Lymphodema anyone??

[nobodyknows71]

I've just been diagnosed with Lymphodema after nearly eighteen months of telling my doctors things aren't right. I've been fobbed off with ' you're still recovering from your surgery , it takes time for things to settle down'.
The thought of having to wear a compression sleeve and bra for the rest of my days is not something I'm coming to terms with easily.

So just wondering if anyone else has this? How do you deal with it?

 

[JacsMom]

Hi Nobody....I've had lymphedema in my left arm since I had my breast cancer surgery. That occurred 20 years ago. I'm lucky that it's mild. I tried wearing a compression sleeve but all that did was push the fluid into my hand. At that point, I had a custom one made for my hand. To be honest, I don't think they really accomplished much though. I've come to terms that I'm always going to have some swelling in my left arm and hand. No one notices unless I point it out, but it does bother me that nothing can really be done to get rid of it. I've had Vodder massage, but I have no insurance for that and they wanted to do it twice a week. It was expensive and there was no way I could afford it. As you know, you have to be very careful with the arm. No blood pressure taken on it, no needles etc. I also get blood poisoning in it every few years. Usually they can't even see where the bacteria got in. Could be from a simple tiny scratch. That means I have to get to hospital for an IV. I guess I view it more as an inconvenience than anything after this long. I try to be careful but I still have to live......at least I survived the cancer. This probably isn't going to be much help for you, but at least you're not alone. (I don't wear the sleeve anymore)

 

[nobodyknows71]

Hey @JacsMom thanks for taking the time to reply. It's my first day of wearing the sleeve. I guess it's ok. They did say that the fluid might go to my hand though. So do you not use any compression garments now?
To be honest in my arm it's pretty mild, I didn't even notice it myself. It's was only when she did a scan that it was confirmed. But I knew it was in my breast. It's made my skin go very firm to the touch and it's noticeably larger than the other one (at I think it's noticeable)
I've not heard of Vodder massage, I'm going to look it up.
It's good to know I'm not alone. Thanks again

 

[PaladinofKnights]

Yo I'm not really experienced bout his stuff man but ya got my support anyway man get thru it. Peace.

 

[JacsMom]

Hey @JacsMom thanks for taking the time to reply. It's my first day of wearing the sleeve. I guess it's ok. They did say that the fluid might go to my hand though. So do you not use any compression garments now?
To be honest in my arm it's pretty mild, I didn't even notice it myself. It's was only when she did a scan that it was confirmed. But I knew it was in my breast. It's made my skin go very firm to the touch and it's noticeably larger than the other one (at I think it's noticeable)
I've not heard of Vodder massage, I'm going to look it up.
It's good to know I'm not alone. Thanks again

Yeah I don't wear the sleeve. I found it really didn't do anything and wearing the one for my hand with it was a royal pain in the butt. If I wanted to clean or anything, I had to constantly take it off or wear a rubber glove over it, which was big and bulky, and somehow it always seemed to get wet anyway. I was fortunate I didn't have the same problem you have with your breast. I never noticed any fluid buildup there. The blood poisoning is a huge pain, but it doesn't happen very often, thank goodness. But you might want to watch for it. It's not the typical thing you see. I always thought you'd have a red line going up your arm. Not so. I get patches that look like a rash and they are warm to the touch. You wait forever in our ERs here and of course I can't leave so I'm there for hours to get an IV. But it could be worse. I've not had the Vodder massage for many years, so maybe things have improved. I probably should ask my doctor if there is anything new in the field, too.

http://shenshenhealth.com/linkvodder.htm

 

[Sunspots]

I have lymphoedema also in my left arm and breast. It's not too bad luckily. I also didn't get on with the compression sleeve so only wear it when necessary (on flights, if I'm doing a lot of manual work etc).
Not sure where you're from @nobodyknows71 but if from the UK it's worth asking for a referral to a lymphodema clinic. I go regularly to our local one and have some manual lymphatic drainage (the nurse is Vodder trained) and it really helps.

 

[nobodyknows71]

I have lymphoedema also in my left arm and breast. It's not too bad luckily. I also didn't get on with the compression sleeve so only wear it when necessary (on flights, if I'm doing a lot of manual work etc).
Not sure where you're from @nobodyknows71 but if from the UK it's worth asking for a referral to a lymphodema clinic. I go regularly to our local one and have some manual lymphatic drainage (the nurse is Vodder trained) and it really helps.

Hi there, thanks for replying. I am from the U.K. and had my first appointment with the Lymphodema clinic a couple of weeks ago, and a follow up in a few weeks time. She did mention manual drainage, I think she's going to tell me more when I go back. If she doesn't I'll be sure to bring it up.
I'm not hating the compression sleeve as much as I thought I would, so I'm pretty much wearing whilst at work during the week, but not so much on the weekends.
Thanks agin for taking the time to reply. It's always good to know you're not alone

 

[JacsMom]

I quite agree! Always good to know you're not alone and hey we are survivors!!!!