Eye problems in survivors? Muscle twitching? Other neurologic issues?

Wid Member Posts: 4
edited March 2014 in Childhood Cancers #1
Hello everyone--

I am a 27 year old survivor of Hodgkins Disease. I was diagnosed when I was 12 and have been relatively healthy ever since. However, over the past few years I have developed some undiagnosed neurological problems, and a few people have suggested that they are long term effects of chemo/radiation. So I decided to come talk with other cancer survivors to see if they have experienced anything similar.

Eye problems-- flicking in my vision, particularly after going from a bright area to dark, or a dark area to bright. Especially bad in the morning. I also notice TVs and movies flickering in my peripheral vision.

Muscle problems-- diffuse muscle fasciculations (twitches) and muscle weakness. The weakness usually comes after exertion and is extreme (parts of my hand will stop functioning after I play sports) but it comes back. I used to be worried about ALS, but it's been over 2 years and there is no major progression. I also have mild atrophy in my thenar muscle and a scalloped tongue.

Myoclonus-- I get a lot of muscle jerks.

Parasthesia-- Intermittent tingling.

Tinnitus-- slight ringing in my ears.

This sounds like a lot of stuff, but I still function just fine. I go to work, go to school, have fun, travel, make music, perform, party, hang out, etc without this having a dramatic impact on my activities. But the uncertainty and the fact that it seems to be getting worse not better is starting to take a mental toll.

I look forward to hearing from people!


  • btcat
    btcat Member Posts: 51
    long term effects
    I am near 26 yrs past diagnosis of a cancerous brain tumor when i was 10/ almost 11. I have some similiar late effects.
    As far as my eye problems, I know that the Bad near sightness and pretty extreme astigmatisms (both the nearsightness and astigmatisms are different in each eye),were not caused by the tumor or treatments, but they were likely aggravated by them. I do know that a condition that causes my eyes to see on slightly different levels was caused by the tumor or the operation.
    I do get a lot of muscle twitches and as well as uncontrolled muscle movements - like my thumb moving in and out without my consciously doing anything.
    I have had a high pitched ringing in my right ear ever since my first surgery.
    I say my 1st surgery as I have had a not so small long term effect which my neurosurgeon said was in all likelyness caused by the radiation. About 4yrs ago I had a tumor on my brain, over my sinuses. It was benign. that surgery has caused exgeration and "acting up" of my phsyiological and emotional brain damage,etc.
    Because of my physiological and emotional problems, I can no longer work, but otherwise function most normally. But of what is normal in life after cancer?

    I am the gal in the picture.