Frustrated after daughter's NS follow-up today!

[Guest guest]

Hello all,

First of all, I wanted to thank everyone for all of the input this

past week. I responded to quite a few posts (to the group or

individually) but didn't get to all of them, and I wanted to say that

I was appreciative of every single one, even if I didn't get the

chance to thank you personally!

Ariana (9) had another follow-up with her neuro-surgeon today, and I

left feeling really angry and frustrated, even though I mostly

expected what we got. Granted, Ariana's symptoms are quite mild

compared to many that I've heard, but she does have a lot of issues

that at least COULD be related to her Chiari. The doctor basically

said her exam was " perfect " and that nothing further needs to be

done. He tried to tell me that people with Chiari don't typically

even experience neck pain (this is new for her in the past month or

two and pretty persistent), just headache (um, even a casual Google

search turns this up as the top two symptom along with headache as the

one that sends people for medical treatment that discovers

Chiari)!!!! I had to keep my jaw from dropping. He also said that

her daily morning arm numbness and twice now foot numbness is probably

" nothing " (what???!!!). He is redoing a head and spine MRI but only

because I pretty much demanded it and he said it " won't hurt to do

it... but people get neck pain and weird sensations all the time " . In

other words, he'll appease me, but there's nothing wrong with her.

It will be a regular one, not a CINE (which she has never done). If

this doctor won't even acknowledge that Chiari causes neck pain, he

certainly won't be the one to investigate it possibly being the cause

of her ADHD symptoms, failure to gain weight, chest pain, etc.... less

" classic " ACM 1 symptoms!!

I've done a lot of research, and I know often times (maybe more times

than not), these malformations are found " incidentally " , and that was

this guy's whole attitude today. That was not the case for Ariana,

though. Hers was " found " after a several MONTH period of severe

dizziness that interfered with school and play. Granted, that is

intermittent now, and this neck pain and arm numbness that began about

the same time a month or two ago may or may not have anything to do

with the Chiari, but to be treated like there is nothing wrong and

" oops, we saw this thing, but it doesn't mean anything, go about your

lives " , is very frustrating. (BTW, he said nothing about the bluish

mouth)

On a more positive note, I did look up a lot of the links several of

you sent me, and it doesn't SEEM like Ariana has the symptoms at all

of EDS (though I do have connective tissue/auto-immune problems) or,

for the most part, tethered cord. She has had a VERY hairy low back

since birth but doesn't seem to have other symptoms of tethered cord.

I am not going to say the name of the doctor we saw (my intent is not

to " doctor bash " , just looking for help!!), but has anyone else had

experience with PEDIATRIC neurosurgery at Kaiser Oakland who was

SUCCESSFUL getting insurance approval to be seen by an " expert "

elsewhere? It is probably more appropriate to contact me OFF-LIST

about this particular thing. I'm not interested in horror stories

about Kaiser experiences, just things that WORKED for you, because

honestly our hands are tied as far as insurance goes right now. We

pay them $1300 a month to care for our family, and that's about all we

can afford out-of-pocket right now. (No offense to all of the TCI

well-wishers/referrals I keep getting, but it is not financially

feasible unless we can wrangle it out of insurance. Obviously all of

us would want ourselves/our kids to go there ). Also, we are

*reasonably* close to LA, and I noticed two of the " second best " on

the list are there. I just don't know how it works to fight insurance

to send you somewhere else when the in-network person says there is

nothing wrong with the child.

Meanwhile, my prayers go out to all of you and your children who are

MUCH worse off than Ariana, who can run and play reasonably

comfortably most of the time!

Thanks,

Beth