Dealing with Radiation Plexopathy with Myokymia

wetz5526

This year I was diagnosed with lumbar sacral radiation plexopathy with myokymia - 23 years after having had colon cancer (I was only 31 when diagnosed with cancer). Thank God I had my children prior to this happening and that treatment (radiation) was available as it more than likely saved my life. Looking back, I can say I've always had some of the symptoms but they were tolerable - now however, it's a constant disruption to my life. I have constant tighting, twitching, aching, buzzing from my buttocks down to the tips of my toes along with some jerking in my feet. I don't have "pain" so to say, however the constant systoms is enough to drive you crazy. I've seen a Neurologist who has prescribed gabapentin - so far, no change but am being told to give it a chance. I also take vicoden to help calm the buzzing/aching in my legs. I also try to keep active by walking every day and doing some strengthening and stretching exercises because I'm afraid if I don't then I'll loose the use. Does anyone out there have any other ideas for dealing with this ??

cainp

Radiation Plexopathy with Myokymia
My husband was diagnosed w/ prostate cancer April 2009--had Robatic surgery May 2009. Radiation treatments (40) completed June 2010. Started having pain Lt hip during 3rd radiation treatment--which has progressed to debilitating pain requiring hospitalization at one point; he takes maximum dose of Gabapentin 900 mg 3 times a day, Oxicontin for pain with Percocet for break through pain, and still has pain. Can hardly walk. Fell twice recently--using cane for assistance. All the physicians are telling us it's too "early" for symptoms of radiation induced plexopathy. Nerve conduction studies--poor results--one nerve in Lt leg w/ no reaction at all; over all, no myokymic discharges so they are saying can't be plexoplathy. He is doing hyperbaric treatments at present to see if he can get any relief. He has gone from walking and doing fine to loss of feelings in his feet and legs, severe pain to the point he stays in the bed most of the day at least one day a week, urinary incontinence...Very tender in low back--if applies pressure, has pain at site and numbness, tinging down both legs. If we knew then what we know now, would not do radiation...but it's too late. We don't know what to do at this point.

During my research, Mayo Clinic physician in Minn., Dr. P. James B. Dyck, has a research article outlining same symptoms my husband has. Non-diabetic lumbosacral radiculoplexus neuropathy. Natural History, Outcome, and Comparison with the Diabetic Variety. Steroids, Imuran, Cytoxin were drugs of choice for treatment.

jazzy1

cainp said:

Radiation Plexopathy with Myokymia
My husband was diagnosed w/ prostate cancer April 2009--had Robatic surgery May 2009. Radiation treatments (40) completed June 2010. Started having pain Lt hip during 3rd radiation treatment--which has progressed to debilitating pain requiring hospitalization at one point; he takes maximum dose of Gabapentin 900 mg 3 times a day, Oxicontin for pain with Percocet for break through pain, and still has pain. Can hardly walk. Fell twice recently--using cane for assistance. All the physicians are telling us it's too "early" for symptoms of radiation induced plexopathy. Nerve conduction studies--poor results--one nerve in Lt leg w/ no reaction at all; over all, no myokymic discharges so they are saying can't be plexoplathy. He is doing hyperbaric treatments at present to see if he can get any relief. He has gone from walking and doing fine to loss of feelings in his feet and legs, severe pain to the point he stays in the bed most of the day at least one day a week, urinary incontinence...Very tender in low back--if applies pressure, has pain at site and numbness, tinging down both legs. If we knew then what we know now, would not do radiation...but it's too late. We don't know what to do at this point.

During my research, Mayo Clinic physician in Minn., Dr. P. James B. Dyck, has a research article outlining same symptoms my husband has. Non-diabetic lumbosacral radiculoplexus neuropathy. Natural History, Outcome, and Comparison with the Diabetic Variety. Steroids, Imuran, Cytoxin were drugs of choice for treatment.

Radiation side affects issues
I had radiation last summer '09 and today having some upper hip pain. I had the DEXA (bone density) completed for first time February '09 and had some thinning in head of my hips. Not sure if this is just thinning still and having some pains??? My oncologist told me it's not cancer and to see my primary doc, which I don't have one now.

One thing I've always done, was work out. I tried the running again, as I love it so, but after a few months convinced myself to try no pounding type exercises. Well....after getting to the gym more regularly and cutting out running I'm better. Amazingly the pain is almost 75% gone. Since it's there, I'm meeting my radiation oncologist next week to see what he'd suggest, most likely have a scan of sorts. Nice to know what's going on, so I'll know how to treat.

Anyone find any type alternative vitamins for increasing bone density? I'm searching that route in hopes of finding something to help my bones.

Not easy getting old and then on top of that being zapped a million times with radiation and taking toxic drugs....what can we expect as our bodies can handle only so much.

Best to everyone,
Jan

wetz5526

cainp said:

Radiation Plexopathy with Myokymia
My husband was diagnosed w/ prostate cancer April 2009--had Robatic surgery May 2009. Radiation treatments (40) completed June 2010. Started having pain Lt hip during 3rd radiation treatment--which has progressed to debilitating pain requiring hospitalization at one point; he takes maximum dose of Gabapentin 900 mg 3 times a day, Oxicontin for pain with Percocet for break through pain, and still has pain. Can hardly walk. Fell twice recently--using cane for assistance. All the physicians are telling us it's too "early" for symptoms of radiation induced plexopathy. Nerve conduction studies--poor results--one nerve in Lt leg w/ no reaction at all; over all, no myokymic discharges so they are saying can't be plexoplathy. He is doing hyperbaric treatments at present to see if he can get any relief. He has gone from walking and doing fine to loss of feelings in his feet and legs, severe pain to the point he stays in the bed most of the day at least one day a week, urinary incontinence...Very tender in low back--if applies pressure, has pain at site and numbness, tinging down both legs. If we knew then what we know now, would not do radiation...but it's too late. We don't know what to do at this point.

During my research, Mayo Clinic physician in Minn., Dr. P. James B. Dyck, has a research article outlining same symptoms my husband has. Non-diabetic lumbosacral radiculoplexus neuropathy. Natural History, Outcome, and Comparison with the Diabetic Variety. Steroids, Imuran, Cytoxin were drugs of choice for treatment.

So sorry about your husbands
So sorry about your husbands situation. About 2 months after I had finished my radiation treatments I had severe muscle and nerve issues in my legs and had to use a cane for a long time. They first thought I had another tumor or purhaps ms but after many tests they couldn't find anything and told me it must be a "virus" that attached my pelvic area.I gradually regained most of the muscle/nerve back however not 100% and that's when I started with many of the symptoms I have today (which are much worse now). I think all of that was a result of the radiation and not a virus. Anyway, it's very frustrating because there's nothing that "fixes" this and trying to find out what will work best is rather hard too. I recently started seeing an Acupuncturist and it seems to help for several days but it doesn't last nor does it go away. You might have your husband try an Acupuncturist for his pain - it's worth a shot. I tried it as an alternate method - I was willing to try it as there aren't many options out there. Good luck to you and your husband. Barb