Nerve damage from radiation

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!

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.

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.

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

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.

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.

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 

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. 

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'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.