Nerve damage from radiation

dandelion55 said:

Nerve Damage

I too am so happy to have found this website.  I was beginning to think I was all alone.  I had cervical cancer 23 years ago and went through chemo & radiation over a period of nine months.  Beat the cancer with flying colors but have had numerous problems arise due to the radiation treatment.  My most recent problem is neuropathy in both legs, trhough my hips and now has affected my bowels and bladder.  I literally woke up one morning and could not walk.  Started falling, having bouts where my legs felt like two cement blocks.  Falling to where I have broken my ankle and fractured my back.  I cannot walk without the use of a cane on a good day or a walker on a bad day.  Bad days are more frequent. 

I have been through physical therapy, accupunture, chiropractor as well as visits to the Neurologist every three months.  It took seven years for him to diagnois me.  So now that I have wrapped my head around my situation, I am trying hard to live my life. 

i am so glad I found this site. I though my pain and leg weakness could have been caused by lower spinal radiation. After reading these comments, it confirms my suspections. After walking a few minutes my left leg starts dragging if I don't make a real effort to lift it up. Both legs feel real heavy and tingle. i have developed hip and lower back pain. I have 4th stage lung cancer that is responding  to Zykadia and the lung tumor is srinking so I would think its not spreading. I am afraid if I mention it to my oncologist he will send me back to my radiologist. I will have a scan in about two weeks and then I will know. But where do I go from there for help? Hope someone has advise.

Franklin46 said:

Weak leg

i am so glad I found this site. I though my pain and leg weakness could have been caused by lower spinal radiation. After reading these comments, it confirms my suspections. After walking a few minutes my left leg starts dragging if I don't make a real effort to lift it up. Both legs feel real heavy and tingle. i have developed hip and lower back pain. I have 4th stage lung cancer that is responding  to Zykadia and the lung tumor is srinking so I would think its not spreading. I am afraid if I mention it to my oncologist he will send me back to my radiologist. I will have a scan in about two weeks and then I will know. But where do I go from there for help? Hope someone has advise.

Franklin46,

I am in a very similar situation (Stage 4 lung cancer, with a met in the right ilium, hence radiation to pelvis) and experience symptoms similar to those you describe.  After MANY failed attempts (both prescriptions and PT) to help the pain, I finally resorted to ART (Active Release Therapy) (see activerelease.com).  For the first time in months, I left the office without pain.  Basically, you and the therapist manipulate your body in such a way that the muscle knots and can be massaged away.  It's no picnic - some movements take a lot of concentration to work through while the therapist does her work, but it has made a significant difference in my condition - both physically and mentally.  Also, even though I've never done anything like it before (despite being an active athlete), I'm finding a lot of help in doing simple pilates every day.  Although it's not socially correct, if I do simple stretches whenever the tightness starts, this helps also.  

I hope this helps you  Please don't give up or give in.

Lynn P. said:

Radiation nerve damage

Thanks for your posting. It is so good to understand the weakness in my legs. I had radiation therapy 20 years ago for a spinal tumour, with in 6 months I esperiences weakness in my legs. The weakness, without pain has continued over the years. I have been to many different physiotherapists, all suggesting different exercises without any success, the weakness continued. My GP refuses to believe radiation nerve damage exists. Thanks for sharing you struggles, it makes me feel as though I have been heard.

Lynn, I see this is an older thread that had been started many years ago.  Some doctors are finally realizing that since so many patients are now surviving their treatment, they (we) are having to live with the side effects of surgery and the various treatments, there is a new focus and it is called:  SURVIVORSHIP.

I googled and came across this:  http://www.cancer.net/survivorship

i am in it....10 days. Need help getting around.  Numb from radiation point at t4 all around down to the feet.   All tight as can be

i wantto connect  with the  woman who had walking issues after radiation therrapy

how can we b sure nerve damage is from radiation or if there is nerve damage?

44 days of radiation for prostate cancer March-May 2013.    

Noticed weakness in legs that increased every day after treatment.  Now three years later I have great weakness in legs and cannot walk very far or stand up for very long.   Got Agent Orange related neuropathy in both feet along with Type 2 diabetes controlled by diet. 

VA doctors do not pay any attention to my pain.  They did give me an electric cart for which I am very happy. 

Would give anything to be able to walk and run again.  Had left knee replaced three years ago also.  

Any thoughts from the group are appreciated.  

I posted on this site several years ago.  Way back in 1966 I underwent six weeks of daily radiation treatments at Univ. Hospital in Cleveland, OH.  My doctor was the "famous" Dr. Jane (neurologist) who was the personal doctor for SUPERMAN, Christopher Reeve, when he fractured his neck from a fall off of his horse.  I had a tumor on my spinal column, in the middle of my back, which was so entwined with my spinal cord they could not even take a biopsy.  Dr. Jane recommended the radiation treatments over chemo.  I was only 24 at the time, had recently gotten married, and was told prior to the surgery, that I had a 50/50 chance of ever walking again.  Another doctor recommended chemo, but I choose the radiation treatments and have never regretted this decision. 

I made a complete recovery and have had a very good life and am currently 74 years old.  Unfortuntately, around the year 2002 I began to develop a left drop foot and eventually, I have lost the strength in both of my legs to the point where I use a cane to walk and have difficulty using steps.  I have always been very active, working, exercising, coached wrestling 15+ years, etc.  Of course, this loss of leg strength has dramatically altered my life style.  I have undergone several EMG's, the last at the Cleveland Clinic.  The doctors attribute this condition to the radiation treatments from 50 years ago and they tell me there is nothing that can be done.  They also tell me that exercise will not help.  Fortunately, I do not experience any pain.

I have undergone physical therapy sessions, acupuncture, and I exercise, (warm water pool) to no avail.  I still can not believe that nothing can be done and that the medical community seems to dismiss this type of issue as inconsequential.  Sorry for the long post, but I always wonder how many individuals are out there with this same type of problem??

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. 

I had my mom to a neurologist yesterday she had cancer treatments in 1977 for ovarian cancer, [Cesium treatment, radiation whatever they did back then, as she was an experimentally patient as they thought she was dying stage 4. When then discovered cancer.  Anyway she is having trouble using her legs and it has progressively gotten worse.  3 months ago her arthritis doctor notice she had no visible reflex for her jerk test and got us in to see a neurologist.  Oh course family doctor stated she was their because her hips hurt when she walked.  I cut off the neurologist and him off and told him how we came to be here ( In nova Scotia family doctors do referring you can’t be refereed form one specialist to another)  I asked if the  radiation would have played a part in what her symptoms.

I explained her colostomy and non bladder controlled and the urologist cannot do a urostomy because of radiation damage.

He did they nerve test and boy did her the noise from something in her nerves.  It is radiation damage but to be sure he is asking her family doctor to send her for MRI.

I am wondering how you are now and have you found anything or are doing anything to hello you condition.

Peggy

shirleywu said:

Leg neuropathy from prostate radiation treatment

I wish more people post updates of their recovery process.

My dad has just underwent 30 sessions of radiation therapy in March for his prostate cancer, which his doctors do not know where it went. The radiation oncology doctor says the side effects are impotence and some urinary problems, which we thought could be bearable. The leg pain started a couple weeks into therapy. The doctor was not concerned. My dad described it as a strong electric shock like pain that shoots through his left leg whenever he moves the slightest, and he identified the region to correspond to the S2 nerve. Of course, the standard pain medications like acetaminophen do not work for neuropathic pain, and after trying to brace the pain for 4 weeks my dad started on a low dose gabapentin in April. He says it helps a little but I have to wonder how much of the relief is placebo effect, as he is not at the optimal therapeutic range yet.

I was reviewing the literature for what to expect. I have a hard time finding literature assuring me that it will go away. It makes sense that we can do very little for nerve damage because nerve cells are not regenerative, but this is not what I want to see. I did find an article that suggests early onset form have a better prognosis of recovery, but it doesn't sound similar enough to my dad's situations and I need more information on the duration of pain to be expected and the percentage of people who recover.

Please message me if you have radiation induced neuropathy, and you recover from it or the pain/immobility decreases. 

shirley, unfortunately some people only post one time but sometimes it has a tip or at least lets people know that they are not alone in their pain or struggles.  I was very fortunate not to suffer some of the side effects of chemo, but if I did I probably would try CBD oil.  It has been controversial in the state I live in (and they finally passed a law so it isn't illegal), but so many people says it helps them.  It might be worth a try????  

Your dad is so lucky to have you looking for help for him.  None of us fight alone.  We can't make it without the love and support of our family and friends.  I hope you are successful in finding something to help him