GRRRRRRRRR I HATE LE..........
Comments
-
Her brother looked frail to me. Since Binney and Kira have helped sell so many of her videos I think they should be in Sherry's next one! She looks so different in her videos on Facebook. Healthy Steps must have been made a while ago. I had some of my co-workers doing the video with me as I had to go to work early and could not do it until later in the am. I should have brought my bubbles. A class sounds great Binney. Wish we had one here. At least I had several lymphatic systems going today.
0 -
Binney, thanks so much for the "James" scoop. He's an interesting presence on the video, and any man who is willing to pull off leopard print pants is alright by me. That takes some guts. You go, James/Marc!!!!!
0 -
Aha, I looked on LeBed's site and looked under "look for a class" in your area. There was one for Knoxville which I am near. It said the instructor was LeBed trained. I called the number and it said belly dancing! I hung up--not ready for that. A lady called back a few minutes later. She took training with LeBed and had tried to get a class going but with no response. She also teaches belly dancing. She is a bc survivor with LE. She was in training with LeBed with only two other people so she said they got a lot of attention. My call inspired her so much she is going to try to get a class going again--even if only three or four people. She has also tried to match belly dance moves with LE with input from her therapist. This has made my day. Just had to share.
0 -
Becky that sounds like it would be a fun class. If I lived closer than 3 hours away, I would like to attend that class.
I would love to get the dvd. I will ask for it for my birthday in October
, if my hubby or son gets the hint. I have tried some of the online exercises, especially the frozen shoulder.Sheila
edited to try to get the spacing right.
0 -
I agree that james/mark looks frail the video. at times it looks like he winces while doing some of the moves. i thought either he was a stroke or a prostate cancer survivor. you all have a great eye ... i hadn't picked up the stripe down his pants was leopard print ... so funny! and you're right ... that takes a pretty secure guy to wear those!
i haven't seen any of the recent lebed stuff ... i'll look for it on facebook. i would love to take a class! thanks for telling us how to find a class near us ... i'll definitely check it out ... and maybe see one of you there!
0 -
Hi all,
I'm not sure who wrote about helping to minimize trauma to the elbow from sleeves but can you repeat what you use and how. By the end of the day my inside elbow is red and very irritated. Thanks in advance for any input.
Betsy
0 -
Binney-I wonder if your instructor was talking about another video. The end credits lists his name as James Wolford. That seems to be taking it a bit far to cover his identity. Maybe there is a picture if we google her brothers. Becky
0 -
I just googled Marc Lebed and a facebook page came up with a (kind of dim) picture that looked a lot like the "James" in the video. Can't be sure, though...
0 -
Had surgery Dec 29, 2010 bilateral mastectomy and was dx with lymphadema yesterday. I have some in my arm but mostly it is in my side under my arm and is moving into my back! I haven't heard a word about this being in those areas and I'm a little freaked out! I start therapy on Friday.unfortunately I had lymph nodes removed from both sides so the therapist is going to try to move it into my groin area. Anyone out there ever dealt with this? Any suggestions?
0 -
I am hooting over this cyber-stalking we are doing of poor "James". It's like we're 13 yr olds talking about Shaun Cassidy.
Who knew LE could be so much fun??????
If I make an LE video, will you guys stalk me? Probably not.
0 -
Christine - I am sorry to hear about your LE development and I think it is good that you are seeing someone early. When mine first appeared it freaked me out as well!0
-
Christine, don't panic - a good LE therapist can move the fluid for you and show you how to do it, too.
I have LE in my right arm and side, and some puffy spots in my back, too. You can manage it, I promise. It just takes time to learn how to do it, and you need a really good therapist.
Hang in there!
0 -
Christine, lymphedema can be in the entire "quadrant"--the chest/arm/back. I'm going to put a link in for truncal and breast lymphedema.
http://www.stepup-speakout.org/breast_chest_trunckal_lymphedema.htm
Also, on the front page of the stepupspeakout site there are links to the National Lymphedema Network position papers, and there's one on treatment.
There are many women on this forum with either bilateral lymphedema or nodes out on both sides and the therapist can use the groin and the neck to move fluid.
It really stinks to get lymphedema, and I'm sorry you joined the "swell club" but please check in and let us know how you are doing.
Kira
0 -
This is a great thread to get all the knowledge you need to get you out of the Freak mode....I have visited that place. Hang tight to all Newbies!
Binney or Kira can you check my post from yesterday.... my never ending Questions.
I checked out the Lebed thang and it really made me laugh. I would rather bounce. but have not gotten there yet.
Hugs
Brazos
0 -
Becky, what a hoot -- belly dancing!
Gotta love it! Maybe ask your LE therapist to get the word out to her patients and former patients about forming a class, too. And if you ever attend a local face-to-face bc support group, Lebed is wonderful for during and after bc treatment too, even without LE, so that's another place to recruit.Suzie, we have definitely regressed, and you're right, it's fun -- or at least it's really funny.
Becky, she had a couple of slides, one of them from the DVD, and in both she pointed him out and told us it was Marc Lebed, Sherry's brother. Of course she could be mistaken, but she sure believes it herself. Christine, welcome! I'm so sorry you're dealing with all this. It's very scary right at first -- glad you're getting in to see the therapist so soon, as it will be reassuring when you start to see progress. When it's in the side, back, or chest/breast it's called truncal lymphedema. It gets better, honest!
Betsy, try a little cornstarch on the area before you don your sleeve. Dump some into the toe of a soft cotton sock and rubberband it closed, then just pat it on right where you need it (keeps it from getting all over the bathroom floor).
Brazos, hooray for the arm reduction! Whew! I'd guess the compression sleeve would be fine as long as it's not directly covering any swollen nodes. And of course as long as it doesn't hurt. Pain is not okay. I don't know whether activity would increase the lymph node swelling or not, but I don't see why it would. It increases seromas, but the mechanism isn't the same. Does it seem to you that activity is affecting it? I'm really sorry for the "wait-and-see" thing -- waiting rots! -- but I'm looking forward with you to all of this resolving before your next check-up. Keep us posted, please!
Hope everybody is enjoying some gorgeous Spring weather! Be well,
Binney0 -
I looked up Sherry Lebed Davis on Facebook and she is friends with Marc. In the picture of him it does look like "our James"! Maybe we should ask him to do a video of LE exercises and start a cult. This is a hoot. I do think laughter will decrease the swelling.
0 -
A good belly laugh promotes good LE breathing the same as singing in the choir. Sometimes in my yoga class we get a good laugh going when we get tickled at some of the new poses our instructior wants us to try.
Sheila
0 -
I don't have the DVD to compare but check out this picture and see if this is the same man. It looks a lot like the FB one...at least the beard makes it look like him.
http://www.fowh.com/fowh_history.html0 -
Suzzybell, Kira and Binney4, thank you so much for your encouraging words and the link. It helps to see it in print. My physician said it was post op swelling and would resolve on it's own but it has started spreading. Ugh! This has been a really hard five months! Thank you all so much.
0 -
to all you wonderful sistas who showed me the way to PT i went today.i do not have lymphedema i have edema.no swelling of the arm,range of motion is good but the edema is in the breast ,side and back.massage for 1 hr. 2x a week and self massage 2xa day.she has 32 yrs experience and claiming if its done right it will be cured.CURED?,NED?still have to worry about lymphedema?still have to wear the bracelet?is that cured????my head is spinning and im supposed to be happy??????massaging for 30 min 2x a day wearing a compression bra????am i missing something???0
-
Grannydukes, good question! What bracelet are you referring to?
0 -
Hi, Granny:
Believe me - I am thrilled if you don't have LE but thought edema normally occurs up to 6 weeks after surgery and resolves itself fairly quickly. Did you have surgery last year? Also, your pt may be a genius, but in my very limited experience, most medical professionals, know very little about LE unless they have specific training in the field.Even if you don't have LE, you will still have to be careful with yourself...we are at risk always - even years down the road.
BC sucks so bad, doesn't it?
0 -
I am wearing a hot pink bracelet saying no BP,injections Lymphedema alert.even if you dont have it like you said you always have to watch out for it.
I did have surgery in sept 2010 and the swelling went up and down until it really started to bother me.And yes my PT is a specialest only in lymphedema.board certified ..she hardly ever sees edema at this late stage but it can happen at any time.
0 -
Grannydukes, I don't want to be negative or doubt your PT, but I think she's not calling this what it is: it is truncal and breast lymphedema. And what you describe is swelling that started after surgery and progressed, a very typical presentation of lymphedema.
Lymphedema can show up at any time after treatment, and unfortunately it can be decades later.
Breast and trunck lymphedema is a bit different, I usually see it after surgery and rads. Or a breast cellulitis.
Edema is swelling. Lymphedema is swelling due to back up of lymphatic fluid. "Normal" edema is a mixture of lymph and serous (tissue) fluid and is a response to injury, bad circulation, sometimes heat or exercise. Sometimes it's hard to tell them apart, but usually edema occurs in a leg or arm that hangs down or near the site of an injury: it doesn't show up in the breast and trunk other than in the post operative phase. In my experience--and I am a health care provider and work in rad onc.
Unfortunately, even board certified LE PT's often don't recognize truncal/breast lymphedema--and the treatment she's suggesting is manual lymph drainage massage. Luckily, truncal edema usually responds nicely to treatment, and can even settle down and seem normal, but even for women who swell in their arms and it gets better, it's considered stage zero lymphedema--the tendency and risk will always be there.
Here's the link to truncal lymphedema from stepupspeakout:
http://www.stepup-speakout.org/breast_chest_trunckal_lymphedema.htm
We found a link to an article that describes breast/trunk lymphedema well:
http://www.lymphoedema-uk.com/journal/0101_breasttrunk.pdf
I send a lot of patients: men and women both, for lymphedema therapy, and I've run into PT's who want to take the "stigma" out of LE and tell me that it's not a big deal and it goes away. I think it's good to be hopeful and as positive about dealing with LE as possible, but outright denial doesn't help any one.
There is one more link from stepup, it's for health care providers:
http://www.stepup-speakout.org/essential%20informat%20for%20healthcare%20providers.htm
Granny, I really hope that some massage and a compression bra makes this all better, but I do think this is breast/trunk lymphedema.
I'm writing a book here, but this is from bc.org
http://www.breastcancer.org/tips/lymphedema/ask_expert/2008_04/question_07.jsp
Breast lymphedema possible?
Page last modified on: August 25, 2008
Question from Amy: Does lymphedema only occur in the arm or can it be in the breast as well?
Answers -Nicole Gergich, M.P.T., C.L.T.-L.A.N.A. : Absolutely! Not only can it be in the breast as well, it can be exclusively in the breast and chest wall, even if it does not appear in the arm. So we need to recognize that breast edema and chest wall edema exist and should be treated.
Jennifer Sabol, M.D., F.A.C.S.: As a surgeon, I probably see it more acutely than most and have a more difficult time getting other physicians to acknowledge that there is such an entity as lymphedema of the breast which is actually quite uncomfortable for some patients as well as alarming, because it is difficult to ask for treatment for swollen breasts. I think maybe you can comment on how you manage patients like this.
Nicole Gergich, M.P.T., C.L.T.-L.A.N.A. : I would say, first of all, recognition is part of the key. I believe anecdotally that I am seeing more frequency of breast and chest wall swelling - lymphedema, if you will - now with the sentinel node biopsy, as we are removing the direct drainage pathway out of the breast. Unfortunately, it is going far underrecognized. Treatment for breast and chest wall lymphedema is analogous to the way we would treat the arm, meaning that the patients would require lymphatic drainage, compression, therapy, exercise, and skin care. Many of these patients will require custom fit or near-custom compression bras.
Kathryn Schmitz, Ph.D., M.P.H., F.A.C.S.M.: I would say this is an international problem. I was at the Australasian Lymphology Association meeting in Perth in March, and this issue of seeing more breast edema was a theme there. It seems to me that the compression garments and treatments available are not as advanced as they are for arm edema, the compression garments in particular.
Nicole Gergich, M.P.T., C.L.T.-L.A.N.A. : I would agree with that to an extent. I think there are excellent compression bras that exist. I agree with you that we are as not highly evolved in this area in recognition, treatment, and management as we are with the arms.
Jennifer Sabol, M.D., F.A.C.S.: I would add one note of hope, and it is sort of anecdotal. I think this is one of the few times that lymphedema does have a tendency to regress. It's probably due to the acute injury of the radiation therapy. Breast edema does tend to go down over time, though it may not disappear. It is a very slow resolution of the edema and it's almost never complete. I generally tell patients to expect a very slow, ongoing improvement, even over 2 to 3 years after their radiation therapy, until they reach a stable plateau. I'd be curious if you two have found the same sort of better overall prognosis for the breast edema.Granny, I don't want to upset you, I just felt like I needed to pass on the information.
Hope it all goes away quickly.
Kira
0 -
Grannydukes, lymphedema is sooooo confusing! I'm so sorry you seem to be caught in a whirlpool of conflicting information.
Deep breaths! You're doing great! You've done everything you needed to do so far to get on top of this, and tonight you should spend some time patting yourself on the back and looking forward to getting that swelling down. And you've got it right -- you still need to be super careful, wear the stupid bracelet, keep educating all the medical professionals, spend some time every day fussing with self-massage, wear a compression bra -- how CURED is that?!!
The key here is to keep communicating YOUR goals to the therapist as clearly as you can. If two days a week isn't doing enough, TALK to her. Four or five would be standard, at least for a couple of weeks. Don't be afraid to ask about anything and everything you don't understand. It gets easier moving forward, so you have better times coming.
Hang in there, and let us know how we can help!
Hugs,
Binney0 -
Good Morning - I have a question, I have been wearing my sleeve during the day and I have a gauntlet too that I wear. I notice that by mid morning or so the area on the top of the hand between the wrist and the base of the thumb/first finger hurts. When I flex my wrist down it also hurts in that area. I can see that it is more puffy than my other hand. After a nights sleep it looks and feels a bit better but then acts up again. My sleeve doesn't seem too tight around my wrist, I have small wrists, and it is a long so it comes down all the way. Any ideas? I am wondering if the sleeve is making it worse in my hand but I am afraid to go without the the sleeve - can I take it off periodically while at work at the computer? My LE is stage 1 in my arm.
0 -
omaz... i had similar trouble with my guantlet. it made my left thumb turn purple and swollen. I was wearing a medium guantlet and went up to a large, even tho my measurments said I was a medium. Hope this helps. I felt much better in a larger size. Tricky these measurments are.
Hugs to all.
0 -
brazos - Mine is a medium too, I could try a large, even though my wrist is small, my hands are wide and the gauntlet kindof squeezes the thumb in. Thanks0
-
Hi Kira and Biney---i read everything.thanks for all the info.here comes my questions
how do they do lymph drainage????through massage.thats what she said.AND im wearing a compression bra that was fitted for me after i had the lymph node removed.it fits perfect and comfortable.I use special creams that i massage 2x a day.its the manual massage im havin trouble with.my hands are no good.i could never massage for 30 min.but i called her and told her this and she said when ever you think of it push the fluid toward the scar where the node was removed.ill see her again on Tues.my insurance will never pay for 4-5x a week 1 hr.tx.and i do have good insurance.BTW everything that Dr Sabol said is exactly what she told me.she said its like a clogging that has to be unplugged.
if you girls think i should get a 2nd opinion ill do it.hey i got burned with BS...im not a fool anymore.cannot afford to make anymore mistakes.i had 3 surgeries instead of 1.IM LISTENING AND WORRIED. Im the best worrier in the world.thanks sistas.God bless all of you suffering this nightmare.huggggggggsK
0 -
Granny, I started to write this, and some time passed, and I wanted to see if Binney chimed in, but here goes:
Granny--the lymph drainage is through the gentle massage--what is done is to move the lymph toward nodes that work and can absorb it--you avoid the operated/blocked/removed nodes and can use the groin or neck nodes as needed. There's a pattern to the massage: you clear the area closest, then move farther down to clear the more
There are various techniques of how to move the lymph fluid, but as NatsFan said "lymph is slow and stupid"--move it gently and SLOWLY. The techniques are slow sweeping stokes (just move the skin), or some people will do "stationary circles"--kind of tough technique to teach without showing someone, and some people pull the skin gently and release it.
For MLD/Manual lymph drainage, it's usually done without lotions, because you want to move the skin to move lymph and lotion makes the skin too slippery.
Granny, not all LE therapists are great, and some have their biases, and I think it all depends on how you're doing under her care and if you are improving.
Personally, I don't do MLD for more than about 10-15 minutes. I don't have the patience for 30 minutes.
Granny, I was so worried I'd offend you. Thank you for being so gracious.
Kira
0
