GRRRRRRRRR I HATE LE..........
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Kira-offended me.are you kidding.im sooo grateful for all that you told me.im such a dum dum when it comes to alot of info.she did tell me to manually gently push the skin toward the neck bone.if you didnt tell me i would have never remembered.sooo im doing it gently as you said a few times a day and hoping it works.today the weather is very bad and im feeling it under my arm but im still working it.damn this sure suks.
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Just had to stop in and vent. GGRRRRRRRR I HATE LE. One of those days when I could just scream having to deal with it. Work has some sympathy but we are so rushed and tight right now even if they could care they couldn't do much to help. I really really hate LE
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Kate,
LE rots, and I wish I could just ignore it, but as the weather warms up and gets humid, my hand is puffing up to remind me that I can't....
And I resent the time, and having to factor it in, and feeling it.
And the limitations. And everything about it....
I'll advocate and educate and it still doesn't make me hate it any less.
Kira
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Just came across this, explains my feelings exactly today
http://www.youtube.com/watch?v=vpMI8Qu5fsc&feature=relmfu 0 -
Jo- Im not doubting you BUT she is a lymphedema spec.right.not a edema one.she hardly sees it but she does the lymphedema everyday for over 30 yrs.why would she do this????she has a very busy practice and came highly reccom.what should i be lookin for?????she measured everything and did a real good examination....now dont think im defending her i just want to get this straight.im sooo confused.i know a second opinion would never hurt.gonna do some more homework and hope someone clears this up and give her one more chance and a lot of questions.any suggestions would be appreciated.thank you.huggggggggs K
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Granny, I went through about 5 LE PT's in my search--and most of them were highly trained, but unfortunately, even with their training and LANA certification, there were problems.
One woman: trained at Foldi Clinic, practiced at a Harvard teaching hospital--it started off okay, and then just got plain weird. She told me "you have swelling, but it's not lymphedema because it's less than 2 cm difference." Well, I was wrapping my arm every night, so my LYMPHEDEMA--not "swelling" was treated. And she was the one who told me to treat it.
So, even with experience, and good credentials, therapists, unfortunately operate on their own and can adopt beliefs--like "edema never starts this late" that are just plain wrong.
And, LE therapy came to this country in the 1980's, so it's really rare to find a therapist with 30 years experience in LE.
My current LE therapist worked with the people who brought the Foldi clinic model to the US--in NYC, Robert Lerner, Guenter Klose, Steve Norton, Joe Zuther, and she started around 20 years ago. So, just who did this woman train with?
And, why does she have you use lotion with MLD?
Experience, unfortunately, doesn't necessarily guarantee accurate knowledge.
From what you've told us, this really sounds like truncal lymphedema, and that's how she's treating it--with massage and compression, but the need to not call it lymphedema is unsettling, and the assurance that she can cure it is unlikely. Lymphedema can be well controlled, and some women require very little or next to no treatment for it after it's brought under control, but anyone who understands lymphedema wouldn't promise a cure--as much as we're desperate for it.
Did you ever see this link?
http://www.stepup-speakout.org/Finding_a_Qualified_Lymphedema_Therapist.htm
Maybe you could ask her why she's calling your swelling edema? And why she finds the presentation--which is swelling after surgery that has lingered and progressed, atypical? And other than her experience, who did she train with?And, does she treat truncal/breast lymphedema frequently?
You can overlook idiocyncracies as long as you're getting results, but it's good to understand where she's coming from.
For the first year, I would pm Binney with yet another story from my PT saga, and she would pm back that I needed to keep looking. My LE therapist is a LMT, and she wanted a PT on the case, and after the 1) OT who had no training in LE and had me do therabands without compression, 2) the weekend wonder Linda T MIller grad who kneaded me like bread dough 3) the well trained Harvard woman who became increasingly bizarre and just talked about herself 4) the well trained local woman who after my measurements weren't large enough in my arms (my swelling is mostly in my hand/forearm) wouldn't touch me and told me to stop compression and finally 5) the Klose trained PT/LMT who finally got the last of my cords to go away--the whole process was exhausting, expensive and down right scarey. And upsetting. And I had the sense that without Binney I'd be out there in the wilderness, alone.
Kira
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Kira - Thank you for sharing your story. It gives us newbies hope there IS someone out there who can help us but we need the wisdom, patience and courage to stand up for ourselves and keep looking. Without you all ... I don't even want to think about where I'd be physically and emotionally.
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GRRRRRRRRR I HATE LE.......... I am so tired of my chest and arm hurting. Well my arm is not too bad today just aching but my chest from my collarbone down and under my arm is such a bother. My LE therapist is away so won't see her for a couple of weeks. It is really being controlled but some days it gets to me. Then because I wasn't wearing my sleeve, a cousin says to me - oh your arm is all better? I just said, no I was tired of my sleeve so hadn't put it on.
I really can't complain because there is good awareness of LE and there are some really good therapists but it's the medical profession that needs education here..
Hope everyone is having a good day.
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I just wanted to add to the story of my PT saga: the final PT, and the one I'd go back to if needed, is Klose trained, and an LMT as well, and did finally resolve my cords (the reason for the search), but she insisted that I always wear a sleeve and glove at all times--yet for me, with hand swelling, and no swelling above the elbow (yet), the sleeve can cause my hand to swell--so I would drive to her office and put them on in the car....
My LMT is in private practice, no insurance involved, I pay her and there's no need to justify the visits to insurance with measurements (although she measures me every month) and I've seen her since 2008, and at this point get twic a month MLD and she wraps me afterwards.
That's my saga of finding providers.
Ironically, I'm off to see a PT: I got a bit of frozen shoulder after my cast, and there is a PT who is trained in MLD by Norton and she is seeing me for my shoulder--not LE--but she understands LE.
I refer patients from my office to LE PT/OT's and it's a constant struggle to get the services I want and I think the patients need--I read the notes carefully and push back. Most providers, who don't know much about LE would just sign them. Just yesterday I saw a woman whose Solaris is not helping her hand, and she didn't call the PT or the fitter, so I had to...And Solaris....
I do think there are got LE PT's out there, but I've yet to find the perfect clinic for me or the patients for the office where I work--but my patient with the bad head and neck LE is doing great--at a clinic that I didn't have much luck at personally, so mileage varies...
Kira
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Just adding my very limited .02...
I totally agree with kira but also think that besides the certifications, I need someone who is continuing to study and learn, and is open to new ideas. My therapist is Vodder trained and certified but she also is constantly going to training on kinesio tape, and all kinds of other classes because she is encouraged by her management, and she has a real desire to learn more and get better. She's LANA as well and keeps up with all of the accreditations. She's always interested in what I learn here, and she actually sends me research papers, etc., and asks me what's working for me, and for you guys as well.
I don't want someone who thinks they know it all and have seen it all...I need someone who wants to learn even more.
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Suzybelle, I'm with you, I trust "I don't know but I'll try to find out" over smug confidence (read arrogance) any day
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Kira, my LE/PT was unable to get rid of all my cords...the ones running from under me pits heading into my pecs and inscions...using myofascial release. my arms she did a great job. Is this unusual? I am 10 months post BMX. My onc sx says she can cut them.... aarrrggaaah. They are so thick and binding...
Happy fryday to all.
Here is to doing some driving the lawn tractor this weekend....and handing the wacker to DH.
Hugs
brazos
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Hello All...and the work continues.
I recceived the denial for lymphedema treatment from the insurance company today. I will fight it. Idiots, complete idiots! It just makes me so mad. Imagine what the hospital clinic is making an hour to watch me do self draining! It infuriates me!!! (excuse the rant) I have just returned from therapy with this Vodder trained therapist I have found. It was my sixth visit and I have some amazing results (I think) already. I felt a difference with the swelling in my neck after the first visit. The one contracture above my scar is almost worked out. The other underneath the scar was like a rock and is 60% better. I still have quite a bit of fibrous area under my armpit and up above/around there; and of course the trunk area but I was never asking for a miracle! The second week I was going there she reduced my rate from $75.00 per hour to $45.00. She truely wants to help people. I will scrape the dollars together to keep seeing her and am so glad I found her. She too is one who is always learning and reading and doesn't act like she knows it all.
Linda Lou, Kira, Binny, Suzybelle, really, all of you on this thread; you have helped me SO MUCH. I think I would be a crying baby about now if it wasn't for you!!! You have given me the information to write a well informed letter to the insurance company. I think I am going to write a letter for each of my doctors and say please put this on your letterhead and mail it in. I promise right now that I will fight for me and for all of US so that one day lymph therapy will be a regular part of our treatment.
Next, letters to my representatives and senators....
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BarbaraJo, insurance companies thrive on paper, so when I appeal I always include lots of documentation, and I ask my onc's office to fax it with a letter from their office, because when it comes from a doctor they have to read it all.
Here are a few suggestion of documents to include, in their entirety but with significant points highlighted:
The Women's Health and Cancer Rights Act of 1998 (WHCRA) - note under section 713 (3) that it covers "prostheses and physical complications all stages of mastectomy, including lymphedemas; in a manner determined in consultation with the attending physician and the patient."
http://www.cms.gov/HealthInsReformforConsume/Downloads/WHCRA_Statute.pdfThe following Position Papers of the National Lymphedema Network:
Diagnosis and Treatment
http://www.lymphnet.org/pdfDocs/nlntreatment.pdfTraining of Lymphedema Therapists
http://www.lymphnet.org/pdfDocs/nlntraining.pdfBreast Cancer Related Lymphedema
http://www.lymphnet.org/pdfDocs/nlnBCLE.pdfAnd the Essential Information for Healthcare Providers page from StepUp-SpeakOut:
http://www.stepup-speakout.org/essential%20informat%20for%20healthcare%20providers.htmAnd any other information you find useful. You might search LymphedemaPeople for pages to include:
http://www.LymphedemaPeople.comIt's a lot of paper to fax, but my onc's office does it with glee -- apparently they like those insurance folks to have plenty of interesting reading material.
Another thought that sometimes helps is if you request (or insist on) your insurance company assigning one contact person to you since your medical situation is complicated. That way you don't keep getting Joe Blow when you call, and you can hope to get somewhere (assuming you call often and don't let them forget who you are.
)You rock! Onward!
Binney0 -
Just wanted to send out a quick update on me. I'm still recovering from chemo so it may be a few more days before I'm able to comprehend things I read.
I had my arm wrapped after PT on monday and I took it off 6 hours later to drain again and re-wrap and my hand was SO much better. I was so happy. I wish she would have wrapped it like that the week before. I can actually see the veins and knuckles on my hand again. I have some swelling that is hanging on between my thumb and first finger though. The wrapping frustrates me. Makes me want to cry because it never 'feels' right. I think I'll go watch a youtube video. I think someone mentioned one on here.
Thanks for the support ladies. I'll try to get caught up once the chemo fog lifts!
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Brazos--it's not unusual to have cords linger. Or come back--please do NOT let your onc cut them.
Joe Zuther just posted a new page on his blog on axillary web:
http://www.lymphedemablog.com/2011/04/28/axillary-web-syndrome/
Kira
Oh, and on the topic of LE PT's, Binney had an unfortunate experience with her first, LANA certified PT. I totally agree with Suzy and KMMD--I always trust health care providers who admit their limitations--and distrust those who have all the answers.
I have this amazing ENT physician, who is just superb and I've always loved his keen insight and he's the first person to say that he's not sure, but he'll look into it--just a great person and amazing physician. And he loves to research and learn new things, but doesn't grab new technology until he's certain it's not a gimmick. That's my ideal for health care providers.
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Had my first LDM today, it went well. It was more comfortable than I expected. Hope it helps!
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Christine, good news!
Keep us posted,
Binney0 -
Binney I love you!!!
Thanks so much for the info. I copied it so it will be much easier for me to go through. I had some of these sites but not all of them. Especially the WHCRA!! Yahoo, you got me pumped!
I had the medical records department fax copies of the physical therapy bills to me. The evaluation was $220. Two other bills were for $349.00 and $474.00. The paperwork is hard to read but I think I will be able to look up the codes and that might help. I had no manual lymph drainage for any of these visits. What a rip-off! And BTW the two that I saw at the clinic are LANA certified! Shouldn't they no better?? I will be writing to the medical director of oncology too.
I have been at this computer almost all day. It is time for a little "tramping" I believe. Good Night All.
Melanie Ann...glad you are doing better. Love your smile.
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ok so I had a grrrr day...I get swollen at the end of the work day...tonight I went to a late night after workd party with much younger people....I just didn't want to wear long sleeves....or my compression. I noticed it was a bit worse than usual....and even the gauntlet was not doing the trick...so I had to put on my glove and sleeve and my work blazer and I just felt old.
Also alcohol=flare.
And I just discovered they make whipped cream flavor vodka. 0 -
That is grrrr cookiegal. I didn't wear my sleeve so much yesterday either because it was hot and well yes, grr here too. My hand hurts too where it's puffy. I need a lymph-flow mantra or song..... 'keep those doggies flowin - flowin flowin flowin' but the 'raw hide' part doesn't exactly work.0
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Omaz, Here we go on the song.
Keep that fluid flowin - flowin, flowin, flowin,
Keep that fluid flowin - MAS-SAGE!
sheila
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Fantastic!!!!!
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You gals are toooo funny. Keep the humor going! Whip cream flavored vodka? Hmmmm.
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Whip cream flavored vodka + orange juice = cream cicle. Definite yum.
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Cookiegal I know what you mean. The office staff don't know about my BC so wearing the sleeve is really hard to do. I live where is't now 85 outside and luckily they keep the office at a cool 73. I'm having to wear sweaters to cover my "secret". The others are starting to wear the sleeveless cute tops.... Maybe I can go online and find the sleeves that have the designs on them and just say I'm trying out a tattoo.
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Omaz and Sheila, amazing!
A lymphedema theme song! Definitely want to avoid the raw hide -- that's what you get in your finger webs when your gloves don't fit right.
Cookie, that is such a deflating feeling -- I'm so sorry! Makes you want to sink into a corner and sob. On the other hand, that cream-cicle vodka certainly makes you feel young again!
Samsue, I sure hear you -- the self-consciousness really steals the "normal" from our lives.
The "designer" sleeves are here:
http://lymphedivas.com/
Let us know what you pick out!Happy weekend, all -- anyway!
Binney0 -
The LD's just don't fit me.....
I actually wear everything at work....and it was 75% work people at the party...I just for some reason wanted to be normal...and instead I got puffy fingers. Sigh. If had not been 11 PM after a full day of work and I had stayed off the hooch...I would have been fine.
Onward!
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Cookie,
You are a brave woman: I can't tell you how many times I've suffered with swollen fingers and refused to put on a glove. Not so much anymore.
The irony for me was that I broke my hand, and the cast was no stigma, nor was the plastic splint later. Why the glove?????
I work in a radiation oncology center, all the staff know my history, but when I walk in in the morning with a glove on, some look at my hand--I guess it's reflex, but after two years, come on!
I teach a small seminar class, and would not wear a glove with students, and after the fracture, I will.
So, maybe I'm evolving.
Okay, our paper is all about the royal wedding, and what do I focus on? The picture of Kate's hand as he puts on the ring......Sicko (me)
Kira
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BarbaraJo, I'm not sure if this has been mentioned here, but I have insurance that requires a referral for treatment. When I need to see my OT CLT-LANA therapist, she always has me request a referral for Occupational Therapy - Eval and Treat. Visits with her then need to have "goals" which determine the number of appointments needed. Goals like reduce the swelling from lymphedema or measuring for garments doesn't work, but needs to be something functional, like regain strength or movement, etc. If your insurance is like mine, maybe it's just something with having the wrong code.
Good Luck!
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