GRRRRRRRRR I HATE LE..........
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I love you guys--please know how much it means to me, and how scared I was.
So far, so good. My surgeon and anesthesia respected my LE arm, and because I was highly specific about only wanting IV sedation, I was out of there quickly.
But, the kind anesthesia doctor made a point of telling me he only gave me 250cc to limit my risk of edema! So, I was dehydrated, and have been drinking fluids since I got sprung.
It was a D&C, hysteroscopy for polyps--can't just ignore them on tamoxifen I guess, but I was terrified. Just don't like surgery. I wore my g-sleeve--a piece of pink stockinette that says LE--no IV/bpr/blood draw--and my gyn was going "wrap your hand" and of course I had gauze to do that with me, so I did a hand wrap, as that's where I tend to swell, and it's a strong visual reminder to leave that arm alone!
By the time I got out, I'd had nothing to eat or drink for over 12 hours, and he limited my fluids to what you'd get from a juice glass! And he was trying to help.
You guys are the best--thank you and huge hugs as I pester my dh for more tea.
My dh was told to go home and they'd call him: as soon as he walked into the door, the gyn was on the phone saying "She's awake, lucid (debatable) and wants to go home! Come quickly!"
Kira
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Glad everything went well. Hope you feel better quick!
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glad your home, Kira. keep on deinking.. geesh, it amazes me how they don't get it, EVEN when they do get it! but, they probably were afraid of nausea after surgery..
i have le the worst in my right hand,also. what a pain it was to get proper gloves!!when i wear the sleeves, my hand tends to swell, even WITH gloves. to make it worse, i have neuropathy in the same hand.. andim right handed!!
Hope you do well, sweetie. will be thinking of you as you recover. another hurdle faced, and done!
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Cheers! I salute you with my glass of water! Glad to hear your surgery went well, Kira. Hope you are feeling okay and there is minimal soreness. You can cross that off your 2011 list!!
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Congrats on having it behind you. Make sure your husband brings brownies with the tea. They have special healing properties -- especially the homemade ones
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I propose a toast to Kira for a speedy recovery!
And here's a little something to help you feel better..
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Hope you are feeling more lucid (haha). Wish I could send you a piece of the cake I just had with my lunch. Drink lots now.
Alyson
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Thanks again, slightly more lucid (that's a judgement call for sure)--I pm'ed Binney about the intentional dehydration to protect my LE arm, and she was stunned, always something new--and the sad thing is how helpful he was trying to be...
I read that dark chocolate is good for you in the Anti-Cancer book, so it's risen to the top of my health food list!
Still thirsty...But at least now I have access to fluids.
So glad to get that behind me. They said "no shower for 24 hours", and like a good patient, I shortened that to 24 minutes--it's flu central and MRSA central there, like I wouldn't wash it off???
Lucid, not so sure.
Hugs and love to all, I appreciate it SOOO much.
Kira
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this chocolate has strawberries, so its healthy, right?! enjoy!!3jays 0 -
Of course its healthy - its fruit
I never thought I would be happy to say, well, its lymphoedema but I am. Swelling in chest is probably fibrosis from lymphoedema. There is no evidence of recurrance or mets, thank goodness as BS was worried.
So tomorrow I will see my LE PT to see what we can do.
Gentle hugs to all.
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Alyson, thank goodness it's "just" LE!
There are all sorts of ways to break up fibrosis: special inserts from solaris or jovipak, therapist massage, even cherry pit packs.
Let us know how you do--and it rots that it's LE, but it's treatable.
Kira
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okay.. I went on the websites offered here for PT and most are very far from me. I connected with a therapist about 5 minutes from my house. She is on the NOrton list but said she actually trained with leduke???,,, I am a newbie with LE...Most places I contact will not take my insurance or are out of network..I cannot afford that.
The one person who will take me will accept my insurance. She told me she has been working with LE patients for 10 years. Depending on my evaluation she will do massage, wrap my arm and make me wear wrap for about 2 weeks. She also wants to see me 3x a week for at least 2 weeks. That was just the beginning as my head started to swirl and I lost concentration.
SO looking to see if that sounds like the norm or should I keep on looking.. My God 3x a week. I work full time and used all my vacation for wonderful things like bilaterals chemo and recon. oh wow now I get to used 2011 vaca for therapy.......
So much to absorb....Should I give this lady a try?
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njbhwgirl---Leduc is used by a lymphedema training school that split from the other schools and its medical director is Stanley Rockson--who is a prominent MD from Stanford--we've had discussions about why he supports this school, as the training is shorter that other schools.
Here's a good article for PT's that covers the differences--Leduc training is shorter, only takes PT/OT/MD's and sometimes use pumps
http://physical-therapy.advanceweb.com/Article/The-Vodder-and-Leduc-Treatments-for-Lymphedema.aspx
I recently got an email from a director of a prominent school, who said--"I can train them, and then I just hope for the best."
If she's been doing this for 10 years, that's a good sign. It sounds like she wants you to do the "intensive"--which is constant wrapping for a few weeks to bring down the swelling, and then lessen the frequency--this is the classic approach, but may vary after she sees you.
The latest NLN guidelines on treatment--which is supposedly written for patients, but can be kind of incomprehensible--it's really written for providers, IMO, does cover this.
http://www.lymphnet.org/pdfDocs/nlntreatment.pdf
I say, if she's convenient, your insurance covers her, and she seems like a good fit after you meet her, it's worth a try. Maybe she can treat you after work, or before, or at your lunch hour.
Remember, if you and she agree on the intensive, you'll be wrapped for a couple of weeks. If you decide to work during that time, there are some coping skills for getting through the day wrapped.
It's not surprising that your head is spinning, but break it down into small steps and early treatment and successful treatment of LE will put you in a much better place to keep it from progressing.
Please let it sink in, and if I can answer more questions, let me know.
If she's on the Norton list, she got some Norton training, but there are short Norton courses.
You can do this. It isn't easy, but it's worth it.
Kira
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grrrrrrrrrrrrrrrrrrrrrrr woke up with lost of swelling today. Even my 8 year old can see it in my hand. I am also swollen all over because I couldn't get my ring on. Wondering what I ate that may have been too salty. ugggg. Lots of water today..no sodas even in the house.
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last night i got a new lesson in le. ate a wonderful steak, which the waiter told me they marinated. i didnt even think, ate it all. that was in miami. two hrs later, im hanging out of the car "woofing" and, today, im swollen everwhere!! never even THOUGHT about msg. im so used to not having an.. even carry my own lettuce, when eating out. foumnd out they pack lettuce w/ msg from north here. wow! i will be more careful in the future. for now, am wrapping truncal, and as soon as i get off, have to wrap my hands, and prob. arms, also. what fun!! errrrggggggrrrr
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Alyson, glad to hear it's "just" lymphedema. Those kinds of scares are not fun.
Kittydog, don't you just hate it when you know it's something you ate but can't determine? Sometimes I really miss soda since I rarely let myself have it. It's a real treat when I do.
3jays, I feel for you. I never thought about lettuce being packed with msg - as a preservative? Ugh, marinade and msg/salt all in one meal.
I had sushi last night with "just a little" soy sauce with wasabi. I also had a spinach salad with balsami vinegar. I know both of these are my triggers, but I guess I just needed to remind myself how crappy such small amounts of these things can make me feel! Oh, and I've had small pieces of chocolate the last three days. I should have known not to cheat since I've been swelling a little lately. Where's that self-discipline when you need it? At least I've been doing MLD twice a day and drinking lots of water. Salt and fermented beverages/condiments are evil! It's not fair.
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Grrrrrrrr
I went today to the new place to get my arm measured. I am happy to say that I will be getting a custom sleeve.
She was shocked that he was ordering a sleeve so small because he had measured her years ago. She agreed that the size six is just to big and did not understand why he was ordering a long length. I guess the good news in me wasting $57 over a wrong size sleeve is that one I have shown no allergic reactions to the silicone and two I saved $32 by not ordering it through the man who was doing my measurements. I will also be getting a new gauntlet. Going with the Healistic one this time. She too thinks the dream and other one are just too short. lol She sent hers back. I am glad I went on and did this on my own. I just hope insurance will pick up some off the cost. Oh and she showed me a better way to put my sleeve on and thinks I should invest in some gloves and some other liquid stuff that makes the skin smooth and silk . I have to confess...that stuff felt great and made the arm so slick. I will be getting that when my sleeve comes in.
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Hi All, I dont check in much because life has just been too busy. But I re read the first post that Estepp wrote. How funny that those were almost my exact words today. Give me chemo all over again but let the lympedema disappear. I dont have it that bad but have been informed this week that I have to wear the sleeves EVERY day. Now, I dont even begin radiation until March 8th. Sorry just cranky today. Thanks in advance for allowing me o vent. Onward
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Aw, Onward, news like that really flattens our spirits -- I'm so sorry!
And it makes the future look so grim too. Darn good thing your screen name is "Onward!" because that's sort of been my mantra with this stupid LE. Take the time you need to grieve this new development, but then -- hey! Onward!
Binney0 -
So I just went ot PT for first time Friday. She measured me for sleeve and gauntlet. She also wants me to show me how to wrap. i am going back next Tuesday. I asked her in the meantime if there are any excercises I can be doing or just....somehthing to help it. She gave me no other information. All she said was see you next Tuesday and we will talk.
SInce I am a newbie I have been scouting the posts here. Looks like I need to stay away from salt and sodas, and try to elevate as much as possible. I started to swell again this morning for no apparent reason. I am really super depressed. I even had a dream the other night that my arm was the size of a watermelon.. Any suggestions at all would be appreciated...PT said I had a mild case but my question is does it get progressivey worse over time or is it a case by case basis?
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Njbhwgirl,
Sorry about the dream--classic anxiety stuff, but LE makes us anxious.
As far as progression--it is individual, but treatment is essential to getting control and stopping progression.
Why do some LE therapists kind of dole out the information? Not appropriate or helpful, IMO. Their job is to give us ALL the tools and help us figure out the plan.
Here's a couple of links to help you figure some stuff out:
Joe Zuther--head of a training school, has a great blog, and it contains exercises and nutrition for LE: I'm going to link to the exercise page, ok?
http://www.lymphedemablog.com/2011/01/06/decongestive-and-breathing-exercises-for-lymphedema/
You can read the other articles, and they're really geared toward patients.
Also, JoAnne Rovig who makes Jovipak garments has streaming on-line vidoes that cover lymphedema and massage, and you can watch the segments that interest you:
http://www.nwlymphedemacenter.org/
And, to plug our website, stepupspeakout, here's the link to treatment, but also to emotional coping:
http://www.stepup-speakout.org/treatments_for_lymphedema.htm
http://www.stepup-speakout.org/patoconnorcopng.htm
As you can tell from the amazing response to this thread, LE is hard to have and it can be a rollercoaster of emotions and sometimes it can flare and really throw us for a loop.
You're early in dealing with it--when it's the hardest--but also, be aware of your PT's response to you--she measured you for a sleeve/glove and your arm is swollen, most PT's will reduce the arm with wrapping first. Everyone is different, but feel free to challenge her on her approach to treatment and what is the plan. The NLN re-wrote the treatment page, and it's very technical, but feel free to go over it with her.
http://www.lymphnet.org/pdfDocs/nlntreatment.pdf
This is the time of many questions, and please feel free to ask them. Hang in there, and as you get control and knowledge, the sadness will ease--but this is a grieving process.
Hugs and please let us know how we can help.
Kira
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Kitty - BrightLife Direct makes a sleeve called "Allegro" - it's sort of simialr to the Dream sleeve (soft, light fabric) except it only comes in beige and it does not have the silicon dots on the top band. I found it stayed up really well and it runs long -- at least, it was long enough for me which most sleeves are not (Dream in long was ok but longer would have been better.) It's only $20 and has a 30 day return policy (!!) -- might be worth checking out. Class 2 only.
njbhw - Seems like everything w LE is case by case . . . everyone's is different (and even then, different at different times.) Great that you have a dx early and are seeking care. Usually you would get measured for garments after tx (MLD and bandaging) but if yours is very mild, maybe you don't need that. You might ask your therapist about it when you meet next time. It took me a looong time to grieve and regain my confidence -- I will never be without sadness and anxiety about LE, but it's not always in the foreground.
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I am sooooooooooooooooooooooo soooooooooooooooooooooooooooooooooo sorry to see the LE pain here! It sickens me really ! my arm is down... but daily the stinging little pains are there... all the time. It is...... what it is...... for ALL OF US. I feel like I will NEVER stop complaining... and EVERYONE is tired of it... including me ! GRRRRRRRRRRRRRRRRRRRRRRRRRRRRR
I just want to give each of you a great big fat GRRRRRRRRRRRRRRRRR (((((HUG)))))))!
Kira......... I felt good reading you are doing ok ! I love that actually !
I think I need to hydrate more... I am learning!
Peace and Bubble Gum Sisters.......and dark chocolate............
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Sending big gentle hugs Estepp ((((((HUGS)))))))))
Has a lovely weekend away. LE was OK with shoulder and side taped. Arm a bit sore today. See the LE PT again on Thursday - she is sure she can improve things for me which is great.
DH has just arrived home and we are having friends around to dinner so will write more later.
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hey gals, i've been "lurking" reading, and internet surfing for 2-3 days now. my LE is killing me, since the MSG debaucle.. not something ill do again, soon. have decided to get "swell spots" added to my list..
gonna see le therapist next wk. gonna remeasure, and get everyday sleeves for now. i need to learn to wrap/massage the areas where the "dog ears" were removed. the "fat" on the inside of my arms (the jiggly part) rubs that area, and wow! do i swell!! i'll letcha know what new torturous thing we come up with next!
the good news is, the weather is changeing here in so. fla. and i've made the (heated) pool 3xs this week. that's the charm for me, usually, but its' too soon yet, to tell. Im so grateful ya'll post your "favorites" so i have more ammo when i go. thanks. off to bed.. 3jays
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thanks all for the encouraging words... Do you recommend that I buy my own sleeve and gauntlet?From some of your posts it seems like some are much better than others. Right now I am looking for a provide through my insurance company. UGH>.. everyone I call is either out of business or they do not sell to consumers.. It looks like it is not and expensive item. My PT says you need to change it every few months or so because they stretch out.
She said she will wrap me this tuesday. Personally I think her next patient was waiting a long time and that is why she sent me out the door
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NGBHWGIRL
The way my therapist handles it, they wrap you for two weeks and then measure you for your sleeve. They want to make sure they get the swelling down as much as possible before ordering one. My insurance will pay for a new sleeve and glove every six months to the date. Gee glad I was told that I would hate to have to pay for one because I ordered it one day to early. LOVE INSURANCE RULES Good Luck tomorrow.
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NGBHWGIRL,
I totally agree with Kittydog: don't take on the sleeve/glove ordering until you know your arm is at its smallest size, and the PT should have a relationship with a fitter and can help you order what you need. You will need a physician's prescription to have insurance cover it. My fitter gets one from my primary care doctor when she needs it.
I hope the PT gives you the time you need this time.
Estepp--thanks for the healing thoughts and wishes, I am struck by how I really can't tolerate much anymore--being a patient, having a "blown" IV, having anesthesia withhold fluids, the post-op symptoms upset me--I think I'm sick of the patient thing. And I do think LE wears us down.
I'm back at work, and not fully up to speed, but getting there.
3jaysmom: My MSG fiasco: the story of my older daughter's Chinese Wedding Banquet, and how I asked my SIL's mother if they could have some food without MSG and she got hysterical. My amazing SIL told her never to talk/email me again if she couldn't behave. I had just developed hand LE, the therapist wrapped me without finger wraps, and my hand looked like Minney Mouse, and my SIL is calling me and saying "don't open your email..." Well, I actually didn't attend the Chinese Banquet in the end, I just didn't feel well, and my daughter, who has celiac disease, brought her own food. Everyone in my house gets whopper migraines with MSG and no one at the banquet facility spoke English. The good news is that I got an wonderful SIL out of the deal.
A warm pool sounds great.
Kira
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Hi, does anyone here have lymphedma in both arms? I do and I HATE IT!!! when I was first dx'd in 2001 I was told by my breast surgeon that because I had a breast reduction, the sentinel node procedure would not work for me and I wound up having 17 lymph nodes removed all negative. This same surgeon had recommended I have breast reduction surgery 3 years earlier and never advised me that should I ever get bc all lymph nodes would have to be removed. Additionally, the plastic surgeon did'nt advise me about bc & lymph nodes either.
About one year later I had some dental work done and my right arm swelled up. I went to a LE therapist, who is well known, and she had a doctor perscibe me the anti biotic Keflex, 500mg 5X a day for an indeterminate amount of time. I went for therapy 3 times/week until the therapist informed me that my insurance was not covering it . She presented me with a bill for 3X what insurance would pay. Soon after I saw my onc who was appalled that I was taking Keflex for over 8 weeks.. I stopped the Keflex and learned to live with a fat arm.
In 2003 2 lymph nodes lit up on a mammogram. This was not new news to me as they had been lighting up for several years from an infection I had in my twenties. I tried to explain that those 2 nodes had been like that for years but they scared me with stories of what could happen if I didn't have them removed. I had a "highly recommended" breast surgeon remove them. I advised her before surgery that it was impossible to intubate me without a broncoscope as I had almost died on 2 occasions. She told me that I would be well taken care of & she would make sure the broncoscope was in the operating room. On the day of surgery I was sedated before going to the OR. I told the anesthesiologist about my past experiences with anesthesia and he assured me I was in good hands.
Well guess what? They couldn't intubate me, not even with an LMA and they had used "long acting" drugs so they couldn't wake me up. So I was "bagged" which is where a mask is placed over your nose & mouth with a bag attached which is hand squeezed to push air into your lungs! Also, there was no broncoscope available.
The surgery took almost 4 hours and when the biopsy came back it was not cancer. I was assured that because only 2 nodes were removed I would never get lymphedema. Almost 2 years later I picked up something heavy with my left arm and by the next day that arm was blown up like a balloon. Despite therapy, wrapping and buying my own pump the arm will not go down. So I have given up and resigned myself to wearing long sleeves for the rest of my life because I can't stand looking at them. It is difficult to find clothing that fits as I am a size 8 and my left arm is probably size 18 - 20! I have resorted to making a lot of my clothes just to get a decent fit - good thing I know how to make clothing!
Sorry to make this so long but I felt compelled to share my story.
Barbara
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