GRRRRRRRRR I HATE LE..........
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KS, my arm has done that before with the onset of cellulitis. It started swelling a day or two before the redness showed up. I hope that''s not what's going on... I'm so sorry you're having issues!!!
And kira is so right - you need to rule out the dvt. If that's not it, I would talk to your doc. about starting antibiotics. I can't speak for anyone else but the only time I've had flares of that magnitude was with the onset of cellulitis.
Hang in there! LE sucks so bad.
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If something like that comes up when you are traveling can you go to the emergency room for help?
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I'll let me doctor know that I will call from my vacation in June if I have a problem with my arm. We do go snorkeling a lot and I don't want to poke myself. As I write this I am thinking I should probably get some kind of snorkeling glove for that hand! Just be it for me to grab a sea urchin getting out of the water....Thanks.
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Hi all, Doppler studies of the arm are very hard to do on me because all of the trauma my axilla has been through (multiple surgeries, radiation, infection, I&D's) means that the axillary vein doesn't compress well and my baseline is diminished venous flow. I've had two dopplers of my arm. The first one was done at a local hospital. The tech said she just couldn't say one way or another. Then I went to Memorial Sloan Kettering - the first two docs weren't sure if it was a DVT, and I had to stay overnight until the guru doc was available to rule out a DVT. Even the guru said it was a hard call and said that, given my risk factors, if I had symptoms, she would probably recommend anticoagulation. I hope my hematologist calls back soon, so I will know whether to up my lovenox. KS1
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KS1--I know we're pushy, but we're worried, especially with your difficulties with the test and history of clotting, and now you need to fly.
As Binney has said: we take care of our own here.
Kira
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You guys are so sweet. My hematologist says it doesn't sound like a DVT and, even if it is, I am already on the dose of lovenox he would want, so it's not worth the doppler. So unless it gets worse, it's just elevation, hydration and lovenox. Oh, right, he said, just to be safe,not to do MLD for one day.
He even gave me permission to fly this weekend. I gotta say, I am not happy with the prospect if my hand doesn't get smaller. But, I've got a couple of days to shrink back.... KS1
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An update on my hand and what I've been doing. A LE therapist gave me kinesiotape a while back, but didn't teach me how to put it on. LindaLou's instructions are so detailed that I toyed with taping my hand (got as far as cutting the strips), but chickened out before actually applying it.
I wore my tribute Tues night, but my hand really didn't look better Wed AM. When I saw my garment fitter on Tuesday, she echoed what people have said on this board -- the standard fingertip to axilla Tribute just doesn't do that great a job on problem hands. (According to my fitter, there is a new extended Tribute glove that has vertical channels and a much better hand, but they won't make it to the axilla because it directs lymph fluid to the axilla.) That's what hand wrapping is for, but alas I still haven't been taught to wrap.
Wednesday AM, I suddenly had a burst of inspiration -- what I need is localized compression between the fingers, at the MCP joint and on the dorsum directing the fluid north. A LE therapist once had me put Komprex under my sleeve for a stubborn area of fibrosis. Komprex only comes in huge sheets, so I had tons of extra.
Inspired by LindaLou's drawings, I cut a piece of Komprex about 6 or 7 inches long and 4 "channels" wide. For about 1/3 of the length of the Komprex, I cut lengthwise along the channels (creating 4 tubes of foam). I placed the tubes between the fingers and wrapped them around to the palmar surface. The uncut part of the Komprex I rested against the dorsum of my hand and ran it 2 or 3 inches beyond my wrist. I then put on an old custom Elvarex that goes pretty far up my forearm. I then put on my Tribute. When I checked a few hours later, my hand looked much better. I took off the Tribute and just wore the Elvarex with the Komprex (and a day sleeve) for the rest of the day. By the time I went to bed, my hand looked pretty darn good. I wore just the Tribute with the Komprex to bed last night. This morning, the big puffy spot was gone and the ulnar tendons could almost be seen. Maybe it isn't crazy for me to fly tomorrow ...
I can almost HEAR Binney's eyes rolling about LE self management without professional supervision. So don't do this at home folks, but maybe it is something to raise with your LE therapist. - KS
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No matter KS1--I have been worried about you and am so happy to hear about a turn around. Keep woking on it. I won't try it at home yet as I am not even sure what you were talking about!
Happy flight.Becky
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Yikes! I had NO CLUE my eyes were that loud!
When you were talking about the do-it-yourself kinesio tape they were rolling so fast I could hardly see the page!
Whew! Really glad you went for the Komprex instead -- and what an inventive solution that is! Thanks for sharing it. Might have to try that under my Solaris next time my hand flares. (The price of a sheet of Komprex is scary, especially when all you might want is a small piece, but you never know when it'll come in handy.
)Do keep us posted, KS -- we all care how you're doing!
Hugs,
Binney0 -
Yes, I was shocked at the price of the Komprex (~$60/sheet). I have about a half sheet left that I would be happy to share. It's so light that I could cut some off and stick it into a business size envelope to anyone who wants some. PM me with your address if ou'd like some. KS1
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I just wanted to thank you all for being here. LE is scary to me because it seems to be unpredictable. Knowing if I have a problem I can come here for advice is so reassuring, so thanks!
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KS--did you attach to the komprex strips to your fingers, or the web spaces between the MCP joints? I'm kind of imagining it on your fingers with the larger piece on your dorsum of your hand.
My LE therapist always says Komprex is aggressive--but one fitter told me it's great for hands. I do have a piece I was given (worth it's weight in gold)
Have a wonderful trip.
Kira
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I didn't tape it down. There is a single piece of Komprex, 1/3 of which is cut into tubes and 2/3 of which is uncut. The tubes went between the fingers around to the palm, and the uncut portion went up the dorsum of my hand to the wrist. i had conceived as the tubes basically as a way to anchor the Komprex so I could get the glove, and also to protect the webbing of my fingers from the evil roughness of the elvarex glove. But, I think they actually helped move the fluid from the palm (which I hadn't noticed was puffy until it got smaller). If someone tells me how to attach a photo, my new phone takes decent pics. KS
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KS, that makes sense about the palm, because the lymph drainage route for part of it is between the fingers and over to the back of the hand. So if the Komprex is directing fluid that way it could really help. I don't have dorsal swelling, but my palms swell, so that sounds like something worth trying.
Curious if the edges of the cut Komprex are irritating to the sides of your fingers?
Verrrrrrrry eeeenteresting!
Keep us posted,
Binney0 -
KS, The way I post a photo is to upload it to photobucket, and then get the URL and paste it into the icon that's next to the smiley face. You have to establish a photobucket account, but it's free. For some weird reason, all my photos post twice. I think it was Fumi who told me how to do it. Anyone who does it better--please chime in.
Kira
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Can I just say how much I hate LE? It's really getting me down much more than losing my breasts ever did. It was under control very nicely for two years with virtually no effect on my daily life and now (since early December) it is always on my mind. I have tops I can't wear because they won't fit over my sleeve. I feel self-conscious and am worried about summer and tank tops and gardening. Does BC have to take away the one thing I love the most? Now I'm going to look like a freak when I'm out gardening.
I seem to cry all the time now and feel like I'm falling apart. I just hope that I can get it under better control and not feel so much like a patient again. Thanks for letting me vent. I needed that!
On a brighter note I went for MLD yesterday then out for lunch with a very good friend. She was diagnosed a year and a half ago with stage III colon cancer. While I'm not happy she got cancer, I AM happy I have someone like her to talk to. She gets that you're not the same person after cancer and just because treatments are over it doesn't mean that things are back to normal. It's so refreshing to be able to talk openly to someone about it all.
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Barbara, it really does stink. And the problem is, the longer we have it, I find, the less tolerance I have for it...
Don't let it take away something you love. I know I feel like a spotlight is on me when I wear compression garments, but do I take a second look at a person with a carpal tunnel splint? Nah, it just feels like a stigma. You won't look like a freak--more like a world class athlete.
It will get better again.
Good friends who understand are priceless.
And never forget, LE rots. It just does. Especially when it's front and center, or causing limitations.
Kira
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I am going to complain too ladies. Thanks in advance. Was at the ONC. this week and said how frustrating it is to not get the care that we as LE patients need. The ins. co. will pay $347.00 for someone at the clinic to watch me self massage but will not pay $75.00 for a state registered LE therapist to GIVE a MLD because "massage" is not covered. The Onc said you know that you will have this for a lifetime. I said YES and that is exactly why we need treatment to teach our lymph a new way to flow! She said I can send you again but do not know if they will do MLD. I said that I would just like to get this cinder block off of my shoulder and turn it into a brick. I said that is a hard spot for me to work on and she said "maybe I can get my husband to do it for me"!!!!! I was so frustrated and told her so...it brought me to tears.
I have been feeling so emplowered since I met this woman and have been having good results with the MLD. Then I walk into this ONC office, look at her empty eyes as if to say "it is not my thing, I got rid of the cancer" and then be reduced to tears.
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((((BarbaraJo)))) I am so fed up with uncaring doctors! So sorry...
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BarbaraJo50 - No advice just sympathy ... I hate the lack of knowledge, the lack of compassion, just the general medical community "I don't get it" ... the look in the eyes ... I so get it! Such bull sH*% ... it really is.
Some of the ladies here have started a fabulous website ... stepupspeakout where there is information you can give to docs (it's the link below)... but I just want you to know that I am so sorry. I /we know what it is like. I had a melt down last summer in my PCP's office simply because they just don't understand. Love to you and peace. So sorry!
http://www.stepup-speakout.org/essential%20informat%20for%20healthcare%20providers.htm
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Thank you ladies. Just knowing you all understand is so helpful for me. I have been to the stepup-speakout site. I did share it with my surgeon but not with the onc. I guess she needed it more.
I am not going to let this go though. All involved will be getting letters from me...from the head of the BC center to the state reps and senators. This is just too important. And so many have it much worse than me.
I am going in on Monday for a prophilactic MX. One big boob and no boob has been too hard for me. All healing thoughts are welcome. Thanks. BarbaraJo
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((((Hugs))))) BarbaraJo - I hope your surgery on Monday is easy for you.0
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BMac, it's so nice to see your lovely avatar here again, but I just hate it that you're here because of a stupid rotten flare.
Kira and I -- after several flares that left us inconsolable -- decided to do some research on how flares might affect our emotional state and discovered some hints that an out-of-control stupid lymph system can indeed leave us emotionally defenseless. Not much help, I know, but it's a comfort anyway to realize that we all share the debilitating sadness with flares, and that we can look better to a lift in the depression as our control improves. Hope you'll soon have everything back in control and be out there gardening again with joy.BarbaraJo, I'll be thinking of you all this week, and especially on Monday. Smooth sailing! Quick recovery! Nothing but kind-and-caring doctors and nurses! We'll all be waiting for your news.
Gentle hugs,
Binney0 -
BarbaraJo50 - Good for you for fighting it out. My story is long and I won't bore you with it here ... I've spent hours on the phone talking with my insurance to cover the LE therapy but they won't cover it. They don't see the need ... they think "I'm cured" ... my BC nightmare is over ... NOT! Their final answer was 'No." Eventually I was told that until letters are written to government leaders to change policies ... nothing will be done. I sobbed through the entire conversation. I'm to worn out at this point to do it ... too overwhelmed ... I'm so thankful that you have the strength and tenacity to do it. Thank you for your example of strength and not giving up ... I need some of that!
Prayers for your surgery! xo
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Dawne-Hope, I will pick up the fight! Most of it will have to wait until after this surgery though.
Dawne-Hope, Binney, Omaz, Michelle, BMac, Jo-5, Kira, KS1, BeckySharp, all who stop at this page; I will be writing for you too.
Binney, it is like you are reading my mind! One of my affirmations is that all hands that touch me are healing hands.
Thank you all for the healing thoughts for this surgery. I am not worried, almost serene and happy to have this MX. Never thought I would say that. I loved my breasts since I was 11!!!
Peace and Love
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BarbaraJo, best of luck with your surgery. I hope you heal well, quickly, and uneventfully.
I've noticed new Signs of Spring on the LE forum - the new threads are about biking and LE, swimming and LE, golf and LE.....
We all want to come out into the sunshine!
Leah
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Barbarajo best wishes with your upcoming surgery. My thoughts are with you.
I've been reading the stepup-speakout site. It's really great to have so much information. My ONC hasn't a clue and the PCP is trying but I like most of you I'm having a hard time getting insurance coverage and possible treatment.
My flairs come and go... so frustrating! Right now the underside of my arm down to the elbow is hurting. I'm trying to figure what causes the flairs and thinking stress is one of the culprits. This really does effect the emotions! Pain killers don't work so I don't take them anymore. It's exhausting sometimes.
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samsue - my arm is bothering me in a similar place, I appear to now have a bump thing at the top of my elbow. Kindof like a little nodule or something. I think it must be from the sleeve pressure. I don't have the same on the other side. Oh well, maybe it will go away.0
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Omaz it's just frustrating isn't it... Sometimes nothing I do will get rid of the pain. Sorry to hear you have something similar. (also a relief that someone else does... sad isn't it)
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Barbara Jo best of luck with your surgery. I'm BRCA1 and so had both breasts off and I like having a "matched" pair (of nothing or prostheses).
Dawne-Hope I'm so sorry you're having such a difficult time. When we're in a vulnerable place we shouldn't have to fight for what we're entitled to.
Kira & Binney you ladies are stars. I think it's been bothering me a long time and then last week I went for new prostheses and bras and just knowng I couldn't have reconstruction because of the LE brought me down. On a good note, my hand is ever so slightly less puffy today! Yay!!! Yesterday I sat out in the sun with my sleeve and gove on like a good girl and got a bizarre line where the sleeve ended. Oh well.
The world class athlete comment made me laugh out loud Kira. The first time my 25 year old son saw my sleeve he said "That's what the basketball players wear" and I responded that I must be a basketball player.
Thank you to everyone and good luck to all of you wonderful ladies.
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