How long in treatment?

cmhartley

Hi, I was just wondering what the average length of treatment has been for those of you who have gone through treatment?  I developed mild LE involving arm, hands and fingers the week after Thanksgiving.  I started treatment around Dec 10th.  My measurements have shown some minor improvement but it seems like 1 step forward and 2 back.  The biggest inconsistency has been the bandaging as I have had several different people wrapping me.  My biggest problem is hand and fingers.  It was looking better but the past several days it has looked worse...as bad if not worse than on presentation.  I haven't done anything diffrent if anything have been resting it more due to weather.  Is it me?  Is this normal?  Do I need a 2nd opinion?  I seem to remember my Mom who had swelling worse than me only went for a few weeks until she was released and did everything at home .   I guess I'm getting frudtrated and tired of spending 3-5 hrs a day in between treatment, driving and pumping.  I did find my therapist using the online resources suggested and she works for a large lymph group here in Houston so I think she knows what sg=he is doing.  I'm just not so sure about the bandaging as I've seen diffrences in way peop;e wrap.

Thanks for all of your help,

Cat                

LindaLou53

Cat does your LE therapist have you using a LE pump?  For someone just diagnosed with LE last November the introduction of a pump into your daily treatment is concerning to me.  Typically the initial "Intensive Phase"  of treatment involves your LE therapist wrapping your arm with short stretch bandages following MLD and skin care a minimum of 3x/week and preferably 5x/week.  The bandages are worn 24/7 until the next visit with the therapist when she removes the bandages and starts the process all over again.  This "Intensive Phase"  can go on for at least 2-3 weeks and up to 2 months or more as needed to get optimum results before you are fitted for a garment.

The introduction of a pump in the middle of the intensive phase does not make sense.  Having multiple different therapists wrap you is also not ideal but often the case in PT cinics where they do not have a full-time LE therapist.  Have you been taught how to wrap yourself?  If you are using a pump at home are you re-wrapping your bandages yourself?  Is your therapist using a pump in the office and then bandaging you instead of giving you MLD prior to the wrapping?

These are all questions I would need to know the answer to in order to offer any suggestions regarding whether you should look elsewhere for treatment.  Unfortunately some clinics have adopted what they perceive to be the more "efficient"  process of letting a pump do the work and then have various different staff wrap the patient before sending them home.  This may be time and cost effective for the clinic but is NOT in the best interest of the patient.

Please give us more details because I do not what to jump to unwarranted conclusions. What you have indicated does cause some concerns in my mind that you may not be getting the best LE treatment as it is outlined by the NLN standards.

kira66715

Cat, I completely agree with Linda--unfortunately, not all LE therapists or clinics are good clinicians.

First:

How to check their qualifications:

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

And feel free to ask them: the ideal is 135 hours of training, then supervision and recertification. LANA certification demonstrates a desire to excel as well.

Next:

Check out the NLN position papers on 1) Treatment of lymphedema and 2) Therapist qualifications

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

They are both on the page.

Like Linda, I'm very worried about the pump--there is a movement lately to cut costs and use a pump instead of therapist MLD or even skip MLD all together, and neither is a good idea. 

I don't want to scare you, but bad treatment can make things worse.

I struggle with my hand, and it takes a good therapist and a good fitter to keep it under control.

I'd recommend a second opinion, or at least checking out their qualifications, getting a hold of their plan of treatment and going over the NLN papers with them. 

It took me a few tries before I found my great LE therapist, and I've found suboptimal clinics. Binney had an experience where a "weekend wonder" made things worse for her.

Let us know how you're doing.

Kira

cmhartley

Hey ther and thanks to all of you for your replies.  I am so sorry for not responding sooner but it is so difficult to type and I have been dealing with more liver mets in addition to my bones and the possibility of starting chemo in addition to radiation for my femoral head which isd at high risk of fracture so I have a lot on my plate.

So, my treatment for LE at a local lymph clinic has consisted from day 1 of:

approx 45min (I think) of MLD

15 min on pump

wrapping

2 hrs on pump at home with bandages on

This has been going on consistently 5x a week until last week when I got frustrated and tired of going (it has been 8 weeks now) and so we reduced to 3x a week to give me a break.  I have not seen much progress with my hand especially until last week after I was wrapped a different way (I have had 6 different people wrap me 6 different ways).  Then, I got wrapped again by someone new and it wasn't tight enough Ithink and shazam here I am back to square one with my hand looking as bad if not worse than when I started. 

So, I think I'm going to start going for a second opinion but not sure anymore who to trust.  I will go back to website ya'll recommended and do a search.  The other questions I have are:  should I stop pumping?  are there anything else anyone can recommend in addition to bandaging that helps with hand lymphedema?  Anyone live in Houston that can recommend a place to go?  What about sodium restriction?  Am I not restricting enough and that is my problem?  What about doing normal daily routine?  Am Iusing it too much?  DoI just need to sit around and elevate it more?

Please any more advice would be appreciated.  I am so frustrated and overwhelmed especially with all the otherstuff on my plate.

Cat

Binney4

Cat, good grief, you are incredible!  'Bout time for some better treatment and results!

The pump (what kind is it, btw?) is NOT a good idea at this stage, so maybe just knock it off for now, both at home and at therapy. There is no substitute for MLD done by a trained therapist, followed by competent wrapping, a gentle exercise routine, and instruction in skin care.

There are good therapists in Houston, so do consider looking for another. Those at MD Anderson are usually on the ball -- unless that's where you're going now!

If you're stuck with the group you're already seeing, how about insisting on the one who wrapped your hand successfully? And then insist that she teach you how to do it yourself. It sounds like they're passing off the wrapping to less-well-trained aids, which is a tactic overworked therapists sometimes use. But it's no good unless they're closely supervised and are all on the same page. By this time you should have been taught to wrap yourself and do a self-mld, but it doesn't sound as if they've even hit on a successful wrapping technique to teach you.

When you are correctly wrapped, the way to use that time to improve your LE is to exercise with the wraps in place. That means both normal daily activities and specific simple exercises designed to move the lymph fluid out, rather than lie around with a pump. Since it doesn't sound like you've been given exercises, you might want to try the Lebed exercise DVD, which is very gentle and designed specifically for LE. It's here:
https://www.gohealthysteps.com/store/?productID=3

The opening section of that DVD is a sort of mini MLD just through gentle stretching, and the rest is divided into six sections (leg stretches, several arm stretch sections, balance, and dance) that you can use as you like. Any of them will help move fluid while you're wrapped. Sherry Lebed also has some exercise videos on Youtube if you'd like to see what's involved.

Prayers for all aspects of the battle you're waging, Cat, with gratitude for the strength we can see in your posts (even if you feel anything but strong). Tell us what we can do to help -- we're here for you,
Binney

Suzybelle

Ditto what everyone has been telling you.  I got diagnosed with LE in April 2010 and for the next 3 months I was going 2-3 times weekly and getting MLD and wrapped like a mummy on my arm.  It did wonders.  I have learned how to do MLD and wrapping myself (sigh - having to go back to nighttime wrapping.  I was trying to get by with just wearing them Sat. and Sunday during the day and that's not enough.  I hate stupid LE.) but there is no substitute for a good LE therapist.  I also have a pneumatic pump machine (Flexitouch) but I didn't get it until August, after 4 months of intensive therapy.

 Best of luck to you!