GRRRRRRRRR I HATE LE..........
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I'm just forgetting about trying to find an LE therapist. Since my last post I tried again making calls and thinking I would be able to find someone in MI where I live not happening. I feel so stupid in keep on trying, It's not worth it to put myself through this when the results are not there, don't know why this has turned out this way but I have finally accepted I'm not going to find an LE therapist.
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Pls see the message from cinnamonsmiles under LE and Emergency surgery... I am hoping our experts weight in , plus it is a real wake up call about WRITING about our LE ABOVE our consent signatures ( IMO)
Poor cinnamon! She has a Grrrrr story, and I doubt she will want to type it again and again...new thread there.0 -
I give up - That is all I have to say.
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Gma....I gave up long ago....I feel your pain....hugs
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I'm tired - I try to be positive but I just am in a domino - and it doesn't seem to have an end - BC, Nerve damage,LE, Sleep apnea and now bursitis because I did too much on a walk at home video... I'm just done... what is the next domino to fall???
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GMA, grrrrrr! Sorry, hopefully it helps to vent here, I am amazed at some of the things others have to fight for. I get the feeling where I have my appointments that they'd do anything I asked them to. I don't understand why they fight you on everything. It's just crazy.
Pink heart, I haven't been on line for several days, just saw your question. I manor sure about the cording, but I had a palpable lymph node and had neoadjuvant chemo. I had a allergic reaction and then was on high doses of steroids. I guess the chemo combined with the swollen lymph node caused the cording? I am not sure, but they told me the cording was not a per courser to LE. They were wrong in my case any way.0 -
My problem was the fitting....got tired of professionals trying to get it right.....never got the right fit, and these people were considered the best.....lol
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OK GMA
Time to dust off and carry on!
I feel the same exact way you do very often so I validate those feelings. I have lung disease,thyroid issues, osteopenia bordering on osteoporosis, I have BC that essentially went w/out tx due to other health issues, but for the LX which led to the LE, I have this odd low low BP and all that goes with it which stops me from many tx, I've had 3 broken bones, and I afraid of my upcoming mammo due to breast LE.
The more I exercise, the more bursitis or shin splints or plantar fascitics I get.
I'm wearing compression on trunk, arm, hand and legs...I feel like I am in a damn catwoman costume sometimes ! hiss!!!!
It all makes me so angry, I want to be ' normal" , exercise normally, functon normally, work etc etc... so I get up and do what I can as ' normally' as possible - fueled by anger. LE be damned ! That's what keeps me going.Find out what ignites you and then light that fire !
In the meantime ... xoxoxoxoxox
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I have finally accepted I'm not going to find an LE therapist.
penelope
Have you posted what area you live in ?> Maybe someone here can help, Yhey sure helped me find mine-online!
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Had a great therapist, but 40:00 co-pay, and 3 days a week, was getting ridiculous, especially since my LE arm was down to normal, went to be measures by (pro's))', and 2 times the idiots got it wrong, and both custom sleeves had to be returned........had to wrap again, and could not handle the wraps at night....just too much.....my arm welled again, and they wanted to start therapy from scratch again......I said "bullshit", and-stopped. Not worth all the stress and anxiety.......
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Ducky - I am horrible at wrapping and usually have to yank them off within hours of wrapping. My fitter ordered me the Farrow Wrap Lite Custom Armpiece (not the trim to fit). It is suposed to work similary to wrapping however it is a one piece garment with velcro that wraps up the arm in stages. If you google it on you tube you can see a video. I am hoping this will be the solution for flare days when I have to wrap and basic compression sleeves are not enough. I am picking up the garment on March 8th and will report once I have had a chance to try it out. I think is would be more forgiving then a custom sleeve and less bulky then wrapping, at least that is my hope
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o2b....was a fantastic wrapper...live alone, and had no help, ever. Was great from day 1. Mommy LE poster actually made a video of me doing it she thought I was that good, she was excellent.....just got fed up when the idiots came into the picture....i had to do a stocking, foam, then 3 bandages of various sizes........it was not easy, but I mastered it. Oh we'll shit happens.....
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Ducky, I would love to see your wrapper video. Is it on you tube or can it be?
You being the master wrapper but a sweller at the same time, do you wrap at night at least?
I practiced wrapping last night but I think I was too loose because I could bent my elbow way to easy once done. When I unwrapped a couple hours later I noticed my wrist has bunched up lines from my gauze around the wrist, Maybe the gauze is to old and not laying flat enough once I get the foam etc on. Anyone know? The wrist looked like wrinkled pantyhose on a ankle.
Girls I think it is great that you can vent here but at the same time it is great to pick up the support here and go with the wind! Try some suggestions and don't give up. I keep thinking of the old lady in the hospital in a wheelchair with a HUGH,fat leg. I talked to the nurses and they said the lady won't do anything with her leg. So they had her on duretics and pain meds. I have no idea what she will do once discharged, probably nothing. I was just so mortified seeing this that I vowed I would never give up. I didn't ever want to be that old lady.
By the way I believe duretics is the wrong treatment isn't it?0 -
Hugz, yes--diuretics remove the liquid but not the larger protein molecules, which then act as "fluid magnets" to draw fluid back into the tissue. They also cause inflammation, which results in the formation of fibrosis.
Without proper treatment that woman's LE will progress--not necessarily making her limb larger, but creating fibrosis and abnormal fat deposition that will be permanent. As that happens it creates still more lymph blockage, a higher infection risk, changes in the texture of the skin, and slow healing of any sores. Eventually her tissues will become lymph-saturated and her pores will leak caustic lymph fluid, which results in slow-healing (or non-healing) ulcerations of the skin. So let's hope she went home and had a change of heart!
Be well,
Binney0 -
Ducky
o2b sounds like she just might have a potential solution for you. I'm sorry for all you have gone through, but I really hate the thought of you giving up. I hope this garment works for o2 and that you might consider giving it another try.
I have had 2 bad custom gloves and it was frustrating.
And thank goodness for the ladies here that urged me on to find a good LEist. The first two LEists had me feeling like a leper. Neither laid a hand on me as my tx continued to be delayed. Then my fitter sat on my order ( perhaps she was angry that the first custom glove didnt fit ??) and my easily obtained sleeve was delayed by app 5-6 weeks solely because of her. I hear your frustration. When I tried the 2nd glove on , she seemed annoyed that I " didnt like it "! It was like a vice and my fingers turned cool and blue within 1 minute. No thank you!
As for finding a new LEist, I couldnt imagine I might possibly be able to afford to go outside of my INS. but this fabulous and highly qualified girl has been affordable- at least for now.I feel like I owe it to ppl like you to try to encourage as I am always encouraged here on the forum.
I shudder to think of how I might be doing or where I might be headed if not for the ladies here who have helped me- I so appreciate all of the support.
Sometimes you're the windshield, sometimes you're the bug.
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I went to work this morning looking normal, came back from my lunch time appointment wrapped from base of fingers to elbow. Everyone asked what happened to me, I didn't think to answer, with shark bite. I saw the new therapist in the same clinic I went to in 2009. She measured but didn't say if she was able to get the measurements I had done then. She said my measurements were almost the same between left and right arm, I said the swelling was in my 'smaller' hand/arm. She could see the evident swelling in the left hand. When she started wrapping she wanted to wrap my fingers and all the way to my axilla. I said that the last therapist (who is no longer there) didn't wrap my fingers and stopped at my elbow since my swelling was confined to my thumb/wrist area. My job is a computer help desk and I need my fingers somewhat free so I can type up my help tickets. She wrapped me the same area as last time. She did use a piece of komprex (sp?) on the back of my wrist/hand and sheet foam instead of the cotton roll that they used last time. She also ordered me new gauntlets since mine were totally stretched out (had for about 9 - 10 months). She is having me come back once a week for the next two weeks to check on my progress. I guess I will need to wrap more than I have in the past. I may also ask about the night sleeves so I won't have to wrap. I am looking at the options on the night sleeves. Does anyone have any idea about which brand works better for someone who needs light compression?
Sheila
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Sheila - I love my tribute nightsleeve. I have early stage LE in my arm and it's perfect for me.
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NatsFan - you must have insurance - I so am dreaming for one of those.. just can't afford it
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Sheila, I'll echo NatFan's thoughts on the Tribute nightsleeve. I too have mild LE. I wear my day sleeve/gauntlet generally only when I do stress activities with my arm, or on days when the barometric pressure makes it ache, or when I fly. But I wear my Tribute every night to bed, and I just love the way it feels. I wake up each morning with an ache-free arm.
I don't know if it was in this thread or elsewhere, but Binney made the excellent point that if you choose a night garment that does not adjust in size (and Tribute does not adjust with velcro or by any other method), be aware that you'll have to have it remade if your arm hasn't already reached its minimum size. The Solaris folks will alter a Tribute one time during the warranty year to accommodate a size reduction, but it's a pricey item if you have to pay for subsequent re-dos or for a new sleeve.
Perhaps others following this thread who are using adjustable night garments will share their experiences.
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Hi,
I have a question regarding the Step Up, Speak Out lymphedema web site. (SUSO)
I have had severe AWS-axillary web syndrome/cording since a few weeks out from my 7.5 hour BMX, ALND (19 nodes removed) surgery, and immediately followed by a 2.5 hour breast reconstruction with direct implants (that have since failed), for a total of a 10 hour unusually long surgery. I started PT 3 weeks post op (needed to wait until 6 drains were out), then radiation started 8 weeks post op (had to wait until PT could get my arm to lift back far enough over head for beam to target breast.) Everyone was clueless and never mentioned AWS -- except the PT-CLT. Don't have to stand on my LE soapbox here, because you all know that many breast surgeons, plastic surgeons and radiation oncologists are clueless about or understand the seriousness and prevalence of LE -- let alone its bitchy friend AWS-Axillary Web Syndrome.
I haven't reviewed the SUSO site for about a year, and just went there again today. I noticed in the Highlights column on the left that the following statement is now in bold letters: "... have concluded that axillary web syndrome is a risk factor for lymphedema." Further down, #3 states "Cording is associated with the risk or development of lymphedema." (maybe it's always been there but I missed.)
Do you know of any additional studies or journal articles that are more recent that you could direct me to relating to this (personally experienced) fact about AWS and LE?
Have any of your surgeons, rad oncs, etc. made these same statements about correlation between AWS and LE?
Perhaps Dr. Corrine Becker or her surgeons that have trained with her?
Also any new articles stating that whether cording is just scarring, or is lymphatic scarring?
I'm going to copy this and post on a few other LE threads. Thanks everyone, I appreciate your feedback and experiences!
Here is link to SUSO, to the AWS page:
http://www.stepup-speakout.org/Cording_and_Axillary_Web_Syndrome.htm
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RE: MLD
Is it okay to have an MLD session if one has a small cut in the hand ( where MLD would also be done ) I forget when/under what circumstances it was we were supposed to STOP MLD!
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Purple, if it's not infected, MLD could actually help keep it that way--by moving out stagnant lymph fluid and allowing the immune system to work efficiently. MLD is contraindicated in most cases of infection and with congestive heart failure (unless followed very closely by your cardiologist.) If you don't have a copy of Burt and White's "Lymphedema: A Breast Cancer Patient's Guide to Prevention and Healing" order one today! It has good information and a great index, making it a very useful reference for questions like this that might need immediate answers.
Be well!
Binney0 -
I cut my thumb last summer..........quite a good 'clip' and once I got the bleeding stopped (and believe me, that took some doing) I continued with MLD, and wrapping as I'd done previous to the cut. At the time it really scared the bejeebers out of me.
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I DO have a copy, Binney! Thanks so much - that must be where I read there were cerain times not to do the MLD. I would hate to cancel my evening appt.
You're a lifesaver- I appreciate it.
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Thanks for your input. my swelling is confined to behind the thumb and continuing to the wrist so I don't think I will need a full sleeve, just something from fingers to the elbow with the thumb stub. I was looking at the JoViPak online and it comes in several lengths from gauntlet, to mid-forearm, to elbow. I am going to ask the therapist when I go back next week to see if she thinks a night garment will help my minimal swelling in the hand.
Sheila
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well, with ivtwoqlt's post and the talk of sleeves etc .. .I guess I will post this here :
I recently spoke to 2 of the ppl. on this forum regarding my sleeve/glove status. I question wheteher or not I need to wera a sleeve and glove ( buit for exercise ) because I was told to do so by an inept PT,. I saw my LEist tonight and she measured and did a complete exam. She said my "good arm' is bigger than the left/ affected arm. She is aware it is the dominant arm, but I have no LE signs at all in my left arm. (Breast and hand areas .)My affected hand is 3% different.
She said she would suggest I always wear both for exercise, but perhaps to start backing off the sleeve a bit <take it off after work to start>and she will follow me with measurements. I trust her, but I dunno'. I go @ 2weeks for MLD .
In any case, I need the glove , which is the part that actually bugs me- though I love the Farrow.
What do you ladies think ? I have been wearing for app 4 mos now, but as I said - it is quite possible that I never needed to wear a sleeve ( except for exercise )
Is there anyone who just has hand LE and wears a glove ( and sleeve only for exercise )?
Thanks for any input.I think I may post on the glove sleeve forum as well.
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Purple, I have been wearing a gauntlet only since 2009 because my LE only presents in the hand/wrist area. Like you my LE is in my non-dominate (smaller) arm. I didn't find out if the therapist was able to access my measurements from 2009 (the records were scanned into the computer network) to compare to this year's measurements to see if the swelling has progressed up the arm but the measurements Tuesday between arms were almost identical. When I complete treatment, I am going to ask for a copy of my measurement page for my records. My question regarding sleeves was more for night garments so I don't have to wrap.
Sheila
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lvwoqlt
I understand your situation was different...it did remind me of mine though. Oh yes, I would defintely ask for measurements and keep my own records. A gauntlet wont work for me- it's in my fingers.
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Sheila, I have both Jovi and Solaris (custom), and a Circaid Juxtafit, which has Velcro straps so is adjustable. The Solaris people are easier to deal with, which matters when it comes to getting a correct fit. But Jovi's hand section is generally a lot better than Solaris (though we're still working on getting them to improve it!) My latest Solaris has much better hands than in the past, but my fitter was on the phone with them long and often to make sure it happened that way.
Geesh, that wasn't much help, was it?! I guess I'm saying, since it's your hand that's the issue, I'd go with Jovi. (Either of them, by the way, will make them any length you specify).
Let us know what you discover!
Hugs,
Binney0 -
Today there are some Spanx products being offered at deep discount at www.zulily.com. I think they are discontinued styles, but not positive about that. I've bought from zulily in the past and have been satisfied with their service, but be aware that generally the merchandise is not returnable. If you are happy with a Spanx cami or other compression product and happen to find it here and you are sure of size, it is worth checking out.
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