Question for those who've had LND (groin)

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8/19/2010 7:06pm
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Replies: 9

My husband is 6 weeks into recovery from LND of the groin.  He still can't completely straighten his leg.  He says it feels like his tendon is too short (pulls from behind his knee up to his groin).  Is this normal?  Has anyone else experienced this?  If so about how long until things were back to "normal."

He also says he has a "big section" of the front side of his leg where he feels nothing.  Permanent nerve damage?  Get better over time?

I guess we could wait until his recheck in a couple of weeks to ask the Dr but you all are so kind and helpful that I thought I would go ahead and ask here.

Thanks in advance for any and all responses.

Tracy

wife to Bill, stage IIIc

I had the groin lymph node dissection in 2005. I have never gotten all of my normal feeling back in my thigh but a lot of that numbness did go away over time. In terms of permanent loss of feeling for me it's fairly mild whereas the initial loss was severe. That feeling he described in terms of pulling back is something else that was much more severe at first but is milder over time. I had a lot of problems after my groin dissection and have had some long terms issues. In my case I think I tried to be too active too fast. It is good to do some walking so the nerves find the new pathways but better not  to overdo it, particularly at first. The leg should be elevated (above heart level) at night when resting, watching TV etc. This will help with lymphedema. Some lyphedema post surgery happens to most people but the long term permanent kind is something to try to avoid by keeping leg elevated. I do have lymphedema (fluid that backs up in leg and sometimes down to foot) but not too severe.  If you click here for the Roswell Park Handbook they have information on lymphedema prevention and other topics related to groin dissection. Best of luck, Carver

"A closed mind is a wonderful thing to lose"

i had a full LND to the right groin and i stll have no feeling over 50% of my thigh. my LND was 2 years ago. i still have tightness in my leg muscles but found that stretching relieves that. i hope ths helps!!!

i had a full LND to the right groin and i stll have no feeling over 50% of my thigh. my LND was 2 years ago. i still have tightness in my leg muscles but found that stretching relieves that. i hope ths helps!!!

My left side LND in '08 resulted in the permanent loss of feeling on the top of my thigh. It bothers me, but I've gotten used to it. I also have fibrosis that makes that thigh slightly larger than the other. I'm still a distance runner and work hard at maintaining flexibility in the leg.

Hi

Similar story to the others. Even after 2.5 years still have loss of feeling and tightness - but no loss of functionality. Run regular 10 km runs and do  "mini Iron man" (cycling, swiming, running) events and right leg (operation) is no more tired than left leg. My times are now better than before operation! Additonally excecise does not make leg feel worse, or better, than not exercising - just the same.

I think, once you are  ready, exercise is good to help leg get back to normal ASAP.

For further encouragement I am still NED afetr 2.5 years with "surgery only" option (i.e No Interferon or other treatement.)

Live Strong.

John from Bangkok.

Live strong
(Borrowed from my man Lance Armstong!)

Hi

Similar story to the others. Even after 2.5 years still have loss of feeling and tightness - but no loss of functionality. Run regular 10 km runs and do  "mini Iron man" (cycling, swiming, running) events and right leg (operation) is no more tired than left leg. My times are now better than before operation! Additonally excecise does not make leg feel worse, or better, than not exercising - just the same.

I think, once you are  ready, exercise is good to help leg get back to normal ASAP.

For further encouragement I am still NED afetr 2.5 years with "surgery only" option (i.e No Interferon or other treatement.)

Live Strong.

John from Bangkok.

Live strong
(Borrowed from my man Lance Armstong!)

Hi Tracy,

Like the others who have responded, I too have nerve damage to my leg. LND was June 2007. I don't even notice it anymore. I wear a compression stocking every day to reduce the swelling from lymphodema. I also had a lot of trouble with my groin wound, had to be attached to a VAC machine (Vacuum Assisted Closure) for a few weeks, and I had a huge ligature, making it difficult to straighten my leg. But I did physio, and it eventually relaxed after several months -- maybe a year. Now I don't feel it or notice it, and I walk perfectly normally.

Tell Bill to be patient, exercise it when he's ready, and ask his doctor about physio. It will get better, but it takes time.

Hugs

Sharyn

Stage IV

 

WLE, SNB, ILP, LND, PV-10, Uterine mets (Hysterectomy), GM-CSF, WBR, RT, Temodar, B-RAF negative, SRS (Novalis) to brain, Breast mets (Mastectomy), currently on Ipilimumab compassionate use trial
Mets to brain, lung and sub-qs. Craniotomy.

I too had LND in groin this year in April, I have 50% loss of feeling in my thigh.  My surgeon said it could be temporary or permanent.  He had to go in and around alot of nerves for the surgery, he took 28 of my lymphe nodes out (all were negative!)  I have gotten used to it too, I wear my compression stocking and my "biker shorts" to help with the swelling of lymhedema.  I can't walk for long periods without it swelling up.  I am sure we both may have permanent nerve damage.  I am hoping mine will get better over time.  Good luck to you and your husband, I am stage 3B.  Teresa in Indianapolis

Remember what's important and make everyday count

Hi, Tracy. My info is similar to what the others have said. I was stage IV and had 17 lymph nodes removed 8 years ago. Also had skin for grafts taken from the outside of that thigh. It took a little while before I felt like I was walking "normally" and I had most of the top of my leg that was numb. (I thought that would maybe be a good spot to give myself an interferon shot, but that was a bad idea - it hurt so much worse!) It got better though. Now, I just have a little section over the top of my knee, but I don't really notice it at all. I deal with lymphedema some, but they have a lot to help with that. (I sleep in a magical boot thing that I couldn't live without.) Wishing you guys the best!