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Topic: good idea hint

Forum: Lymphedema — Risks, tips for prevention, and info about products that can address the symptoms of lymphedema.

Posted on: May 22, 2006 12:34AM

jinky wrote:

Hi Everyone, Well after 4yrs double mastectomy i don't have to wear a bra anymore. I don't have LE in my chest.
I discovered a couple of months ago something that has changed my life for the better.
I found those shelf tops(ones with double layer at bra line) made for me. I put 2 very lightweight weight(ones you get at hospital with cotton batten) prothesis under the top between the layers. It doesn't fall out as it is tight across chest.The tops have adjustable straps and you get them at walmart...sears....anywhere. I bought 12 of them.What a difference as wearing a bra bothered my shoulders. Thought i would share this. LE hugs jinky
age 2, grade 1, 4 chemo, 5 yrs tamoxifen, femara 48mts, preventative mastectomy 2005 Dx 4/30/2002, ILC, 2cm, Stage II, Grade 1, 1/11 nodes, ER+/PR+, HER2-
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May 22, 2006 02:17AM inspiewriter wrote:

Thanks for the tip. I have a few of those type camisoles and maybe I can put my proth. in between those layers.

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May 24, 2006 04:21PM Binney4 wrote:

I'd like to share a hint we just discovered. With LE in my right (dominant) hand, I'm finding door knobs frustrating -- my gloves slip around on them and it's hard to get a good grip. At the hospital where I volunteer I noticed someone had put Co-Ban on the staff lounge door knob, so I tried it at home and it REALLY works like a dream. Even my husband likes the way it works, and hand strength is not a problem for him! (Kinda makes you wonder why doorknobs aren't textured, doesn't it?)
Binney
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May 26, 2006 02:04AM jinky wrote:

Be careful with your glove. I just noticed mine getting very thin at the wrist where it rubs back and forth across my mouse pad. I have one with the wrist support(grey).
I just cut up a old sleeve and put that over my wrist(very loose) so it will stop. LE hugs jinky
age 2, grade 1, 4 chemo, 5 yrs tamoxifen, femara 48mts, preventative mastectomy 2005 Dx 4/30/2002, ILC, 2cm, Stage II, Grade 1, 1/11 nodes, ER+/PR+, HER2-
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May 26, 2006 02:04AM NPat wrote:

Binney,
I LOVE you... thanks for the hint! I actually wish the gloves came with little silcone "knobs" on the finger pad area so I could pretend I was tree frog and grip things!!!! I have a roll of coban in my purse... they use it to apply pressure after blood draws since I am allergic to tape.
Pat
NPat
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May 27, 2006 04:02PM sherry7 wrote:

Pat and Binney, what would we do without you around here. I have had the steering wheel slip because of the glove and think I might get a gripping wheel cover. What do you think? We also have baby doorknob covers on our doors for grandson, it can be a challange! Be well, Sherry

let the miracles happen... Dx 9/17/2005, DCIS, 1cm, Stage 0, Grade 1, 0/0 nodes, ER+/PR-, HER2+
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May 28, 2006 07:06AM Binney4 wrote:

Y'know, Pat and Sherry, there is a tube of something-or-other that they sell at fabric stores that you can dot onto knit slippers to give them a non-skid finish. I wonder what a few dots of that on the palm would do to the compression ratio of a glove (hee-hee!) Maybe I'll try it on an old pair.

Sherry, I don't know what Bio-Con sleeves and gloves cost because my insurance has so bolixed up all the billing there's no way I could ever figure it out. NPat knows, I think. Or call Lari-Ann at 1-800-421-5647 and ask. There are assorted features (like elbow inserts or something) that probably add to the cost, but I don't use anything like that. I use a skin tone, but this last time tried black sleeves and LOVE them so will probably order a whole black set next time (I have a black vest so the sleeves look good with it.) Also, they have a 30-day warranty for correcting any flaws you might notice, but even after that, adjustments or outright repairs to a garment are very reasonable (around $14 per garment). (How do I know this? For starters, I've conclusively proven that laying your gloved palm on a hot stove burner will NOT cause the fabric to burst into flame -- nice, huh! On the other hand, it doesn't do the fabric a lot of good either...)

I'm sorry, but my brain is slipping gears again -- wasn't it you, Sherry, who asked how you'd know if the truncal LE needed some attention? Are you managing to keep the swelling down with just massage? Are you wearing any kind of compression, like a wide-sided bra or a tight sports shirt? Here are some possible problems you'd notice if things were out of control: pain; swelling spreading to your back or down your side; clothes leaving new indentations; swelling not responding to massage. When you did therapy, did your therapist wrap your arm? Did she indicate there was swelling in your arm or hand? Another part of therapy that might work for you with the truncal LE is kinesio taping, which you might call your therapist and ask about -- some of them aren't trained in using it. Or you can use a Swell Spot, which is a bulky little fabric-and-foam deal that adds compression to a specific spot.

Before I ramble clear off into oblivion, I'll quit right here!
Binney
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May 28, 2006 12:08PM NPat wrote:

Binney,
Thanks for the info on the silicone bump stuff. I am heading to Joanne Fabrics. I also am going to get some fabric paint so I can paint a large emerald on my wring finger and diamond tennis bracelet. I have several sets now and that would be fun!

I think if I paid cash for my BioConcepts glove and sleeve the total cost is ~$140 for the set. Of course, with a 3rd party hangling the ordering (TRICARE makes it difficult to get reimbursed if you pay for it yourself at the lower cost ... go figure) it is double that. Juzo glove alone was $275.

I like the expansion panel and get that added each time. I have one with the antecubital patch but it wasn't in the right spot and I don't have problems with irritation in that area so I don't order that feature. Maybe I need to order a pink set for October... breast cancer awareness month!!!

Pat
NPat
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May 28, 2006 01:39PM sherry7 wrote:

binney and pat thank you for your input. Yes Binney, I am the one whos arm LE worked its way to the trunk, I actually noticed the LE in my trunk, breast area first and went to PT. I just don't know when we know to add more compression to ourselves. I had a few days where I woke up with a puffy face, surely fluid, called PT and they said nothing they could think of I could wear a face thing at night, nice mummy look. But she did not sound sure... So much in this field is grey...Thanks in advance , Sherry
Quote:
"Plant a flower with a child and you both will grow"
let the miracles happen... Dx 9/17/2005, DCIS, 1cm, Stage 0, Grade 1, 0/0 nodes, ER+/PR-, HER2+
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May 28, 2006 01:47PM sherry7 wrote:

hi again, co-ban is much cheaper from a farm supply its used for horses so comes in bigger rolls and better price....FYI
Sherry
let the miracles happen... Dx 9/17/2005, DCIS, 1cm, Stage 0, Grade 1, 0/0 nodes, ER+/PR-, HER2+
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May 28, 2006 02:57PM NPat wrote:

Sherry,
I had a patient with facial LE. My therapist treated it with massage. The lady had a stroke and her entire left side of her body developed LE. She was so thrilled that her arm and leg became normal sized with treatment. You need to aske Binney what info she has.

Binney, where aaarrrreeeee you?

Pat
NPat
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May 28, 2006 05:56PM Binney4 wrote:

Facial massage is definitely possible, but if your therapist sounded unsure then I'd find a new therapist. My therapist has many years of experience and has treated facial LE. And I can't remember why we were talking about it, but she gave me a demonstration, and...ladies, it is to die for! She gave me the written diagrams and instructions, because I found it worked wonders to calm my autistic son. I'd offer to send it to you but it's in a kind of code, showing symbols for different kinds of hand movements, and you'd have to have somebody actually show you. (I hadn't thought about it until just this minute, but I wonder if it would work for other people with autism? What a boon THAT would be!)

The LE facial garments, though, are no treat. Solaris makes one for night use and I think they have a picture of it on their web site (can't remember). I'm guessing they'd be reasonably comfortable, as the foam-filled garments I have are quite livable (hot, though -- you could chill it in the fridge during the day and it'd stay cool for some time.) Bio-Con makes them too, since they make burn garments, and those look formidable. They're for day use, which is enough to make my heart sink. So I'd go with the massage first. Only you'll have to find someone with experience and training. (On that subject, my therapist is Vodder trained and updates her training every 2 years, so she's always able to get new information as she needs it. I REALLY appreciate her.) Only guessing here, but it seems to me if you find a way to keep the truncal LE under control, then the facial swelling would be far less likely to become a problem.

I'm sitting up waiting for my night vest to get done in the dryer, but it must surely be done by now...g'night!

Binney
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May 29, 2006 09:33AM sherry7 wrote:

Binney was it your PT or LE therapist that put you in the vest? Thats part of my confusion, should I get a vest or wait? Thanks in advance...

let the miracles happen... Dx 9/17/2005, DCIS, 1cm, Stage 0, Grade 1, 0/0 nodes, ER+/PR-, HER2+
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May 29, 2006 03:09PM NPat wrote:

Sherry,
Binney will follow with a more detailed answer. If you are having some swelling in the trunk, you may want to wear something like a Nancy Ganz camisole. They fit snugly and have no seams... great at night. I am a 36 C and they do provide support without impairing lymph flow. I get them at T J Maxx for around $9.00 or you can buy them onlin for $28. No underwires... period (that's all I used to wear).

I ordered some Anita bras from Womens' Personal Health Resource that provide compression and are not binding... styles 5319, 5320, 5419, 5420. Your insurance will reimburse you for "thoracic vests" if you have LE... Get an Rx written with that exact verbage and you most likely will get better coverage costwise. I wore the Bellisse for a year but it didn't compress me medially. I am much happier with the Anitas. Oh, my LE therapist is a PT.

Binneeeeyyyy....
Pat
NPat
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May 29, 2006 03:39PM Binney4 wrote:

Hi, Sherry,
I'd give a look to the garments NPat suggested first, as they're more comfortable and easier to get, too. Because my insurance put up a fight about paying for therapy, I went for many months without good help. My first vests were suggested by my prosthesis fitter, who is also a LE fitter (and fortunately for me, a very good one.) After doing battle with the insurance and finding a decent therapist, I needed new vests because of the reduction, and my therapist suggested Bio-Con for my day vest. But for night, I was already happy with Solaris and continue to be. I wear a Solaris day vest now, too, but I recently lost the Solaris designer I was working with on tweaking it, so I'm suffering from designer-withdrawal at the moment.

If what you're asking is, who will decide when it's time for a chest compression garment, I think the answer is, if you've got truncal LE then you need to start the hunt for a camisole or bra that will work for you, and if that doesn't help control the swelling and relieve any pain you might experience, then it's time to see the therpist for that problem. Only, if your therapist hasn't been forthcoming with information, then consider finding one you can deal with more easily. This is a long-term relationship, and both sides need to be comfortable in it.
Binney
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May 30, 2006 02:37AM jinky wrote:

http://www.1north.co.uk/Merchant2/merchant.mvc?store_code=1&screen=PROD&product_code=416407
this is the mouse pad that has made my new glove almost see-through in the wrist.....it is made of luxfab so be careful....hugs jinky
age 2, grade 1, 4 chemo, 5 yrs tamoxifen, femara 48mts, preventative mastectomy 2005 Dx 4/30/2002, ILC, 2cm, Stage II, Grade 1, 1/11 nodes, ER+/PR+, HER2-

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