Forever wrapped?

Moonbeam54

I had a full mastectomy 2 years ago. Followed by radiation. 19 nodes removed. Started with some very very mild swelling late last year. Started seeing a therapist, doing massage and wrapping. I swelled even more. Particularly my hand started swelling which wasn't swollen before wrapping. A new therapist had me try wrapping again. However, after a month of wrapping, I'm told I may have to wrap forever. I may not be a candidate for compression garments. Anyone heard of this? I can't imagine wrapping my arm forever. All day and night!

kathabus

Hi--I have mild lymphedema and I manage it with a compression sleeve, compression bra, massage and pump. I did many months with a therapist and I did a week or two of wrapping. We did it to "fine tune." It did bring my measurements down even more.

But I have to say....I had a HARD time living like that. I can't imagine being in a wrap forever. At least with the sleeve and gauntlet I can take the gauntlet on and off throughout the day. And with the wrap you just can't move like you can in a sleeve. And it's so bulky.

I can see doing the wrap 3-4 times a year. But why wouldn't you be able to wear a sleeve with a glove or a gauntlet most of the time? I don't understand that. Did you try it and it just didn't bring the swelling down?

I don't have much to add other than....I was curious why you couldn't wear the sleeve most weeks. Sorry you're going through this. This lymphedema can be tricky to keep under control.

Moonbeam54

Yes the wrapping is not fun. The therapist doesn't think my swelling is managed without the wrap. I have been using a pump for three weeks now, massage and beefed up my exercise. But I have still spent more of the last six months wrapped than unwrapped. I hope they figure out a way to not remove lymph nodes someday.

Spookiesmom

My first time around 11 nodes were removed. I woke up from

bmx with a swollen hand. Did the whole LE thing. Wrapped, massage, sleeve glove pump. But I’m in Florida. It’s hot and humid, and the garment was not comfortable.

The second time around on the other side7 nodes out. I haven’t done a thing with it. They both are swollen, look fat, but don’t hurt or bother me. I’m done with it, unless it really cuts into my life.

Moonbeam54

I'm glad to hear that you have found a process that works. I hope I can too. I do think I got worse after wrapping. Could be just the LE got worse but my gut says the wrapping was either wrong or my arm didn't like it. If my hand didnt swell to twice it's size when I Ieave off the glove I would do what your doing.

Binney4

Moonbeam, I am compression-sensitive, and maybe you are too. The first time I was wrapped my arm swelled, and since my hand wasn't wrapped that time, it did too. My therapist wrapped me more gently after that and included a hand wrap, and that worked to reduce the swelling. When it was reduced enough to be ready for compression garments my therapist advised the fitter about my sensitivity and she too was careful to control the compression level and sizing for my special needs. This problem is referred to as "rebound swelling", where the result of too firm compression is worse than it was before. Maybe your therapist hasn't had any experience with this, but you might suggest it to her, or find a therapist with more experience. We're all different, and our treatment needs have to be adjusted to those individual differences. There's hope, honest!

Let us know what you discover. Gentle hugs,
Binney

Anonymous

moonbeam

I have been fighting LE for 8 years, with 2 bouts of cellulitis. I am very vigilant(every day) with my pneumatic compression (Flexitouch) and wearing my compression sleeve/glove. My LE arm stays at proper size as long as I wear the flat knit custom garments. I get cotton because it is cooler, living in the south. I was only in short stretch bandages at the beginning and after cellulitis. For awhile I did the night garment along with the sleeve and glove but find I don’t need the night garment anymore.

I get measured monthly at my check ups. I do fluctuate up an down by 5% but find that is ok. There are a few days that I may put my sleeve on later in the day, or leave it off after an evening swim. Sometime I will just skip a day wearing compression but still do the machine.

Are you wearing flat knit? They are designed to not allow your arm get bigger if you wear them everyday. I don’t know why you would need to wrap if your circumference is close to normal.

Dee

Moonbeam54

Binney4, I am going to check into this. I feel like my story is similar to yours. I increased more after wrapping and found myself really wishing I had never started. The new therapist I've started seeing does not wrap tight. She just adds layers. I talked to her more about wrapping so much and she said I might get to the point of only wrapping at night. Sleeve and glove during the day. But she still doesn't see that I will get to go without wrapping at least at night. I religiously do the flexitouch also. I read some posts where folks have said they can change treatment after a while. Like you said you don't need the night garment anymore. I wonder what makes it different after a few years? I hope I am one of those people that maybe my body will just kick in and start doing what it is supposed to.

Binney4

Moonbeam, I think it was AlabamaDee who said she doesn't need anything at night anymore. I still need compression at night, but I use night garments instead of wrapping. They're lots more comfortable and convenient, and in the summer I can refrigerate them during the day so when I put them on they're cool and help me sleep (I live in the desert, so that's important--especially now with the extreme heat we've been having the last couple of weeks!)

Wrapping with more layers has the same effect as wrapping tightly. I use extra layering only when I have more swelling in my upper arm than in the rest of the arm--it works on the area that needs extra help but if I use it on my whole arm I still get the rebound swelling. Talk to her about possibly easing up on that too, at least to see if it helps. Some of us take more experimentation than others!

Hugs,
Binney

Jen2Mom

My arm is a funny shape (I have very large/flabby arms at the top and normal size from just above the elbow down). I never could get wrapped completely right. We found using kinesotape worked well for me. It was slower than wrapping but much more comfortable!

Moonbeam54

Thank you. We tried that on my hand but unfortunately it didn't work. Im starting to think my hand has a mind of its own.

Anonymous

Hands are sooo tough. I am constantly pulling off my glove to do dishes or eat finger food or write a letter. Then my hand starts to ache and get puffy so back on with the glove.

I did get some improvement with wrapping my fingers and hand along with my arm. It’s been so long that I could not duplicate the procedure myself. Hope I never have to.

My heart goes out to you who suffer from this horrible disease. It’s pretty cool that actor Kathy Bates is our spokesperson!

https://lymphaticnetwork.org/news-events/kathy-bates-talks-about-her-lymphedema-experience-and-activism

Dee