Re: [CCIparents] New to lists, mom with questions

[Guest guest]

HI, and thanks for responding. Yes, we've seen two neurosurgeons

(sorry, I used the abbreviation NS in my post) and two different

organizations. Admittedly, I didn't ask either of them what their

specific experience with Chiari is, but they both *seem*

knowledgeable. One was at Lucile Packard Children's Hopsital, where I

used to work, and I highly respect their expertise in general

(although the obvious drawback there is that it is a " teaching "

hospital, though I *think* you have the right to refuse resident

care)). The second one (changed only due to insurance) was drawing me

pictures and things, and I liked that he was being conservative in

regards to surgery, etc. On the other hand, I felt kind of funny

when, based on statements I was making, one or the other of the

surgeons (don't remember which now), made the comment that it was

obvious I had been researching and that it wasn't really necessary!

Tuesday or yesterday I made Ariana's six month follow-up appointment

for February 4th. I just got a call that they had a cancellation and

would like to see her this coming Monday, the 14th! So, I am

scrambling to sort out all of the suggestions on here (in list format)

to take in there to talk to the doctor about. I'd like some pre-

emptive advice from the group on how to handle being blown off, in

case that happens. I'm generally not a person who gets intimidated,

but when *I'm* not the " expert " , I'm not likely to argue against one-

lol. She seems to have relatively mild symptomology in comparison to

many stories I read on here, but at the same time, there seems to be a

lot of follow-up that needs to be done, and I want it done, not

another " come back in six months and tell me how she's doing " !!!!

Thanks,

Beth

(and good luck with your son as well! I'm sure it is hard dealing

with both Autism and Chiari!)

>

> Hey, Beth.

>

>

>

> So, you haven’t been to a neurosurgeon yet? That should be your next

> stop. Chiari is a neurosurgical issue; a neurologist can’t do

> anything for it except give drugs to treat symptoms. The nsg can

> tell you if surgery is necessary, what it involves, how much it will

> help, and what recovery is like. A neurologist won’t know any of that.

>

>

>

> Be aware, too, that only certain nsgs are experienced with Chiari. I

> made the mistake relatively recently of trying to talk with my nsg

> (I have always had hydrocephalus) about my son’s Chiari, and as much

> as I love my doctor, we got nowhere. It broke my heart, but I

> learned a lesson, too. We are now hoping to go to Dr. Frim in

> Chicago sometime in the next year, as his name is the only one that

> has come up time and time again as the go-to nsg in respect to both

> autism and Chiari, which we need, as our son was dx’ed with autism

> at 2 ½. (He is 13.)

>

>

>

> Good luck, and please ask any and all questions. This is a wonderful

> and knowledgeable group. Someone can help.

>

>

>

>

>

> LIZARD ;-)

>