frustrated, confused and need to vent

AnnetteS

argh. I am so frustrated. I have been going to PT for range of motion and LE education.  My PT said I had lymphedema although I didn't really notice anything.  Then my arm flared up (power of suggestion?).  I see the PT about two times a week and she does some gentle massages(but harder than the one I am supposed to do myself with just light movements)

Anyway, my forearm pits pretty deeply when I press my finger in it.  So Tuesday my PT was telling me about one of her le patients and how LE is treated every day for an hour and a half for two weeks. I asked her, well, why am I only coming twice a week for 45 minutes?  She said I had borederline LE.  (My arm and now my hand hurt and are visibly swollen.  People can see the pitting from across a room).  If I am only borderline....I really feel for you ladies that have regular LE. Okay, I feel for you anyway :-)

I then went to finally get my compression garments.  The lady at the wig shop that my insurance company sent me to said I was only approved for a sleeve.  They did not really fit me, but tried on a couple and they asked which was more comfortable.  I finally picked one and I put it on and an hour later my hand ballooned.  I took off the sleeve and didn't wear it. Two days later(today), I finally get my gauntlet and now my fingers are swelling.  It hurt to cut my burrito with a steak knife....

After looking through this site tonight, I went to find a qualified LE therapist and wouldn't you know that my hospital has three LE therapist.  Two are LANA certified and I am seeing the other one......

I am only approved for two more PT sessions anyway.  Although my PT is VERY nice, if I get authorization for more sessions, I will definately go to one of the LANA certified people. 

Thanks for letting me vent.  If any one has any suggestions, I'd love to hear them.

Oh yeah, I asked my PT what I do next week when my sessions are over.  She said that I might be able to come back after my exchange  surgery which is May 12.

sushanna1

Vent away.  We understand.  

If you haven't already been there, visit http://www.stepup-speakout.org   It was set up by some of the wonderful women who frequent the lymphedema threads.  

Good luck.

Sue

o2bhealthy

Ugh! A Good therapist is so hard to find and you need a good therapist,  Fire your current one and get a referral for a LE therapist not PT.  Good Luck!

AnnetteS

Thanks Sushanna, That website is where I got the infomation about the LANA certified LE therapists. 

toomuch

Annette - I'm sorry that your having so much trouble now. Much of dealing with LE is trial and error but If the "fitter" did not measure your arm and hand prior to selling you the sleeve and gauntlet, it is possible that they are not the correct size. Wearing the incorrect size can cause swelling. If they were properly fitted and your fingers are swelling with the gauntlet, you should wear a glove. Doesn't it seem endless?

Maybe you can save your last 2 sessions until you can get an appointment with the LANA certified therapist. I was on a waiting list to see a LANA certified therapist and essentially wasted 18 visits with an LE therapist who treated me with a pump and improper MLD. It was such a relief for me to see someone who really knew about LE, I wished I had just waited!

I'm hoping that you have improvement in your swelling!

kira66715

Annette, you were sent for shoulder ROM and LE information--and maybe your shoulder is better, but the LE information and care you've gotten is IMO, substandard at best.

With a new diagnosis, you can possibly qualify for a new trial of therapy.

It's SO hard to make a fuss, but if you have the energy, could you bring up to the head of the department that you have progressed, under this woman's care to visible, pitting swelling--clear stage 1 LE and now are in need of the full course of treatment: CDT--MLD, being taught home MLD, bandaging and being taught bandaging, and a sleeve and GLOVE--which are properly fitted.

I'm going to put in two links--one to the NLN treatment guidelines, and one to proper fitting of compression garments:

http://www.lymphnet.org/lymphedemaFAQs/positionPapers.htm

http://www.stepup-speakout.org/proper_fitting_of_lymphedema_garments.htm

There is just no excuse to not provide proper care, to be responsible for ensuring proper compression garments--and if you weren't approved for a glove, it's because one wasn't written in the prescription--just get a new prescription, and to fall back on insurance as an excuse for providing inadequate care.

I've had my share of bad PT experiences, and I still think it all comes back to the fact that they operate essentially unsupervised (most physicians feel their job is done with writting the referral) and they are really not set up to handle a chronic diseae on their own.

I'm steamed here--and I know how hard it is to fight for care when you're a patient, but I sure hope you spell out the sequence of events to this woman, but more importantly to her supervisor and your phyisician.

You deserve far better. So often we're on our own here to manage this and hold the PT's accountable. It's just not fair.

If you have a measuring tape, see if you can document the differences in the arm circumference, and please don't wear poorly fitting compression--it's worse than no compression.

And let us know how we can help.

Kira

Suzybelle

Your experience ticks me off so much.  It's bad enough for us to get LE, but then we have to deal with all of the morons and yahoos who only make us swell more and have more pain.  Your therapist is an idiot. 

I have never been the squeaky wheel (okay, maybe never is a bit of a stretch) but I have really learned how to kick up some dust since my bc/le diagnoses.  I would call my dr. and raise some hell until they get you in to see the le therapist YOU choose.  And kira is so right - the powers that be need to know about this.  How many of us has that idiot 'treated' and sent on our way? 

And don't feel bad about kicking up the dust - it's the only way you're going to get the care you deserve, and all of the women coming after you deserve good care, too.

Hang in there and raise some hell.  It's the only way to get stuff done sometimes, and if you're on hormone inhibitors, you will actually enjoy it. 

Binney4

Annette, you're not one bit confused. You've got it figured out perfectly: both the therapist and the fitter have been completely irresponsible. Fire them both.

If you start over with one of the LANA therapists, make sure your first session with them includes setting goals for treatment together, and that those goals are in line with the NLN "Treatment" Position Paper protocol. Sadly, even adequate training doesn't ensure that a therapist will do the job she was trained to do -- as Kira points out, they aren't well supervised, and they can get sloppy. (Well, okay, they can be human.)

All of us here share your frustration, and I wish we were all there to raise a ruckus with you! Short of that, I'll join the others in cheering you on to get the treatment your condition demands, even if it means educating everybody in sight. We've got your back!

Gentle hugs,
Binney

AnnetteS

Thanks everyone.  My next appointment does happen to be with the certified LE guy.  I saw him one time (for range of motion and chording) and felt awesome when I left.  That was before I had the swelling. I am hoping he has some words of wisdom for me and I can get approval to see him in the future.

My swollen arm does not hurt very much, but my hand is really sore. When I wear the sleeve and the guantlet my fingers swell.  However, if I wear just the gauntlet, my hand feels better and my fingers are not swelling.  Of course, my arm stays swollen but what's a girl to do.  I've never seen anyone wear a gauntlet without a sleeve.  Is that ever done? Is there a reason NOT to wear a gauntlet without a sleeve?