My Flexi-Touch MLD is in - Get it Jan 19th
Susan
edit added: Got a call this morning from my L-Guy. The rep is going to be at Ft. Meade and my appt. with him is set for 1000hrs (10AM) on Wed. Jan 19th. Now just have to pray that we don't have a blizzard that shuts down I-90 then as I have to go 30 miles on it around the northern face of the Black Hills and then about 5 miles in Sturgis to get there. OH Well - unless they close I-90, I'll be there - have 2 different 4X4's (a Bronco II and a Dodge 3/4t) that either will make it unless the roads are officially closed - then I'm not about to try - can reschedule.
Comments
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cool!
i've never heard of such a thing ... it's a machine that will do the MLD? Very cool.
Congratulations! Hopefully you'll figure out how to use it soon!
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Such a great idea .. same question as Dawne.HopeDawne.Hope said:cool!
i've never heard of such a thing ... it's a machine that will do the MLD? Very cool.
Congratulations! Hopefully you'll figure out how to use it soon!
.. machine will do everything for you? Can't wrap my arms around the idea .. but I am sure it will provide much help.
Please let us know how things are going, okay.
Strength and Courage
Vicki Sam0 -
Arm and upper body onVickiSam said:Such a great idea .. same question as Dawne.Hope
.. machine will do everything for you? Can't wrap my arms around the idea .. but I am sure it will provide much help.
Please let us know how things are going, okay.
Strength and Courage
Vicki Sam
Arm and upper body on affected side have a 'garmit' that has 24 or 27 sections that air moves through in a certain pattern and speed and it drains (or helps to drain) the lymphedema. At least that's how it's explained to me. Lymphedema is not doing too good for mr - hand is better with the new gloves but not great nor is arm. My new over sleeve for night sleeve has helped also but not quite enough. Also have a fair bit of lymphedema in shoulder,body and chest - the machine will work on that too. As I understand it to start I'll use it for an hour daily and then depending on how it's working either increas or decrease or just stay the same. (www.flexitouch.com)
Not sure what they cost but are not cheap and according to my PA and L-guy this one is a Cadillac of MLD's. So we'll see. I knew that I'd have to wait over the Holidays probably to get it but now I know it's 'here' and the Holidays are over - Iwant it NOW.
Patience - Susan Patience. Good things come to those who PATIENTLY wait - BUT I want it NOW! LOL0 -
So close, but still the
So close, but still the waiting game. Patience is not my strong suit, so I understand how you want it NOW! I hope you find many fun things to do for distractions while you wait. And I hope you get the relief you need, once you finally get to use your new caddy.
Hugs,
Linda0 -
Susan .. Praying for patience .. and quick resolve forGabe N Abby Mom said:So close, but still the
So close, but still the waiting game. Patience is not my strong suit, so I understand how you want it NOW! I hope you find many fun things to do for distractions while you wait. And I hope you get the relief you need, once you finally get to use your new caddy.
Hugs,
Linda
you!
Strength and Courage,
Vicki Sam0 -
I have a flexitouch..
and it works really well.
The rep actually came to my house to train me how to use it. I learned about it from my lymphdema therapist. I meet a rep at her office and tried the machine, loved how it felt.
The machine will be preset for pressure and time due to your situation. I use it daily for 60 minutes. Mine consist of the machine/pump, three brown qulited garments, and plastic hoses. The garments have lots of velcro, the rep will help fit the garments to your body.
Its very relaxing. It has helped with the swelling and hardness. I still wear my sleeve, but rarly wear my glove. My lymphdema is severe and manual massage did not seem to be helping. Wrapping helped, but having it wrapped 24/7 was impratical and hot.
Be sure to go to the bathroom before you start your session! You're like a kid in a snowsuit! I watch TV or a movie while I do mine.0 -
Glad it's arrived andRague said:Arm and upper body on
Arm and upper body on affected side have a 'garmit' that has 24 or 27 sections that air moves through in a certain pattern and speed and it drains (or helps to drain) the lymphedema. At least that's how it's explained to me. Lymphedema is not doing too good for mr - hand is better with the new gloves but not great nor is arm. My new over sleeve for night sleeve has helped also but not quite enough. Also have a fair bit of lymphedema in shoulder,body and chest - the machine will work on that too. As I understand it to start I'll use it for an hour daily and then depending on how it's working either increas or decrease or just stay the same. (www.flexitouch.com)
Not sure what they cost but are not cheap and according to my PA and L-guy this one is a Cadillac of MLD's. So we'll see. I knew that I'd have to wait over the Holidays probably to get it but now I know it's 'here' and the Holidays are over - Iwant it NOW.
Patience - Susan Patience. Good things come to those who PATIENTLY wait - BUT I want it NOW! LOL
Glad it's arrived and hopefully you'll get trained real soon and get some relief. I've never heard of them but glad you have and that you have one. Hope you don't have to wait too long..
jan0 -
You are gonna love it!
I have a lymphaPress brand machine....with a sleeve and 1/2 chest/torso garment. I had used a pump at PT office before they saw it was helpful for me and ordered me one. It is wonderful and has helped tremendously managing this since MLD alone did not....and wrapping 24/7 is not practical as you said. I still wear my sleeve durijng day and a glove. I run my pump at least 2x a day.......it is soothing, relaxing, and it works! Takes a bit of schedule planning in the mornings..... Good luck with your machine and the treatment!0 -
I haven't tried one - we'reShirleyCurls said:I have a flexitouch..
and it works really well.
The rep actually came to my house to train me how to use it. I learned about it from my lymphdema therapist. I meet a rep at her office and tried the machine, loved how it felt.
The machine will be preset for pressure and time due to your situation. I use it daily for 60 minutes. Mine consist of the machine/pump, three brown qulited garments, and plastic hoses. The garments have lots of velcro, the rep will help fit the garments to your body.
Its very relaxing. It has helped with the swelling and hardness. I still wear my sleeve, but rarly wear my glove. My lymphdema is severe and manual massage did not seem to be helping. Wrapping helped, but having it wrapped 24/7 was impratical and hot.
Be sure to go to the bathroom before you start your session! You're like a kid in a snowsuit! I watch TV or a movie while I do mine.
I haven't tried one - we're basically in the middle of nowhere LOL. My L-Guy (yes he is certified) has only dealt with 1 or 2 other post mast. women and apparently the others haven't been the problems I've been. After talking with a lot of others he decided I needed it and my PA agreed so it was ordered. He's with VA so obviously he deals with more men issues than women. The rep would come to my house but to me, as K. is being trained while the Rep is here to be a Rep for them, it made sense to me to say I wanted to go up there so he'd be involved directly with me, the machine and the Rep. for future issues IF any should arise or for future women.
The only times I don't have either my day sleeve and glove on or my night sleeve and over sleeve for it on, is when I'm batheing. Of course, that does nothing for the edema above them in shoulder or on body/chest.
Thanks for the bathroom tip - I hadn't thought about that. I had already thought about being sure I had my cell handy as Hubby always calls me between 7:30 and 8:30 to tell me where he's going to be working that day - he's usually way out in the boonies where is often no cell coverage so his idea is that if I have an idea where he might be, if he doesn't make it home, I'd have an idea where to start looking for him.
Susan0 -
Wrapping 365/24/7 is not ancavediver said:You are gonna love it!
I have a lymphaPress brand machine....with a sleeve and 1/2 chest/torso garment. I had used a pump at PT office before they saw it was helpful for me and ordered me one. It is wonderful and has helped tremendously managing this since MLD alone did not....and wrapping 24/7 is not practical as you said. I still wear my sleeve durijng day and a glove. I run my pump at least 2x a day.......it is soothing, relaxing, and it works! Takes a bit of schedule planning in the mornings..... Good luck with your machine and the treatment!
Wrapping 365/24/7 is not an option really and trying to wrap shoulder and body also presents problems.
Morning time is not an issue for me - Hubby wakes me up when he leaves for work at 6:15, I roll over and back to sleep or read so being somewhere at a particular time is not an issue except very occasionally for me.
You only have day sleeves and gloves - no night sleeve? Without my night sleeve, Isotoner glove and over sleeve, I'd have much worse issues .
Susan0 -
with using the pump 2 or 3Rague said:Wrapping 365/24/7 is not an
Wrapping 365/24/7 is not an option really and trying to wrap shoulder and body also presents problems.
Morning time is not an issue for me - Hubby wakes me up when he leaves for work at 6:15, I roll over and back to sleep or read so being somewhere at a particular time is not an issue except very occasionally for me.
You only have day sleeves and gloves - no night sleeve? Without my night sleeve, Isotoner glove and over sleeve, I'd have much worse issues .
Susan
with using the pump 2 or 3 times a day, I now only have to wear a sleeve & glove during the day. I once a week or so wrap the fingers and hand as shown how by lymph pt...and I also use the Kinsio Tex taping wrap on hand/fingers too. The tape stays on for a couple days/nights. But, no more sleeve at night which is nice. The arm feels achey at night...but does not swell...in fact it seems to drain. I do the pump first thing in a.m., then if I am home midday, and always an hour before I go to bed. Good luck with your pump........I am sure you are counting the days til it arrives. BTW, mine is set at 40/30/20 now.0 -
CuriousRague said:I haven't tried one - we're
I haven't tried one - we're basically in the middle of nowhere LOL. My L-Guy (yes he is certified) has only dealt with 1 or 2 other post mast. women and apparently the others haven't been the problems I've been. After talking with a lot of others he decided I needed it and my PA agreed so it was ordered. He's with VA so obviously he deals with more men issues than women. The rep would come to my house but to me, as K. is being trained while the Rep is here to be a Rep for them, it made sense to me to say I wanted to go up there so he'd be involved directly with me, the machine and the Rep. for future issues IF any should arise or for future women.
The only times I don't have either my day sleeve and glove on or my night sleeve and over sleeve for it on, is when I'm batheing. Of course, that does nothing for the edema above them in shoulder or on body/chest.
Thanks for the bathroom tip - I hadn't thought about that. I had already thought about being sure I had my cell handy as Hubby always calls me between 7:30 and 8:30 to tell me where he's going to be working that day - he's usually way out in the boonies where is often no cell coverage so his idea is that if I have an idea where he might be, if he doesn't make it home, I'd have an idea where to start looking for him.
Susan
When I meet with the rep in the Therapist office, she took body measurements in order to get the right size garments; height and weight as well. The garments have a lot of velcro, which is kinda of a pain at times, but allows for adjustment.
The machine helped with the swelling in my torso and helped with shoulder movement. I didn't realize how much swelling I had in my shoulder and torso until I started using it. The glove and sleeve would push the fluid up into shoulder/torso and get stuck.
Yes, keep your cell phone handy! Many times I would put on the garments, laid down and realized I had forgotten the phone or the remote. When I first started using it, I was still in Chemo and dealing with fog.
Its good that your Therapist is getting training. Men can get lymphdema as well following any kind of surgery.
When you refer to a "night sleeve" what do you mean? I just have a Juno compression sleeve, a glove (which I hate) and the compression type ace wrappings. My therapist told me not to sleep in the compression sleeve, but I do sometimes. Wrapping every night was difficult. My husband is out of town a lot with work, and I was trying to wrap with my non-dominant left hand.
Sorry this is so long!0 -
Had another 'bathroom'ShirleyCurls said:Curious
When I meet with the rep in the Therapist office, she took body measurements in order to get the right size garments; height and weight as well. The garments have a lot of velcro, which is kinda of a pain at times, but allows for adjustment.
The machine helped with the swelling in my torso and helped with shoulder movement. I didn't realize how much swelling I had in my shoulder and torso until I started using it. The glove and sleeve would push the fluid up into shoulder/torso and get stuck.
Yes, keep your cell phone handy! Many times I would put on the garments, laid down and realized I had forgotten the phone or the remote. When I first started using it, I was still in Chemo and dealing with fog.
Its good that your Therapist is getting training. Men can get lymphdema as well following any kind of surgery.
When you refer to a "night sleeve" what do you mean? I just have a Juno compression sleeve, a glove (which I hate) and the compression type ace wrappings. My therapist told me not to sleep in the compression sleeve, but I do sometimes. Wrapping every night was difficult. My husband is out of town a lot with work, and I was trying to wrap with my non-dominant left hand.
Sorry this is so long!
Had another 'bathroom' thought - be sure to put dogs out to 'potty' before starting.
K. measured me at the appt. when he told me that the MLD was being ordered. We're in western South Dakota so pretty much out in the boonies for so many things (but I love the openess.) I'm glad there are some adjustments as though I've maintained the weight I got down to during chemo and rads, I know that once it's decent out (right now we're -3F), I'll be getting in better shape and 'fitter' so will change measurements some.
Day sleeve and glove definately does push swelling into shoulder and thus body. When I take them off at night, upper arn/shoulder look like a 'muffin top' LOL.
Lymphedema does indeed attack many parts of the body for many reasons.
Night sleeves vs Day sleeves: Very different principles (at least as K. explained it to me). Day sleeve (mine are custom by Juzo) works as you do movements during the day - you aren't actively doing anything at night. Night sleeve (mine is a custom Tribute by www.solarismed.com )is different - you're not moving around much. It's thick and puffy with stitching that directs the flow. It feels a lot like a wrap on - it's bulky - but is easy to pull on (especially with pull tabs added - K. had them added to mine). Mine doesn't give me quite as much as would be ideal in hand so I use a finger tipless Isotoner glove with it (get from K.). It also isn't quite just right for the rest of it so I have 2 over sleeves (that are custom for it) that I can add over it - 1 works good - 2 are too much at the same time for me.
Yes - there are different garments for day and night.
Susan0 -
Susan, you wrote thatRague said:Had another 'bathroom'
Had another 'bathroom' thought - be sure to put dogs out to 'potty' before starting.
K. measured me at the appt. when he told me that the MLD was being ordered. We're in western South Dakota so pretty much out in the boonies for so many things (but I love the openess.) I'm glad there are some adjustments as though I've maintained the weight I got down to during chemo and rads, I know that once it's decent out (right now we're -3F), I'll be getting in better shape and 'fitter' so will change measurements some.
Day sleeve and glove definately does push swelling into shoulder and thus body. When I take them off at night, upper arn/shoulder look like a 'muffin top' LOL.
Lymphedema does indeed attack many parts of the body for many reasons.
Night sleeves vs Day sleeves: Very different principles (at least as K. explained it to me). Day sleeve (mine are custom by Juzo) works as you do movements during the day - you aren't actively doing anything at night. Night sleeve (mine is a custom Tribute by www.solarismed.com )is different - you're not moving around much. It's thick and puffy with stitching that directs the flow. It feels a lot like a wrap on - it's bulky - but is easy to pull on (especially with pull tabs added - K. had them added to mine). Mine doesn't give me quite as much as would be ideal in hand so I use a finger tipless Isotoner glove with it (get from K.). It also isn't quite just right for the rest of it so I have 2 over sleeves (that are custom for it) that I can add over it - 1 works good - 2 are too much at the same time for me.
Yes - there are different garments for day and night.
Susan
Susan, you wrote that lymphedema attacks other parts of the body? Can you explain that? I didn't know. I thought it was just our arms because of removal of lymph nodes.
Thanks!0 -
As it's been explained to meKylez said:Susan, you wrote that
Susan, you wrote that lymphedema attacks other parts of the body? Can you explain that? I didn't know. I thought it was just our arms because of removal of lymph nodes.
Thanks!
As it's been explained to me - any area of the body that has had surgery can develope lymphedema. Removal of lymph nodes does increase possibility/probabilty.
My L-Guy is with VA so he works mostly with men after prostate surgery thus leg problems with lymphedema. Also those with heart/lung surgery. In my case, I have lymphedema in arm that day sleeves and gloves and night sleeve definately help but aren't really taking care of at all. Also have edema in shoulder, along side/back, under arm and across chest. That's why I'm getting the LMD machine, we've tried different level conpression day sleeves/gloves and have extra over sleeves for my night sleeve but just aren't quite working even for just arm (the only time I don't have either day or night garments on is while getting a bath or shower). Also getting consistant compression on entire shoulder, back/side and chest area is very difficult so hopefully machine will work.
Does that make any better sense to you? I know - most only think of arm and day sleeves/gloves.
Susan0 -
Insurance questioncavediver said:with using the pump 2 or 3
with using the pump 2 or 3 times a day, I now only have to wear a sleeve & glove during the day. I once a week or so wrap the fingers and hand as shown how by lymph pt...and I also use the Kinsio Tex taping wrap on hand/fingers too. The tape stays on for a couple days/nights. But, no more sleeve at night which is nice. The arm feels achey at night...but does not swell...in fact it seems to drain. I do the pump first thing in a.m., then if I am home midday, and always an hour before I go to bed. Good luck with your pump........I am sure you are counting the days til it arrives. BTW, mine is set at 40/30/20 now.
Hi lymphedema sister,
How did you get approval for your madhouse?
With coast about $10, 000 to 12,000 how did you get it?
I have had 3 different ones since I got lymphedema and even a sleeve always a problem to get reimbursed.0 -
It does sound high tech likecahjah75 said:Susan
sounds high tech :-) Sure hope it works well.
{[hugs}} Char
It does sound high tech like Char said. Hoping it works great for you.
Jan0
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