Recent Lymphedema Diagnosis

DanielleSmith

I was recently diagnosed with Lymphedema and I have been searching the internet for treatments, etc.  One of my friends recently suggested checking out a website called www.lymphcompression.com as well as a few other related sites that sell products such as pumps and sleeves made to alleviate the pressure associated with Lymphedema.  I was wondering if anyone on here has ever used a product like this and if it is worth it to buy one.  Also, if anyone knows where to get the best equipment for the cheapest price that would be extremely helpful!  Thanks in advanced!

ahew

Danielle:  There are others who know far more than I do about the various products and I am sure they will respond.  I do use a flexitouch machine and find it very helpful in controlling my LE.  However, it is expensive (about $7,000).  My understanding is that there are a number of other pumps out there that promise much but do more harm than good.  As I am sure that others will tell you you need to find a good LE therapist and get advice about your particular case.  With sometraining in how to do MLD (manual lymphatic drainage), how to wrap, and how to get appropriate compression garments, many do not need or benefit from pumps.

There is also valuable information on this site if you go to the Lymphdema forum and you will see several topics listed.  They are all informative as is the Stepup/SpeakOut document that you will find linked. 

 Good luck.

kira66715

Danielle, lymphedema is a steep learning curve

The first thing is to read the National Lymphedema Network position papers--especially the one on treatment:

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

Also, the stepupspeakout page on treatment:

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

I assume you have a qualified lymphedema therapist:

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

Although many of the women on these boards use pumps, the standard treatment is CDT: manual lymphatic drainage, bandaging, compression garments, exercise.

Pumps are used if that is not enough or there are other reasons to go to a pump. If medically necessary, insurance will cover most of the cost of a pump.

Kira

Ginger48

Danielle- I was also just diagnosed today with lymphodema.

Kira- thanks for the links!

lisa_loves_alice

Danielle,

If you haven't already, get a referral to a certified physical therapist like Kira suggests.  He can evaluate your situation and figure out the best course of action.

You don't want to just get equipment yourself, because getting the wrong thing could make it worse.

I don't know where you are at in your treatment?  My lymphedema started at the end of chemo, and bothered me a lot through radiation, but now (2-3 months from radiation) I am doing better and better with it.  I wore my compression garment (a sleeve) basically all the time through the end of active treatment and I think it really helped keep it under control.  My PT helped evaluate me and choose the right garment.

I also did weekly manual lymphatic drainage with the PT until the end of radiation.  It felt fantastic.  She also taught me things to do at home.

Good luck! 

Binney4

Danielle and Ginger, welcome! Really sorry you've joined our sorority of swell today, but awfully glad you found us. Please keep in touch as you move forward, and tell us how we can help.

Gentle hugs,
Binney

MiniMacsMom

I would definately agree with seeing a specialist.  My lymphodema specialist is a physical therapist who is LANA, so my insurance pays for the "physical therapy" with no problems.  They fitted me with a Medi (non-custom) compression sleeve since my swelling isn't still stage 1.  I because of that I can order the same glove/sleeve since I know my size.  She was also able to tell my the size I would need if I wanted a diva glove, even though they don't supply those.  Your therapist should definately be able to help you pick stuff out, even if its not stuff they carry like the pretty diva gloves   Good luck and yay for trying to get it under control

The hardest part was figuring out when I needed to use the sleeves vs the wrapping (which I am still learning to do) so make sure to ask under what circumstances your PT recommends what methods for controlling/reducing your LE. 

informated1

I have been dealing with lymphedema since Dec 2004 I know your concerns I do have a pump that I am not using anymore. This would be cause 2008 my arm was size football and my back and breast area truncual lymphedema. So I do manual drainage and see therapist to help and use compression garments and bras. I still get infections almost monthly. Before you buy or rent a pump make sure you have gone threw instructions with your therapist on how to use it. I live in Cal and would love for some women who has no insurance or who insurance doesn't pay for this pump to be able to ultilize it I also have the arm sleeve. 

Binney4

Informated, welcome!

I'm sorry you're dealing with both arm and truncal lymphedema. I am too, and it takes a lot of managing!

The chronic infections are really worrisome. Have you seen an Infectious Disease doctor who's familiar with lymphedema? Are you on long-term low-dose antibiotics?

You don't mention wrapping for your arm, so I wondered if you've learned to do that. It's such a great tool for self-management and keeping ourselves out of trouble! 

Glad you found us, and hope you find the same support and encouragement here that I've found. Lots of great ladies here!

Gentle hugs,
Binney

Momine

MiniMac, I am new to all this and although I have some minor swelling at the tp of the arm, not a DX. I see a PT pnce a week and wear a medisleeve daily, at the PT's recommendation. I had my last chemo today and by early evening I realized my fingers were slightly swollen. I took off my ring, and there is still a faint line many hours later. I have been elevating the arm. But what I don't know is if I should leave the medisleeve on overnight. Do you (or anyone else) know?

Binney4

Momine, do NOT wear the sleeve at night. Sleeping in a sleeve like that can actually constrict lymph flow in one area if it becomes twisted and you  aren't awake to notice.

In fact, you don't mention a that you're wearing a glove with the sleeve, so if you have swelling in your fingers and no glove, you should also NOT be wearing the sleeve during the day at all. The reason is, with the sleeve on and no hand compression, lymph fluid will be forced into your hand and make it worse. Here's a brief article explaining why hand protection is necessary when wearing a sleeve:
http://lymphedivas.com/lymphedema/gauntletandsleeve/

Not every PT has the specialized training needed to deal with lymphedema, so you might want to check out the training credentials that are needed. Information about that here:
http://www.stepup-speakout.org/Finding_a_Qualified_Lymphedema_Therapist.htm

Besides elevating your arm, be sure to drink plenty of water (helps dilute the lymph fluid) and stop at intervals and take several deep abdominal breaths (stimulates the largest lymph vessel in your body). With your arm elevated, slowly open and close your fist to help "pump" the fluid from your hand. Keep your arm elevated in bed tonight on pillows.

Hoping you get good help with this soon! Gentle hugs,
Binney

Momine

Thanks so much. The sleeve does have hand compression and my PT is very experienced with mastectomy patients, that is all she does. 

Thankfully the finger swelling was slight and as of this morning has resolved. I think it may partly have been caused by the steroids in connection with the chemo. I seem to be very sensitive to their tendency to make you retain water. 

I had a feeling it was not a good idea to sleep in the sleeve, thanks for explaining why. 

Binney4

Momine, yes, the chemo drugs do contribute to lymphedema flares and swelling. If you've learned some self-Manual Lymph Drainage massage you might want to do some extra node-clearing and massage daily until you're done with treatment. (Looking forward with you to that day -- hope it's soon!) If you haven't learned it, now's a good time. It's a great "tool" to have going forward.

Be well!
Binney

Momine

Thanks, I haven't learned yet, but am seeing my PT tomorrow, so your advice is coming just at the right time. So far, the lymphedema is mild and manageable, but I really would like it to stay that way, if at all possible.

Right now I will have a small break, all done with chemo, but have to do rads starting in January.  

susanwmcg

Hi All,

Just got home with a "mild" diagnosis. Shocked as all get out because only had one lymph node taken. I have a sleeve because flying to Maui on Sunday. I appreciate the links posted earlier and will go download them now.

Thanks,

Susan

Ginger48

My therapist called mine mild to moderate lymphedema. I had a flare up after my ooph last week and I have to be fitted for a sleeve either tomorrow or next week. I am going for manual therapy 2x a week and she showed me some things to do at home in between. I also only had sentinel node removed. This thread is very helpful.