Radiation induced lumbar plexopathy

[Philfruitbat]

As Hi Folks, So glad to see this website as I am finding it very difficult to find info. After 37 lots of radiotherapy for stage 4 prostate cancer Jan through March this year, I thought everything was going brilliantly until 3 months ago. After being bounced around specialists, I have now been diagnosed with radiation induced lumbar plexopathy. I am now virtually housebound as I can only stagger a few steps without crutches, and get absolutely shattered if I try and go too far with the crutches. Can anyone give me a prognosis for the future and anything I can do to help halt, and possibly reverse my problems.

[HarleyQuinn82 Community Pioneer]

Hi Philfruitbat,

I’m sorry you have been through so much and continue to struggle but im glad you have had a quick diagnosis as it can sometimes rage a long time. Have you been referred to Neuro physio as certain exercises can help with weakness and there are medications that can help with nerve pain, spasms, tremors etc.

It would be worth looking at the PRDA best practice pathway which has a section on radiation induced lumbar plexopathy prda.org.uk/wp-content/uplo...

Also there is a support group on Facebook m.facebook.com/groups/Radia...

Hope this helps.

Best wishes

Rhea

[ACSurvivorSF]

Hi Phil,

I have a friend, a fellow pelvic radiation co-warrior, (we've both had anal cancer/chem-radiation) and she has lumbar plexopathy, has been dealing with it for a while now: I've sent her this link, and hopefully she can joins this site and can be of help to you. Stay tuned!

~Richard

[RILSPgirl]

Richard told me about you. I have radiation induced lumbosacral plexopathy (RILSP) as a result of 28 days of radiation for anal cancer. Mine hit hard about the same time yours did. Believe it or not, an early onset is usually better than late onset as recovery is "easier." At first, I was falling a lot and needed a walker even in the house. I got physical therapy, exercised daily, took nerve support supplements, got laser treatments from a chiropractor, acupuncture, meditated and did visualizations. I went from being so profoundly weak I couldn't lift my foot high enough to drive to walking unassisted (no walker, no canes, no trekking poles) in a few months. After 4 years, I still have some weakness and trouble with stairs, but am functional again. I wish I could tell you exactly what worked, but I don't know. What I want you to know is that recovery may be possible. Everybody has a different path and different end points. Wishing you the best of luck.

[Philfruitbat in reply to RILSPgirl]

Thanks for your positive response. I am currently having a course of steroids and amyphylipine. Early days. Here's hoping

[RILSPgirl in reply to Philfruitbat]

I don't know what amyphylipine is, but steroids were never offered as an option for me. Do you know how they are supposed to work to make you better? I have another friend with RILSP who got hyperbaric oxygen treatments to help with both the RILSP and wound healing. She had to discontinue the HO treatments and is still struggling after her anal cancer. Please keep in touch and let me know how you're doing. The more we know the better we can help each other. Thanks.

Falline

[Philfruitbat]

Morning, just a quick update.I have been put on a course of steroids. Starting heavy for the first ten 10 days and the cutting down slowly and finishing after 41 days. This is to try and reduce the swelling in my pelvis. I am also on a course of Amytrypiline, this is also pretty heavy. This is to reduce the pain and hopefully get the nerves working better in my pelvis. Today is the 10th and last day of the heavy steroids. There has certainly been a good improvement in my hip movement. I can walk unsteadily without support for about 400 yds, I could only walk short distances with crutches before. I also have a lot less pain in my hips and legs at night. There doesn't seem to be much difference in the strength of my hips and I still have to crawl up the stairs. My physio exercises seem to be getting a bit easier too.

I hope anyone finds this useful. I will try and give fortnightly updates.

[RILSPgirl in reply to Philfruitbat]

I'm glad you're already seeing some improvement and can walk without support for short distances. Keep up the good work with your exercises - getting the muscles I could control stronger really helped my mobility and my general attitude. Wishing you continued good luck and progress!

[Philfruitbat]

Hello again, I have been a bit lax in updating my progress. I have made steady progress over the last few weeks. I am walking 4k every day. Although I still look like I am applying for a job in Thunderbirds. After seeing my brilliant NHS physio, I am doing 3 sets of 11 exercises every day. These cover all my body to ensure that nothing gives way during this period.

My strength and movement continue to improve, although more slowly as time goes by.

I saw my oncologist on Monday and she has reinstated another course of steroids, although not as strong as before as she believes that the steroids could deter the improvement in my hips which are still not anywhere near back to normal. My balance is also steadily improving.

I hope to go down to the golf course later this week to see if my balance has improved enough to swing a club.

[RILSPgirl in reply to Philfruitbat]

Excellent! I'm so happy that you're seeing significant improvement. Is your oncologist suggesting anything to protect your hips? Are you taking calcium or any other supplements?

[Philfruitbat in reply to RILSPgirl]

No supplements at this stage. All my work is towards strengthening the muscles in my hips and pelvis. I don't think she will extend the taking of the steroids. Nobody seems to know if I will carry on improving or slip backwards.

[RILSPgirl]

Our condition is relatively rare and each of us has a unique trajectory, so doctors are typically very hesitant to give a firm prognosis, especially for those of us that show improvement. My neurologists are now in agreement that it's very unlikely I'll get any worse. Probably won't get much, if any better - it's been almost 4 years since my symptoms began - but I'm functional and don't have any pain. My guess is that your path will be very much like mine. Rapid improvement in the first few weeks/months followed by stable to slightly improved functioning. I still get physical therapy 2x/week and exercise daily to maintain the strength I have and expect I'll need to continue that going forward. I've started taking calcium (with magnesium and D3) to ward off pelvic insufficiency fractures which sometimes happen after pelvic radiation. No symptoms of bone weakness yet, but I'm taking a low dose as a precaution. I've got my fingers crossed for you! Sounds like you're doing great.

[letsexplore in reply to RILSPgirl]

Hi - I am also very new to this site. So amazing to be able to chat with people who really understand what we have been through and continuing to go through. Unforunately I find it difficult to speak with friends and my other half thinks that I am making everything up and is not at all sympathetic or understanding.

I have also had treatment for anal cancer 2017 and very brutal radiation. I already had had a hip replacement in the left hip as the cartilage had died due to a fall 10 years before. Just before Christmas 2022 my other hip started playing up. Very stiff in the groin area which was incredibly painful until I started to move and then I walked with a wobble ( or a right sided gait) as my physio called it. On an MRI scan fluid around the hip joint could be seen and an xray shows that the top of the femur is breaking down ( I suppose from bone on bone contact). I am just about to have a hip replacement next week. However my physio thought that the back was also a problem. My onclogist, who is lovely just doesn't seem to think the radiation could or does cause problems like this!! I have been having to use crutches as my muscles on my right side are now so weak and to try to stop the wobble to protect the pelvis and spine. Now I am wondering if I could also have lumbar plexopathy? ? Are part of the symptoms a wobble or gait to one side as you walk??

I also have started to take vitamin D3 supplements but maybe I need to take calcium and magnesium supplements as well, although I do regularly eat walnuts.

P

[RILSPgirl in reply to letsexplore]

RILSP can show up any time after pelvic radiation from a few months out to decades later, so timing is no hint as to what's happening with you. My symptoms were bilateral and I think that's typical, but that's not the case with everybody. My initial symptoms were profound weakness in both legs (but more so in my right leg) and falling. Radiation can cause pelvic insufficiency fractures and I think that's hard to pick up on an x-ray. Sorry I can't offer a strong opinion about what's going on with you. RILSP is a diagnosis of exclusion - that is to say, if nothing else explains your symptoms, then RILSP is sometimes all that's left. My doctors are telling me to continue exercising to keep the muscles I still have control over as strong as possible. I'm functional now - no assistive devices needed to walk level ground or climb a flight of stairs - as long as there's a sturdy handrail. But my walk is somewhat lurchy and my balance which was never good, is worse than ever. Good luck to you. This stuff is very real and can seriously degrade one's quality of life. I hope your partner reads our comments and comes to understand that radiation exacts a price for destroying our cancers.

[Philfruitbat]

I definitely have a waddle. My left side is much worse than my right side. I think that I have been very lucky that both my oncologist and my physio didn't take any convincing about RILSP. Nobody knows where I will end. I am doing 14 separate exercises, 3 times a day. These are not just for my pelvis. My physio is making sure that all of my body is being worked, to stop any other issues arising. I only have two more weeks of steroids. Then we have to see if I carry on improving, or start to detoriate.

[RILSPgirl in reply to Philfruitbat]

Hi Philfruitbat, I never got steroids, but other than the usual minor daily fluctuations, once I started improving and exercising, I haven't slipped backwards at all. I hope you have the same experience.

[Ohthistoo]

I've found this discussion really interesting. I've no idea if I have RILP. I have awful nightie cramping. I have lumber spine degeneration and lots of bowel symptoms primarily constipation. Partly this seems to be through a lack of peristaltic action. As a result I take lots of sodium docusate. My electrolytes when tested are normal but this awful cramping in my lower legs, feet, and ankles and some times bowel mean I guess their cold be nerve damage. I do have a lovely onc and cns but when I suggested a referral for RILP he said it was a possibility but kind of pointless as no treatment for it. It's degenerative. Nothing to be done. I found this so depressing. So it's heartening to know that there is a treatment pathway for RILP. I'm glad here at least people are seeing improvements. My Onc did send me for an MRI which took ages and I've asked my GP to refer me to neurology. I saw the other day that my GP practice have coded me red for John Hopkins scoring on using services. I'm sure they think this is health anxiety or why can't I just be grateful I'm alive and f**k***. If you get my meaning. Since my cancer diagnosis it seems lots of folks want me to just be grateful and shut up.

[RILSPgirl in reply to Ohthistoo]

I'm sorry for all the troubles you're having. We have very different symptoms - my legs were very weak and I was falling, but no pain or cramping. RILSP is typically progressive and incurable, BUT with physical therapy and daily exercising, I've gotten a lot of improvement and no progression. I'm thinking that PT, stretching and exercise might help with your cramps. While we're all grateful to be alive, that doesn't preclude being angry or frustrated by all the aftereffects of our treatment. The medical system is set up to get us through cancer treatment, but not geared toward supporting us as we deal with all the ongoing damage that cancer treatment does to us. Continue to lobby for what you need. These problems are not your fault and you deserve all the support you can find. Good luck to you.

[Ohthistoo in reply to RILSPgirl]

I already do swimming and gym as was put into medical menopause so trying to maintain muscle strength and bone density with fatigue. 😞