Opposing views


I took my daughter in for her one-year post-op last week. She had an angio on Wednesday. The radiologist came out and told me that he saw a shunting vein. He said the neurosurgeon would decide treatment – possibly gamma knife or a fourth craniotomy.

My daughter saw the neurosurgeon the next day. That doctor said there was no nidus on the films so there was nothing wrong. He said things were fine, and we don’t need to see him again for 5 years.

I am not sure how two doctors at the same hospital can look at the same film and get opposite views. My husband gives me a bad time for getting a second opinion. I am disgusted, but really ready to move on and figure out what to do or think. I am most likely thinking of just letting the chips fall where they may. I am sick of asking for images and sending them around the country and waiting for results. I really am uneasy with the idea of another surgery. Cutting into the same spot four times seems like a lot of risk to the skin. Surgery itself shouldn’t be risky because all the surrounding tissue is dead.

Rose keeps bumping her head into things, falling into things, crashing down the stairs, getting hit by two basketballs, smacking her head on a metal bar at a playground, etc. Every time, she winds up with a headache. But I don’t think a very small draining vein could cause all this. I wish I knew.

Any suggestions?

I am doing my best to just focus on other things and to find some sense of normalcy to our lives. But this is never far from my mind.

Take care. I hope things are quiet and peaceful for all of you!

Hi Tina,

Sorry you are hearing conflicting info. I don't believe that is too uncommon. One of our neuros suggested, when we were talking about going for a 2nd opinion, that we might get a different answer and then what would we do???????????

Based on training, the neurosurgeon's view might trump the radiologist's view. Maybe.

Normal is seldom a word used when dealing with seizures or avms. The best you can hope for is to live one day at a time, and make the best decisions you can based on the data that you have at hand.

Our son's epilepsy surgery (successful thank God) was over 6 yrs ago, and I still worry that he might restart seizures. My wife's last surgery was 10 or so years ago. So when do you think I can stop worrying about these two. Hint: Answer is probably never.................

Best wishes to you.

Ron, KS

Tina, the bumping and crashing mean that Rose's proprioception is impaired, which could very well be a side effect of her surgeries, rather than the AVM. See this article: http://thelizarmy.com/2010/06/our-sixth-sense-a-lesson-on-proprioception/

A physical therapist might be able to help your daughter learn to compensate somewhat. She should probably be exempt from PE. Basketball and monkey bars just don't sound like good ideas right now. Yoga and swimming would be good, though, or dance or tai chi.

The shunting vein comment, of course, troubles me. And any doctor who recommends a followup after 5 years in your daughter's situation is a doctor I would cross off my list. Give yourself a break as long as you need, and then start the scan sending again.