Nerve damage from radiation

I am losing the use of my legs due to 'scar tissue' nerve/muscle damage from radiation. Doctor suggests high dosage (500 mg/week) methylprednis treatment. Has anyone ever experienced this?
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Comments

  • jhopkins
    jhopkins Member Posts: 9
    Tell me your symptoms. I think I am experiencing something. I just attributed it to bone pain from the radiation
  • Lynnmg
    Lynnmg Member Posts: 3
    Started with left leg feeling weak...then gradually developed 'drop foot'...leg became weaker so that can only pick it up off the floor an inch or so...now right leg is starting to do the same thing - really don't feel pain - when sitting can actually forget that I can't walk - when trying to walk hips/legs hurt - off balance - this all came about over a year after treatment
  • coffeegal1
    coffeegal1 Member Posts: 2
    Hi how are you. I was treated with pelvic radiation 32 treatments last Jan.o5 and I too have had left leg pain that I have mentioned to the onc. who just shook his head. I will get a tingling in that leg and pain and when I started a walking program my lower legs felt like they were not there, burning. I also have hip pain after sitting. email me if you like, [email protected]
  • 1jml
    1jml Member Posts: 12 Member
    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!
  • Femi
    Femi Member Posts: 3
    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!

    Just like to mention one of the few things which might possibly help the damaged tissue is hyperbaric oxygen therapy (HBOT). Of course it is no miracle cure but it is scientifically proven to have an effect on damaged tissue. It got recommended to my friend who had radiation for his thigh because of sarcoma. The radiation did severe damage to the tissue, on top of that he has a nerve-damage. At moment he is dealing with recurrence of his sarcoma and did not yet have a chance to try HBOT.
  • BoneyMaroni
    BoneyMaroni Member Posts: 4
    Loss of legs due to scar tissue
    Hi, I saw your comment and I too have been losing the nerves in my legs for past 7 years. I was treated with radiation in the pelvic area 32 years ago (I'm 62) for cervical cancer and did not have problems with my legs until past 7 years. I have run battery of tests, nothing shows up, EMG, neuro tests, B-12 high, not diabetic, I have had electrical treatments and also spinal decompression but no help. The manipulation by my chiropractor helped more than anything but it could have been the decompression. I also try to exercise an hour at the day, this has helped my balance. What is this medication your dr recommends?
  • BoneyMaroni
    BoneyMaroni Member Posts: 4
    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!

    radiation damage to nerves
    Hi 1jml, What kind of treatment did your chiropractor give you? I see your posting was from 2004, I hope you are much much better know and I would love to hear your current condition.
  • BoneyMaroni
    BoneyMaroni Member Posts: 4
    Femi said:

    Just like to mention one of the few things which might possibly help the damaged tissue is hyperbaric oxygen therapy (HBOT). Of course it is no miracle cure but it is scientifically proven to have an effect on damaged tissue. It got recommended to my friend who had radiation for his thigh because of sarcoma. The radiation did severe damage to the tissue, on top of that he has a nerve-damage. At moment he is dealing with recurrence of his sarcoma and did not yet have a chance to try HBOT.

    Nerve damage from radiation
    Hi Femi
    I saw your comment about the use of a hyperbaric chamber for nerve damage. Have you heard any more about it? Very interesting. i would appreciate your comment.
    BoneyMaroni
  • BoneyMaroni
    BoneyMaroni Member Posts: 4
    Lynnmg said:

    Started with left leg feeling weak...then gradually developed 'drop foot'...leg became weaker so that can only pick it up off the floor an inch or so...now right leg is starting to do the same thing - really don't feel pain - when sitting can actually forget that I can't walk - when trying to walk hips/legs hurt - off balance - this all came about over a year after treatment

    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
  • maryln3
    maryln3 Member Posts: 62

    Loss of legs due to scar tissue
    Hi, I saw your comment and I too have been losing the nerves in my legs for past 7 years. I was treated with radiation in the pelvic area 32 years ago (I'm 62) for cervical cancer and did not have problems with my legs until past 7 years. I have run battery of tests, nothing shows up, EMG, neuro tests, B-12 high, not diabetic, I have had electrical treatments and also spinal decompression but no help. The manipulation by my chiropractor helped more than anything but it could have been the decompression. I also try to exercise an hour at the day, this has helped my balance. What is this medication your dr recommends?

    SWELLING WHERE PUBIC HAIR IS
    I HAVE A SWELLING ..HOW DO I TELL YA WHERE

    PUBIC HAIR AREA RIGHT ABOVE THE OPENING STRAIGHT ACROSS AND IT HURTS WHEN ANYTHING TOUCHES IT

    THE GYN SAID IT WAS INFLAMAATION OR ACCUMULATION OF BLOOD AND IT WILL GO AWAY DID ANY ONE HAVE THS
  • funbeadgirl
    funbeadgirl Member Posts: 181 Member
    nerve pain/scar tissue from radiation
    I completed 5 1/2 weeks radiation on April 10, 2009, recovered well, and only recently have I started to experience pain in upper thighs and groin area. I had vulvar cancer, had surgery and 1 lymph node involved, thus full pelvic radiation. I was back to walking 3 miles a day and all of a sudden I started having pain. Rad/onco said it was scar tissue forming from radiation, especially because of 'frog-leg' position I had to be in for treatments. I have been in physical therapy for 2 weeks and have noticed a big difference. Getting in and out of a car, and getting up from a chair were very painful, I am relatively pain free now, although certain activities are still difficult.My body responds to PT well, I tried chiropractic with no results, actually got worse, but each person is different.
    I think I would ask a lot of questions before going on medication.
  • robinsbg
    robinsbg Member Posts: 1

    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

    Nerve damage from radiation
    My husband has prostate cancer that had spread to his spine. The 15 course radiation caused nerve damage that you all have discribed here. He has tried IVg, Avistan, Rituxin, and HBO to no avail. Steroids can give him a little bit of help, but with all the steroid side effects. I am interested any any treatments that some one may have had that helps. He walks with two canes and can't walk very far. Has anyone else had any success with the chiropracter or holistic medicine or acpuncture? The cancer is being controled but qualty of life from the radiatin damage is really low. Any help would be appreciated.

    Thanks,
    Robins
  • retina
    retina Member Posts: 1
    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!

    pain-post radiation
    I know it's been quite a while but I just found this site and was interested in someone's 2004 comment on relief from this type of pain with holistic medicine. Could you please share with me the specifics of your successful treatment! Following surgery and chemo I had radiation to the right chest and have since experienced increasingly severe leg pain for which NO ONE seems to be able to treat or even understand. Thank you very much! Rebecca
  • Michele23
    Michele23 Member Posts: 168

    nerve pain/scar tissue from radiation
    I completed 5 1/2 weeks radiation on April 10, 2009, recovered well, and only recently have I started to experience pain in upper thighs and groin area. I had vulvar cancer, had surgery and 1 lymph node involved, thus full pelvic radiation. I was back to walking 3 miles a day and all of a sudden I started having pain. Rad/onco said it was scar tissue forming from radiation, especially because of 'frog-leg' position I had to be in for treatments. I have been in physical therapy for 2 weeks and have noticed a big difference. Getting in and out of a car, and getting up from a chair were very painful, I am relatively pain free now, although certain activities are still difficult.My body responds to PT well, I tried chiropractic with no results, actually got worse, but each person is different.
    I think I would ask a lot of questions before going on medication.

    Neuropathy maybe?
    I started having weakness tingling and pain in my legs since I started Treanda/Rituxan.I was told this can be a side effect from cancer treatments of any kind.Also that in some cases it will subside when treatments are over but may also stay after treatments are over.I thought I was getting Arthritis as I have it in my hands and back.I only ever had radiation to neck and eyebrow area.Just thought I might add this as the symptoms sound the same.Michele Dx95FNHL3
  • gail03
    gail03 Member Posts: 11
    retina said:

    pain-post radiation
    I know it's been quite a while but I just found this site and was interested in someone's 2004 comment on relief from this type of pain with holistic medicine. Could you please share with me the specifics of your successful treatment! Following surgery and chemo I had radiation to the right chest and have since experienced increasingly severe leg pain for which NO ONE seems to be able to treat or even understand. Thank you very much! Rebecca

    nerve damage
    Hello everyone ..have just found this site...can't believe I'm not alone here...I had chemo and radiation for cervical cancer 8 years ago and have had leg pain, weakness and numbness for the last 2 years...my doctor says it's all in my head...where do I go from here...also pain in my hips when I walk..any suggestions much appreciated..
  • Pam_in_pain
    Pam_in_pain Member Posts: 1
    Michele23 said:

    Neuropathy maybe?
    I started having weakness tingling and pain in my legs since I started Treanda/Rituxan.I was told this can be a side effect from cancer treatments of any kind.Also that in some cases it will subside when treatments are over but may also stay after treatments are over.I thought I was getting Arthritis as I have it in my hands and back.I only ever had radiation to neck and eyebrow area.Just thought I might add this as the symptoms sound the same.Michele Dx95FNHL3

    Leg pain/nerve damage??
    I had 8 weeks of external radiation 5 chemo treatments during radiation times, then 5 internal radiation treatments for cervical cancer 3B. During my external radiation my lower back/hip/right leg started hurting. I was told it would go away after treatments an I was no longer having to lay on the hard metal tables. That was diagnosed July 21,2010 told no cancer in body as of Nov 1,2010. I have not been able to return to work, actually got fired as was out so long. I have had multiple mri's, cat scans,'pet scans, bone scans. I have been on fentanyl, vidicon, neurontin, and elavil. I had exploratory surgery where both ovaries were taken along with a mass that thankfully was benign. I am scheduled tomsee a neurologist next week to see if he can figure out what is wrong. My doctors still seem to feel it is not radiation caused??? Is there a test that can be done to see if that is what it is. I am only 48, I am not able to drive as the drugs make me foggy headed, and also in Calif if I drive and get in an accident that has any type of investigation, it will be ruled my fault as all four of my meds have warnings against driving which would mean I was driving wihile influenced DWI. I am looking for any help in what my next step should be. Thanks, Pam
  • Cinnamonym
    Cinnamonym Member Posts: 1
    robinsbg said:

    Nerve damage from radiation
    My husband has prostate cancer that had spread to his spine. The 15 course radiation caused nerve damage that you all have discribed here. He has tried IVg, Avistan, Rituxin, and HBO to no avail. Steroids can give him a little bit of help, but with all the steroid side effects. I am interested any any treatments that some one may have had that helps. He walks with two canes and can't walk very far. Has anyone else had any success with the chiropracter or holistic medicine or acpuncture? The cancer is being controled but qualty of life from the radiatin damage is really low. Any help would be appreciated.

    Thanks,
    Robins

    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.
  • juliamary
    juliamary Member Posts: 11
    maryln3 said:

    SWELLING WHERE PUBIC HAIR IS
    I HAVE A SWELLING ..HOW DO I TELL YA WHERE

    PUBIC HAIR AREA RIGHT ABOVE THE OPENING STRAIGHT ACROSS AND IT HURTS WHEN ANYTHING TOUCHES IT

    THE GYN SAID IT WAS INFLAMAATION OR ACCUMULATION OF BLOOD AND IT WILL GO AWAY DID ANY ONE HAVE THS

    swelling
    Oh yes i am still very swollen nearly 9 months after radiotherapy, some times its very sore, and at others i don't really notice it.
    Julia
  • juliamary
    juliamary Member Posts: 11

    Leg pain/nerve damage??
    I had 8 weeks of external radiation 5 chemo treatments during radiation times, then 5 internal radiation treatments for cervical cancer 3B. During my external radiation my lower back/hip/right leg started hurting. I was told it would go away after treatments an I was no longer having to lay on the hard metal tables. That was diagnosed July 21,2010 told no cancer in body as of Nov 1,2010. I have not been able to return to work, actually got fired as was out so long. I have had multiple mri's, cat scans,'pet scans, bone scans. I have been on fentanyl, vidicon, neurontin, and elavil. I had exploratory surgery where both ovaries were taken along with a mass that thankfully was benign. I am scheduled tomsee a neurologist next week to see if he can figure out what is wrong. My doctors still seem to feel it is not radiation caused??? Is there a test that can be done to see if that is what it is. I am only 48, I am not able to drive as the drugs make me foggy headed, and also in Calif if I drive and get in an accident that has any type of investigation, it will be ruled my fault as all four of my meds have warnings against driving which would mean I was driving wihile influenced DWI. I am looking for any help in what my next step should be. Thanks, Pam

    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.
  • ChristyL
    ChristyL Member Posts: 1

    Loss of legs due to scar tissue
    Hi, I saw your comment and I too have been losing the nerves in my legs for past 7 years. I was treated with radiation in the pelvic area 32 years ago (I'm 62) for cervical cancer and did not have problems with my legs until past 7 years. I have run battery of tests, nothing shows up, EMG, neuro tests, B-12 high, not diabetic, I have had electrical treatments and also spinal decompression but no help. The manipulation by my chiropractor helped more than anything but it could have been the decompression. I also try to exercise an hour at the day, this has helped my balance. What is this medication your dr recommends?

    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!