GRRRRRRRRR I HATE LE..........
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On a related topic, I have become the MA. liaision for the Lymphedema Treatment Act.
I am really hoping that all of us with LE in ALL states, (and all with BC for that matter) will have a look at this :
www.LymphedemaTreatmentAct.orgIf you happen to live in MA. please feel free to PM me to join and 'stand up and be counted'.
Additionally, there is an interesting thread you can locate under the SEARCH tab here ( Lymphedema fourm) if you plug in Lymphedema Treatment Act AARP. It does contain links to the AARP, who are very big proponents for medical care for seniors. I thought of them because so many SRs ( without LE) need compression garments, but Medicare does not cover them. I would urge all to please takle a moment , when possible, and hop on this bandwagon when you can.
The insurance you have today, may not be the ins. you have tomorrow !
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Glad you posted this, Purple--just dashed off an email to my new congressman!
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Thank you all for standing up and fighting!
Just got off the phone with a pastor friend who called me to ask me some questions ... there is a woman in his congregation who is hospitalized with (he didn't know what it was but when he told me what was wrong ... it is Cellulitis) ... raging infection, red in her LE arm who got it because she went to the hospital for a procedure and told them to NOT take BP in her arm but they did anyway ... and so now she's in there with her arm more swollen than ever with a raging infection ... GRRRRRRRRRRR!
Got off the phone and had a good cry it makes me SO ANGRY!
Same old story ... "we're stupid women who don't know what we're talking about" ... thank you all of you ... for all you've taught me ... for the resources provided ... for those of you with the gifts, talents, resources to stand up and fight! We all do what we can but I'm thankful for all of you ... who can do what I cannot.
Thank you.
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Roses....Thank YOU !
Since you live in MA. pls feel free to PM me and I can send you my email and you can officially come onto our ' roster '!Dawne,
What a SAD story - this just gets so frustrating! No wonder we have a 'GRRRRR!' thread all to ourselves. I too want to thank everyone here who has helped me so very much . I do hope this woman gets better soon. I am betting your info will help in some way. Sometimes it feels like all we have is each other - thank goodness for that much!
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Dawne, good job though. Thankfully a friend called you. And so maybe the word gets spread. I hope this lady responds well to tx. This is a hard lesson for all of us. Try not to let them trivialize the risk. It's so easy to give in (because we feel beaten down) and then for some reason be apologetic.
I feel angry too.
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and then for some reason be apologetic.
This is downright odd, and yet I have felt it ! I know just what you mean, Marple, and we MUST fight this in ourselves.
The last time I went to the DR they wanted to take my BP in my unaffected arm . I said NO because I had some odd symptoms , plus my cardio dr. questioned something about this being systemic. My highest BP ever is 90/60. Without my salt, I have NO doubt it is much lower. Why let them take it ...so they can say " Wow, thats low !" Nope. Not gonna' happen. I dont want it taken- period. Its been ( too) low all my life.
Then my GYN wanted to finger prick for bloodwork. I said no. I KNOW my iron is fine...has been ever since I hit meno at the age of 41...almost 15 yrs. He said I was being silly because it is my other hand.
Call me silly then!
I could care less.I'd bet a million dollars if I had known enough to say I was concerned I might get LE with 2 nodes out and no rads they would have called me silly then too.
The apology should come from those who make us feel silly!
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Well, I have to get a colonoscopy in a bit (yeah, lucky me). I told the guy on the phone "Hold on, I think you should know this, no BP, no IV in arms." He said, "Oh just tell them when you get here." I thought, I don't trust them, so I called and told them no BP, no IV, no needle sticks in right or left arm. "The nurse sounded alarmed and said, "What, you mean the FOOT??? Well, I'll pass it on and if there's an issue we'll call you."
Uh hello, there better not be an issue, figure it out!
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nibbana - I've tried to deal with LE in healthy ways but this is one area that makes me CRAZY! And I know I need to deal with it in a more healthy way ...
I've quit going to the doctor (which I know isn't wise) because of the hassle, the red tape, the money ... I've just quit. The last time I went to my gyne I had a nurse slam the door IN MY FACE when I told her that she couldn't take my blood pressure on my arm.
That did it for me. I haven't been back. I get too angry, too hot ... I've gotta deal with it in a more healthy way ... but it's too much of a hot bed issue for me.
With the issue you're facing ... you HAVE to deal with it. I'm sorry ... I've got no advice ... that scenario honestly scares me to death because I don't trust my local hospital nor my local doctors to not do something sneaky like what happened to cinnamonsmile on another thread.
Totally hear you ... "THERE BETTER NOT BE AN ISSUE. FIGURE IT OUT!!"
Amen.
Makes me crazy!
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Dawne,
I tell you what. If I find out my arms have been messed with in any way, I'm gonna have a little talk with the head of gasteroenterology. I'm not calling customer service numbers anymore, I'm going to department heads.
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This is my first post, I am on this sight all the time looking for information and answers to my so many questions.
I had surgery on my left breast in August of 2011, I didn't and do not have insurance. I had a lumpectomy and 19 lymph nodes removed. I am very lucky not to suffer from Lymphedema. I had to have a biopsy on my bad arm for skin cancer about a month ago, it came back positive so more had to be taken to get clear margins. I was so afraid that doing this procedure would effect my arm. Last test came back on friday with clear margins, good results but ugly scar and now I'm worried about if I may develop problems.0 -
Nibbana
I'm in the same boat! I dont trust them at all. When I told them at my cardio dr they could take the BP on my leg that all looked at each other preplexed. Nobody knew how. Trust them with an iV in my foot? Nope. I dont.
My BS said she would order a breast MRI for me because I will not have a mammo. So far., no appt. no such order. THIS I will call on! It will be 1 yr in May- I MUST make that appt.
As for the rest ... I've pretty much had enough for now.
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Patsycat
I am so sorry you came in on the tail end of a negative post. YIKES! I can assure you it's not always that way. Sometimes some of us need to vent, and this is great support system.
You have been through a lot, but time to celebrate the great news of clear margins. Hooray!!!!!!As for your concerns about LE, you sure have come to the right place. Hopefully, you will *never* develop this, but there are precautions you can take to try and reduce your risk. The best site which is chock full of info is what we call the SUSO website, It was developed by several women from this very thread who have LE and are fabulous advocates. You can look high and low, but IMHO, you will not find better advice.
Check out :http://www.stepup-speakout.org/
In the meantime, be sure to follow what I call the basics: Eat healthy, steer clear of BP or needle pokes of any kind on your affected side, avoid manicures and massages, the lifting of heavy items with that side, repetetive things like raking, heavy vaccuming, etc .. etc .... and if you feel any symptoms whatsoever , notify your DR right away and ask for a referral to a LE THERAPIST for proper evaluation.
In the meantime, I hope this is a weekend you can celebrate your good news and check out the SUSO site tomorrow.
Best Wishes !
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Jody - I have the Flexi-Touch pneumatic machine and I like it. As Carol said, it does not replace MLD but it is a nice boost for the hot summer months when my arm just gets unhappy. I use it when my arms continues to ache even after doing MLD and Leded stretches. I do MLD before and after the Flexi-Touch. I believe it does help. Maybe some of the 'therapy' is peace of mind but I really do feel a difference after an hour with pneumatic compression.
My surgeon sent me to PT two weeks after surgery before any LE symptoms even appeared. Before surgery, she told me of LE risk, after removing 15 nodes she sent me to PT.
Interestingly, my surgeon, my pcp, and my oncologist all watch my LE arm. I have not been to a PT since last May. I do my MLD, use my Flexi and, if needed, I found a massage therapist who is very helpful when I need her.
I do think about finding an LE office through Cleveland Clinic that offers some sort of measurement - like Perometry, but part of me says to leave well enough alone.
For me - it was a big learning curve but I learned a lot from ladies on this board as well as read everything I could get my hands on.
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Jody- Like Ohio4me, I have a Flexi-touch pump system as well for hand, arm and truncal LE It has been a wonderful addition to MLD and bi-monthly visits to my PT for measurements. Before, my first PT set me up with a 3-channel pump that just moved all of the fluid up into my axilla. When I asked if there was any other pump that would work with both truncal and hand/arm LE, he said 'I would know, and there is nothing on the market for both'. What a jerk. He just wanted me to come back 3 days a week for the rest of my life or until the money ran out.
I was still so new to all of this that I figured I better learn everything I could. So I stopped going to him and found Flexi-touch with my second google search. After switching to a better PT and having him evaluate the pump with the sales rep during 2 of my sessions, it made a huge different in my measurements. Again, only in conjunction with MLD and mild exercise.
Then I discovered this site and all of the wonderful strong caring women that share their knowledge and frustration and fears that we all experience, and I have never felt as informed and empowered to take the lead in my own care. I want you all to know what an inspiration you are to me daily and how many Grrrrr moments you have gotten me thru.
Thanks
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Ladies - I came to say my goodbyes. I love you all but can't stay.. Don't worry I'm ok.
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Gma, moving on can be a good thing. Even a break sometimes is necessary as we all know. I'm glad to read you 'got a break' with your night sleeve. Hugs to your secret Santa and to you.
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Gma
We will miss you.!
I hope you find help and peace ( like we all look for !) and pop in again soon.
I was once on a COPD forum for three yrs. After awhile , it was all doom and gloom, and I realized the very thing I went there for - to get and give support was not happening. I had to leave,. I found that it's It's not always easy to cut the ties. For me, it was the right thing to do and somewhat overdue I think .
I hope this is a healthy and good break for you.
(((HUGS)))
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GMA, what great news on the grrrr thread! So happy for you. I hope the night garment will help you out.
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I have read where several people mention wearing night garments. Can someone fill me in. I have very mild Lymphodema in my right arm pit and have been to therapy. They said they were going to order me a sleeve and they tried one on my but it was way too big. How do I know what I need to do. I go to the therapist and they do MLD but don't show me what to do or tell me much of anything. Can someone fill me in. I did get the LEDBED DVD and have done that twice and it was ok. But how often do I need to do the DVD? When would I wear a sleeve? Is there a special diet I should be following?
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GuyGirl~welcome. Lymphedema is a learning experience almost every step of the way. A very good place to start for information is~ http://www.stepup-speakout.org/
You need to find out about your therapist's credentials. (S)he should be trained specifically for dealing with lymphedema caused by breast cancer tx. The above website will give you a list of therapists and hopefully either yours is trained or you are able to find someone else in your area.
M.
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Guygirl,
You need to ask your PT-CLT to have a rep measure you for a custom night sleeve. Good luck and hope you get relief.0 -
Thanks Pinkheart and Marple. I am just so frustrated. They gave me a bunch of exercises on a sheet of paper but didn't tell me how often to do the exercises, when do do them etc. They do MLD on me but seem to assume I know what I need to do. If it wasn't for this board I don't know what I would do.
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I know the feeling! Guess you need to get your questions together and torture the PT person next time! I have found that to be helpful!
yeah, medical folks think we just get it~~
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I've found very few medical people that don't assume too much. Speak up! Ask how often, etc.,
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Guygirl,
I'm pretty sure there's a code for insurance to bill for LE patient education as part of the therapy encounters, so there's no excuse for not allocating some time for that. They may be using the code to bill for education but not actually providing it, which is heinous. The goal of LE therapy is to achieve swelling reduction during the intensive therapy phase, while teaching the patient self-care so that the reduction can be maintained. Handing out exercise charts without demonstrating them and verifying the patient can do them correctly is lazy and inexcusable. The same is true with MLD.
As for a night garment, I love mine! I have a Solaris Tribute and it makes my arm ache go away. I rarely swell anymore (and I know I'm very lucky), but my arm aches a lot, and the Tribute takes care of it. The key to using a night garment, however, is to make sure that your LE has stabilized before you get one, because they are very expensive and most of them cannot be adjusted for size changes. There are some (I think) that use velcro to allow adjustment and perhaps others can describe those.
For swelling in the armpit, I'm not sure what kind of night garment might help, but you might get a similar benefit from a Swell Spot inserted where you swell, using a shaper camisole or an UnderArmour compression shirt to hold it in place. There is a lot of information about swell spots on the stepup-speakout site marple linked to, so you can learn more there.
For sure, you should be getting better therapy that what's been tossed at you so far. You shouldn't have to be guessing and wondering about your treatment, and my goodness you deserve some proper garments to work on your LE!
Good luck -- be pushy if you need to--and let us know what happens.
Carol
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I had a total of 10 sessions with a LANA cert. specialist. He wrapped my arm a few times, I have the wraps. He never told me how to do MLD, never showed me how to wrap.
He measured my arm for day and night and gauntlet. After my HMO hoops, one set is on order from Luna, will check for size, then order the rest. With another complete set to be ordered in Oct, before I turn 65. No Medicare hassle for a while. I will have 2 day time, one night.
I asked him how much to wear, when, etc, he said to be diligent.
WTH does that mean????
Not a happy puppy here.0 -
spookiesmom, AARRRGH! If he has a strategy for you, clearly he's keeping it to himself! Did the wrapping reduce your swelling to where it stabilized? That could explain why he didn't find it necessary to teach you to wrap, but even so, since you had swelling that merited wrapping to bring it down, then you really should know how to wrap in case you ever need to do so if your swelling flares and does not go down with your garments. Good planning on staying ahead of the Medicare issues, but it's unbelievable that your therapist is putting you in garments but not teaching you MLD and wrapping so you might have LE management skills.
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We need a website where people can post LE therapist reviews, for goodness sakes! In truth I don't think that would be realistic, but it sure seems that there is an awful lot of half-a**ed therapy being given, and no way to alert the next patient in need to avoid those therapists. And since when we're new to LE, we are clueless on what to expect, it's all too easy for poor therapy to be passed off as standard therapy. Ick.
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I'm sorry but these stories sound eerily familiar. My first instinct is that you need a new therapist ( NOT always easy)
Your therapist should be performing MLD on you and instructing you on how to do MLD at home...EVERY time you go they should ' tweak your instructions' if you have intelligible questions that can be answered. Anything less and you are being cheated. ( I found out the hard way) My wonderful LEist says: " Good MLD will give good results... Excellent MLD will give excellent results." I have seen the truth in her statement with my own 2 eyes.As for the Tribute, it actually can be adjusted for sizing ( free ) but you MUST return it within 2 weeks. I thought this to be a one time deal, but the solaris rep. informed me that they would take it back numerous times as long as you returned it after each alteration within the next 2 weeks.<I'm sure there is a limit!> Sounds like they will work with ppl., but at the prices ( over $700) you will want to have confidence in your fitter or LEist to measure you expertly.
Good Luck!
Call Solaris at 1 855 892 4140
Visit www.solarismed.com
*EDITED TO ADD: The prices of these garments is but one of the reasons why EVERY BC PT ( IMHO) should pop in on the LE TX ACT website and help . One of the things the Act is trying to do it get a special code for the night garments which would help in getting many/most INS to cover.
Please visit :http://lymphedematreatmentact.org/
Also, I am now the MA. state liasion. If you live in MA. PLS PM me and add your info to our list.0 -
purple, you have become an expert and an advocate, may I say a big THANKS for the suggestions and info
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