So frustrated!

BetNY22

good morning ladies- I am basically a lurker who reads everything you ladies write but hardly ever comments. I appreciate immensely all of the information you provide and really don't know what I would do without your support and knowing I'm not alone. I have been going for mld 2x a week for the past 2 months and I just feel like its getting worse not better. Not sure if it would be even worse if I weren't going. I am using a trained therapist at Sloan Kettering. I now have it in my hand and instead of it being on the top it's in the pads of my hands...I just received a glove yesterday and was so excited that it may be the answer but when I have it on it compresses everywhere BUT the pads of my hands (it's the area right under the fingers on the inside of hand).I also have arm and truncal lymphedema. The arm is minimal but the trunk gets real heavy and the only thing that really feels better is having a big Tshirt on with nothing underneath. I still have tissue expander in and I really have to make a decision on whether I'm doing diep or implants. I just want to do what's best to keep this lymphedema under control. All week I've been so down over this hand swelling but I guess it's a small price to pay for my life. I would appreciate any input anyone has on gloves or doing implant vs diep.

carol57

Betny22, that really is frustrating!!!! Don't we wish that scream therapy would work for LE?

The hand is hard, because it's not a cylinder, so it's difficult to get even compression like a sleeve can put on the arm. I have no hand LE so cannot speak from personal experience, but I wonder if you might try to round out the area of your hand by inserting some foam inside your glove to thicken that area (give the glove a better surface to compress). I suspect that the bumpier the foam the better, although it might be difficult to get something to fit inside the glove that's also got some bumps to it. I imagine that if you come up with some kind of insert, it's not going to make it any easier to actually use that hand, but it might be worthwhile experimenting to see if you can find a way to push out the lymph from that spot on your hand.

We have some pretty creative women in this forum and lots with hand issues, so I hope you get some more suggestions pronto.

Have you tried a compression T shirt for your truncal LE? UnderArmour compression fit, men's, smallest size you can realistically squeeze into, worn inside out to keep the seams from irritating you. I find that the compression makes my truncal LE feel much, much better.

I hope you get some more ideas soon...

Carol

Kicks

Gloves can be incrediably hard to get a good fit with for some of us.  It took over 2 yrs for my CLET guy to get mine right.  Every 6 months when he ordered my new sets, he'd tweek the measurements just a bit.  Finally have it down now .   My fingers are a bit webbed so OTS are not wearable at all without a lot of pain and sores forming.

You can get pockets in your gloves that are designed to hold a pad in areas that need it.  I have a pocket on the top of my hand.  A while ago, I was having a minor problem and K. thought should try a pocket and pad.  I really like the feel of the glove better with the pocket there better than without but very seldom ever use the pad. There are many different shaped pads for different areas through the manufacturers.

They made the fingers too long on one glove and it went back because it caused problems.  My usual glove fingers stop right at the first joint with no issues.  That glove they made them a bit longer and they went just past that joint and ends of fingers turned into 'little sausages'.

I also have issue with compression levels.  I have to have low or it makes LE a lot worse.

We are all so different - there are answers though, sometiimes takes longer to find and sometimes different that what works for others.

BayouBabe

I do not have any advice for you, but wanted to share my experience.  I have lymphedema that affects my hand and fingers as well.  Once I had my tissue expander replaced with a permanent implant, my swelling has been more manageable.  My LE doc thinks that the TE was probably pressing on a nerve and creating some of the swelling.  Best of luck as you search for a decision and answers!

carol57

That's interesting, bayoubabe.  I had a different kind of recon, so not familiar with the TE/implant exchange surgery.  When surgeons remove scar tissue around the lymphatic pathways it sometimes improves LE. Do you know if your exchange surgery included any scar removal?  Just wondering. 

BayouBabe

No, no scar removal.  My TE were overfilled due to rads, and they were pressing into my arm pits though.  I felt instant relief from pain after surgery.  My last arm measurement showed the least amount of swelling since the whole LE thing started. 

carol57

I'd never heard nerve pressure suggested as related to LE, but then, LE is so non-standard that I'd believe about anything could have an impact.  Thanks for sharing your experience, bayoubabe.

BetNY22

wow, thanks for all the great advice! Kicks do you know a brand of one with a pocket? Im pretty sure I haven't seen one of those yet. I am going to mention it to my le therapist tomorrow. Babe I am so happy to hear that you had relief, my breast surgeon swears I will get relief too. I see my plastic surgeon on Thurs, I am sure she will try and convince me to do the diep. I've went to 5 plastic surgeon consults and they all tell me to do the diep since I had radiation already. I sometimes feel its a money thing. I am alittle scared to do the diep since I have had really bad back problems and don't know how good being hunched over after surgery will be. I did a consult over the phone with a surgeon that said if I did diep there was a good chance my le would get better. I just don't know. Carol, thank you, I have some foam in my office that I will try tomorrow. I have been sitting with my arm elevated for 2 hours now and the hand just wont go down, hoping I miraculously wake up better.

carol57

Bet, I think there have been some studies suggesting that LE incidence is lower when there's recon surgery, but I don't think these were big studies. The diep flap typically includes some lymph nodes, and these nodes therefore become part of the reconstructed breast, and that might theoretically help truncal LE, but I think it's a stretch to imagine that arm LE would benefit. 

I had bilateral diep with SNB/bmx and my LE is quite mild and manageable, but of course I have no clue if my choice of recon had any influence on my LE outcome.  I can tell you that I am very glad to have made the diep choice. I hear what you're saying about back/hunching, but that's temporary. I had that experience and recall finding a way to stretch the lower back muscles without tugging on the ab incision, which helped some.  Lots of women have had excellent results with implants and lots have had excellent results with diep, and some with each recon type have had problems. You have probably already found a lively discussion on pros and cons of each over in the recon forum.  The diep is daunting but do-able, in my experience. One observation is that if you are in top shape (cardio and particularly muscle strength in the core), the surgery and recovery are easier. I remember saying 'bless my trainer' when I had to get out of the hospital bed for the first time, because I had such leg and back strength that I could move my body with minimum use of the ab muscles. During recovery, having trained my abs helped minimize those hunch/back ache issues, I think. I worked out for 11 weeks, 3x a week with a trainer, to get ready, and I'm very, very glad that I did.

Anyway, I do hope you can find a solution for your hand LE.  Kicks checks in often, so I'll bet you have an answer on the glove brand she uses pretty soon.

Carol

Binney4

Hi, Bet,

KT Medical offers gloves with built-in pockets and the pads to go in them (though they aren't foam, they're filled with buckwheat hulls, and some of our women have found them very helpful).
http://www.stepup-speakout.org/KTMedical.htm

Another option is to stick a Palmer Spot from Solaris right into your glove. They're here:
http://www.brightlifedirect.com/palmer-swell-spot-…
I use a palmer spot every night in my night garments, and during the day as needed. They last forever, so they're a great investment.

You might want to request a second "opinion" from another therapist. It might be that another pair of eyes and set of hands on the problem would really help. Have they taught you to wrap, and does wrapping reduce the palm? Are you still wrapping at night (at least your hand, if not the entire arm)? Are you adding extra foam over the palm when you wrap? And have you learned self-MLD? Did they show you how to move the fluid with your fingers from the top of the palm, between the fingers and over onto the back of the hand? That works really well for me when my palms flair. If they have a diagram of the lymph system in their office you might ask them to show you how the palm drains, because if you can visualize that it helps to be more effective at your self-MLD.

Be well!
Binney

Kicks

Bet - My day garments are Juzo.  All my garments are custom and pockets are definately available, not only for hands but other areas also.  Don't know if they're available in Off The Shelf garments.  

The back of hand pad is sort of a 'rounded triangle' - wider at knuckles and narrower towards wrist.   Don't know what it's made of but seems to be a relatively thin firm foam pad that is covered.  Last time I saw 'K.' we talked about maybe trying a pocket and pad in my elbow area (my worst LE area) when next garments are ordered (next month) - so will see rather we try or not next month.  I'm hoping we do to see if it helps in winter - my worst time.

BetNY22

Binney I have never wrapped, she mentioned it last time but I told her we would try the glove first.  Maybe she will wrap tonight...I am definitely going to order the Palmer Spot.  I don't use anything at night, my le tends to be oddly pretty good as soon as I get that big Tshirt on except of course this hand problem.  The glove that I got actually hurts, I don't know if I should just leave it and deal with it or am I doing more damage. Thanks for the info Kicks, I did mention a custom glove to her but she said I didn't need it.  I did try jamming foam I had in my office inside glove, it didn't help.  Omg Carol that's great, you sound like you are in incredible shape, I am definitely not in shape for a diep. Makes me wonder if exercise might really me....I'm grasping at straws. I did order that lebed tape, I'm gonna try it this weekend. 

Thanks to everyone for their input!

Kicks

Bet - When you say it 'hurts' what do you mean?  Where and how does it 'hurt'?   We are all built so different and often never realize issues until something like LE raises it's ugly head.  For me - it's my webbed fingers.  I've always had problems all my life ever finding gloves that fit but I always thought my fingers were short - they aren't, they're slightly/somewhat webbed.  So OTS gloves cut in betweeen fingers causing a lot of pain between fingers and making open sores (definately not something to do with an LE hand).

You weren't wrapped/taught to wrap before measurements for glove/sleeve?Are you seeing a Certified LymphEdema Therapist or someone else?

4sewwhat

Hi all!

I all of a sudden puffed up, mostly my hand.  My wrist actually measured smaller and above the elbow was smaller too.  I have been wrapped since Monday.  It sucks by the way!!  Changed teh bandages today and it was a lot better but from my knuckles the "fist" knuckle was still swollen.  No great way to get in between teh fingers.  My Therapist also said that she is hoping my TEs are the root of the problem.  I get my exchange on teh 30th.  She said because they are SO over filled and HARD that they could really be causing trouble.  I also finished rads just 4 weeks ago, so that might have something to do with it.

Of everything I have gone through this year, this is the most frustrating, expecially since I am right handed and can't do anything with these bandages.  I have a new Tribute night garment to try for the next couple days and go back again on Friday.

It does hurt when the boney parts of my hand get touched.  Wlmost feels bruised???  Also my arm feels like I have been carrying a bag of rocks for hours!

Good Luck everyone!!!

Kicks

Sorry, my tablet decided to be 'tupid.

One of the big things that helps me with handling my LE is exercise and warm weather.  Winters are brutal here and I have to go to the gym to get enough exercise to help keep under control but it isn't anywhere as good as my summer time 'stuff'.   I ride (our horses and my bicycle), garden, mow my yard and a couple of others to help out ones who need, boat, fly fish (tie my own flies and build my rods), anything that sounds like fun (the Crazy Horse Memorial Volks marche is challenging but great fun).  In other words - for me - the more 'active' exercise I get, the less issues with LE I have.

We are each so unique in all ways - there is no 'absolute' for anyone - no one size fits all.  Education/Knowledge are our friend and helps us to learn what is right for us not for someone else.  

The Odd One Out!  (lol)

Dyvgrl

Just curious if anyone here has had LVA or node transfer surgery? I have mild LE and was considering surgery as an option...

BetNY22

glad to be off the phone and on a regular computer.  Kicks, I can't explain it, almost like too much pressure, like I can't wait to get it off, a burning feeling maybe, Im terrible at describing stuff like that....Dyvgrl, I have done tons of reading on the node transfer surgery, it can cause lymphedema in other areas so it is really only saved for extreme cases.... Im still thinking about how much exercise you were able to do Carol, makes me wonder if thats how I can take control, I just can't wait for my busy season to be over and my life to go back to normal next week so that I may concentrate on trying to start some exercise. What kinds of exercise do you do?  So my le therapy went really good, she got most of the water out of my palm...hope I wake up with it still gone! 4sewwhat, my breast surgeon says that I will get some relief once this TE is removed and my le therapist says theres a good chance. I am going back to her on Friday and she is gonna wrap my hand for the first time, we shall see...fingers crossed.

carol57

betny22, exercise is very helpful to me, and muscle movement helps move lymph, so it can be a very good idea for those of us with LE.  I say 'can be' because we have to be cautious not to overload our lymphatic system with unaccustomed exercise or resistance that the body interprets as stress and releases extra lymph in response.  The research on exercise and LE suggests that we can exercise safely if we use a slow-and-steady approach, adding exertion and weight/resistance slowly and in small increments.  Here's a handout that explains the guidelines and addresses specific forms of exercise:

http://stepup-speakout.org/Handout%20doc%20for%20S...

And here's a related handout for trainers and exercise instructors, including yoga: 

http://stepup-speakout.org/Trainer%20doc%20for%20S... If you start an exercise program, give this to anyone who will help you along the way.

And also to think about is that research has definitely shown that if we are overweight going into surgery that will remove lymph nodes, we're at higher risk to get LE afterward.  I've never seen any study that shows that losing weight after a diagnosis of LE improves it, but I know several LE therapists and patients who are confident that weight loss improves LE.  And so if weight is a challenge (it is for me, always), exercise can help there, too.

Now, back to those honey-date-walnut swirly rolls I just made...this is such a hard time of year to even think about exercise and healthy living!

Carol

BetNY22

 Carol, thanks for the useful info. I am not really overweight, can stand to lose 15lbs though! I am going to read through all that info and really start the exercise up.I went to the surgeon today and left there in tears, I just can't make up my mind....she says absolutely diep flap that she can take some tissue if I do a diep and put it under the arm and there is a good chance it can help my lymphedema, has anyone ever heard of this....I've never read it anyplace. She offered to do lymph node transplant at the same time as diep but I told her no and that I was too afraid of getting le in my legs...I really don't think Im strong enough for a diep   Enjoy those honey rolls

carol57

Bet, several surgeons are now transplanting nodes when they do diep reconstructions.  Trouble is, there's not a lot of follow up time recorded yet, and the surgeons are not seeming to be doing any clinical trials that would help us all understand the short-, intermediate-, and long-term outcomes.  Anecdotal evidence seems to suggest that there is sometimes improvement in LE after that procedure. The safety argument is that the nodes in the flap tissue have been removed for many years now, on hundreds and perhaps thousands of patients, without triggering leg LE.  A stand-alone node transplant is a bit different, because they often harvest from the groin, and that's where the leg LE worry kicks in. The National Lymphedema Network has published a few articles that review surgical options for LE.  You have to be a member to download the articles, but in general I think their take on this is that it's 'promising.'  

If you search here in BCO, you can find posts from Helensamia and from Pinkheart, both of whom have had node transplant, and they are very, very generously sharing their experiences in posts here.  Helen also keeps a blog.

Twenty years from now, I'll bet we have some amazing surgical interventions, and I am in awe of the brave ones who are trying those solutions now. They're paving the way for our LE community.  My LE isn't bad enough to make me even whisper about a surgical answer, but for lots of people, that's a dream that cannot come true soon enough.

vlnrph

Love Carol's exercise documents!

I do gentle water aerobics 2-3 times a week and a Zumba Gold (low impact) class in between. The hydrostatic pressure on the affected limb really does seem to help. I apologize to the instructor beforehand that I do not follow all her movements, preferring to remain submerged as deeply as possible while still being able to breathe...

An unexpected bonus of using my new FlexiTouch pump is a reduction in finger volume. I did not expect so much improvement further down the arm, got it mainly for the truncal treatment.

DIEP is an excellent option for anyone who qualifies: you do need enough of a "muffin top" for the surgeon to work with. 

BetNY22

question, is bandaging only used at night? My le therapist said mine had to stay on for 24 hrs.

carol57

During the intensive phase of complete decongest ice therapy, 24 hours wrapped is quite common, I believe. As swelling comes under control, day sleeves and night wrapping is a common approach. 

Binney4

Bet, during the initial therapy (usually around four weeks or so--sometimes a bit longer depending on stage and progress), bandaging is 24/7.

When the swelling is as reduced as it can be you'll be measured for day garments. When those arrive and get checked out for proper fit most women only have to wrap at night (or they can order special night garments). Some women find they don't swell at night so they don't need to wrap at all except when they experience a flare-up (usually related to pressure changes, travel, overexertion, or sometimes diet). Which is why you want to learn to do it yourself (and then keep your wrapping skills sharp by practicing once a month, so in an emergency you're not struggling to re-learn it all).

Wrapping is a humbling experience. Or maybe the word is humiliating. Makes you feel clumsy and conspicuous, and getting your head around it takes some doing. But it doesn't last forever, and there's a real sense of pride in learning how to care for yourself and take your life back into your own hands. Hang in there!

Huge hugs,
Binney

bhd1

i find wrapping my hand at night takes care of the swelling.

BetNY22

thanks for all the great advice. I am happy to report that stuffing my glove with foam has helped keep the hand down. My LE therapist comes tonight, we had plans to bandage so I'm wondering if she will still do it when she sees the improvement. I went to a fitter today and she was so helpful and finally these gloves were put through my insurance. She gave me a hard disc to insert in my glove, not sure if I like it better than the foam.  

I hope everyone had a fabulous holiday!!!

carol57

Bet, that's wonderful and a great way to slide into the new year. I'm especially glad that you had a good experience with your fitter.  Fitters can be super helpful, and aside from the cost of the garments, at least we don't have to pay for their time. 

BetNY22

Thanks Carol, I'm so happy, the LE therapist thought I looked the best she's seen, she said I didn't need to bandage. Yay!!! Binney thanks for all the info on bandaging, much appreciated! I think it's so fabulous how everyone is so willing to help when I have a question. This site is amazing and you ladies deserve a medal for answering everyone's questions and being so patient. 

carol57

I'll bet every one of us can name a few women here who were patient with us when we needed the help. Binney is my hero for life for that reason!

Milo5

Hi, I have been battling LE for about 10 months, been through a LOT of therapy, gloves, wraps (two weeks for 24/7) and now wear a "flat knit" sleeve and glove during the day, and a JoviPac at night (sexy huh?)   The Jovi Pac definitely is the best defense and lately I havent even been wearing the sleeve the whole day, as long as I wear the Jovi Pac at night.   I started mostly in my hand but with therapy and my daily massage (everyone with LE needs to do the lymphedema massage AT LEAST once a day) "moved" my LE up from my hand to my forearm, which is now my problem area, hoping that it will keep moving and retrain my arm to drain on its own.    

Major thing I have been told.   Never fly or exercise without sleeves and or wrapping and or Jovi Pac.  I have been wearing my sleeve UNDER my Jovi Pac OR wrapping on top of the Jovi Pac for the  last few flights.   Also, my hand LE didnt start until I few with my sleeve on but no glove (I didnt know), so my hand swelled a lot. 

I just joined this thread and am happy for any and all info.  

I had DM 1/24/13, expanders, reconstruction 9/10/13, stage 2B/3A ILC.