Radiation-Induced Lumbosacral Plexopathy

Hi David. I read with interest your article on HBOT for radiation fibrosis in the pelvis area. I asked the doctor, and she said that she hasn’t seen it be a problem for single dose treatments like I had. It caused me to wonder about the details of the studies you mentioned.

My mother is 3 months out of her 25 pelvic radiation treatments. I think after much research and finding youI have found a answer and diagnosis. Her legs are not working basically. Cannot get up from a seat unassisted/ on off toilet , cannot lift legs more than a few inches . She has fallen 5 times !! Right now she’s in hospital with broken rib , last week she needed staples in her head. Her Uncologist at Sloan Kettering says this is all “A” typical. But no answers . Only start OT , PT , nutritionist . No guidance. We are scared and mad this is happening . Her radiation has made her disabled and I wish I was knowledgeable about this before. My heart hurts for everyone going through this “journey “

[…] Multiple Myeloma Side Effects- Radiation-Induced Lumbosacral Plexopathy […]

[…] Multiple Myeloma Side Effects- Radiation-Induced Lumbosacral Plexopathy […]

[…] Multiple Myeloma Side Effects- Radiation-Induced Lumbosacral Plexopathy […]

[…] Multiple Myeloma Side Effects- Radiation-Induced Lumbosacral Plexopathy […]

[…] Multiple Myeloma Side Effects- Radiation-Induced Lumbosacral Plexopathy […]

[…] Multiple Myeloma Side Effects- Radiation-Induced Lumbosacral Plexopathy […]

[…] Multiple Myeloma Side Effects- Radiation-Induced Lumbosacral Plexopathy […]

[…] Multiple Myeloma Side Effects- Radiation-Induced Lumbosacral Plexopathy […]

[…] Multiple Myeloma Side Effects- Radiation-Induced Lumbosacral Plexopathy […]

[…] Multiple Myeloma Side Effects- Radiation-Induced Lumbosacral Plexopathy […]

[…] Multiple Myeloma Side Effects- Radiation-Induced Lumbosacral Plexopathy […]

[…] Multiple Myeloma Side Effects- Radiation-Induced Lumbosacral Plexopathy […]

[…] Multiple Myeloma Side Effects- Radiation-Induced Lumbosacral Plexopathy […]

[…] Multiple Myeloma Side Effects- Radiation-Induced Lumbosacral Plexopathy […]

[…] Nerve damage aka “Radiation-Induced Lumbosacral Plexopathy” therapies- […]

[…] Nerve damage aka “Radiation-Induced Lumbosacral Plexopathy” therapies- […]

[…] Nerve damage aka “Radiation-Induced Lumbosacral Plexopathy” therapies- […]

[…] Nerve damage aka “Radiation-Induced Lumbosacral Plexopathy” therapies- […]

[…] Nerve damage aka “Radiation-Induced Lumbosacral Plexopathy” therapies- […]

[…] Nerve damage aka “Radiation-Induced Lumbosacral Plexopathy” therapies- […]

[…] Nerve damage aka “Radiation-Induced Lumbosacral Plexopathy” therapies- […]

[…] Nerve damage aka “Radiation-Induced Lumbosacral Plexopathy” therapies- […]

[…] Nerve damage aka “Radiation-Induced Lumbosacral Plexopathy” therapies- […]

[…] Nerve damage aka “Radiation-Induced Lumbosacral Plexopathy” therapies- […]

[…] Nerve damage aka “Radiation-Induced Lumbosacral Plexopathy” therapies- […]

[…] Nerve damage aka “Radiation-Induced Lumbosacral Plexopathy” therapies- […]

[…] Nerve damage aka “Radiation-Induced Lumbosacral Plexopathy” therapies- […]

[…] Nerve damage aka “Radiation-Induced Lumbosacral Plexopathy” therapies- […]

[…] Nerve damage aka “Radiation-Induced Lumbosacral Plexopathy” therapies- […]

[…] Nerve damage aka “Radiation-Induced Lumbosacral Plexopathy” therapies- […]

[…] Nerve damage aka “Radiation-Induced Lumbosacral Plexopathy” therapies- […]

[…] My experience coupled with the evidence-based research below clearly proves this. I suffer from radiation-induced lumbo-sacral plexopathy (RILP). My leg strength and balance are needed to keep me out of a […]

Helloi
In one month after i finished radiation in my groin i was getting down the stairs and i fell on the floor with my knees.
Before the incident i never noticed anything changing in my legs! In 3 week later that i was using a cane and a wheelchair!
I did all kind of tests and today doing a EMG was found that i really have nerves damaged in my hips.
Next it is going to another pelvis MRI.
So they can confirm that was because of the radiation!
So what do tou think?
What is the best treatments to have?
I just finished radiation 7 weeks ago!
Thank you for any help!

Two months after radiation for uterine cancer (I had a radical hysterectomy followed by 4 months of high dose chemo treatments and then radiation) I went to bed feeling fine and woke up the next morning with a really bad pain in my abdomen where my uterus used to be. It has continued 24/7 for 7 months. They have done CT and PET scans and found nothing so they are telling me it is neuropathy. I am on Gabbapentin and Venlafaxine with 8 Tylenol 3 a day for the pain.

I don’t know what to think as this is a heavy pain and does not have the symptoms of neuropathy. Has anyone else had this and if so what are your doctors doing for you?

Terry

[…] Nerve damage aka “Radiation-Induced Lumbosacral Plexopathy” therapies- […]

[…] Nerve damage aka “Radiation-Induced Lumbosacral Plexopathy” therapies- […]

Oh, how I have tears in my eyes! It is so exciting, and I mean this in the best way possible, that I have found this site! I am a 44 y/o female cancer survivor. When I was 21 (1994), I was diagnosed with a tumor on my spine (L4-L5 region). Initially, doctors thought it was benign, but once the neurosurgeon cut, he said it looked malignant. Pathology confirmed the malignancy. I received 32 radiation treatments, but I cannot tell you the dosage. In 1996 I gave birth to a beautiful baby girl and life was great. I never participated in Relay for Life or other “survivor” events, because I just felt like my case was so easy compared to others. I never got sick, lost hair, no complications whatsoever. Fast forward to No ember-December 2014. I was finishing my last semester of nursing school. I started noticing that I was “pulling” myself up the steps more than I was “pushing” with my knees. Well, I was too busy to worry too much about it at the time. I graduated Dec 2014, and in Jan 2015, I started nursing at our local hospital. (Oh, by the way, I’m from Alabama☺️). Once I had time, I went to my GP and explained my symptoms. I told him that my family noticed, when we talk walks, that I seemed to have a slight limp. I couldn’t “feel” myself limping. Any pain I had felt like arthritis in my knees. He took a X-ray of my knees, and sent me to an Orthopedic doc. He took X-rays of my hips and knees. I was diag with bursitis in my right hip and osteoarthritis in both knees. He gave me injections in both and I felt better. At the time, I lived in a single level home, so I didn’t have run-ins with stairs very often. By spring of 2015, I had a noticeable limp that my coworkers acknowledged and I felt like my right ankle was going to roll over with every step. I fell in my yard once. I went back to ortho doc, told him we were about to take a big trip for my daughter’s graduation from HS and he had to get me fixed. Shots again. Went on our trip, where I fell twice. There were two days that I could not join my family on hikes because the trails were very rocky or had stairs, and I knew I would slow them down. That was very hard. Later in 2015, I began to notice that when I flexed my right foot, it would not come straight up; it would rotate to the left and come up. I thought-huh, weird. The next time I saw my Ortho, I showed him this. He eventually sent me back to my neurosurgeon, because he began to feel symptoms were more back related. By this time, I had had MRI and EMG tests done. Neuro doc diagnosed me with Radiation Myelopthy. He said there was nothing we could do, it may stabilize or it may get worse. I asked what is worse, he said I could end up in a wheel chair. Eventually, I had to leave floor nursing, ( because I worked with newborns and I feared dropping or tripping and falling with them!) and do another position. In May of 2016, I began to have really bad back, hip and leg pain-more so on the left hip and leg. By late summer/early fall I was seeing a pain doctor. He referred me to a neurologist in Sept of 2016, but it was May 2017 before I could be seen. Which brings us to present. I walk with a cane when I go out, I can still drive (but I have become a hermit because I can no longer work and feel like no one cares), my balance is not good, especially on non-solid surfaces, the pain is awful most days. I wear a patch 24/7 and have oral meds I take 2-3 times a day. My pain doc says we’ve reached the end of meds he can offer. He is discussing a TENS now. The neuro last week says I have foot drop in left foot. He wants to do MRI w/ & w/o contrast and repeat EMG since it’s been 2y. He thinks I either have a recurrent tumor in my plexus or I have LSRIP.
I know that was long and rambling. But I cannot begin to tell you how enlightening it feels to hear your story through other people. I have felt so alone. I have a wonderful family and support system, don’t get me wrong, but they just don’t understand. Now I have people who do☺️.I definitely plan on joining the FB page. Look for my request. And thank you all for all you are doing to bring this to the forefront!

Please some one accept me into the FB group, I asked to be a member in the closed group and I am suffering terribly with pain in my hips, my legs feel like the flesh is tearing from the bone when I walk. I am positive that I have this RILP. I had Vuvlar cancer with radiation 5 days a week for 6 weeks and at the same time I was receiving the 5-FU and cisplatin intravenous chemo doing all 3 at the same time. I was radiated so badly that my girly parts literally melted off, had 3rd degree burns and 2 years after being deemed cancer free the burns came back with open sores and they tell me I have to love this way. I have complained since radiation stopped that my leg pain was excruciating , like the muscle was teraing away from the bone. through this past 6 years post treatments my leg and hip pain is so bad that I went from walking to not being able to ride a bike and now just trying to take the trash out I am in agony. The doctors ignore and have ignored my pleas for help and I am betting by next year I will be in a wheel chair. I just went to my OBGYN/ONC and now she sees cancer cells have spread to my rectom… deep sigh… I will do surgeries but no way no how will i E-V-E-R do targeted radiation treatments again. It has left my body in ruins. I am pleading for help I am now and 6 years post radiation and chemo therapy. Please, some one speak to me about this because I feel I am being tossed to the road side by my doctors and have now become a hermit because its just to painful to move. My neurpathy pain drives me insane. My quality of life is ziltch and I am simply ready to just give up and let God take control PLEASE let me join the facebook group. I need to be with people who understand what this is and what we have to live with because for me. I too feel I have reached the end of the road. At this point I think end of life care would be better than the quality of life care I am getting now 🙁 please some one talk with me? I also have the burning, stinging, tingling pain, cant bear to have anything touch my legs or feet, its driving me crazy. 🙁

I too suffer from Radiation Induced P lexopathy due to radiation of pelvic area just last year. I have PN in both legs but severe hip leg and back pain. I have not been officially diagnosed – is the pain normal with this after effect?

Hello Everyone …I cant say that radiation of any specific type caused my Lumbar Plexopathy…Started in 2006 with one heck of a back ache and and the Doctor at that time diagnosed the condition as Stenosis(wrong)…followed by 9 years of mis-diagnosis as Motor Neuron disease and whatever the Physicians decided to call it…Finally ended up at the Mayo Clinic in Rochester MN in 2014…They put a name to the wasting of muscle and nerve damage…This seems to me to be one of the Orphan Disease’s which means we are on our own and good luck…I have lost most of the Muscle in my right leg and is now starting in the left leg…I am a cyclist still ride 15 miles 4xs a week…it helps keep me walking and out of the Chair …thus far…I am thinking of trying Stem Cell Injection …have any of you considered this ???..I will say that I agree this disorder is a lonely road…sorry you all have this THING…

Hi David,

Thank you for this blog. I’m glad it exists.

I have not officially been diagnosed with RILP, but I suspect it could be coming.

I had a testicular stage I seminoma, of which I was cured with surgery and radiation in 1997. About 2 years ago, in the fall of 2014, I began noticing some weakness in my lower right leg, followed later by weakness in my upper left leg. This came and went for a while, then came to stay, and has progressed ever since. I can still walk but it has become more difficult over time.

I have what even my doctor at Duke University says are all the classic signs and symptoms of RILP: radiation to the pelvic area, progressive leg weakness that’s bilateral and asymmetrical, MRIs showing enhanced lesions in the cauda equina, EMGs showing nerve signal disturbances, elevated protein but no malignant cells in lumbar puncture. All the classic signs EXCEPT signal changes in the spinal cord or scarring/fibrosis.

A laminectomy/biopsy, as well as a spinal angiogram, showed that the lesions appear to be what the pathologists think are hemangiomas. However, I’m told that hemangiomas typically cause a lot of pain and a faster progression of symptoms, and the diffuse nature of the lesions has the docs puzzled, so they want me to consider a second biopsy.

Every medical pro I’ve seen keeps telling me that this doesn’t look like a radiation-induced process, but I remain skeptical because of the clinical presentation.

I’m wondering if you have any thoughts on this, or if you have run across anyone with a similar story. I am curious to check out the FB group but I didn’t want to intrude without an official diagnosis.

Sorry for the long-winded message. Thank you for your time.

I am the Heather that posted on David’s Beating Cancer site back in April 2015.
I am not sure what I should write now as the aim of this site is to be positive and share useful information. My story is, radiotherapy for endometrial cancer in 1988, now nearly 28 years ago, onset of sensory loss, leg weakness and lymphoedema within next couple of years, ongoing therapies and rehabilitation for most of these years. I could walk(though with significant difficulty) until August 2015 when I broke my leg. I have not rehabilitated from the inactivity and damage I suffered then although my current major problem is probably the result of the awquard way I have been getting around for years. My left knee is so damaged and misplaced that I have been told a knee replacement is not possible and if it were I could not rehabilitate because of the lack of quad and other muscle in my leg.
I can still stand briefly,(though the pain is excruciating) and I can move short distances with a walker. Needless to say my life has contracted and I am no longer able to do much for myself, though I can still manage my own personal care.
On the positive side for other people to know, I have walked for nearly 28 years after my treatment and I feel I would still be walking if I had not damaged my knee so badly, so I want to recommend that all of you who can walk, try to maintain as normal a gait as possible. Much of my damage has come from “hyperextending” as I walk, which has stretched all the ligaments at the back of my knee. Of course I don’t know how I could have prevented this happening, I have been so determined to keep walking and getting up steps etc that I developed a very individual way of walking which served me quite well until my last leg break when the combination of reconditioning from inactivity, bone damage, other falls etc have resulted in my current situation. I really am still unclear what has actually caused my knee problems, I think it is the combination of many factors associated with my plexopathy.
I know there are positives in any situation, there are always those worse off, and I know I was very fortunate to walk for so long after my radiotherapy. The pain I am now in with the combination of constant nerve and bone pain makes life quite challenging.
I would also like to encourage everyone to do as much targeted exercise as possible, I have done hydrotherapy and targeted exercise over all these past twenty plus years. I am now doing Pilates exercise to keep the strength in my arms, arm strength is essential for those with leg weakness, without my arms I would be even more dependent on others than I am now.
My best wishes to all of David’s readers,what a generous soul he is to create this page.

Add me to your list of cancer survivors with RILP. It’s encouraging to know that others have experienced what I have. I was treated 20 years ago for cervical cancer with surgery, chemo, internal and external radiation therapy. About 10 years ago my neuropathic symptoms began in my legs and slowly progressed.I have an AFO for the left leg and can only tolerate walking short distances with a cane or rollator. For long distance, I use a mobility scooter. Last week we installed a stair lift to the upstairs of our house as I could no longer make it up unassisted.

This complication stinks ! I had a very active life. But how can I complain when the treatment saved my life? Medical professionals do need to be more aware of this outcome and develop methods to minimize it.

I am happy to have found this group tof share with.

Hi David!

I too suffer from progressive RILP which started approx 10 years after my internal/external treatments for cervical cancer(2001). Finding help has been exhausting, expensive, and frustrating. I was lucky to receive 30 HBT within 6 months for abdominal pain, which in hindsite, may have helped in the long run. I have seen a well respected neurologist and even consulted an equally respected neurosurgeon and the best advice that they could give was “Dont ever give up, exercise moderatly daily, eat well, and keep a positive attitude” The whole ironic thing is that I am a radiologic/CT/MR technologist, but I am now considering applying for disability. I am so thankful I have found others for moral support.

Yesterday was the first time ever I read about RILP even though I’m obviously suffering from RILP since about 2006!
I have a feeling I am the only person in Germany with these problems as all physicians appear totally helpless with regard to my syptoms.
I had radiation and chemotherapy in 2003 for rectal cancer and about 3 years later my problems gradually started.
Since that time I tried (and am still trying) all kinds of treatments in the naturopathy department mainly because regular doctors have no plan what to do besides offering psychotropic drugs: homeopathy, kinesiology, ayurveda, zen meditation, yoga – you name it, I tried it all. I have weekly sessions in physiotherapy and osteopathy, I practice on my treadmill and I try all kinds of other devices like black roll.
I am constantly searching the internet for clues and for companions in misfortune and now finally today I found your blog.
I can still walk without cane or any other devices (I lean on my husband…), I can climb the stairs in our house, I can go shopping for our daily needs and I can drive my car, but it is very tiresome and exhausting to take only the shortest walk. I used to do a lot of hiking and now the onIy exercise I can do is working in my garden crawling around on all fours because getting up is so difficult.
If I should give any advice with regard to at least temporary improvement I suggest trying osteopathy. After these weekly treatments my gait improves considerably for at least that day and I feel much stronger.
And another thing I strongly recommend is yoga. There are so many exercises you can do sitting down and the stretching helps tremendously when my legs start to prickle.

Mario Badescu hudpleje tilbyder et omfattende udvalg af produkter til alle dine behov.

[…] Facebook group you just need a Facebook login. I am also sharing the running of this group with David of People Beating Cancer, he also has RILP. Lets see if we can make a difference together… Feel free to share with […]

Hi David i could certainly do that infact I probably have a lot of the information and now the holidays are over I need to put it together.. Can you email me as do not want to put other people info as a comment and I cannot find an email address for you. … I had 50 gy of radiation to pelvis but this is info some may not have … I also note that if you put Radiation Induced Lumbar Plexopathy as an internet search there are more articles now dated 2015 of case studies… This is one http://gynoncrp.biomedcentral.com/articles/10.1186/s40661-015-0019-9. There are others but some are just abstracts and you have to buy the full article. I sent an email to the Dr who initiated this one … I note they say patients stabalize but I wonder if they go back a few years later if this is the case… Look forward to hearing from you ..

I am the Helen that Cathy referres to and this is my blog link https://lifeinawheelchairblog.wordpress.com/about/
I have connected with quite a few people in England, the US and Australia.. All except two have had cancer treatment, the other two have no known cause and one of those did heal over a three year period. Only one ither is in a wheelchair like me.. Others are at various stages but we all have a very similar story of the progression of RILP.. My email is helenbrd@bigpond.net.au if anyone would like to connect… Kathy i am quite sure there are a lot of us out there as treatments and survival rates increase… Neil i had read this could happen from 1-30 years later it is scary that this can happen years later… Drs do need to take note and provide infomation and support… I find it so hard to belive I am paralysed all these years later… I hope non of you reach this stage but for me the damage would not stop, i can neither weight bear ir make any movement beyond a little toe movement… If I had a spinal injury there would be so much help and support but for this it is an ongoing fight for recognition… Kathy keep pushing those cancer groups etc for acknowledgement.. I will back you all the way… From Helen

Hi David,

So good to read your posts – agree with all your observations. I have RILP from radiotherapy to pelvis in 1996. I can now see how insidious the slow deterioration has been, making me blame myself for laziness and thinking I had fatigue syndrome. Have just finished a course of HBOT – no effect other than on my bank balance. Today I am excited to find that there is a physio clinic not far from me which has an anti- gravity treadmill so I will be booking some sessions ASAP. I know it won’t be a miracle cure but At least there will be some fun along the way! More info on AlterG website.
I have also been contacting a few organisations for cancer survivors here in the UK to persuade them to add information about RILP to their websites. They do at last seem to be addressing the issue of radiation damage late effects but usually only to mention gastrointestinal problems. It’s great to be able to point to sites like yours and Helen’s to back me up, as they too often try to tell me that I am the only person who has ever presented with this!
May I ask whether you use a wheelchair? I have yet to address this side of things myself and find it a bit mind boggling.
Keep up the great work you are doing,
Kathy

Just found an article that I have not seen before .. Can download as PDF looks interesting with more straight forward explanations http://www.sciencedirect.com/science/article/pii/S0167814012004628

I have not found any others so far It is a pity that people do not return to the ACS sites to stay connected. I have left e recent message but no news from anyone so far. Any info on RILP is so limited. I will reach out again to the four ladies I had emails for. One like me is in a wheelchair the others I hope so very much have not progressed to that stage .

[…] http://peoplebeatingcancer.org/nerve-damage-aka-radiation-induced-lumbosacral-plexopathy-therapies/ […]

I am so excited to have found this today ..Helen

I have radiation induced lumbar Plexopathy from radiation for uterine cancer 14 years ago .. 2010 I had the first symptoms … Today my legs are paralysed since March 2015 .. I have started a blog in the hope of connecting with others and like you to build awareness of this late stage side effect of which there is so little information.. I too have read the ines you link to.. This is a link to my blog that I just started https://lifeinawheelchairblog.wordpress.com
Would love to hear from anyone who has RILP as feel very alone with this .. I live in Australia
Cheers Helen

I thought I would be first to post a comment. I was searching the web for anything that could help me as I am now beaching quite disabled and with that increasingly depressed as I feel useless and worthless. My story is that 27 years ago I had endometrial cancer and treated with extensive surgery and internal and external radiotherapy. Soon after I noticed sensory loss in my legs and later progressive weakness. I can still walk with difficulties but the constant neuropathic pain (burning, pins and needles) and sensory loss in my legs and feet makes movement very difficult.
Over the years I have tried many possible treatments but now I feel I have reached the end of the road for me. I wish I could write something more encouraging in order to help others who may read this but this is how I feel. I suppose I should be very grateful I have walked for so long when I know others have lost their mobility earlier than me.
This condition is a lonely road as I have never known anyone else with the condition and I don’t have any confidence in my medical practitioners as they have nothing to offer and this must make it difficult for anyone who wants to heal and bring alleviation of suffering.