Topic: My visit with the therapist

Hi, swmmom,

I'm so sorry for all this worry and confusion. It sure is hard to get the straight story on lymphedema (LE). You must be so frustrated!

I have to say that LE therapy is very time-intensive, and a lot of LE therapists are overwhelmed with patients and really have to scramble to find the time to do them all justice. So to some extent it then falls to us to make sure that the treatment we receive is right for our needs. So you're definitely right-on in raising all these questions.

From what you've described here, it may be all is well. It would have been better if she'd waited until she'd done a clinical exam to pronounce a diagnosis, but then it may be she works with your doctor a lot and knows she can trust his diagnosis (that is not the case with every doctor!) And it would have been a whole lot better if she'd talk to you about the measurements she took without your having to ask, but that may be more of a personality issue than one of proper technique.

As for wrapping without massage, that's maybe a bit odd, but if she had not scheduled sufficient time for massage today (because the first appointment is usually just an evaluation), then the wrapping alone was better than nothing. In fact, wrapping is an extremely effective treatment, and it will also give both you and her some idea of how your LE is likely to respond, and what adjustments may need to be made as treatment progresses.

As for wrapping from fingers to shoulder, that's standard, especially if she measured and found problems around your elbow. (If the only measurable swelling was above your elbow, you could reasonably expect her not to wrap your fingers, but they do try to wrap BELOW where your problem areas are to prevent developing new swelling in those areas.) As you noted, the compression garments are more comfortable than the wrapping, and more functional for sure. But the two don't have the same effect. Wrapping can actually reduce swelling, but the compression sleeve and glove will usually only help maintain the size of your arm, not reduce it. So the wrapping is therapeutic - it solves the problem. But the garments are for maintenance, and she won't fit you for them until the therapy is over.

When I went to therapy I knew I had swelling in my chest, but didn't know my arm was also involved. The measuring is done because it's impossible to gauge this by eyes alone. The difference between your arms is enough to treat, and the early treatment will definitely make a difference in how easy it is to treat and how successful the therapy will be. It's sort of like pregnancy - there's no such thing as being "a little" pregnant. And there's no such thing as "a little" LE either. Before any swelling at all can be measured, there can be as much as 30% more lymph fluid stagnating in your tissues than is normal. So LE is present even BEFORE it's measurable. (It used to be that insurance wouldn't pay for treatment until a large amount of swelling could be measured, but thankfully that standard no longer exists, and you can receive treatment as soon as possible, making your outcome better.)

Foam for your breast: first let me say that at your next visit, when she does the massage, she will start with your neck and will massage your chest/breast before massaging your arm. Since she's said she'll teach you this, that's great. If you can, bring someone with you next time to take notes, as it's a steep learning curve and may seem confusing at first. The foam is used to break up the fibrosis (hardness) and it's quite effective. If she wrapped your chest/breast like she does your arm, you wouldn't be able to breathe. So instead, they use chipped foam pieces in a cloth covering, or textured sheet foam, to cover the areas that need softening. Your muscle movements as you go about your daily activities help to move the lymph, because the foam adds pressure from the outside. I wouldn't say it's uncomfortable, exactly, but it's bulky and pesty. And frankly it always makes me sad, because it's a constant reminder of everything I'd rather forget. But on the other hand, it works, and eventually you can move on to finding a bra that works to control the LE for you (along with the massage you're going to learn).

Since you're just beginning the wrapping, what she said about doing whatever you can with your arm as long as it isn't painful is good advice. As you get used to it you'll want some gentle exercises to do while wrapped, as that helps move fluid. So ask her next time for specifics. Or get the book by Burt and White called "Lymphedema: A Breast Cancer Patient's Guide to Prevention and Healing," which has a section on exercises. And is a good reference book to have at any rate. (And by the way, be sure to learn to do the wrapping yourself too -- there will be times when your LE acts up and you'll want to know how to bring it back under control yourself.)

All that to say, she sounds like she's doing okay. But I want to add this: our relationship with our therapists is long-term, and we do better when it's someone we trust and respect and don't dread talking to or seeing. That's a really individual thing. So if you continue to have not-good feelings about her, it'd be fine to look around for a second opinion. We hire these people, not the other way around.

Swmmom, I just gotta say you're at a really hard point right now. You're not alone in feeling overwhelmed. Or angry. Or super sad. It's no easy matter to get through all the bc garbage only to find yourself faced with this demanding, distressing condition. But at least with the bc we've all had to learn how to take this one day at a time, and LE is the same. Onward! It gets better, honest!

Big (((((hugs!))))) and prayers,

Binney

Oh, a couple of P.S.'s:

1. If you haven't already read them, you might be interested in the Position Papers on LE Therapy and on Therapist Training at the National Lymphedema Network: www.lymphnet.org

2. If your screen name indicates a love for swimming, you'll be happy to know that as soon as you're past the wrapping stage, swimming is one of the best exercises there is for LE.

Good morning, swmmom,

I hope some of the others will come along soon and share their experiences with the therapy and wrapping. Definitely an emotional time.

It is normal (and good news!) for the wrapping to be loose now, because the arm is reducing. I know it wasn't real big before, but apparently there was fluid there, and the wrapping has helped. Good for you for making it through the night! I hope you also got some sleep, though for me it took awhile to get used to actually sleeping in my Michelin-man costume -- I did a lot of fancy flopping around in bed instead.

I take it your next appointment is not until after the weekend? In that case, when you're ready to take off the bandages and shower, don't try to re-wrap yourself until you've been taught a bit more. It's too easy to wrap too tight or just not get the pressure graduated enough, and that can cause you more trouble than going without. My first weekend she told me to just leave it off, and the following weekend it was time for me to try it myself. (If you're like me, better allow plenty of time for that, as I had to pick up and re-roll all the bandages I heaved around the room in frustration!) It gets easier, so hang in!

When the swelling comes down you "graduate" to a compression sleeve and glove for daytime use, but most of us need to wrap at night to keep control. There's an alternative to that. It's a special night sleeve that's two fabric layers with foam quilted in between. It's bulky but comfortable, and a lot easier to put on and take off than the bandages. But that's a problem for another day. For now, I'm with you in hoping the chemistry is better with Therapist #2. (In Germany, where they're waaaaay ahead of us in LE care, they try to have different therapists work on you throughout the therapy time, because each one does things a bit differently, and each little bit helps.)

Your daughter sounds like fun! Hope the price of learning to swim is not too steep! How about a water aerobics class at the local pool? Might be less pricey!

swmmom, you'll be fit again. Takes time but it's definitely doable, and the fact that you were fit before treatment has already made a difference to your healing and will continue to stand you in good stead. And as a bonus, as you lose that extra weight the LE will become easier to control. Use your good arm to pat yourself on the back for your bright spirit and determination.

It'll be good! Let us know how #2 goes,

Binney
 

Binney,

Thanks for the pep talk. It doesn't take much to make me cry and I got all teary-eyed reading your nice response.   My next apt is not until June 2nd. They tried but couldn't get me in any sooner.   When I told the therapist about my hesitance to wrap the arm by myself, she assured me that there was nothing to it and my 12 year old could help me.  I am glad you told me how important it is to wrap it correctly.  I am planning on calling the therapist today to see if I could come in on Monday so that she can wrap my arm again and teach me how to do it.

I totally agree with you, a water aerobics class would be a more economical way to go than the "private" swim lessons!  She also said that there are no cost negotiations. She is a little stinker!

Hi, swmmom,

Oof! I'm glad she'll see you tomorrow, and I think the wrapping without the massage is better than nothing. You've been really patient! See if she can teach you more about wrapping it yourself, and ask her what she wants you to do next time it loosens and starts to fall apart. Will they set up a more regular schedule (several days a week) after your next scheduled visit? If not, you might want to see what other resources you might have nearby. At the moment, though, they're sounding reasonable about working to keep you safe and progressing until they can schedule things better. There are not enough LE therapists in this country, so waits such as yours are not unusual.

Cardio is fine, but maybe take it a bit easier until you have things under better control. How about a few 15-minute stints on the treadmill at intervals throughout the day, so you can gauge how it's affecting you arm before proceeding? And I'd sure stay away from the weight lifting for now. Any exercise is more beneficial if the bandages are tighter rather than unravelling. Don't worry, you'll get back to it -- gradually! -- as you get regular wrapping done and start massaging to open more lymph pathways. Tonight, keep your arm elevated as much as you can -- maybe a pillow arrangement in bed for the night.

This is all quite messy, yes? It gets better!

Hugs, prayers,

Binney 

Hi, Swimangel,

Good to hear how well you're doing with therapy! (You might talk to your therapist about wearing a sleeve and glove for exercising or strenuous activity too -- like moving the couch or packing up a box of books or shoveling the snow...)

Here are some web sites for the quilted night garments:

www.jovipak.com

www.solaris-tribute.com

http://www.telesto-medtech.com

These kinds of garments are often very helpful (I use them for chest and both arms), and they're actually fairly comfortable. They're custom made for any part of you that you need it for. Usually they're covered by insurance at the same rate as day garments -- but make sure, because they're pricey. There are some therapists who can help patients with them, and some therapists who have never used them. (Which as far as I'm concerned is one reason why I love these boards - no other way to get some information!)

For day use, bygrace uses abdominal garments made for plastic surgery by a Brazilian company called Annette, which I think you can find here:

http://www.laurensilva.com/annette_international_s/1011.htm

Hope some of that helps!

Binney 

Swimangel, I read your other post this morning too, and can taste your panic and frustration. Prayers for quick and clear answers and event-free resolution. So glad the wound healing is proceeding, and looking forward with you to a day in the very near future when you can hit the pool again with confidence and joy.

We'll all be with you at your PCP appointment tomorrow, so be sure they put you in the BIG exam room!

Hugs, prayers,

Binney 

Swimangel and Binney, after thinking this thoroughly, I decided to cancel my 9 am appointment this morning. She was going to wrap the arm without a massage like she did at my last appointment. I didn't want to go through that again since my arm started feeling a lot worst than it did before.  I see a little too many red flags with this therapist,  wrapping before massaging(now that I think of it, I am not even sure if the arm was wrapped correctly), no physical exam, no exercise suggestions, couldn't see me again before June, and then it was only going to be once a week for 4 sessions with her assistant.  Make long story short,  I requested a new referral from my PCM and made an appointment with a LE certified P.T near where I live, only 20 minutes away. They booked me for a 2 hour slot.  I will let you know how my new appointment goes. It is on May 28th.

Thanks for all of your responses and advice. I truly appreciate it.

Good, swmmom! A two-hour appointment sounds like a promising start. In the meantime, keep it elevated and stay hydrated and all that other stuff we've been batting around here. We'll really be looking forward to hearing how it goes on the 28th!

Sharon, I sent you a PM, and also sending big but very gentle LE hugs, and prayers for a good experience. Not sure why your insurance won't cover LE treatment? If it covers other kinds of PT or OT it should cover this, as it's mandated by the Acts that cover bc treatment. 

Be well!

Binney 

Mornin', Sharon!

Well, nuts! Hopefully Jinky will be along soon and can speak to the issues of the Canadian health system -- it remains mysterious to me! She's made a study of it due to the fact that she's been putting together petitions to change coverage in NS.

In the meantime here are a couple of possible sources of information if you're not already connected with them:

Lymphovenous Association of Ontario, http://www.lymphontario.org/

LymphedemaPeople Cananda resource page, http://www.lymphedemapeople.com/thesite/lymphedema_organizations_canada.htm 

Hope some of that helps with finding funding.

(Then again, maybe you'll be out there with Jinky pounding the pavement for signatures for a petition!)

Let us know how the doctor visit goes!

Binney 

Binny, jinky, thankyou both so much.  My rad onch will do the referral for me which should take about a week or so.  I will call the end of the week to make sure I've not been lost in the shuffle.  Thankyou so much for the links.  I did not know that sleeves and gloves were covered, prosthesis are covered by provincial health ins. but only about a third of the cost.  And yet they will cover recon........sheesh!  I mean of course they should cover recon but also the whole cost of the prosthesis I'd think.  On the other hand I don't think OHIP covers nipples.  But I digress.  I will check out the sites and thank you again so much.  My rad. onch. did say that it didn't look too bad.  Whatever that means. :P  Hugs.

Patti, there are several things you can do to prevent LE, and no not everyone gets it after surgery but we are at a hight risk. Binney will post the sites that give specific info about preventing LE if she sees your request here.

I know off hand that you don't want any blood pressure/blood draws/iv in the side where your surgery was performed. For those of us with bilateral, they must do this on our legs/feet.

watch any cuts/scrapes/bug bites/sunburns on the affected side. If you have a cut/scrape etc. treat it like any wound, wash the affected area and use a clean dressing with antibacterial ointment.

Use rubber gloves to wash dishes to keep hands out of the hot water.

keep hands and arms moisturized

drink plenty of water

That is all I can think of now but Binney should be on soon to answer your questions better.

Sheila

edited to add: I found the site Binney always recommends http://www.lymphnet.org/ they have position papers that describe in detail what to do to protect yourself from lymphedema.

Hi, Sharon,

That doesn't seem to make sense, does it? If you're swelling, you usually think of trying to limit fluid intake. But lymph fluid is not just water, it's partly protein molecules, which are comparatively large. If they're not well diluted they tend to get sluggish and "stuck." So keeping your body extra-well hydrated helps the lymph fluid flow.

One problem that we lymphers sometimes have is a misdiagnosis, when a doctor doesn't realize it's lymphedema that's causing the swelling. They'll prescribe a diuretic, which drains out the smaller, watery molecules and leaves the protein molecules behind. Actually makes the LE worse and makes the tissues hard. Who knew?!

If you're at risk for lymphedema but don't have it yet, staying well-hydrated helps keep your compromised lymph system healthy. Especially important in summer and on airplanes, where the cabin air is dry. 

LE doesn't make any sense!

Patti, hello! lvtwoqlt really covered it. The only thing I could add would be to consider being fitted for a compression sleeve and glove to use when you're exercising, traveling, or doing any physical work like lifting or shoveling.

Be well!

Binney

AHHHH, Binney, I'm on a diuretic and an ace inhibitor for my blood pressure.  Interestingly I started the bp meds in Jan. and it was about two months ago I started noticing changes in my arm.  Funny how things make sense the more one finds out.  Well, I got a referrel to the Dr. who specializes in LE for next week so I'll take it from there.  Until then I'll be upping the H2O.  For now, I hate the thought of taking the diuretic :(  It would be neat to go to one Dr. who knows EVERYTHING!  Thank goodness for all the info on these boards.  Thanks to all.

Sharon. 

so what happens when we have LE and are retaining fluid in legs...and feel short of breath.  They gave me fluid pills, but now I don't know what to do.

Arm is better...and I got a sleeve...they said to wear all the time and wrap at night.  Binney I think I am with you will wear it when exercising and using the arm.  The le is not that bad and I can't see wearing it all the time

What about the arm wrapping at night...should I do it every night?

Any help appreciated...went for the first rad yesterday...#2 today at 300

tee hee! Now I know why there are so many double and triple posts lately -- it's the new "preview" feature!