Radiation Induced Lumbar Plexopathy

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A few weeks ago someone left me a comment on Twitter after I tweeted about my balance problems. She mentioned Radiation Induced Lumbar Plexopathy, something I never heard of it, so I did some research. From what I read, I could very well have this.

My balance problems became evident after I was weaned off pain meds. Before that my doctors thought I was wobbly because of the heavy-duty pain meds I was taking. But when I was drug-free, they checked me over and all they could tell me was “I don’t know.”

I looked around the Internet to see if I could find out for myself and the only thing I came up with was… maybe the chemotherapy attacked my nervous system. I only had two doses but the first one they gave me was accidently over-dosed, so I figured that’s when the damage was done. Since I found nothing concrete and my doctors didn’t seem interested to pursue the cause any further, I gave up.

At first my legs were so bad, I had to get around in a wheelchair if I went out for long periods. My legs were too weak to walk farther than half a block… but after some rehab and getting into gentle yoga, I got better; not back to normal but at least I didn’t need a wheelchair anymore. Now I use a walker when I go out alone.

Radiation Induced Lumbar Plexopathy is a fancy term for; your nerves are screwed up around your lumbar pelvic area from all the radiation treatment you got to kill the tumors. When my 30 treatments were finished, my radiation doctor told me, ” I’m surprised you finished the treatment, I gave you more radiation than any of my other  patients.” At the time I didn’t fully appreciate his comment, but now I see how it probably affected my nerves. Before I started radiation the same doctor assured me that only the tumors would be affected; none of the surrounding tissue would be damaged.

Silly me, I believed him.

Within a couple weeks the entire area around my upper thighs and groin area turned gray. My pubic hair fell out. The radiation beam was aimed at my lower left butt-cheek and yet the front of my body clearly was affected. I shutter to think what my ovaries, vagina and other lady-parts must have looked like. Did my doctor really not know the radiation would spread out to connecting tissue or was he feeding me a line of crap, thinking I wouldn’t do the treatment if he was honest with me? My experience is another example why patients should do their own research before doing ANY treatment. You have to be your own advocate! I don’t care what your doctor tells you, you aren’t getting the full story.

I can’t go back and change what happened and I probably would have done the radiation anyway. I was in bad shape and I knew time was not on my side, but it would have been nice (and ethically responsible) to give me all the information. Now I have a “new normal” life. Everyday I practice gentle yoga (I have some listed in the yoga section of this blog if you want to check them out for yourself) and I go for walks. If I miss a few days, I feel my muscles tightening. My lower back was so tight after radiation I couldn’t bend over to pick something off the floor. It felt like my muscle was tearing; that’s why I started a daily yoga practice. It took a year for me to be able to touch my toes or come close to sitting cross-legged. But each day it got easier and easier.

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If you are experiencing balance problems or nerve pain and/or numbness, after getting radiation, you might have Radiation Induced Lumbar Plexopathy. There’s a Facebook support group you can join and find out what other’s do to relieve their symptoms.

Be well and stay informed!

Inge

 

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5 thoughts on “Radiation Induced Lumbar Plexopathy

  1. Thank for this… Yes informed choice would be good but none if us seem to have been allowed that.. The group is proving a wonderful place ro help each other with the more practical management of RILP.. Will share this on my own blog too .. Helen

    • Me too. I didn’t know exactly why I had problems walking until a few months ago. Thank goodness for the Internet!
      There’s so much information to be shared like never before.

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