Tell me not to worry :-)


I need a little reassurance – I know you all understand this very well.

My daughter is 11 – AVM bled in 2009 and required emergency surgery. Two other surgeries were required (2010 and 2011) to resect residual pieces of the original AVM. That left her with loss of peripheral vision on the left side (injury on right side of brain).

In the past few months, she has lost peripheral vision on the right side. Her doctors suspect a stroke on the left hemisphere, but we haven’t been able to get any imaging to get a diagnosis. She’s got increasing short-term memory lapses, dizziness, odd pain in her ears. Her visual deficits are causing a lot of frustration since she runs into things, spills things, drops things, etc.

Maybe it’s me being paranoid, but it just feels like she’s going downhill physically. Part of me is afraid that I am gradually losing her – at least the little girl I know.

She’s scheduled for a cerebral angio this week. Her angio last summer really didn’t help us – Neuro radiologist said she has a regrowth or residual AVM, neurosurgeon said there was nothing wrong.

Why do I feel like I am losing her?

Tina...stay on top of these doctors..You are her Mom and know your daughter better than they do..Explain to them everything you've just wrote. My thoughts and prayers are with you! Please keep us informed on how her angio goes.! Stay Strong & Positive, Tina!

I'd encourage you address this w/ Dr. Steinberg's team, or whom ever you have the most trust in.
Personal experience has taught me to not rely on the opinions of my local radiologists & neuro for CM-related opinions, as they don't have the knowledge & experience of my neurosurgeon.
Best wishes.

Tina...Patti is the perfect person to listen to....She has the best knowledge on dealing with neuro docs. Hang in there!

Get more opinions if you aren’t sure about something. I wouldn’t worry, you aren’t losing her. It took my mom awhile to stop feeling worried even when I was out of the danger zone, but it’ll be ok. Ask her doctors all the questions you can come up with, don’t be shy, that’s what they are there for, it’s their job. Find out and research all the treatment options they give you. Other than that, I think the most important thing you can do now is just keep her close and let her know you are there.