Swee spots

[katytambou]

Hi, I kind of new to this whole Lymphedema thing, so I need alittle help. I have lymphedema in both of my legs and my right leg is the worse. My up inner thigh has this big bulge and knee my is just plain fat and big and I can feel the my knee mushy. If I bandage my leg all the way up to my groin area at night I can't sleep, and if I bandage past my knee the bandage falls down. My knee is not as bad then, but I know it could be better. So I bandage only below my knee. I saw sewll spots and I wonder if they are worth buying and do they work? And can you wear them with the bandages and compression panty hose? ( I hate those hoses )

Thanks,
Kathy

[patoco]

Hi Ya Katy

Super welcome to our family here

From what others have said about swell spots, I actually do recommend them.

I have used a "home-made" form of them to help with some tough areas. You "bandaging" experience sounds so typical for a lot of us. Below the knee does great - above - well that's another story. Ugh

Actually, a lot of us have a buldge on the inner thigh. In addition to an extra bit of self MLD, you may want to try those spots. Let us know if you do and how they work for you.

You do wear them with the bandages. When I use them they go right under the main short stretch bandage. I can't wear the compression hosiery so I don't know how folks handle that. I would think thought they might work under the hose as well. But, you probably would want to check with your therapist on how to do that so that you would have the best compression results.

We're here for you so please don't hesitate to ask any questions or concerns.

Best to ya

Pat

[katytambou]

Hi, Thank you Pat and I'll try MLD on the inner thigh and I'll let you know. Thanks again Kathy

[roadmon]

Can you tell what these sweet spots are? I have no idea....

Beck

[roadmon]

I guess they are swell spots, not sweet spots!
Beck

[Cassie]

Yum! Sweet spots -- sounds great! Chocolate, I hope!

Swell spots aren't quite so tasty, but they do help with the tough areas, so maybe they're sweet too in their own way. Pat is talking about homemade chip bags (I think - aren't you, Pat?) They're shredded foam sewn into a piece of cloth and shaped to whatever area needs special compression and/or help breaking up the hardness (fibrosis). The Swell Spots mentioned in the original post are commercially made cloth shapes stuffed with chipped foam and "quilted" with lines that match the lymph drainage pattern of the area you're trying to treat. Straight up and down for an arm or leg, fanned out for the axilla. Companies that make them include Solaris-Tribute and JoviPak, and bandage supply places usually sell a variety of them. I wear a fanned swell spot in my axilla, held in place by my bra or camisole, and I use a palm spot inside my glove to keep the swelling down in my hand.

Hope that helps!
Cassie

[patoco]

OMG...chocolate swell spots ...you know what I would be doing with those .....hmmm....a bowl of chocolate ice cream....hershey's syrup and a chocolate swell spot.

The type of swell spots I was talking about were the homemade ones. The therapists over in Alabama had made them.
Really surprised too, they've lasted a long time.

Another thing they did and that I use from time to time are custome cut pieces of foam rubber. Those are about the simplest and cheapest ones to use.

Pat

[ma1290]

I use swell spots almost every day and they are very helpful. I put them under my short stretch bandages at night and under my jobst elvarex garment during the day. I used to make my own and they worked just as well. Either way, I definitely recommend them.

[katytambou]

How thick is the foam that you make for the swell spots?

[ThirdHorn]

Hi all:
For those of us who aren't so handy, Solaris makes ready-made Swell Spots that are available through places such as bandagesupply.com. They look very festive (different colors)! I've not used them, but I do have the Solaris Tribute nighttime gear (for both legs), which is kind of like a wonderful down coat with some compression built in. I also got the sleeves that go over the garments to add some compression. Very comfy. Very pricey. But here's my REAL point (!): I've talked to the Solaris people and they seem compassionate and knowledgeable. I feel comfortable doing business with them.
Hope this helps!

Margie

[katytambou]

Thanks Margie, Yes it does help. Also since you brought it up how are the night comperssions The bandageing on both my legs make it very hard to sleep thur the night. Plus I tried to bandage all the up to my groin and there is no way I can even fall a sleep, so I only do it up by my knees. If I'm home for the day I'll bandage up, but I really need the bandage all the way.

[Kim]

Hi Katy,
Wrapping all the way to the groin is a pain, but you'll get used to it. I've been doing it for 3 years now. It does take time to adjust, no doubt about it, but after a while it becomes normal. Every once in a while, I give myself a break and don't wrap. But guess what...it feels so weird that I can't sleep!

How I would love to get something to replace the time consuming nightly wrapping, but I just can't afford it. I don't know what your situation is, but for now I would encourage you to keep wrapping all the way up if your legs need it. It's odd and bulky and feels weird and uncomfortable for a while, but if you need it, it's worth the time it takes to adjust.

Kim

[ThirdHorn]

Howdy Katy:
The Solaris night compression garments are very comfortable. Mine go all the way to my groin, as do the sleeves that cover them. Instead of using the sleeves, I can bandage over the garments if I want more compression (which I've done once or twice.) It's much quicker than bandaging (it only takes two bandages per leg).
I don't know the real price yet (I'm not sure my insurance is going to pay for it), but I believe it's in the neighborhood of $600 per leg. Yep, you read that correctly. $600. Maybe more. They are custom-made to my exact measurements (my name is on the tags!), and they have a one-year warranty (though, with care, they should last longer.) I'm very fortunate in being able to come up with money if necessary - - - I justified it by reminding myself that I'll probably have enough in medical bills this year to take a tax deduction (I've decided to think of this as good news!) It's also quick and comfortable which makes it very easy to be compliant.
Okay, I've rambled on long enough.
Katy, you hang in there - - - so many people are thinking of you.

Margie

[ma1290]

I agree with Margie on the solaris tribute, I have one too and it cuts down the amount of time it takes to wrap.

To answer this question:

How thick is the foam that you make for the swell spots?

I used to cut little cubes of foam about a centimeter or less in length on each side out of foams of varying densities. Then I would mix them together and sandwich them between strips of medipore tape so they would stay together in a bundle. One time, a therapist cut out foam for me in the same way and mixed them together inside a pouch she had made out of a stockinette.

Premade swell spots are definitely more convenient.

[katytambou]

Hi All, Thanks for responding. I don't know what I would do with out this site. At times I feel I'm the only one with Lymphedema and there's no one to ask a question or talk to. (To get off this Boo Hoo Kathy ) I got the swell spots and am trying them out, plus I'm waiting for my insurance to Ok or not the Flexitouch machine. It's been 2 month and they are still looking in to it. Also I saw the night compression and I was woundering if they work, and since I know now, I'll be looking in to them more. And yes the cost is up there but I'm fortunate enough to buy them if need be. And then again it would be wounderful to get them, so my husband don't have to wrap every nite. He dosen't have the problem wrapping my legs I do and he won't let me do it. It's just really hard to see him on his knees wrapping my legs e-v-e--r-y day for the rest of our lives. He dosen't deserve it. I know I'm lucky, I'm cancer free, have my husband, kids, grandkids, and etc but sometimes I wish ................

[ThirdHorn]

Oh, Katy, Oh, Katy:
It's okay to whine. Really. If you can't whine to US, who can you tell it all to?! Besides, many of us know what you're talking about: I have to remind myself periodically that, oh, by the way, I don't have cancer anymore. I've heard lots of people talk about the cancer itself being almost the least of their problems (strange as that may sound to the uninitiated). I simply call cancer "the gift that keeps on giving."
I get the sense that you, dear Katy, are NOT a chronic complainer, but someone with a positive spirit who is going through an extremely difficult time. And who is clearly grateful for all the good things in her life.
You hang in there, girl.

Margie

[katytambou]

Hi Margie, Thanks so much, but it seem there are alot of times I don't know to handle this lymphedema. Cancer was much easier to handle. I don't like to complain, and try to stay strong, but at times I just wish I could have normal legs again, to wear MY shoes, not the ones I'm buying now and just have that feeling of nothing on my legs. My whole life has changed. I fell like my life is now based every day on my MLD and wrapping, when there is better things I could do with my life. And then again I tell myself stop it and be happy you lucky blank. I think if I knew what I know now, I don't think I'd have my Doctor take any Nodes out. And yes I know that is a big risk if he didn't take some out and there are other reasons you can get lymphedema, but at this time I wish.......................

Kathy

[Cassie]

Hi, Kathy,
I hear you, for sure. Same here! In fact a couple of years ago a researcher named Elise Radina did a study of cancer survivors with lymphedema. The reasearchers were surprised to hear MANY times, from people with all stages of cancer, that the lymphedema was in many ways harder to deal with than the cancer. WE aren't surprised, though! Also, one of their chief findings was that we were struggling with "feelings of abandonment by the medical community." On, no kidding?!

I've had lymphedema for four years now. I don't know about you, Kathy and Margie, but I can be both grateful to be cancer-free for so long and truly unhappy with the lymphedema all at the same time. The gratefulness for surviving cancer this long doesn't make me one bit happier about having both my arms (and my chest too) encased clear to the fingertips in compression garments day and night.

But what HAS gotten better is that I've gotten the garments, and the skills, and the connections with others that I need in order to cope and take back some control of my life. And besides, my little corner of the medical community isn't quite so dumb about lymphedema as it used to be (seeing as how I'm always feeding them new information! ) so I'm not feeling quite so abandoned either. I thought I'd never be able to say that, because it took sooooo long.

Kathy, you'll find the night garments a huge relief. Huge. Go for it. I'm really, really sorry you're smack in the middle of working out all the stupid management details. It's so discouraging! But we're definitely here for you, and your husband too. Let us know how we can help.

Gentle hugs,
Cassie

[ThirdHorn]

Is it "Katy" or "Kathy"? I don't want to live my life without knowing what to call you!!

Margie

[katytambou]

Hi, Thanks Cassie. And Margie it's Kathy but if you want you could call me katy, it doesn't matter

Kathy or Katy