Nerve damage from radiation

Stacey46

ChristyL said:

Scar tissue and radiation
I have a very similar situation, pelvic radiation (through hip flexor) 6 years ago, started with the neuro/weakness/fatigue/balance/walking problems 2 years ago. I have had every test out there, and there is "nothing wrong with me." I even got the "we need to consider a psychological problem" conversation. Thanks doc, but I am pretty sure the problems with my walking are CAUSING me to be crazy, it's not the crazy causing the walking problems.

I just recently found a treatment that seems to be helping, though. I have been seeing a myofascial release practitioner (MFR). It's kind of hard to describe, I'd say it's a combination of deep pressure massage and stretching at the same time. It's different than regular massage and different than physical therapy. The idea is that the scar tissue and adhesions from my surgery and radiation is restricting all the muscles, nerves and fascia in my hip/pelvis, and the fascia needs to be "unwound." Not sure if there is any real science behind it, but whatever...it's not like science has given me any help!

Anyway, I've had six treatments, and am walking noticeably better. I wouldn't say I'm 100% or anything, but the fatigue is improved somewhat and I feel more hopeful.

So, just thought I'd share my experience in case it can help someone else. Hang in there, everyone!

Radiation effects
I am so happy to find these posts. I had pelvic radiation Sept. 2011. I am just now feeling so stiff when I get up from sitting too long and get real sore after activity and housework. I am scared that I'm having reoccurrence. I will be having a PET scan next week to decide the cause. I am pleased to hear so many also have pain. It is better than the alternative. If it is benign I can go forward with all these ideas to relive the symptoms.
I love your attitude. Most doctors don't get it at all. Good for you ChristyL

CMCBADD

Stacey46 said:

Radiation effects
I am so happy to find these posts. I had pelvic radiation Sept. 2011. I am just now feeling so stiff when I get up from sitting too long and get real sore after activity and housework. I am scared that I'm having reoccurrence. I will be having a PET scan next week to decide the cause. I am pleased to hear so many also have pain. It is better than the alternative. If it is benign I can go forward with all these ideas to relive the symptoms.
I love your attitude. Most doctors don't get it at all. Good for you ChristyL

Pelvic Radiation effects
Stacey46;
I too finished pelvic radiation, for prostate cancer, in Sept. 2010. I am a runner and work out in the gym 3 times a week. I find I also get sore if I sit too long or in the morning when I get out of bed. As an early morning runner it is unnerving to have to struggle out of bed yet can still run no problem after I loosen up a bit. I also notice that the groin muscles (inner leg at upper joint with hip) often ache after running or a heavy lower body work out. As with you, I first thought the cancer has returned and is affecting the muscles. However, it appears the cause is tissue damage to the muscles which can appear up to two years after completion of the radiation.
As a very physically active individual, I have been a challenge to my treatment team. However, I believe activity, healthy life style and a positive attitude will get us through this.
Best of life to you Stacey46.

nonichol

juliamary said:

Leg and hip pain
Hi everyone i also have been having leg pain and i have noticed now after 9 months that my right hip is very weak, also recently i have been having a lot of fatigue, so so tired, trying to keep exercising, but not helping, keep thinking that the cancer must be comming back. has anyone else having these issues?????
Julia.

leg weakness
Hi,
I just had another bad pap (so I qualify on this section of the site too), had laser treament on cerivix in 97. Testing again in a few weeks to see stage of cell changes. I have a pap every year, so really expecting no big problems.
Pelvic radiation and chemo for anal cancer two years ago. I see all these issues with leg pain, so I have just accepted it as a fact of my NEW life.
However, my cat scan in March showed a blockage near the pevic bone in my illiac artery, which is the apparent cause of my leg weakness. I don't have high blood pressure, high cholesterol, or a family history.
It is also blocked about two inches from one of my radiation tattos. Makes me say' Hmm"? Just FYI.
So, on a couple meds to see if improves , if not then will have a stent.

NN

nonichol

juliamary said:

Leg and hip pain
Hi everyone i also have been having leg pain and i have noticed now after 9 months that my right hip is very weak, also recently i have been having a lot of fatigue, so so tired, trying to keep exercising, but not helping, keep thinking that the cancer must be comming back. has anyone else having these issues?????
Julia.

oops
oops

nonichol

juliamary said:

Leg and hip pain
Hi everyone i also have been having leg pain and i have noticed now after 9 months that my right hip is very weak, also recently i have been having a lot of fatigue, so so tired, trying to keep exercising, but not helping, keep thinking that the cancer must be comming back. has anyone else having these issues?????
Julia.

leg weakness
double, triple posts great!

johnb629

1jml said:

Hi - I went through the same thing. I wasn't told it was from scar tissue but from the radiation. I went to three months of physical therapy and all that happened was that I got worse. I was referred to a chiroprator who believed in taking a holisitic therapies and it helped me so much. I couldn't wear heels, walked with a hard limp, and had the worst time with stairs. I was completley better within 6 months!

I have nerve scarring from prostate cancer external radiation therapy 12 years ago. After a few years I began to have minor trouble walking. This has developed into gait ataxia symptoms. All other causes have been pretty much ruled out by extensive testing. I have gotten some relief from daily use of gabapentin (generic form of neurontin), 1200 mg. per day. Physical therapy has helped too.

I usually need a a cane and sometimes two canes to walk any distance.

I find that heat on my lower back aggravates the problem and also fever and viral infections.

gail03

nonichol said:

leg weakness
Hi,
I just had another bad pap (so I qualify on this section of the site too), had laser treament on cerivix in 97. Testing again in a few weeks to see stage of cell changes. I have a pap every year, so really expecting no big problems.
Pelvic radiation and chemo for anal cancer two years ago. I see all these issues with leg pain, so I have just accepted it as a fact of my NEW life.
However, my cat scan in March showed a blockage near the pevic bone in my illiac artery, which is the apparent cause of my leg weakness. I don't have high blood pressure, high cholesterol, or a family history.
It is also blocked about two inches from one of my radiation tattos. Makes me say' Hmm"? Just FYI.
So, on a couple meds to see if improves , if not then will have a stent.

NN

blockage
my treatment for cervical cancer was in 2003.....I developed a blockge the same as yours and had a stent put in.....I still have a lot of leg pain and weakness and after 3 years of doctors test after test after test the doctors have finally admitted it from radiation treatment..I also have a lot of bowel problems ...some incontinence....also a side effect from radiation sacral nerve damage....but I am still happy to be here...I just wish the doctors wpuld inform us of the side effects...I always think the cancer is back...

Hondo

Nerve damage from radiation
All of my nerve pain is in the face and neck from having radiation twice to the head. Now just a few months ago I got pneumonia because the nerve has my face numb on the left side and I can no longer swallow. I have asked every doctor I see or know and none of them can tell me what I need to do and none of then say then can help. We may be spared dyeing of the cancer but I am not sure dying of the side effects are any better.

Just my take
Hondo

Cancun2011

Cinnamonym said:

Possible nerve damage from radiaiton
I read with interest your comments posted in July 2010 regarding you husband's walking difficulties after his radiation treatment for prostate treatment. My husband recently finished 30 radiation treatments for stage iv
metastasized prostate cancer. The first part of the radiation was directed at the mets to pelvic bones. After that was done
the radiology team focused on the prostate for a bout a week. Almost immediately Bill started having a different sort of reaction to the radiation: left leg pain. The radiologist did not seem to know what was causing the pain. Now the radiation has been completed but the left leg pain has progressed and is now accompanied by heaviness in the left leg and difficulty walking. He says the leg feels heavy, there is diffuse pain, especially in the thigh/upper leg down the knee, and it is hard to lift the leg to walk,especially when stairs are involved. There is a slight involvement of the right leg but much milder. We had feared this leg problem was caused by cancer attacking the spinal nerves but I decided to do searches on line to see if it possibly could be from the radiation of the prostate. I found your posting. So I am wondering if his pain and leg dysfunction is from the radiation. This has only just begun for us...this leg situation. But you asked about alternative treatments. I am an acupuncturist and treating it with scalp acupuncture. It seems to be helping to some extent. It is too early to tell how successful it will be. But a while back before radiation he was having right leg problems.... I think from cancer in spinal nerves....and I used scalp acupuncture on him at that time and the problem went away for the time being. Acupuncture can sometimes "remind" the nerves what they are supposed to be doing when they are being interfered with. I do not know how much success can be gotten with it when the nerves are permanently damaged by radiation or are solidly invaded by cancer, but it will work in many cases certainly up to a point. If your husbandis still having this problem, you might seek out an acupuncturist who does scalp acupuncture. Best wishes.

Left leg pain X 4 months
Hello Cinnamonym,

I had chemo and radiation for left breast cancer 3 years ago. Four months ago I started pain in my whole left leg. Xrays, MRIs and PT does not help. Next step is Acupunctur... How do can I tell if I am going to an Acupuncturist who realy knows what he/she is doing?
Thank you and I look forward to hearing from you soon.

ronmybaby

Hondo said:

Nerve damage from radiation
All of my nerve pain is in the face and neck from having radiation twice to the head. Now just a few months ago I got pneumonia because the nerve has my face numb on the left side and I can no longer swallow. I have asked every doctor I see or know and none of them can tell me what I need to do and none of then say then can help. We may be spared dyeing of the cancer but I am not sure dying of the side effects are any better.

Just my take
Hondo

Hondo..
First off I love the pic of your dog!
I'm very worried now of nerve damage. As I read yours and many other people's posts on how the after affects of radiation cause nerve damage. I'm sorry about your situation. I pray it will ease up and not be so bad for you.

I will start up radiation in a month I believe so I'm very worried. Mine will be in the pelvic region. I worry of nerve damage to my legs and not being able to walk correctly.

I think we as a society don't know enough about radiation and HOW to fix any side effects. We blame it on laying on metal tables or say it will go away.....when in fact the professionals really don't know. But they don't tell you that.

What is bothersome is seeing a professional stand back with a big cover or behind a protective screen and look at you laying there with radiation jets directly going into your vagina with NO protection. You can't help but wonder how wrong this situation is for YOU.

boylerman

Quadracept Deterioration
I thought this was supposed to be a rare occurance. Three years after radiation and chemo for a squamous-cell anal tumor (2008) I began to have balance and strength issues with my left leg. I realized how serious it was when I had a bad fall and broke my left ankle in 2009. The leg continued to become weaker and now I cannot lift my left leg up. I have had fasiculation in both of my quads for four years now and about a year ago my right leg dramatically weakened and now is about the same as my left leg. My main issue now is falling and I have had other significant injuries, foot fracture, sprained knee, etc. My story looks like many others that have posted... left leg starting the process and then spreading to the right leg. I do not have the drop foot that I see others experiencing. Has anyone found something that can help regenerate some of the damaged nerves?

boylerman

boylerman said:

Quadracept Deterioration
I thought this was supposed to be a rare occurance. Three years after radiation and chemo for a squamous-cell anal tumor (2008) I began to have balance and strength issues with my left leg. I realized how serious it was when I had a bad fall and broke my left ankle in 2009. The leg continued to become weaker and now I cannot lift my left leg up. I have had fasiculation in both of my quads for four years now and about a year ago my right leg dramatically weakened and now is about the same as my left leg. My main issue now is falling and I have had other significant injuries, foot fracture, sprained knee, etc. My story looks like many others that have posted... left leg starting the process and then spreading to the right leg. I do not have the drop foot that I see others experiencing. Has anyone found something that can help regenerate some of the damaged nerves?

Continuation
I have had all the test run by many docs too... mri's, emg's, lumbar puncture. It seems like each doctor I saw wanted to get their share of the "booty". I've seen too many neurologists who scratched their heads and told me they could only tell me what wasn't going on... ALS, MS, recurrance of the cancer. I'm sure you can tell I have become very discouraged with the medical community concerning radiation treatment. Finally, I found the leading neurologist in my area who told me that he sees this a couple of times a year and he is clear that it is directly caused from the radiation. I went back to my radiation doc four years after treatment and she told me she had never heard of anything like this and she would pray for me. It was such a dismissal and I felt she really was trying to deny that her therapy was responsible. I wasn't even looking for the "culprit". I just wanted to know how far it was going to go and if there was something that could be done about it. I agree with many on this network that we need to be warned about the side-effects - more specificaaly nerve damage - so we can make other informaed treatment choices if we want.

Spacey84

boylerman said:

Continuation
I have had all the test run by many docs too... mri's, emg's, lumbar puncture. It seems like each doctor I saw wanted to get their share of the "booty". I've seen too many neurologists who scratched their heads and told me they could only tell me what wasn't going on... ALS, MS, recurrance of the cancer. I'm sure you can tell I have become very discouraged with the medical community concerning radiation treatment. Finally, I found the leading neurologist in my area who told me that he sees this a couple of times a year and he is clear that it is directly caused from the radiation. I went back to my radiation doc four years after treatment and she told me she had never heard of anything like this and she would pray for me. It was such a dismissal and I felt she really was trying to deny that her therapy was responsible. I wasn't even looking for the "culprit". I just wanted to know how far it was going to go and if there was something that could be done about it. I agree with many on this network that we need to be warned about the side-effects - more specificaaly nerve damage - so we can make other informaed treatment choices if we want.

I had 33 radiation
I had 33 radiation treatments last winter for sarcoma in my left thigh. I have just noticed tingling in my left foot and ankle that began about a month ago. I wear a full length compression sleeve on my leg and at first thought it was cutting my circulation off and causing the tingling. Now I feel it constantly. I asked my oncologist about it a few days ago thinking it may be a delayed side effect of chemo (finished that in June), but he said that would affect both feet, not just one, and it usually happens during treatment. I talked to my chiropractor about it today and she said it sounds like nerve damage. I will see my radiation oncologist and physical therapist next week and hope they can help me with this. Reading some of these posts about loss of use and pain with walking is terrifying to me. I do also have a lot of hip pain after sitting and sometimes feel (and probably look) like an 80 YO woman when I walk. Once I get 'warmed up' it's not so bad.

lynbyn5

BoneyMaroni said:

Nerve Damage due to radiation
Hi LynnMG
My symptoms are pretty much like yours, no pain, just weakness and drop foot. I'd be interested in hearing if you have found any solutions? Did you have cancer treatment to the pelvic area? Love to hear from you.
BoneyMaroni

leg paralysis "drop foot"

My dad had radiation for prostate cancer nearly 20 years ago.  After the treatment, he developed similar symptoms, drop foot, difficulty walking.  It progressed over the years.  He is 83 and can barely walk at all.

  We suspected there was an association with radiation treatment.  The doctor's were not very helpful.  It has been helpful/interesting to read these posts and to realize that we are not in it alone.

chrisrodgersindiana

im just startingvto think

im starting to think i also have nerve/muscle damage. The last 2 months of 2010 i had radiation in my groin/torso to trat a large tumor near my vaginal area. i get severe pain around my kidney region and in my legs. nothing can be found to be wrong though testing. ive been in the ER twice for this. the worst pain by far has been in nlmy left side includkng my groin muscle and lower back and my buttock. the ER doc last night told me this could be the cause of this pain. alrhough she said scar tissue from radiation. i never had heard this before. i also found out ive develooed diabetes through testing last night in the ER. this is the worst pain ive had in my life! is there any treatment? i hope no more pills. im already killing my liver with all my meds. is there any hope this will go away? heavy narcotic pain killers have only dulled the pain. also incotinence has been an issue. i cant live with this much pain. ive been in tears in bed all week because its excruciatiating to stand or walk 

funbeadgirl

chrisrodgersindiana said:

im just startingvto think

im starting to think i also have nerve/muscle damage. The last 2 months of 2010 i had radiation in my groin/torso to trat a large tumor near my vaginal area. i get severe pain around my kidney region and in my legs. nothing can be found to be wrong though testing. ive been in the ER twice for this. the worst pain by far has been in nlmy left side includkng my groin muscle and lower back and my buttock. the ER doc last night told me this could be the cause of this pain. alrhough she said scar tissue from radiation. i never had heard this before. i also found out ive develooed diabetes through testing last night in the ER. this is the worst pain ive had in my life! is there any treatment? i hope no more pills. im already killing my liver with all my meds. is there any hope this will go away? heavy narcotic pain killers have only dulled the pain. also incotinence has been an issue. i cant live with this much pain. ive been in tears in bed all week because its excruciatiating to stand or walk 

I'm sorry for your pain, I

I'm sorry for your pain, I know firsthand how maddening the pain can be. I had 33 radiation treatments to my vulvar area in my groin and I have scar tissue from that also. I also had radiation to my femur on same leg because of a metastes of my vulvar cancer, and 2 surgeries on same leg, so I have a lot of issues with scar tissue on muscles, etc. I was in physcal therapy for a long time , they worked on breaking up the scar tissue, which is very painful but helpful too. I had to stop because I have a non union fracture in that same leg because of the radiation, so now I am having another surgery in two weeks to have a bone graft. I will be starting from scratch again.

I take heavy duty pain meds also, it's true it only dulls the pain, just enough to give me the ability to function, but because my leg is essentially broke, I can't move around too much, so my muscles have tightened up again. I don't believe that most doctors understand the problem of scar tissue, that's part of the problem.

Perhaps you could request that your doctor puts in an order for you to see a physical therapist, they could evaluate you and maybe help you. I think the diabetes is a separate issue, I never head of radiation causing diabetes, but that would be a good question for a nutritionist. Nerve damage also takes a long time to heal, years in fact. I have neuropathy from chemo that has not gone away and it's been over a year since my last treatment.

I know that when I recovered from my first surgery and radiation, I became physically active again, walking 3 miles a day and that with the physical therapy helped tremendously, but it takes effort and hard work.  The only way to get rid of and keep scar tissue from forming again is to be active, like walking. I hope the bone graft I will be getting fixes my femur healing, I can't wait to get back to exercise. My first cancer was in 2009, I've had another separate cancer diagnosis 6 months after that, and have had 2 metastis of vulvar cancer since then also, both in the bone ( 2 separate bone locations).

Perhaps at your cancer center they might have a cancer counselor that could help you with these issues. Unfortunately, I think once a patient is done with treatment, they are left on their own too much. I believe that after treatment is when a patient needs the most support. You are not losing your mind , your pain and other issues are real, so keep calling that doctor until you get a satisfactory answer.

I wish you the best, don't be afraid to keep calling doctor office, in fact the nurse probalby knows of other resources for you that could help, I always said that the nurses are the real healers in the medical field. Be Strong!

HarvestMoonHaven

Radiation damage

How interesting to find this topic up; I am dealing with the same things; though mine is not just the leg issue; (and mine, is in my right leg btw) but other spots; the sides of my lips, my hands both go numb at times now..but mainly; mine is pain induced. My insides were so messed up from the cancers and then radiation; adhesions, blah, blah...that my entire abdomen is painful. I became an ostomy patient as well, two years ago in May was the anniversary of my bladder cancer survival, and it also destroyed my urethreas, so..am currently on the search for help. I do though, not allow them to give me any further drugs with the word "sone" in it; it means its some type of cortisone, prednisone, and if you read up on them; they dont even know why they work; they DO know it causes all kinds of other issues; edema, and such. I became an herbalist after my first go around, the doctors do NOT appreciate that. But I think it was of great help, as is the foods we eat; and water, water, water; no white sugar stuff. Off to try to find someone who has the title MD and maybe, just maaaaybe might kn0w about the pain many of us are dealing with, having survived the cancer. 

SVK

Left leg weakness post radiation

My dad had prostate surgery in March of 2013 followed by six weeks of external radiation in April. He recovered really well from both surgery and radiation, however after two months he started having issues with his left leg similar to many folks described in this forum. None of doctors seem to identify the cause nor the cure. He is doing PT and massage along with some alternative homopathic medicine, I will keep you posted on his progress. I took some notes for various logs so i am going to suggest chiropractic and accupunture as the next line of attack.

carolg44

boylerman said:

Continuation
I have had all the test run by many docs too... mri's, emg's, lumbar puncture. It seems like each doctor I saw wanted to get their share of the "booty". I've seen too many neurologists who scratched their heads and told me they could only tell me what wasn't going on... ALS, MS, recurrance of the cancer. I'm sure you can tell I have become very discouraged with the medical community concerning radiation treatment. Finally, I found the leading neurologist in my area who told me that he sees this a couple of times a year and he is clear that it is directly caused from the radiation. I went back to my radiation doc four years after treatment and she told me she had never heard of anything like this and she would pray for me. It was such a dismissal and I felt she really was trying to deny that her therapy was responsible. I wasn't even looking for the "culprit". I just wanted to know how far it was going to go and if there was something that could be done about it. I agree with many on this network that we need to be warned about the side-effects - more specificaaly nerve damage - so we can make other informaed treatment choices if we want.

Radiation Nerve damage

I'm glad I found this website and discovered tht I am not alone in this battle.  My radiation was in 1979 for Cervical Cancer.  I had ALOT of treatments (5 days/week for 3 months).  I have had digestive issues for about 10 years; have had a bowel resection to remove a damaged section in 2008.  Then was on TPN for 4 years, since I could not process food.  I'm off the TPN now, but still have several digestive issues.  Also have major bladder problems. 

 And then last year, started with some numbness in my right foot. The numbness & weakness is now in both feet and lower legs. Went to a vascular doctor, a cardiologist and then a neurologist.  The neurologist did some basic testing, gave me Gabapentin and said it was a neuropathy of "unknown origin".  The Gabapentin did nothing.  Last month went to a different Neurologist that diagnosed me right away, and confirmed his diagnosis with some neurological testing.  I have Radiation Plexitis, which is permanent damage to the nerves in my feet & legs from the radiation treatments 34 years ago.  There is no medication available to stop or reverse the symptoms.  Unfortunately the numbness & weakness will not improve.  I am now walking with a cane; next will be a walker and then a wheel chair.  At least now I have a diagnosis.  The Dr. has recommended physical therapy to try to strengthen the muscles. I'm going to start that this week and hopefully it will help somewhat.  Amazing how some medical professionals have little or no knowledge of radiation damage.

I am happy to have had all these years "cancer free", but they were not without a price.  No one told me years ago that the radiation would cause all of these issues so many years later. 

neyoung

carolg44 said:

Radiation Nerve damage

I'm glad I found this website and discovered tht I am not alone in this battle.  My radiation was in 1979 for Cervical Cancer.  I had ALOT of treatments (5 days/week for 3 months).  I have had digestive issues for about 10 years; have had a bowel resection to remove a damaged section in 2008.  Then was on TPN for 4 years, since I could not process food.  I'm off the TPN now, but still have several digestive issues.  Also have major bladder problems. 

 And then last year, started with some numbness in my right foot. The numbness & weakness is now in both feet and lower legs. Went to a vascular doctor, a cardiologist and then a neurologist.  The neurologist did some basic testing, gave me Gabapentin and said it was a neuropathy of "unknown origin".  The Gabapentin did nothing.  Last month went to a different Neurologist that diagnosed me right away, and confirmed his diagnosis with some neurological testing.  I have Radiation Plexitis, which is permanent damage to the nerves in my feet & legs from the radiation treatments 34 years ago.  There is no medication available to stop or reverse the symptoms.  Unfortunately the numbness & weakness will not improve.  I am now walking with a cane; next will be a walker and then a wheel chair.  At least now I have a diagnosis.  The Dr. has recommended physical therapy to try to strengthen the muscles. I'm going to start that this week and hopefully it will help somewhat.  Amazing how some medical professionals have little or no knowledge of radiation damage.

I am happy to have had all these years "cancer free", but they were not without a price.  No one told me years ago that the radiation would cause all of these issues so many years later. 

radiation neuropathy

Hello carolg44.  I was diagnosed with a soft tissue sarcoma in the back of my left leg in 1981. I had surgery, a skin graft, 30 radiation treatments, and only one of six proposed chemo

treatments.

The chemo in killing both the cancer and healthy cells broke down the skin graft, so they stopped after only one treatment. It was a rare and lethal tumour with them giving me a 20% chance

of survival (it could have travelled to my lungs and brain). Like yourself, I have felt blessed to have been "cancer free" for all of these years. I am now as you say, paying the price. Just

this past April, an ulcer broke out in this old radiated area. An MRI suggested that there was a possible tumour on the nerve sheath back there. A biopsy was negative. The pain, probably

nerve pain started after the biopsy. The Doctor told me that the wound may never heal. It still hasn't. A specialist in Toronto told me in July that it was radiation neuropathy (not, a return of

the cancer) fallout from the high dose radiation used at that time.  I don't think that it is nerve pain now, it seems to be in the tissues around the site. I have had 3 lots of antibiotics for

infection at the site. The pain has not let up, and because it is right at the bend in the knee,it is constant with walking. I have tried Gabapentin, Elavil and a couple of narcotics with no effect.

Going back to my oncologist this week for a repeat MRI. Depressed at the thought of this chronic condition, and living in constant pain.  Your story really sounded so similar to my

situation. How are you now?

 

Nancy E. Young

Ontario, Canada