

They have a range of pumps and garments and they will be able to advise which is the best pump and garment for you and your specific condition taking into account all of your medical needs. I am afraid I can't advise you from here in the UK. Good Luck, its brilliant! NNE

[Cervivor1974]

I love my Flexi Touch. It’s amazing and Mayo also agrees its a great company. It has several chambers and works well.

[2198224]

Thanks to all of you who replied with information about the different pumps you use. Have had some computer problems, so am just now getting back to you. I have requested a dealer to call me regarding the Lympha-Pants. Hasn't happened yet... And I will be trying to see if I can get a trial somewhere of the it, the Flexi-Touch, and Tactile pump. Perhaps I am too far away from a major city to get a call back, but I'll keep trying. Thanks again.

[Donna5658 in reply to 2198224]

If you haven't already gotten a sequential pump, I have found the Flexitouch by Tactile Medical for my left leg lymphedema to be the best. It took me two years to appeal, but my insurance company ultimately paid for the entire thing. Tactile let's you have the Flexitouch almost immediately and doesn't expect you to pay for it as they know one's appeals eventually work and insurance in most cases covers the total cost. If you want to discuss this further I can give you my private email address. Someone helped me enormously with the process and I would like to pay this forward for someone else.

[2198224 in reply to Donna5658]

Hi Donna5658,

Thank you for providing such good information about the Flexitouch. Last fall I was in touch with their representative who thought she would be in the this rural Montana area in October. Never showed up. My subsequent calls to her were not returned, but I did find the phone number for the headquarters. I have not contacted them ...yet. Perhaps the diameter of my legs is not as huge as many of the people who have the pumps. Top of knees is about 52 cm., so I wonder if I wasn't called back because I'm not yet qualified? Or, at 76, maybe I'm too old? The lymphadema therapist I saw last year submitted all the paperwork, and my primary physician said she would write script for it, so I'm not sure what the hangup might be.

So, yes, I would like to discuss it further with you. I know this site has a way to send a private message with an email address, but I can't locate it right now. Perhaps you know how to do that.

Meantime, I do get some relief: I sleep on my back with legs both up on a stack of bolsters and pillows. In the morning my R leg has lost a great deal of fluid, and the L leg is soft and flexible, no longer hard. So that is my primary way of decreasing the fluid. Then I keep it to a "slow roar" through compression garments.

Meantime, I discovered a mini trampoline (rebounder) discussed on this site, and I do find it helpful for moving lymph fluid and for balance. Now that the weather is improving here I am wishing to get outside walking a bit. However, I can't go far because legs get sore and tired.

I spend most of my time taking care of my health issues and have had to drop most of the volunteering I've enjoyed. I have hoped a pump would help me get back to some of the old lifestyle I've enjoyed.

Again, thanks for your "paying it forward" kindness! I will hope to see a private message from you.

~mk (2198224)