GRRRRRRRRR I HATE LE..........
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I go in tommorrow to see my 3rd LE therapist. I'm excited! I hope this one works out. I sat here and wrote out a very detailed history of all of my previous LE visits since my surgery in December. I'm hoping this shows her what I'm after. I can't wait, b/c I'm really getting burnt out from trying to take care of this all by myself. I know I'll eventually have to anyways, but some initial quality therapy would be nice.
Wish me luck!
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Jo-5: For me, night time wrapping is the key to control. I wish a night garment worked for me: they're fast and comfy.
Consider going back to the therapist, learning how to wrap, and seeing if you can get a night garment--this is not a do it yourself condition: it just feels that way due to all the hassles.
Yeh, we can self manage up to a point, if you're finding that the swelling is progressing--time for more therapy, IMO.
Melanie_Ann: as someone who went through 5 therapists I can SO relate: I did have my LE LMT, who is highly trained, but she wanted a PT on the case and I found them to be so lacking: only interesting in documenting for insurance, and one started off good but deteriorated, and finally I did find a decent one, but even she had her quirks. I went because I had cords that my LE LMT didn't feel qualified to deal with. At one point I begged her to let me stop....But, I still see my LE LMT and pay out of pocket twice a month, and I needed her soooo much at the beginning--I called her at home all the time.
Wishing you great luck.
Kira
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Kira - What's a LMT? Licensed Massage Therapist? How did you go about finding her?
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Thank you everyone for your encouragement and support re the not so sensitive friend. I've had a hard time shaking that one off for some reason ... thank you for your replies! xo
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Melanie_Ann--I hope tomorrow goes well for you. I was thinking about you this weekend. I am now in heaven having found a good therapist. I was so down several weeks ago. I travel a long way and she sees me at 7:00 am but it is SOOO worth it. Let us know how it goes. Oh, it took several visits before I felt comfortable. Becky
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Dawn-Hope, my therapist is a licensed massage therapist: she was trained by Guenter Klose, when they used to have this intensive clinic in NYC: all the main therapists worked together--Steve Norton, Joe Zuther and Guenter and they worked with a doctor, Robert Lerner.
I found her on the LANA, Vodder and Klose sites. She was working at a hospital clinic, but opened a private practice, and insurance will not reimuburse for her services, as she's not a PT or OT (yet the hospital charged $400/hour when she was there.), but she's worth every penny.
When I first found her, I was so frustrated from the bad care I was getting and she drove to my house on a weekend, showed me how to do MLD, left me detailed handouts, stayed for over an hour and wouldn't allow me to pay her.
When I broke my hand last fall, she came to my house to massage my hand before I got the cast, and brought homemade muffins.
A couple of women on this board have found her former partner, Mary Read, in NYC (they're still close, but my therapist moved back to RI)--I just found out that Guenter Klose had trained Mary to supervise the clinic therapists when they had that intensive clinic, and the women from these boards have been very happy with her. She also has to bill patients directly, as she's an LMT.
A good therapist makes a huge difference in dealing with this. When I got the cast off and was horrified at the state of my hand, she calmed me down--she's the only person who has all my measurements since 2008--and worked on me weekly to help get it under control.
Can you tell I adore her?
Kira
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Kira - Thank you for your reply and you have every reason to adore her. What a gift and what a blessing! The only LE therapists I have found where I am are insurance only and it's $400 a visit. I cannot do that right now. I haven't given up and I'm still looking. You found her after several tries ... it gives me hope I'll find someone too.
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Dawn..............I have a Board Certified LE specialist................Board certified was what the;y said I should get..............not just a LE massage t;herapist....................I googled Board Certified LE specialist...........Infor came up.it asked for my zip code...........that is how I found her.......she was covered by my insurance and it is a $40.00 c0-pay. she is greatand also a cancer survivor....her husband is Head of Pathology at the hospital where I had everything done, and she has her own area righ near the Rad and Chemo dept........try to google your zip.....also she is a member of the National LE Assocoation..........remember if an LE therapist does not know what they are doing they can do more harm then good........check it out
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Ducky--my LE therapist, although she's not a PT or OT, is a member of LANA (the board) and is trained by both Klose and Vodder and does the Vodder recertification regularly.
Unfortunately, as LMT's can't get reimbursed by insurace, they're not getting the--exspensive--training.
In my experience, there are some things an LMT can't do--like assess joints, but for LE care in general, she's great. The hospital clinic where I started out used primarily LMT's (for $400/hour) and got PT's on board to get paid. Unfortnately, the two LMT's I saw at that clinic were not good.
I did find her on the LANA website--but remember that LANA is a written test, and it usually indicates a dedicated therapist, but is no guarantee of clinical excellence.
Why does this have to be so hard?
Kira
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I hve come to the conclusion.............with cancer.........nothing is easy......................although there are those who actually belive it is......................they have no idea....
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Jo-5: the 4 major LE training groups--Klose, Vodder, Zuther/ACOLS and Norton just formed an alliance, and one of their goals is to increase the number of therapists. Right now, Norton is offering a scholarship for training for deserving people on their website, and they say:
At present, Germany has approximately one Certified Lymphedema Therapist (CLT) for every 1,300 residents while the United States has approximately one CLT for every 100,000 residents
I know everyone denies LE exists, but it sure does seem like we need more therapists. My LE therapist has an older patient, whose sister lives in Germany, and a therapist comes to the German sister's house and puts on her garments for her and wraps her when needed, and it's part of the health insurance....
Totally understand your reluctance.
Now, when I first developed LE: I was freaked and scattered, and contacted jovipak on my own, and got referred to a fitter--who got me an open fingered jovipak glove that went to the elbow. Now, I had no clue how to wrap and did this with no therapist input, and it may not have been the brightest idea--as when I finally got a therapist she told me to stop the jovi and wrap, but I was desperate. They do sell jovipak and solaris on-line at lymphademaproducts and bandagesplus. Solaris will alter a garment for free, jovi charges $60/hour.
In an ideal world, a good therapist would guide us through these garment decisions, but sometimes, a good fitter can help a lot.
Kira
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Help w/Kinesio tape - I convinced my NLN LE-Cert PT to use Kinesio tape for my breast/chest but I'm not sure if she's doing it right. Does anyone have prior experience on where the anchors should be placed and the like? She relentlessly insistents I find a compression garment in the shape of a tube top - just pick something up at Victoria Secret...I'm a 32-H pre-LE! So frustrating. I've seen another LE PT who said I didn't need treatment and am consulting with yet another PT next week. I can feel the fluid backing up into my arm which was already treated. Thnx ladies
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Faith Follower, here are two links that might help:
http://www.stepup-speakout.org/breast_chest_trunckal_lymphedema.htm
http://www.stepup-speakout.org/kinsiotaping_for_lymphedema.htm
Hopefully someone with more personal experience will come along. The theme for today is frustrating LE therapists, and those who deny we have it....
Kira
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Thanks Kira - I printed those items out for my therapist so she could start taping me. Looking for the Illustrated Kinesio Taping Manual online. I feel I should be considered certified LE therapists based on the amount of research I've done!!
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FaithFollower, I'm really sorry about the run-around you're getting.
Some of us with truncal LE like this one:
http://www.breastbinders.com/Store/catalog/Traditional_Breast_Binders-1-1.htmlBe sure to buy the lined version if you order one. You can order straps separately.
Be well,
Binney0 -
Ducky, I'm so with you on that! Sounds like a hard day for you and I hope things improve quickly.
Thank you all for the ideas on the burning palms, I am afraid it is chemicals, when the pool is ready I guess I will test it out!0 -
Ok so yesterday I met with a new LE therapist. I loved her immediately. She was very thorough and listened to my concerns and actually did MLD. I was so excited. She wants me to come back twice a week for 4 weeks for treatment. She said she thinks I'm a Stage 1 or eve a O right now, and she took time to assess my hand and thinks I might have something else going on as well...like venous insufficiency.
The bad side, when I went to schedule with the lady at the front...she keeeps telling me they have no more appointments...for the rest of the week. So I just called her again this morning and asked about cancellations and then I tried to schedule for next week, and she's like...that's going to be difficult. Let me ask the therapist and I'll call you back. I mean seriously! That's why I didn't like the other place I was going. They didn't have time for me in their schedule. I'm so frustrated. And to top it off, when I took my wrap off that she did yesterday, my hand is huge! Well maybe not huge but it's a whole cm bigger than yesterday. I've taken to measuring myself.
I don't know what to do... =(
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Bummer Melanie_Ann! My therapist was booked but has started coming in at 7:00 to see me three times a week. I have to get up at 4:00 am to get there but it is totally worth it. Maybe once times have opened up you can book twice a week for the next few weeks. Maybe call and tell her your hand is bigger and she will work you in. Wish I could help you more. We have really been thrown into a frustrating world! Becky
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Melanie_Ann--can you call the therapist and report to her that your hand swelled after the wrap and the front desk had no appointments?
If there are none right now: can you start them in a week and book ahead and grab the time?
I would definitely call the therapist and see if she can deal with her front desk, and report to her the clinical results of the wrap.
At least you found someone you like.
Kira
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Binney,
Thank you for your words about disability. I, too, have had a hard time accepting limitations - and have paid for it! But I am trying now to really limit myself to what I know I can do without "upsetting the applecart" as I like to say.
Susan
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I am so fortunate................I got immediate appts. with my specialist, and have 6 apprs. lined up and I can get them at any time I want 2 days a week................what a shame for you who can't...............and my LE specialist is in the Breast Center where I have everything done......from my mammograms, ultrasounds, biopsy, surgery, RO. MO, Pathology, and Radiation treatments..........along with the LE specialist.............it is one stop at this Re;gional center............plus it is 15 minutes from my home, and I even get free valet parking...............LE is not taken seriously by so many.......................I hope things work out better for you
I guess I didn't realize how lucky I am to have such a great place right hear home.
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they fit me in at 8 am tomorrow! I have to drive an hour, but I'll seriously take anything! Hopefully I'll have better results tomorrow. And today is my bday!
I'm 27! 0 -
Melanie_Ann- Good for you for being persistent! And a very happy birthday!!!! Make them keep working you in! Becky
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Melanie_Ann, I hope you have something very chocolate planned to celebrate your day!
HAPPY, HAPPY BIRTHDAY!!!
Let us know how it goes tomorrow.Hugs and prayers,
Binney0 -
Melanie_Ann, happy Birthday! Hope it goes well!
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Melanie_Ann, Happy Birthday! Hope you're having a wonderful day!
Kira
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Thanks! I actually didn't have anything sweet today Binney. But I do plan to on Friday. I love to bake, so I'm goingto come up with some great concoction!
Thanks for the support!
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Malanie_Ann - I hope you had a wonderful birthday! xo
Good news they got you in tomorrow. Spill it ... tell that therapist everything ... it sounds like she's kind but not so much the receptionist.
Keep us posted. Much love to you! [[[hugs]]]]0 -
Happy late birthday Melanie Ann. Great news the therapist is able to see you today. Let the therapist know about how the receptionst handled you the other day. Sometimes they don't know what is going on in the outer office. My therapist walked me to the front desk and told them when I needed the appointment and they did their best to get me in then.
Sheila
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It went well today! I had the MLD, got wrapped and then they set me up with a PT for some exercise rehab. I didn't even ask for it! They tested my grip strength and ROM, which is severely lacking. So then they set up a home exercise program for me and walked me through the whole thing. It was great. The receptionist wasn't there today so the LE therapist and the PT set me up with appointments for next week themselves.
I'm a little unsure though of her style of MLD. I know there is more than one way of doing it, but it's completely different then what I was taught at first place I went to. I really like the new way b/c it feels really good, but I don't think I could do it myself. She also thought it was strange that they taught me to do the MLD and wrapping myself, but she also told me that she was proud of me for taking itiative to do it. She said she only has about 3 people who wrap themselves...?!?! I thought that was the point...to learn to manage it yourself, once it was better under control. Hmmm?
But I'm sticking with her, at least for a few weeks, to see if I get results. I haven't had any real consistent treatment yet. It will be nice to see how I respond with consistency.
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