Everybody,
We are just healing from my daughter’s third craniotomy. We don’t see a great deal of additional deficits. But I was wondering what’s been everyone’s experience with neuropsych evaluations. Debating whether it would be worth having another one for my daughter or if we just forget it unless we see something specific that we need to check.
Thanks,
Tina
Hi Tina,
Wow, she’s been through a lot! All of you. I hope this crani is the last.
I remember that my husband’s neuropsych eval was stressful on him AND on the evaluator…they both came out at lunchtime looking like they wanted to cry! We hoped that the test would identify weak areas, and the doctors could recommend ways to prop those up, but NO on both counts. First, the results were impossible to believe; he’s a fully functioning person, but he scored in the single digits in one category, and no one can explain why or what it could mean. Second, for the scores that were believably low, the doctors couldn’t suggest anything to help bolster those areas. So, we figure we’ll hang onto the results in case they’re useful as a baseline for some later comparison… but there’s nothing they can do for us now.
That said, some deficits only become apparent over time. We also have a tendency to normalize what we see, saying things like “She’s just tired,” or “She’s just cranky,” when really fatigue and irritability could be treatable symptoms rather than ordinary happenings. So there might be things going on that should be addressed, but just aren’t yet visible as symptoms to the family. Since your daughter’s young, of course you want to catch things as early as possible, and the doctors might be more interested in helping her work through any deficits.
So those are my arguments either way… I think the most important thing is probably to keep up with her rehab and whatever you would be doing to keep her growing cognitively and emotionally.
JH
Hi Tina,
I’m not exactly sure what a neuro psych eval involves, though I suspect Chari had one as part of her AVM treatment. My question would be "What is the good that will come from it versus any emotional damage it might cause just doing it?"
I would be concerned that emotionally, she’s doing ok with all of this. For a child, she’s had to go through what most adults never have to. I think I’ve mentioned it before, but following Chari’s treatments, the whole family went to a long time friend who was a counselor (psychologist I believe). He was a dad, had lost a wife to cancer, and was a Christian as we were, and he was very good at what he did.
He spoke with all of us a few times, then Chari individually, me individually, the kids together and the kids separately. Our kids were about 10-12 at the time, and had concerns about what was gonna happen with Mom (and to them). He also helped them be ready for questions about what was wrong with Mom, etc.
I think that whole counseling thing was very beneficial to each of us and would highly recommend it with a person you feel very comfortable with.
Hope this helps.
Ron, KS
I have nothing but good things to say about my neuropsychologist but I went to him over a year after my craniotomy, when I went back to work. I had severe anxiety issues after everything and wanted to make sure it wasnt physically caused by the surgery. I never went through all of the testing because he said he could tell just by talking to me that I didnt have any cognative issues. Just talking to someone who understands what happened is extremely helpful. The doctor should take it into consideration that he is dealing with a child and it shouldnt be a stressful experience. I would think its a good idea to see a neuropsych and if you dont like how things are going then try another one.
My doc said the neuro psych eval was too time consuming and expensive and too difficult to find someone to administer. she said wait and see if I see a specific defecit
Hi Tina
I had a neuro-pshych exam done a year ago or more. It was not a bad experience but, It was 5 hours long. It was a very longgg day. I have to agree with the others on this. Your daugher and your family (including you) have been through a lot (I read your profile). I wouldn’t bother with having it done (not yet) unless you see some kind of change in her that you feel should be looked into. It’s just my opinion. Take this time to heal…and let things come back into balance. You all deserve it. As time progresses, You’ll know if she needs it done or not. 
Ben
Thanks, everybody. I think we will wait a bit to see if we notice more specific deficits. One issue is that my daughter’s school will not accept testing done from Mayo Clinic because it’s out-of-state. But you’re right, we have been through a lot. My daughter has been through a lot. I think we will just hang low for now and hopefully enjoy a quieter stretch.