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Tone
Nov 15, 2005, 11:10 AM
Hi all,
I have had a lymph leak from my lymphatic thigh for a couple of years.
I have - perhaps mistakenly - thought that this must be a fistule, - possibly originating from an inner lymph lake inside my leg.

I have had lymphedema in my left leg for 8 years after a gyn cancer operation which left me without any lymph nodes for my protection, but with lots of scar tissue in the "inguinal" area (crotch?? - sorry - English is not my mother tongue), and also lots of scar tissue on the back side of the leg, as skin tissue from that area was used for reconstruction of half of my vagina.

Well, - after a lymphography last week it turns out there were no "inside lakes", neither could any channel be seen leading out to where the leak is.

One week after this exam, my leg is still dry. The "fistula" (which might just be a sore???) is a bit sensitive, scaly and itchy, but dry. But, the LE leg itself is much more sore and "puffy" than usual. I probably should not say anything at all - after all a week is nothing. The stiches won't come out untill this Friday, - so what if my ankle and leg are straining and fighting my compression stocking!

So - why am I posting to this forum?
Does anyone have any experience with this type of leak? The X-rays just show that there is an aboundant number of very very fine lymph vessels in the area of the leak. Nothing else that gives any clue, or way out for a possible further prosedure.

Any suggestions?

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Tone in Oslo, Norway

Ingrid
Nov 15, 2005, 12:56 PM
If I understand your posting correctly, your main problem after the testing for lymphorrhea is increased swelling in your lower leg and ankle.
Is it possible that while recoverying from the testing you have been getting less exercise than usual? Exercise is such an important part of controlling swelling. It is also possible that your body is reacting to the testing.
Ideally after the stitches are out and you are back to your usual routine, that the excess swelling will go down again.

Good Luck, Ingrid

P.S. I wish I spoke Norweign as well as you write in English!

Tone
Nov 15, 2005, 02:13 PM
Ingrid's words of advise were really to the point.

I will breathe deeply, - move about - and after Friday when stiches have been taken out - I will truly get some more exercise. Promise. Actually I am in luck, I have LE therapy right after having the stiches out. And I just know my PT will be after me for exercises as well.

Will surely report back, - I am afraid that the heavier leg right now with the contrast fluid and all, - is just one problem, the leaking lymph is the main thing - and that will take time. So - anyone with lymphorrhea info to share out there?


Best wishes to all,

Tone - in Oslo

Rhandi
Jan 17, 2006, 01:03 PM
TONE!!!!!!!! Oh my goodness woman!!!! I haven't seen your name in years!!!! Do you remember me? Rhandi from Texas? We used to be on the same LE email list years ago. I had just been diagnosed when we met online. We used to write each other from time to time!!!!

I hope all is going well with you sweetie! I've though of you often, my sweet friend in Oslo!

Please check in here and let me know how you are!!!!

Many hugs! :D

Rhandi

Originally posted by Tone
Ingrid's words of advise were really to the point.

I will breathe deeply, - move about - and after Friday when stiches have been taken out - I will truly get some more exercise. Promise. Actually I am in luck, I have LE therapy right after having the stiches out. And I just know my PT will be after me for exercises as well.

Will surely report back, - I am afraid that the heavier leg right now with the contrast fluid and all, - is just one problem, the leaking lymph is the main thing - and that will take time. So - anyone with lymphorrhea info to share out there?


Best wishes to all,

Tone - in Oslo

LarryC
Feb 14, 2011, 02:54 PM
This is my chance to push for an on going thread about exercise and lymphedema. I'll start by saying I was looking for something with low impact yet stresses the muscles significantly. Cycling fit the bill nice. I don't ride for speed or try to be a Lance Armstrong, just pedal, pedal, pedal. Your legs act like a pump and pump the fluid from your legs. I also have LE in my abdomin and genitals. I haven't found any exercise for those areas yet.

Larry