Lymphedema Newbie!

I am a relative newbie too, so I don't know a lot, but OT has helped me tremendously (in my third full week now), and the massage has made a big difference. I will say that wrapping is awful at first, but stay with it--now I love it. It feels so good, but the first few days I couldn't stand it, and I threw several tantrums (and all my wrapping LOL).

The OT treatments themselves haven't been painful at all; they actually feel really good to me. My OT uses a machine that produces light electrical stimulation with massage (called a Hivamat), and this may sound strange, but I love it. It has made a big difference in my swelling too. I can also tell a difference with the massage I do at home, and as much as I thought I would  never say this, the wrapping has helped a lot. I am just about to the point where I can be fitted for my sleeves and my glove, and I am looking forward to that--the wrapping is pretty bulky.

I don't have lymphedema yet, but I have read where some ladies wear some kind of sleeve apparatus when they are flying.

My RO knew I was flying across the country this week (2weeks post rads) but never mentioned the need for a sleeve.

Should I wrap something around my arm (maybe a tensor bandage)? 

I won't have time to buy a sleeve before we fly.

Thank you for any help,

andrea do not wrap yourself without proper instruction. special non stretch bandages are used. do not use a regular ace bandage under any circumstance. you could cause morre damage than good.

Definitely find someone (preferably a certified LE therapist) to teach you how to wrap. I had three nodes removed on the right side, none on the left, and the left is where I've developed LE. Go figure!

I only had 2 nodes removed, so maybe that is why no one suggested it. I told the nurse, techs and doctors I was flying and no one said anything.

ANDREA
That's not why!  UNfortunately lots of the ' medical folks' don;'t warn us about LE.  I had only SNB,. 2 nodes and NO RADS.  
Read Binney's post carefully and follow her directions and try not to worry.  She's our resident expert here.

Hope you have a wonderful trip!

If planning to travel  more, you might want to get fitted and get 1 inexpensive sleeve with Hand protection ( A MUST)

thank you ladies for the great advice. I seem to be ok. My flights were each 5 1/2 hours and unfortunately there was much turbulence so the drink service was  not as frequent.

I have another long flight planned next month. Who do I ask about getting a sleeve? And how ling does it take to get one? Are they usually covered by insurance?

Thank you Binney for the great tips!!

Andrea, thanks for letting us know how it went--really glad it was a success! Next time, as you board, tell the flight attendant that you have a medical condition that requires that you stay really well hydrated, and ask if she might give you water bottles to take to your seat. Works for me, and then I don't have to worry about the beverage cart being functional.

Or, once you're through security, buy a few bottles of water from the concessions.

Or, take your own empty bottles through security and fill them at a drinking fountain on the concourse.

The real trouble with the threat of LE is that you have to think about it all the time.

Bon voyage!
Binney

Andrea, any doctor on your team is fine. You can even call them without going in and see if they're willing to write the prescription from just the call. Not every doctor will write it, since some have little knowledge of LE (that was a polite understatement…)

Keep us posted!
Binney

Hello Ladies. Not new to BCO but new to the LE forums. First found mild truncal about a year or so ago. Got that treated effectively and thought I'd kissed it all goodbye. Then late last year woke up one morning to a swollen wrist and inner arm just above it. Got great treatment and advice from the LE therapist at my local cancer center. Went through a full course of txt with her and have now been doing all my stretches, weight excercises and MLD religiously on a daily basis. As I've found if I don't keep up with it I get achey and tingly in my arm and hand. The swelling has for sure subsided. Per my therapists instructions I've been slowly weaning off the sleeve/gauntlet so I can see if I can get by without wearing it all day every day. Has been seeming ok - but this morning my arm was noticeably achier and felt hot. Still don't see any swelling though thankfully. What I'm noticing more though is increased tenderness in my ribcage, implant area and shoulder blade on my affected/radiated side. I don't feel or see any signs of swelling but am starting to think I must have some fluid buildup. Anyone have good recommendations for compression garments to cover that part of the body? Awhile back I had gone to a local shop that is supposed to specialize in this stuff but the only items they had were intended to incorporate a prosthesis. There was nothing there for a woman with implants. So I left feeling kind of dejected... Would appreciate any suggestions you all have. Thanks for being here.

LOTS of choices, thankfully! Check out the bottom of this page for links to suggestions for binders, camis, shapewear and bras.

http://www.stepup-speakout.org/breast_chest_trunck...

Many women here use compression sports shirts such as Underarmour. For nighttime wear you can also order special night vests such as those made by Solaris or JoviPak--they're bulky but usually very effective at reducing swelling, pain and infection risk.

Speaking of infection, Ramols, you're going to want to be VERY WATCHFUL about that achiness and warmth. We're all at high risk for cellulitis, and IT IS AN EMERGENCY, because it can spread very rapidly and become systemic. Might be best to get your doctor to check it out today before the weekend. Here's more information:

http://www.stepup-speakout.org/Emergencies_and_Med...

Be well!
Binney

Thanks all for the info. Binney - yes, my LE therapist drilled the cellulitis fear into me. No signs of fever and my arm was more heavy than hot. Used my night sleeve (absolutely LOVE my Solaris nightsleeve) the past few nights consistently and feel like that helped with whatever was going on in my arm. Also called my LE therapist about the shoulder blade and ribcage area and she referred me to an OT/LE specialist who she raved about. Set for my evaluation with her on Thursday. So hopefully i'll get this sorted out soon. Thanks again all. Feel good!

Aw, Mimi, I'm so sorry for this new frustration! The good news is that you're on top of it so quickly, and that will make it easier to get under control and to deal with on-going. 

Here's information about lymphedema treatment:
http://www.stepup-speakout.org/treatments_for_lymp...

Be sure the therapist you see is fully trained in lymphedema management. Here are some questions to ask:
http://www.stepup-speakout.org/Finding_a_Qualified...

Learning to live with lymphedema can be a steep learning curve, but we're all here to cheer you on. Please tell us how we can help, and keep us posted on your progress!

Gentle hugs,
Binney