Leaky Leg and other stuff....

leg pain, leg bleeding, Farrow Wraps, Compression Stockings, cold feet, Reid Sleeve, Restless Leg Syndrome, Leg Cramps, Compression Pumps, Shoes, lower limb lymphedema, secondary leg lymphedema, leg wrapping, Cold Feet, Compression socks, nerve pain, self leg massage, right leg lymphedema

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Leaky Leg and other stuff....

Postby furrymonkey » Wed Apr 23, 2008 12:24 pm

Hi there :)

After treatment for cancer (chemotherapy and radiotherapy) I've now got secondary leg Lymphoedema. It took me almost a year to get referred and diagnosed which as you all know meant more problems the longer it takes. To say I was surprised this is an incurable condition is an understatement

I have had cellulitis, fibrosis and now been told I have Complex Regional Pain Syndrome as well as other diseases I didn't have prior to the cancer. Hey ho!

Anyway my reason for writing is that my 'Good leg' (the best out of the two as the other post radiotherapy is worse!) is now leaking Lymph fluid. I've not had this before (apart from when I had the radiotherapy) so don't know much about it.

For example, how long does it last? Can I stop it happening? What are the risks associated with this? Do I just have to put up with it?

Any hints and tips and info would be appreciated!

Many thanks
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Location: England

Postby patoco » Wed Apr 23, 2008 12:46 pm

Hi there Furry :D :D

Was so happy to come home from the doctor and see you had joined us...but not happy to hear how bad of a time you've had...not good :cry:

It is amazing, in the 21st century medical world that lymphedema is still only treatable/managable and not curable.

The good thing though is that with the current research, I truely believe a cure is on the horizon.

I'm not surprised to hear about the Complex Regional Pain Syndrome as I have actually know it to happen to other lymphers. Somehow the bacterial infections seem to alter our entire metablosim, the CRPS is probably due to damage done to the nerves from the cellulitis.

Those leaky spots, the fluid is called lymphorrhea and it is important to try and stop that leakage as the fluid will eventually degrade surrounding skin tissue and before you know it, you have a giant wound.

The fibrosis is also treatable by the use of what we call "chips." These are pieces of foam rubber that are placed over the hardened areas, underneath the compression bandages.

Let me give you some pages of info that will really help on these things.

I really need to apologize too for not writing back from your email, it came at a crazy time. Had bi-lateral lung surgery, with catheters in both lungs now and all kinds of other complications from this wonderful lymphedema/lymphoma combination I've been wrestling with.

But I am sooooooo glad to have you join us. When you go through these pages, if you have any questions just holler and we'll be here :!: :!:

Leg Lymphedema

http://www.lymphedemapeople.com/wiki/do ... lymphedema

How to Treat a Lymphedema Wound

http://www.lymphedemapeople.com/wiki/do ... dema_wound

Lymphedema Fibrosis

http://www.lymphedemapeople.com/thesite ... brosis.htm

Lymphedema Lymphorrhea

http://www.lymphedemapeople.com/thesite ... orrhea.htm

big hug to ya too :!: :!:

Pat :mrgreen:
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Postby furrymonkey » Thu Apr 24, 2008 3:15 pm

Hi Pat :)

Sorry to hear about your health probs. It sometimes seems never ending doesn't it.... :(

Well I've been lurking for a long time on your site as you know. However I finally decided to post about this as I wasn't too sure about it as it's not happened before - in my "good leg" of the two!

When it was in the 'bad leg' I didn't know much about it at all as it was during Radiotherapy and no one had mentioned Lymphoedema at that stage.

I'm going to check out the links now - thanks for those. I've had a search around, but those precise places will help a lot.

Thanks again for being there and providing such a great resource!

Bye for now
Furry (aka Karen!)
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Joined: Wed Apr 23, 2008 10:10 am
Location: England

Postby furrymonkey » Thu Apr 24, 2008 3:50 pm

Hi Pat - me again!! :D

I've read through some of the pages so far....very helpful...!

Also I remembered you mentioned about the 'chips' - several people in the hospitals have said they've not seen a leg the shape of mine before - nice huh! Hence I'm not sure about the 'chips' in my case? Would they help even with the odd shaped leg too?

I've now got more problems apart from the leaking fluid. My Lymphoedema 'expert' has moved on in my hospital and I now can't remember the last time I had a new pair of compression stockings (longer than 2 yrs I believe!). Hence they are now getting so holey and wearing thin. Also they are not doing what they are supposed to do.

They were made to measure ones because of the weird leg shape. At the last clinic I was given generic ones because of the new lumps that have appeared (CRPS) being so painful. Also because I am fairly tall and my legs are bigger they only come up part of the way on my leg, so they then roll down and create more ridges and problems and are so painful I have to take them off. Basically they are worse than a chocolate teapot.

You would think that as the Lymphoedema experts in the hospital they would be a bit more 'understanding' but I feel very let down at the moment by the lack of support.

I'm in 'limbo' with a lot of things at the moment and they are all side effects of the chemotherapy/radiotherapy.

Sometimes it just gets you down doesn't it - you probably know that as well as I do...!

Anyway I'm off now as I'm so tired at the moment.

You take care and keep smiling!

Bye for now
Furry (aka Karen)!
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Joined: Wed Apr 23, 2008 10:10 am
Location: England

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