confusion, incontinence, steroid myopathy

[nvsavin]

Can someone please offer any input into my mother's condition. Trying to make a long story short: liver mets in 2002--cleared by Herceptin. Body remains NED. In Jan. 2005, brain mets. 6 lesions treated with WBR and then gamma knife. Was doing beautifully until Jan. 2006 when one lesion appeared to be growing. Neurosurgeon believed it to be necrosis. Continued to grow until finally, one month ago, it started to shrink, just as the neurosurgeon expected--that was the nature of necrosis. He stated my mom was "finally over the hump." But then, right after that MRI in early august, she barely could walk, she suffers from periodic incontinence and is very confused. She was admitted to the hospital. They repeated the brain MRI which was fine and did a bone scan which was clean. About 3 months earlier she started decadron again. The oncologist suspected the decadron was too much for her causing her steroid myopathy which is why she can't walk. But what about the incontinence and the sudden extreme confusion? Has this happened to anyone? Any input? Thanks to all.

[rosie]

Has anybody suggested that she might have something called hydrocephalus? ( specifically normal pressure hydrocephalus? ) I wish I could describe it better but it is sometimes very subtle to detect on a regular MRI. Is your mom seeing a good neurosurgeon who deals with rads? THis would be the way to go, or a really good neurologist who has dealt with whole brain.

It must be really frustrating to be told she is ok and yet she has all these symptoms.

Good luck!

[nvsavin]

Thank you so much Rosie. Her neurosurgeon seems very competent. He is also the one who performed the gamma knife. I looked up the symptoms and it does sound exactly like what she has, but her last MRI with him in early August and the one done 2 weeks later at the hospital both specifically state no hydrocephalus. Is there another way to detect it?

[pattyz]

I think these questions should be directed at your mom's neurosurgeon. If in fact the decadron could be the reason for all three of her current health issues, he SHOULD know, since he is the brain man. (That is just my opinion. )

And it sounds very scary for your mom, it would be for me. I do have brain mets. For the third time. For four years. So, I know the fears of what 'might' be.

I hope you can get these problems addressed prompty and will have a satisfactory outcome for your mom.

Hoping for the best,
pattyz

[rosie]

I would go back to the neurosurgeon since you have confidence in him/her and ask about this. I don't know enough about it truthfully but I did find a link to a national organization info@hydroassoc.org
If you do a google search there seem to be several national organizations.

Best of luck. I know it must be so hard......

[Emmay]

Whenever my sister has had to take decadron before/during/after CyberKnife radiation treatment for her brain mets, her leg muscles become very weak soon after the course has begun, to the point where it is very difficult for her to get out of a car or up from the floor without help. She is 49, slim, and was in very good physical shape before starting treatments, so if your mother is elderly I imagine the steroid's negative effects could be harsher for her.

The doctors have always tried to taper my sister off the decadron as soon as reasonably possible after treatment because of those side effects, and then the strength in her legs returns very gradually. You might consider asking your Mom's doctor if it's necessary for her to still be on decadron if her met is shrinking? If so, could her dose be lowered?

Decadron can be a difficult drug to tolerate emotionally as well as physically, but radiation oncologists say it is one of the best methods of controlling brain edema. I hope she finds relief soon.