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Radiation Late Effect Plexopathy

trishpm
Posts: 22
Joined: Nov 2004

I was recently diagnosed with lumbar plexopathy, a late effect of radiation treatment I had eight years ago for endometrial cancer. I am having difficulty walking. Anyone else with this problem?

ekinner
Posts: 1
Joined: Jul 2006

I know it has been months since this posting, but have you received any help for your lumbar plexopathy? My mom finished radiation for endometrial cancer seven months ago and was diagnosed with lumbar plexopathy. She is having trouble walking and is also having severe pain. Are you still having difficulty walking? How have you been treated for this? Any recommendations?

trishpm
Posts: 22
Joined: Nov 2004

I was told that there are no proven treatments for late effect radiation-induced plexopathy. There have been "anecdotal" reports of a few things that have helped patients (especially those like your mother who had radiation more recently): anti-platelet therapy (a baby aspirin a day), anti-coagulant therapy (Coumadin), hyperbaric oxygen therapy, and a combination of Trental and relatively high doses of Vitamin E. Because lumbosacral plexopathy is considered rare, there are no long term studies that prove that anything works for sure. There has been a long term study in breast cancer survivors with brachial plexopathy (that affects their arms) that showed that hyperbaric oxygen was not effective. Trental is used to treat neuropathic, pain, so Trental and Vitamin E might be somthing you mother could try. I am trying aspirin and Coumadin. I have not seen any improvement, but I am more than 8 years past my radiation treatment, and have only been taking it for a couple of months, and I've been told to give it a try for at least 6 months before deciding that it's not working. If it does not work, I may see if I can try Trental and Vitamin E (the must be taken together to work), even though I have no pain; only my motor nerves have been affected.

My walking has slowly deteriorated. I use a cane for short walks, a walker for long ones (like going to the mall), although I can make very short walks (like going into a restaurant from a car) without either.

There has been a long term study of breast cancer patients with brachial plexopathy, and patients continued to deteriorate and/or new cases appeared for 30 years after radiation. It is not very hopeful, but I am glad I am here to complain.

firstsister
Posts: 13
Joined: Sep 2009

My brother was recently diagnosed with post radiation myokymia lumbo sacral plexopthy. He has not been able to find much help in dealing with this situation as I understand it is pretty rare. His legs have gotten progressively weaker. Have you had any physical therapy? Has your condition stabilized? Do you still use a cane and walker? Thanks for any help.

blueroses's picture
blueroses
Posts: 527
Joined: Jul 2008

I read your entry with great interest because 3 years ago all of a sudden I developed a pain from hell in my lower back and have been on morphine for it ever since. I had total body radiation 18 years ago for nhl in a bone marrow transplant and localized radiation to the pelvis 2 years prior. Xrays resulted in no reason for this except for a little arthritis and lower back denerative disease which I think is pretty much the same thing. Now after seeing your post this makes more sense to me. I am going to talk this over with my GP next month. Also there is apparently a brachial plexopathy which is centered in the arm and shoulder area and I have had limited rotation there for about 2 years now, again no diagnosis. I believe these are all related to chemo/radiation, most likely radiation and is nerve neuropathy for both. Sometimes I feel like such a lab rat.

jsyorkies
Posts: 6
Joined: Jan 2009

Something made me come to this site yesterday, after having my Chemo and Radiation 17 years ago. I have so many aches and pains ~ My fingers have not worked right since my treatments and my lower back and legs and feet and hips LOL ! Geez pretty much my whole body. But I am now getting numbness in my left little finger and severe pain running down my lower back and down my hip and butt???? But every time I ask a GP they never have an answer~ So please if anyone has found something that helps let me know:) At least I know I am not nuts or a hypocondra? (SP) As my kids would say ! And Blue Rose I had the shoulder pain so bad in my right arm for about a year and ahalf just last year:( But it went away one day but it seems like it moves all over about 9 years ago I could hardly walk my feet hurt so bad and then it would go away and come back! Knock on wood that don't come back ~ Right now it is my lower back ~Hips and down my leg~ Geez Im falling apart and its been 17 years since my cancer dianosis . Hugs Shawn from Iowa

26feb2010
Posts: 1
Joined: Feb 2010

One morning in October 2001 I just got out of bed and my right leg refused to move. Following an MRI scan and various electric shocks to my legs and feet, the specialist diagnosed that I had Diabetic Lumbosacral Plexopathy. This was a fair diagnosis at the time, because I am diabetic, but when I was told that this would be corrected by better diet control I started to wonder because my controls and diet were perfect. (I'd only recently been told this by my diabetic consultant.)

In 2004, when I got access to the internet, I did some research and found an entry about Radiation Induced Lumbosacral Plexopathy. All the symptoms seemed to fit, leg weakness, muscle deterioration, drop foot, but all without any pain. Occasional ache in the buttock and thigh area, but certainly no pain. But the obvious link was that I had testicular cancer in 1972 which was treated with radiation therapy, especially as this type of plexopathy occurs between 1 and 30 years after the treatment. When I took my findings to my family doctor, he agreed with my diagnosis.

The deterioration has progressed over the 9 years since the first diagnosis. I initially had to use 1 stick to support my right leg when walking outside, but when the drop foot set in 2 years later I had to start using 2 sticks. For a while I was able to get about indoors without these walking aids by using the furniture to hold onto, but now I have to use both sticks inside the house, plus 2 rails to help me get upstairs, and have to use a wheeled walking frame and an ankle/foot orthosis outdoors.

The only time I can do without my walking aids is in the hydrotherapy pool, where I go for an hour every week.

Not being able to walk unaided is frustrating, but as I said before, at least I am without pain so I guess I'm one of the lucky ones. I just wish that someone would come up with something that would help us all.

UteGoddess's picture
UteGoddess
Posts: 3
Joined: Mar 2010

I developed Diabetes halfway through my radiation & chemo treatments in 2002. Four years later when I started to notice leg weakness, pain and a foot drop my physicians kept telling me it was diabetic related. I knew it was different because the first time I had numbness and tingling in my feet was when I had a radioactive implant about 3 months after my treatments. Finally, after quitting sports, many falls and complete frustration, a specialist diagnosed me with plexopathy due to radiation just last year. I was glad to know what was wrong but I have progressively gotten worse. I'm now using a walker (plus furniture, walls, etc. and whoever is around to help - lol) and between stairs (what a chore), work, my oldest playing high school volleyball, basketball and now softball, my youngest involved in tumbling, dancing and singing and me being a single mother - everyday life is truely hard (wah wah...get out your violins hahaha). I wish there was some sort of treatment or cure, but my physician told me that a wheelchair will be in my future. I guess life goes on and I thank God the radiation and chemo saved my life and for my friends and family who are willing to take me places and slow down the pace for me. Being positive is so hard sometimes, but after many pity parties I've realized that I have to be strong for my girls; plus, I'm alive to watch my girls grow up and support them as much as I can. My many trips to town for and waiting in the car for class, practices, games and rehearsals are so much more than extremely worth it!

pjjenkins's picture
pjjenkins
Posts: 173
Joined: Mar 2009

I am a 2+ year survivor of anal cancer and have recently been experiencing pain (dull aching type) in my right hip/buttock. As I am 66 and have long had minor problems with arthritis, I assumed that I am going to follow in my mother's hip replaced footsteps. She is walking at 88 now. Then, coming back for a "check up" on this Network, I find the discussion of post radiation therapy plexopathy. You mean my symptoms might not be related to a minor knee injury/arthritis that my leg no longer wants to lift me up the stairs or hills? It might be related to radiation damage?

I just had a bunch of diagnostic Xrays (more radiation!!!). I guess I will find out in a bit. Does it help to describe the pain and difficulty more? How the heck can one differentiate between "normal" aging problems and cancer consequences?

zizzi
Posts: 2
Joined: Apr 2010

I had radiation for cervical cancer in 1998 at the age of 47 and my symptoms started in 2001 with tingling in the bottom of my feet. My toes went numb, then my whole foot, then my ankles. It started on my right side first, my left side was about a year behind my right in symptoms and severity.
I was finally diagnosed in 2004 after many doctors just scratching their heads trying to figure out what was causing it. Nothing at all was showing up in MRI's or CT scans or bone scans, except that my sacral bone had been shattered at some point in my life (?). The final diagnosis was "Radiation Induced Lumbosacral Plexopathy".
I had 10 weeks of very expensive Hyperbaric Oxygen therapy in 2006 that did absolutely nothing.
I had to have a bifemoral bypass in 2008 (they replaced my abdominal aorta) because the blood supply to my right leg had been cut down to 30% because of arterial damage. My kidneys shut down in October that same year because they are being squeezed shut. I have to have stents replaced every 4 months to keep the urine flowing out of my kidneys.
I have no feelings at all in my feet, ankles, backs of my calves, partially up my thighs and buttocks and my genitals are completely numb. It is now entering my left knee.
Sexual relations with my husband is no longer possible. I have bouts of incontinence. I was walking with a cane up until this past Christmas season when I graduated to a walker. My legs are so weak now, I am having trouble lifting my self out of the tub and off the toilet. It feels like I am walking on stilts strapped tightly to my thighs.
The only saving grace to this relentless deterioration is I have no real pain. The muscle spasms, cramping, burning and "tight socks" feeling is tolerable.
I hope and pray that some day they can perfect radiation treatments so that this rare effect doesn't happen to anyone anymore, ever. It seems much worse than the original disease in that it is slow and torturous, and takes away so many pleasures of living life. I'm glad to have survived the cancer I had 12 years ago, but I yearn for the woman I was then.

getrealbar
Posts: 1
Joined: May 2010

I also was diagnosed with cervical cancer in 1997 and after having internal and external radation therapy, started to feel numbness in my left toes in 2005. My family doctor first sent me to a podiatrist. Nope, not here. As the symptoms progressed into the foot, ankle and up the leg, I was sent to a neurologist who kept sending me back to my oncologist because he thought the tumor was back. After multiple MRI's and CTs, the oncologist sends me back to the neurologist. The MRI shows that there may be a problem with the L5 on my spine and I am sent to an orthopedic surgeon who performs back surgery and he claims that after I have physical therapy, the feeling will be back in 3-6 months. Ah, no. As things progressively get worse, I go back to the neurologist who just scratches his head. Because there is considerable swelling in my foot and ankle, he's worried about blockage. So I'm sent to a cardiologist, who ofcourse, puts me through every stress test and doppler looking for the culprit. Nope, not here. The neurologist scratches his head again and sends me on my way to a arthritis doctor. That doctor says that he doesn't doubt me when I tell him that I have a problem, he just can't find anything wrong with me. The neurologist then does a complete blood panel making sure that it isn't lupus, lime disease or heavy metal poisoning. 3 years had gone by and I was using a cane because it had progressed up and over to my right leg. The neurologist finally sets up an appointment with a specialist at Shands Hospital in Florida who diagnoses the Radiation Induced Plexopathy. I have to self catheterize because my bladder can't empty itself and had to install hand rails all over the place. Can't get into a bathtub, and oh how I loved a long hot soak. I finally had an answer. But, no resolution. I'm told nothing can be done. It's been 5 years and I'm in a walker now and hope that the disease will plateau sooner than later. Make no doubt, I'm happy to be alive and the radiation saved my life, but the trade off is very rough and depressing at times. Good luck to all that have encountered this dreadful illness. And here's hoping that someone somewhere will find something to assist those that do deal with it on a daily basis.

inlaw85
Posts: 1
Joined: Jul 2010

Hello to getrealbar and all other posters!
All of your comments were quite interesting to me; I'm glad I found you.

My story is 4 or 5 weeks of radiation to the abdomen, after diagnosis of Hodgkins Disease, Stage 1A back in 1976. I subsequently went to law school and have been practicing law for almost 25 years. About six or seven years ago, I began having trouble walking, couldn't step up a curb and took some falls. I was diagnosed by a local neurologist, who advised me to use a walker.

After reading your posts, I realize how fortunate I am to still be able to get around with the walker, drive a car and continue plying my trade, which is very satisfying to me. I see the neurologist annually, and he tells me I'm getting worse. It must be a slow progression, though, because I don't really notice on a day-to-day basis. I do tire easily and have considerable low back pain, but have to consider that I am rapidly approaching my 69th birthday.

I was disappointed to read that Shands apparently diagnosed you, but was unable to offer any remedies. (Shands or Mayo were options I was considering as a next try.) It does help to know I'm not alone, and hope you will all put up with my 2cents now and then.

JMa
Posts: 1
Joined: Nov 2011

You described everything I've been struggling with! I am a 21 year Cancer Survivor. I received both interal & external beam rad treatments for inoperable cervical cancer in 1990.
The progressive numbness & weakness in feet & legs has been creeping up into my thighs & butt. I also struggle with embaressing incontinence. I do have pain in legs and have been trying any kind of alternative kind of pain relief. Really don't want narcotics. Right now going through acupuncture.

I use lots of assistive devices to get me through the day. I use a cane or walker daily and just received a scooter for distance. My foot drop gets worse as I get tired.

I have an elevated toilet seat,grab bars,& transfer bench in bath room.

I live alone and still work. Struggling to maintain my independence so will try anything device that can help. My biggest fear is not being able to drive because sometimes my feet are so numb that I can't distinguish when I'm stepping on brake or accelerator.

My question is about disability. I am considering a medical disability from work. Has anyone applied for Social security disabilty? What was your experience?
Thanks for listening...

wetz5526
Posts: 13
Joined: Apr 2010

At the age of 31, I was diagnosed with colorectal cancer followed by radiation treatments. About 2 years ago, I was diagnosed with myokymia lumbar sacral plexopathy as a result of the radiation. Looking back, I can say I had some symptoms of late effects but everything was very tolerable up until about 6 years ago. I have always been very active so to see my legs progressively get worse over the years is very frustrating for me. My symptoms are; buzzing, aching, twitching, tightening, balance issues, drop foot and some jerking with my feet and fatigue. These symptoms are constant (they never go away). Some days are better than others. The worst part is at night when I'm trying to get to sleep or sit in my recliner to read. It sometimes feels like I'm sitting on nerve in my sitting bones and have to get up. I also find that I cannot walk as far as the symptoms then increase and I also feel fatigued. I have seen a neurologist who put me on gabapentin but I don't think it's helped that much - if anything it might have cut down on some of the tingling. I have also tried a muscle relaxant but couldn't tolerate that at all. I do take vicodin at night when needed to help my legs relax and get to sleep. I have also seen an acupuncturist ~ that got to be rather expensive and I wasn't seeing very good results. I do a lot of yoga stretching at night before bedtime as it helps relieve the awful tightening feeling in the buttock/thighs. I am lucky in the fact that I do not have to use a cane or walker....yet. I can still go on my walks but it's a much shorter walk than I used to be able to do. My husband says I "kick a lot of rocks" when I walk. When I'm done with the walk, I find it much harder to lift my feet and the symptoms get worse. I'm sorry but I can't answer your question about disability. It's good to talk to other people that also suffer from late effects of radiation....it's good to know I'm not crazy and not alone in this struggle.

UteGoddess's picture
UteGoddess
Posts: 3
Joined: Mar 2010

I was very athletic and thought my weakness was from arthritis and damage from my 3 knee surgeries. Finally I went to a neurologist and that's when I was diagnosed with the plexopathy. I hope that this is not your case - your in my prayers.

jazzy1's picture
jazzy1
Posts: 1387
Joined: Mar 2010

I was diagnosed with uterine cancer last year and completed all my treatments (chemo & external pelvic radiation) last July. The only real side affects are pain in my hip or what my chiropractor calls, Sacroilliac. Doesn't seem like the adjustments are really helping, but on the positive side I do have many non-pain, good days...crazy to figure out!! I'm quite athletic with fast walking, or running if feel good, free weights and yoga. Do this every day of the week for approx 50-60 minutes per day.

Before treatments had a bone density done (my first) which showed "thinning" in the tip of the hip area. My oncologist doesn't feel it's cancer and my numbers don't reflect any issues either...good news! Last time we spoke he told me he won't do MRI, just the standard CT for my cancer and I should go to my PCP. DOn't have one as I changed insurance and need a new one.

After reading about radiation induced lubosacral plexopathy I'm wondering if this could be my problem. Does anyone agree it could be issue for me? I can't say I'm using cane, not that bad, but do notice tightness in buttocks/pelvic area when first standing and walking. My chiropractor also mentioned could be start of arthritis.

What type of doc should I go to for testing and to give me help? I'd love to really know what it could be and then know how to treat. I've heard of many of us with pelvic type radiation who are in misery...lots of issues with on-going pain.

I'd appreciate any input....

Thanks
Jan

UteGoddess's picture
UteGoddess
Posts: 3
Joined: Mar 2010

I am so sorry to hear about your problem. I was went through radiation and chemo treatments in 2002 and just last year I was diagnosed with the plexopathy. I enjoyed basketball and volleyball up until late 2005 when I was forced to quit but didn't know what was going on. My suggestion would be to see a neurologist and ask him to look into you condition and to consider lubasacral plexopathy. I went to so many doctors and wished it wouldn't have taken 7 years to figure out what was going on. I pray that this is not your case but I would ask my doctor lots of questions about plexopathy. Hope my input helps! Leslie

mickey25
Posts: 3
Joined: Sep 2010

Was treated with radiation in 1987 for Hodgkins. Noticed tingling along spine during treatment. Oncologist said it was such a rare side effect that they did not mention it.
Diagnosed with radiation induced plexopathy about four years ago by an EMG performed by a neurologist. Diagnosed confirmed by neurologists at Cleveland Clinic and University of Michigan.
Have been seeing neurologists at UM every six months and plan to be seen every 12 months as of May 2010. Have completed two four-week sets of physical therapy. Have improved balance and walking, but no improvement to drop foot. Left leg still weaker than right.
Saw ankle/foot specialist this week and he recommends surgery to move tendon from arch area to outer edge of foot in effort to straighten foot (currently turned inward) and allow it to land flat when I walk (now land on outer edge of foot).
No pain ever. Only sought treatment and got disagnosis after I could barely walk back from an errand three blocks away.
I am 47, female, with no recurrence of Hodgkins, but was diagnosed with breast cancer in January 2009. Was not candidate for more radiation; had bilateral masectomy and reconstruction. Am fine other than the difficulty walking. Do not use walking aids. UM neurologist said I could end up in wheelchair, but I'm determined to keep doing physical therapy exercises at home and to keep looking for answers.
Hope this helps. Look forward to learning more from all of you.

zizzi
Posts: 2
Joined: Apr 2010

I was wondering if any of you might want to form a small support group for us plexopathy diagnosed cancer survivors. Nothing obligitory. Just a few friends to e-mail with woes and complaints when an ear is needed. This is a torturous and lonely raod and only we know what we go through daily.
I'm 59 this Sunday, female, no career, crafty. (not usually so sociable)

getrealbar, inlaw85, mickey25, anyone????? What do you say? E-mail me if you need a friend to talk to about this once in a while, I know I sure could use one.

bergie@pcisys.net

bluerose's picture
bluerose
Posts: 1089
Joined: Jul 2009

I have posted about this before and with my chemobrain I will probably be repeating myself but bear with me. New people might like to see a new post on this.

I have been a cancer survivor for well over 2 decades now, dang I'm old, lol. Anywho I have a ton of after effects for treatments so long ago and note that MY TREATMENTS WERE LONG AGO but today patients still suffer with less time in survival than I so I think my posting could be of some benefit I hope to everyone with pain issues after treatments.

Just recently I finally got up the nerve to do a test I found out about from this site, it's called a nerve conduction test. A neurologist does this type of testing so you would have to be referred to one for assessment and possibly the test istself if he/she feels you might have nerve damage - history of chemo drugs/rads no doubt will get you the test if you show signs of tingling in your extremeties mainly but any kind of numbness, tingling or pain even in your back.

The test isn't the worst to go through. They put some mild electrical charges through various parts of your body where you are reporting issues, just the ones behind my knee were a little more irritating but generally it wasn't a big deal. They can also do other testing for muscle weakness and issues where they insert a kind of an acupuncture needle where the complaints are and that doesn't hurt much at all, at least mine didn't cause I was numb there anywho, sheesh, lol.

The neurologist, here anyways, gives you immediate feedback as he sees the results instantly on the machines that are monitoring the responses you have or don't have to the shocks. My diagnosis was nerve damage doubtlessly caused by chemo drugs. and perhaps rads. Rads were sited as possible causes of my lower back disc degenerative disease which I thought was my arthritis and it's part of it but the other part they feel were the chemo drugs - some of them they say can do this kind of damage. Vincristine, a chemo drug, that I had was notorious for causing nerve damage, not sure if they still use it or not. My guess is that if they do still use it they probably monitor it more or give maybe lower doses if they can. Other chemo drugs can cause the damage too but I don't remember what they were because I have chemobrain from the treatments too so see how that works? lol.

I also had to have a CT of my back, yet again - I glow in the dark after two plus decades of CTs. That was BEFORE they realized they let off rads. Sheeesh.

Now I also see another neurologist about memory and confusion issues and after a CT of my head and some memory testing and exam have concluded - yup - chemo and perhaps rad damage from certain chemo drugs and rads to the head. Duh, no kidding. lol.

There are things people have tried to get relief from nerve damage and there is a list on this site somewhere but ask the neurologist and research the site here and in other reputable sites online.

Above all, trust your gut. If you think you have a medical issue then seek out help and if the first specialist shrugs you off find another one who doesn't. I knew for instance I had fibromyalgia years before it was finally diagnosed - by a rheumatologist is the way to go there, at least in Canada that's who does fibro. diagnosing, and although some dismissed my pain I finally found one who didn't. Don't give up. I personally think fibromyalgia is linkied to all this nerve damage from treatments too but hey that might just be me. It makes too much sense.

It's a challenge to stay on top of all of our after effects, which ones are just aging and which aren't. As my neurologist said about my chemo brain 'we are seeing long term survivors with this kind of issue with memory and confusion from treatments'. Wow that's nice to hear that kind of validation, even if the info does suck, rather than being told 'um, have you seen a shrink lately?' to explain our mental issues with memory lapse/confusion. I had to deal with that years ago before they started to see so many survivors with these issues and have done more research in it all. Validation is golden to a survivor - and by the way - you AREN'T NUTS. If a doc seems to be suggesting you don't feel what you know you feel - on to a new doctor.

All the best.

Bluerose

gail03
Posts: 11
Joined: May 2011

Hi Bluerose...thanks for all your info...have just been diagnosed with radiation induced plexopathy yesterday after years of tests and doctors including shrinks...was so sick of being told it was in my head...bit depressed at the moment but am determined to find something that will help without using canes etc....it has taken 8 doctors to have this confirmed...and I think we need to educate GPs about it...my cancer was almost 9 years ago...again thanks for your input..glad I found this site. I thought I was alone in this...

csulli
Posts: 2
Joined: Dec 2011

Hi gail03. I was diagnosed about a year ago after seeing many doctors including MD Anderson. Finally a doctor from Baylor diagnosed me. I still have a hard time wrapping my head around it. MD Anderson still insist that it is not plexopathy. I have had every test under the sun and still it is progressing. I am 47 and had radiation in 2005. I actually considered going to the Mayo Clinic for another opinion. It does appear to be rare. I spoke with my Radiaologist from 2005 and he suggested maybe taking Trental. I am going to look into it. Hope all is well.
Colleen

gail03
Posts: 11
Joined: May 2011

thanks Colleen ...so glad to hear Iam not alone...I live in Australia and it's so nice to realise that other people across the globe are so caring...we have a bad attitude in Australia...everyone says stop whinging...and be thankful you are still here..which I am..but I can't seem to stop thinking the cancer is back...won't know untill next month...my neurologist said "you are in deep ****" ...what the hell does that mean...will just have to wait and see......hope all is well with you too...

yorrick
Posts: 1
Joined: Jan 2012

Hi Gail and others reading this discussion board. I had radiation treatment for testicular cancer 30 years ago and have had side effects from about 2 years after last treatment.It was pretty minor at first, just a slight limp and foot drop, but has now progressed to me having to wear splint type orthotics and needing a crutch for long walks. It has seemed to stabilise in my left leg and its been the same for 10 years or so. My right leg got very weak a few years ago and, like you, I had fears that some type of cancer was back. After tests and a third visit to my neurologist he finally used the words radiation plexopathy and suggested 3 things. 1. try and keep weight down 2. swim as often as you can(aerobic) 3. see an orthotic specialist. I have done all three and now that I have retired I've also joined a gym and do a programme of leg strengthening exercises 3 times a week. So, what is working??? The gym and swim routine is having a noticeable effect. I can walk without my orthotics over short distances. The orthotics help with balance and make walking possible over long distances. The leg strengthening has really helped and I can feel it getting stronger every time I go. Riding a bike also helps. My philosophy is use it or lose it. I'm sailing to South East Asia this year with my wife as part of a rally and we will carry on up to Malaysia by Christmas. This side effect can really be upsetting at times as mobility is a fundamental need for us all. I walk with a very obvious swing and limp and I get stares every time I go out. I just say quietly to myself that this is not going to beat me and bravo for having the guts to give it go. cheers and hang in there.

vitobayer
Posts: 2
Joined: Sep 2012

Lumbosacral plexopathy can result when radiation, used in the treatment of various neoplasms, is directed toward management of abdominal and pelvic malignancies.

Anatomically, the lumbosacral plexus consists of lumbar (L1-L4) and sacral (L5-S5) portions, which are connected by the lumbosacral trunk (L4-L5). The L1-L4 nerve roots transverse through the psoas muscle and then coalesce into the lumbar plexus, which then divides into anterior and posterior divisions.
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The first 3 nerves (iliohypogastric, ilioinguinal, and femoral) of the 7 major branches of lumbar plexus provide motor and sensory innervation to the abdominal wall. The next 3 nerves (lateral femoral cutaneous, femoral, and obturator) innervate the anteromedial thigh. The femoral nerve terminates in the saphenous nerve providing sensation along the medial aspect of the leg.

Alan_Chantler's picture
Alan_Chantler
Posts: 1
Joined: Feb 2013

Hi everyone

I was diagnosed with testicular cancer in 1982 and, following surgical removal of the offending article, I was given very high dose radiation (35 Gray). Fast forward to 2005 and I was having problems walking with loss of proprioception of the feet along with pain in the hip. After a lot of misleading sessions with GP and consultant ortopaedic surgeon an MRI scan revealed a very large tumour growing out of my lumbar spine. This was removed and all was well for about a year. Then the loss of proprioception began again, together with foot drop and difficulty walking. Further MRI scans reveald a canal stenosis at L2/L3 so I was operated on for decompression. This was repeated a year later with further decompression. Later nerve conductance tests showed almost total loss of nerve function in the legs and feet.

This week I have at last met a Neurologist. He has told me that my presentation and symptoms are typical of Radiation Induced Lumbosacral Plexopathy. He also thinks that nothing will give me back my loss of mobility or ability to stand again.

Does anyone out there have any experience of recovery from a state such as mine?

colleen777
Posts: 2
Joined: Feb 2014

I too have radiation induced plexopathy.  It is so hard to hear the words "no treatment" for this disorder.  I am an RN and kept searching doctor after doctor.  18 months ago after having all the typical symptoms , I searched out one more option.  They too indicated no treatment no cure.  We found a study regarding the use of coumadin in these patients.  It was only a study of 11 patients.  They saw an improvement in low dose coumadin over 6 months.  In September of 2012 I decided to give it a try.  Wow! What a difference.  I have been on it since.  My walk is stronger, longer and my numbness and tingling almost gone.  I can wear heels instead of flats now:)  I still have much eifficulty with stairs up and down, but I have improved significantly!  I used to not be able to step up or down curbs.  Now I can step down them and up smaller curbs.  I will be happy to speak with anyone about this treatment.  Yes, I said treatment.  There is a treatment!!!!   email me at confection7@gmail.com  please write treatment in the subject box so I don't delete you.  

Kind regards, Colleen

Houston TX

gail03
Posts: 11
Joined: May 2011

hi zizzi ..hope you are still out there...I live in Australia and there are no support groups here...doctors don't even seem to know much about it...I had cervical cancer 9 years ago....Iam 57 year old and have been having a lot of pain lately...no-oe seems to want to hear about it...am having another mri next month and am terrified the cancer is back...my leg is numb and tingling and the pain is in my right buttock, hip and knee...it never goes away..the neuroligist diagnosed radiation plexopathy and says the mri is just to confirm but I am not convinced..I have not been given any medication and my walking is getting worse...I am very grateful to be alive but had no idea this could happen...and yes ..it i a very lonely road....I will e-mail you if you reply to this...thanks..

wetz5526
Posts: 13
Joined: Apr 2010

Hi Gail,

I am a 55 year old female and was diagnosed with radiation plexopathy about 2 years ago. I had colon cancer at the age of 31. Looking back, I always had some symptoms but was tolerable up until about 7 years ago when it got worse and I developed more symptoms. My symptoms are; constant (never goes away) aching, buzzing & tingling, twitching, weakness, balance issues, tightening feeling - all from my buttocks area down to the tips of my toes...it's actually painfull because these symptoms never ever go away. It drives me crazy. My Neurologist put me on gabapentin which has helped a bit with the tingling but that's about it. The worst time for me is at night when I'm relaxing in my chair reading or trying to get to sleep...the constant twitching and aching in my legs causes me to not be able to get to sleep. I have tried muscle relaxants which I couldn't tolerate. I currently take vicodin at night which does allow me to get to sleep. I also do accupuncture which helps a bit for a few days but that's about it and none of the symptoms ever go away. I also do some yoga as stretching the muscles does feel really good.I have always been an active person so not being able to do the things I once used to is very frustrating however I do still try to walk daily and do a few weight strenghening exercises because I know if I don't, it will get worse however by doing the exercises amplifies the buzzing, tingling,aching and weakness - it's kind of a catch22. I just wish there was that "magic" thing you could do or take to make it goes away. I too am very grateful to be alive today and thankful for a wonderful husband and kids that are so supportive but yes, it can be a very loanly road at times knowing that there just isn't much anyone can do for us. Having this site and talking to other people that are going thru what we are is very helpful....Take care, Barb

jazzy1's picture
jazzy1
Posts: 1387
Joined: Mar 2010

I've been dealing with hip pain since completing treatments (which included pelvic radiation...33 rounds) July, '09. Doc tells me pain isn't cancer and x-rays show sciatica issues. As I read a few of your symptoms with hip, buttox, leg and knee pain that sounds like sciatica. I go to a chiropractor every other week, and if not for this doc I'd be in awful pain.

When I bring it up to my oncologist he tells me no cancer, so be happy and go see your PCP. Don't think we're hearing docs as observant of the LT side-affects from treatments. This is another chapter in our cancer journey...gee!

Hugs,
Jan

gail03
Posts: 11
Joined: May 2011

thanks everyone...still waiting to have my mri..takes time...another 3 weeks ....have started doing more walking and strenghtening exercises...it feels better when I do...just have to go through the pain..I'm not on any medication for it...a bit of panadol occassionally...I thought my pain was sciatica..exactly the same...docs are disagreeing on this...have decided to try and manage this myself..docs can continue disagreeing but I need to move on...even if the outcome of the mri is not great...I do not want this bloody disease controlling my life...I just think there should be more research into this...it takes way too long to diagnose...and we all think the cancer is back...I can no longer work and my leg gets so weak..it's frustrating..I fell over trying to climb on a chair the other day...anyway I suppose we all have to pick ourselves up and keep going...there is so much to live for....hope everyone on this site is doing ok..xxx Gail

gail03
Posts: 11
Joined: May 2011

I still find it difficult to accept that they can't do something for it...also I didn't have the slightest idea of what it was or what was wrong with me until I found this site...I was even sent to a psychologist who thought it was all in my head...ridiculous in this day and age..

jazzy1's picture
jazzy1
Posts: 1387
Joined: Mar 2010

I'm right there with all of you as my posting early mentioned my lower back and sciatica pain. No cancer, so guess I'm on my own to get to some other doc. I'm not a person to go to doc for every ache and pain, so trying lots of things. What I've found as someone else mentioned, movement helps tremendously!!! I've been a huge exerciser from age of 18 yrs and now I'm 55 yrs. I do lots of stretching with yoga and workout (can't run, those days are gone due to the lower back pain, plus advised by my chiropractor) 6 days a week for almost an hour. I do low-impact exercises with walking and/or elliptical equipment at the gym. I might be really tight and feel some pain prior to working out, and after I feel really good.

This is what I do and know each of us is different and we all had different treatments. I for one had uterine cancer (Feb '09) with 6 rounds of chemo and 33 sessions of external pelvic radiation. My pain (started Dec '09) in lower back as mentioned, so I'm attributing it to radiation. As many have said we wish the medical industry would get up on these side affects, but not there or possibly not care. I'm really tired of my oncologist and radiologist tell me "well you have no cancer, probably due to arthritis from aging". I've become my own advocate to research other options. Now if my pain were that bad, I'd be in a docs office, but not there yet. Hate to think I could be like many posters, who are years and years away from treatments and using canes and on disability.

One thing I've read there are some after treatment type facilities who are up on side affects like we're all noting. As I look further, only looking for young patients something like 20's.

Great topic...
Jan

shugu12
Posts: 4
Joined: Jan 2012

My mum had a hysterectomy in 2008.She had complained about heavy bleeding during her periods. On diagnosis we found there was a fibroid growth in the uterus. The gynecologist suggested to remove the uterus and the ovaries. After the hysterectomy,the fibroid was given for biopsy which resulted to be negative for malignancy test. In April 2011 she developed the symptoms of severe back ache and loose motion. On diagnosis we got to know about the metastatic Adenocarcinoma. The primary was unknown and still is. She has undergone 6 cycles of chemotherapy( taxol + carboplatin).She had CA-125 level up to 310 which got increased up to 698 after the first cycle of chemo. From there it got down to 63 after 6 cycles of chemo. Currently she is on oral Chemotherapy(Xeloda - 500mg). After 6 cycles of chemo the latest PET CT scan shows metastasis to bilateral pelvic lymph nodes, retro peritoneal lymph nodes,right retrocrural lymph node, omen-tum and left adrenal gland. Doctors are not sure of the surgery.If the surgery will help her.If they are able to remove the lumps completely. They say they will try to keep very less residue in the body.As in, they will try to remove as much as they can. But they are not sure if they are able to completely remove it or not. I don't know what to do. Can't figure out what is the right decision. They say it is an inter-operative decision. I don't want the doctors to open up her abdomen and decide to back out and close it back again. They say even that might be the case. I Can't afford to give her more pain. She is already in pain. She has lot burning sensation in the stomach now. Anybody who knows anything about this please help me.Any info you guys have might help me. Please Kindly Reply. God Bless All.

maryonearth
Posts: 1
Joined: Jan 2012

Jazzy1, I just found this website today looking for answers for my daughter. Quick recap,
she was diagnosed with stage IV Ewings Sarcoma (a childhood cancer) in 2009 at age 16.
15 rounds of intensive chemo, 4 or 5 lung surgeries (for metastises) 6 wks of radiation to her hip/pelvis, stem cell transplant, full lung radiation. She still has microscopic cancer cells in her lungs according to pathology in Dec 2011. She has nerve damage causing lumbosacral plexopathy which started about 1.5 years after radiation to her hip. Thankfully she has no pain, but is unable to walk without a toe-to-thigh orthotic. We saw a neurologist in Minneapolis who sent us on to U of Michigan, but all they are doing is monitoring it. She does PT and wears the orthotic. Your last post mentioned facilities or studies looking for 20 somethings? She is now 20-years-old. Where do we sign up? Thanks!
Maryonearth

jazzy1's picture
jazzy1
Posts: 1387
Joined: Mar 2010

I did find the link to late affect facilities for adolescents. Thusfar, I've not found any for adults....boohoo!

Sorry to read about her health issues, but happy she's getting help with orthotic and PT. Just a battle not only to get thru a cancer diagnosis, then side affects from treatments. No doc prepared me for this one....did they for you?

If you don't mind, plse me know how this turns out for you and if had luck finding a late affect facility.

Jan

http://applications.childrensoncologygroup.org/Surveys/lateEffects/lateEffects.PublicSearch.asp

jazzy1's picture
jazzy1
Posts: 1387
Joined: Mar 2010

oopsie!!! fingers are going crazy here....sorry

gail03
Posts: 11
Joined: May 2011

got my mri results ..neurologist calls it radiation neuritis..can't find anything about it...am still excercising..it helps for a while but only until the next day...no meds. ...nothing...just put up with it..not going near doctors again ...sick of it...I waited 3 years to hear that...

wetz5526
Posts: 13
Joined: Apr 2010

Has anyone gone to a Physiatrist for problems due to late effects of radiation and if so, did it help? My Dr. is referring me to one to see if it might help with all the effects I am having. I was diagnosed with lumbar sacral radiation plexopathy over 2 years ago and my symptoms just continue to get worse. My symptoms are constant twitching, buzzing, aching/pain, weakness, fatigue from my hip area all the way down to the tips of my toes. (I had colon cancer 25 years ago at the age of 31).It just never goes away. I have seen a Neurologist who put me on gabapentin but I don't think that helps much if any. The hardest time is at night - I can't get my legs to calm down. Very frustrating these side effects but also very lucky and happy to be here. Thanks, Barb

alicearc2
Posts: 1
Joined: Sep 2011

I have found that requip works to quiet the twitching and enable sleep.

jazzy1's picture
jazzy1
Posts: 1387
Joined: Mar 2010

Sorry to read this new diagnosis. As I re-read your first posting you noted pain in right buttock, hip and knee. Mine is definitely in left buttock and moving down my leg. I do go to chiropractor which helps relieve the pain...and have good and bad days. It's about the worst right now. Going to chiropractor tomorrow and scheduling appt with PCP to have some scan done. Oncologist claims not cancer, go see my PCP...well he told me hum?

Just letting you know you're not alone. Do you take any over the counter type meds like Aleve? Might help inflammation which is part of the problem.

Keep in touch and best of luck...I'll google radiation neuritis and see what I can find.

Hugs,
Jan

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Auzzie123
Posts: 8
Joined: Dec 2013

I have to say that to get a diagnosis is in many ways a relief as I now know what is happening... It just seemed crazy to find ones self walking slower and slower, not being able to run or even hurry across a road.. Thought maybe I was getting old and crazy!!! I too Gail have a plan for myself to follow as not holding my breath that there will be a rehab program for this !!!

Auzzie123's picture
Auzzie123
Posts: 8
Joined: Dec 2013

Hi Gail I live in Sydney Australia and was diagnosed with Lumbar Plexopathy two weeks ago... I found this forum after much searching and if you would like to email that would be great to have contact with someone else in Australia. My email is helenbrd@bigpond.net.au there seems to be so little information available.. Will do a post and see if anyone else responds .. Hope to hear from you ... 

beadnsue
Posts: 2
Joined: Feb 2012

Wow   I am surprised to find others with this diagnosis. After uterine cancer (sarcoma) and 25 external radiation treatments (in 2002)  I was diagnosed with radiation induced lumbosacral plexopathy in 2006.  It has progressed some, but i work very hard to stay active. I am afraid it will get worse.  My feet have flattened due to atrophy, my legs jump, there are numb spots all over my legs.  

I walk 3 miles daily to keep my tendons working where muscles have 'died'    Lately there has been a lot of pain in one of my feet where the muscles just don't exist any more.I have begun to ice it. 

The Dr I just started seeing is the first ever to pay attention to the symptoms. Usually I get 'well, you're lucky you don't have tumor, and if that is all that is left from your cancer, that's livable'  

Physical Therapy helped a lot when I was diagnosed as I was beginning to show foot drop.  There is no strength in my toes, I have issues climbing hills, having to lift my left leg with my upper leg muscles. I can't keep shoes on that don't have a back. 

My new Dr prescribed lyrica and it is helping with the leg pain and 'restless leg'  type symptoms.  I also take a pain medication.  Sometimes ambien so I can sleep through the leg jumpiness and pain. 

The worst is riding in the car or on a plane, but I just don't want to give in. 

Has anyone tried a brace for their foot?  

 

 

wetz5526
Posts: 13
Joined: Apr 2010

WOW, I too have all the same symptoms you mention. At the age of 31 I was diagnosed with colon cancer (I am now 57), followed with external radiations. I've always had some symptoms but was very tolerable up to about 10 years ago and boy did they hit all at once. I have a part time desk job and it's even hard to sit for very long, it sometimes feels like I'm sitting on a nerve. I have to get up a lot and move my legs. My legs ache/hurt all the time as well as the twitching numbness etc. It feels like the muscles and tendons in my legs are dying or hardening - It just never goes away. I tried Lyrica but the side effect were awful. I take gabapentin and the side effects aren't as bad. I too take a pain medication (mainly at night). It is so hard to sit and relax in the evening too because the legs start jumping and aching worse. There are many nights I wake up during the night with painful legs and pretty much wake up every morning with them hurting. I too try and walk everyday but can only make it 1 to 2 miles (I used to walk 3-4 miles) and of course when I'm done, the legs are really twitching/aching and I too find that if I don't  force myselft to walk, then one day I won't be able to. It's so frustrating. I find stretching and taking a hot bath every night feels good. I also saw an acupunturist and while I felt it did help a little, it was only for a day or too. Yes, I too am very thankful to be here, BUT it would be nice if there was more research done on late effects and treatment for it. Good luck to you.  Barb

Auzzie123's picture
Auzzie123
Posts: 8
Joined: Dec 2013

Hi All I live in Sydney and two weeks ago was diagnosed with Lumbar Plexopathy... So little info seems to be available but I did find this forum thank goodness as I feel the real info comes from the patients not the doctors!, I had Uterine cancer treated 12 years ago which included 28 rounds of radiation... I have Lymphedema in my left leg which started straight after treatment.. How ever I was never told about other side effects.. About two years ago I started to notice pins and needles in my feet this progressed to some numbness.. However I thought it was caused by the Lymphedema.. March 2013 I had surgery to transfer lymph nodes from my neck to knee to help the Lymphedema in my leg.. I found my recovery very slow and the leg was a problem.. I now had pins and needles and numbness in both feet and weakness in my Lymphedema leg.. Climbing stairs, up slopes very difficult in fact I has slowed to a very very slow pace.. From being very fit everything was difficult.. I knew something was wrong that this was nothing to do with surgery or Lymphedema so I got a referral to a neurologist... Two hours later he told me he believed I had Lumbar Plexopathy!!! I still have to have an MRI, neurological study, blood tests etc to eliminate other issues.. I am due to see him again on 12th ;February... I gather there is no treatment and that the nerves continue to degenerate.. Has anyone found anything that helPs. ?? At this time I am walking and doing some gentle exercises to retain strength.. Have no idea what else to do other than to look after my health as best I can...look forward to hearing your comments... 

Tesseb
Posts: 1
Joined: Feb 2014

Hi.  I live in South Africa and have recently been diagnosed with post radiation plexopathy after undergoing a back operation, to no avail!  26 years ago I had a total hysterectomy followed by 25 radiation treatments due to uterine cancer and for the last 7/8 years have been struggling with loss of muscle strength and parasthesia in my left leg which was thought to be due to a pinched nerve, hence the decompression.  I now have to use a crutch when leaving home as walking any distance is almost impossible as my right leg is beginning to show the same signs..  I have no definite pain but do struggle at night with cramps, stabbing pains and pins and needles and most nights have to take a sleeping pill.  I am saddened to hear that there is no help for this condition but am enquiring if anyone else had heard of stem cell therapy and if this is advisable and/or helpful.  From an active gym-goer and avid walker to being almost house-bound, I would consider any treatment if there is the lightest chance of it helping.  Await some comments

colleen777
Posts: 2
Joined: Feb 2014

Hi Tesseb,

I too have radiation induced plexopathy.  It is so hard to hear the words "no treatment" for this disorder.  I am an RN and kept searching doctor after doctor.  18 months ago after having all the typical symptoms , I searched out one more option.  They too indicated no treatment no cure.  We found a study regarding the use of coumadin in these patients.  It was only a study of 11 patients.  They saw an improvement in low dose coumadin over 6 months.  In September of 2012 I decided to give it a try.  Wow! What a difference.  I have been on it since.  My walk is stronger, longer and my numbness and tingling almost gone.  I can wear heels instead of flats now:)  I still have much eifficulty with stairs up and down, but I have improved significantly!  I used to not be able to step up or down curbs.  Now I can step down them and up smaller curbs.  I will be happy to speak with anyone about this treatment.  Yes, I said treatment.  There is a treatment!!!!   email me at confection7@gmail.com  please write treatment in the subject box so I don't delete you.  

Kind regards, Colleen

Houston TX

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