GRRRRRRRRR I HATE LE..........
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hello my LE sisters. Here is a little update on me. Came to NOLA for bilateral diep on Nov 1st ..surgery was long as I apparantly was a very complicated case...fantastic... so 11 hrs in surgery. recovery went well and I was released on monday the 5th. On tues the 2nd my left flap failed and I had to rush back to hospital for surgery to remove it. Sadness.. I can come back in March and have the left one redone using the Gap procedure. On the bright side the surgery itself has removed enough scar tissue to apparantly let my lymph fluid to flow again from the left arm. My arm feels better than it has in over a year. swelling down and hand looks amazing.
gma--so sorry that you are still dealing with this crap.
all others who are on this thread hang in there and just for the record LE sux!
Maggie
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forgot to add that I have been in hospital again since Tues night and hope to be released tomorrow if my counts are good enough.
Maggie
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Maggie - So sorry about your flap. But yeah and improvement in the LE is not just a silver lining, but a gold one.
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Maggie, so so sorry to hear what happened with the flap. ((hugs)) hope you can get released soon to come home. Your LE getting better after the surgery is really wonderful news.
Chrissyb, I would love to see Australia someday... It's good to hear your eval went well !
I would like to try the taping myself because I can't miss anymore work to go to LE appts. and its near impossible to get appts after work. I saw my old therapist Tues for a re-eval and now I can't see her till the 21st.
Gma,hope everything is going ok for you !
CindyL thanks for posting those links. The other two choices look so much better than the beige isotoner. But, I guess what will matter is which one really works best. Let us know what you think!!
Purple32, we might get our wish for different colors!I posted a few questions to the flexitouch LE thread but maybe here you wil have some advice? My therapist is recommeding me to get a pump for use at home (since I can't get to therapy easily). The one she uses is a flexitouch. Does anyone have any advice on pumps? If this should stay over on that other thread....sorry.
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Chrissy - maybe you could send your therapist to the Kinesio site - http://www.kinesiotaping.com/ and she could see if there are any seminars that she could attend. My therapist was certified, by also has a huge book showing how to tape for just about any situation. It helps with drainage & pain!
Maggie - it is a gold lining! Are you going to try recon again in March then?
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Maggie, good grief! I'm so sorry. But I have to say you sure sound strong and well--good for you! Very tough stuff. I'm thrilled about the LE improvement and hope that continues. Healing thoughts and prayers!
Gma, so glad you're finally on your way to a real fix. Anxious to hear how it goes, but for goodness sake don't push it!
Lee, Flexi is a good bet, but what you need to know is that it's no substitute for a good therapist. What is can substitute for is self-MLD at home, but be sure you've learned to do that before considering a pump, because it's an important basic tool for self-care. Home MLD with a pump requires that you devote an entire hour every day to uninterrupted treatment, so that's something else you want to consider. Self-MLD doesn't take that long and can be interrupted at any point, if your life is such that interruptions happen often. Does that help any? Hope so!
Hugs,
Binney0 -
I'm in recovery.. Have a drain this time and BS said every thing came out ok. Please pass it on. In pain trying to get it in control, but doing ok.
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I'm in recovery.. Have a drain this time and BS said every thing came out ok. Please pass it on. In pain trying to get it in control, but doing ok.
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GMA, glad you are in recovery and do hope all problems are behind you
rest now rest!
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Cindy, that is amazing, as I was looking at all three of those last night! Please give a review of the black and gray ones!
Gma, thinking of you today and hope this is the final fix!
Edited to add: Oops, posted before I read last page. Glad you are out of surgery, Gma, but please listen to the guidance of Ms. Binney!
Maggie, I am sorry you had to go through such a difficult experience, but certainly glad for the improved lymphatic flow in your arm. Take care, and before long you will be back NOLA for the GAP.0 -
What is the compression level on the arthritic gloves? I like the black ones.
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i emailed the company and got a prompt reply.
"I am sorry, we do not have that specific of information regarding the compression."
Sigh.
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Cindyl - At least you tried. Thanks for checking. Please tell us when you get them ... how they feel compared to the Istoner and if you have tried them ... the Mediven gloves. I'm not expecting them to be as tight as the Mediven ... but I'm curious. Thank you for checking.
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Gma
Hang on ....... The worst is behind you !!!!!!!!!!!
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Cindyl
I dd order the gray imaks just yesterday as well as another pr of ( fill fingered ) beige isotoners.
I will be interested to see how these IMAKS compare.
I'll be sure to post ...pls do the same. Mine may not arrive for 5 days ( got the cheapo shipping
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Maggie
Very sorry to hear about all of your woes and disappointments but thrilled to hear the good news about your LE. I would have imagined a surgery would make LE worse. That truly is a silver lining.
Now for rest and recovery!
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Got my gloves today. Wearing the gray imaks right now. The are a softer slightly plusher material than the isotoners. I don't expect that they'll were quite as well. They seem to be meant to wear seams in, but I suspect they would rub me raw, so I turned them inside out. The seams aren't quite as neat as the Isotoners. With a brief 1-2 minute try on, all 3 brands seem to be about the same re compression. More later.
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Mags20487, sounds like you could use some encouraging words...eighteen months ago I went to NOLA for a DIEP. I had implants removed along with a lot of scar tissue and capsule. When the bandages were removed from my arms several hours after surgery, I was amazed that my LE was virtually gone.
(Everyone -- LE or not-- has visits with the LE therapist before surgery, is wrapped prophylactically before surgery, and if you have LE, has daily LE therapy appointments after surgery. After discharge from the hospital they will send a car to your hotel to bring you back and forth for the visits to the LE therapist!!).
Like you, it was the best it had ever been. Previously I had to use kinesio tape and wrap my hand and arm 100% of the time. In a year and a half, I have not wrapped once. I have worn my Tribute glove two or three nights --- in EIGHTEEN months! So be encouraged that your improvement can stick. Good luck with your next surgery.0 -
Jerusha - that sounds amazing - are we not supposed to mention docs names on here? I see that a lot of you mention NOLA, is that Dr. Marga that you are going to, and have any of you with diep's had lymph nodes moved?
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Gma - sounds like things went well, thanks for the update.
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Hi all I made it through surgery and am back home i have 3 drains ugh! The Dr tool 1 small centenial node ahe will have the pathology report back when I see her Tuesday . she said i should be ok and not get lymphedema but i will be carefull and watch for any swelling ect. hope evryone's weekend goes good.
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YAY momto7!
Sounds like you will be low risk - hang onto that but please DO be carerful!
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RE: GLOVES
Does anybody machinwash isotoners ?
I was afraid to and have been hand washing. I now have alittle cut on ny finger ( not from glove) and I dont want to put these gloves on as they are not really clean, but my fingers are swollen.should I machine wash ? Any experiences ? They dont seem like they would hold up and I dont want them to shrink. what about dryer too ?
I have new ones coming...but not today.
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Purple, machine wash gentle (I use a lingerie bag), not hot, no bleach or other additives. Don't put them in the dryer. Glad you have another pair on the way!
Heal quick,
Binney0 -
Phew...okay, I can stop with the hand washing. ( I really didnt trust the instructions)
THX0 -
Report on Thermoskin Premium Arthritic Gloves, Black.
Tried these on this morning. They don't fit quite as snuggly as the IMAK gloves the fingers are a little longer. The skin is rubbery as opposed to the more jersy fabric of the IMAKs. They are a stiffer glove that would me harder for me to work in. The IMAKs could be worn one either hand so if you only wear one glove, you can still use both. Not so the Thermoskins. They are obviously right or left so you might as well wear 'em both, or find someone who wants the glove you don't need. I suspect that the would wear much better than the IMAKs. They seem better made and more durable. But the best/worst thing about them is that they are much warmer. The claim to provide therapeutic warmth... In fact they were so warm that I removed them after two hours, they were quite damp from my sweating palms and, I find that my hand is obviously swelling. Worse than it does if I wear nothing. So um no. Not good for LE. I'll be giving these to my friend who has arthritis and suffers from cold hands. I think she'll love them.
On to the Isotoners.
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and, I find that my hand is obviously swelling.
CindyThanks so much for the reviews!
I have the IMAK and ( 2nd pr ) of Isotoners ordered.I do love what the Isotoners do ( but WHY dont they come in black ??!!!!
)
You're a good friend !0 -
Cindyl - Not.good. I have the sweatiest palms ever ... thanks for sharing even though it wasn't the news we wanted to hear.
I really like the Isotoners but I find they stretch out pretty quickly ... but at least they breathe.
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LindaKR, NOLA( which I think actually stands for New Orleans Louisiana), has come to be synonymous on these boards with the Center For Restorative Breast Surgery, sometimes shortened up to the "Breast Center", a part of which is the St Charles Surgical Hospital. A lot of names! There are 3 doctors who make up the permanent medical staff-- partners, I guess. They are Dr Sullivan, Dr. Dellacroce and more recently, Dr Trahan. Dr Marga Massey does quite a bit of her surgery there, but also works in 3 other states at other locations. She has her own website, as does the Center For Restorative Breast Surgery. These 4 docs always work in teams, and in all combinations. They also have breast surgeons and gyn surgeons on staff. I did not have lymph node transfer but if you go on the "NOLA in September" thread and read back or ask around, you will find several women who have.
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