Update on Ariana, sort of

[Guest guest]

Hi everyone,

First of all, I want to extend a sincere thank you to everyone who responded

to my last couple of posts!! I have been sick myself and pretty

overwhelmed, and there was no way I could respond to each of you. But I do

thank you all for taking the time to write to me, privately and on the

group. I really can't tell you what it means to me. We've been on this

journey for 5 years now, and I don't really feel like we've gotten

anywhere. But I'm blessed to have this group of people who knows and

understands. The " friends in the box " .

I wrote last of Ari's sudden onset of bursts of pain in her head. The

pediatrician said over the phone that she suspected migraines. The next day

we saw her, and she was more skeptical of migraine but said she felt the

pain was neck muscle related. Ugh! it's times like these/those that I just

have to nod and smile and keep my mouth shut. Because yeah, I'm sure she

did have tight neck muscles. Her brain is wobbling around unsteady all of

the time, and it probably takes every muscle in her body to compensate. But

that's nothing new. That's nothing that was all of a sudden going to cause

her intense, debilitating pains. In any case, she told me to give her neck

massages. I didn't. Ari hasn't had that particular pain since. She did

start on Clonidine for sleep and ADHD, and we were told that it should help

her tics. But her tics are much worse. I don't know if it's that med,

changing another ADHD med at the same time (generally bad practice, but she

was desperate for sleep), or coincidental altogether.

At someone's suggestion (sorry, don't remember who), I did ask her NSG to

add an MRA to her MRI series that was already due. I was very skeptical,

but he did order it (well, and MRV, not MRA)! I would actually like to ask

for one myself. That's the first I've ever heard of that being done for

migraines. But I digress. She had her annual brain and spine MRI yesterday

under anesthesia, plus the MRV.

I wish I had some news, but I don't. For the first time ever, the brain

images on the CD (I never leave without it in hand) are too blurry to make

much sense of . But what I can see of the typical " Chiari view " looks

really strange. She has always had a 22mm herniation, and it always looks

like a cheese wedge on the MRI. That's the best way to describe it; like a

triangle perfectly wedged against her brain stem and vertebrae (thus, the

CSF blockage). Maybe it's just image distortion, but this thing looks like

her brain fell out of her head. I'm not being funny. I know people joke

about that being the definition of Chiari, but that's what this LOOKS like

for the first time. The top part of what is below the foramen magnum looks

like part of the actual cerebellum itself, not the tonsil. Is that even

possible? Like I said, maybe distortion. I have no idea what to look for

on the MRA. All I know is it looks really cool! I've never seen one! It

looks like something out of a movie. He wouldn't reorder a CINE study, but

I guess it doesn't matter. We already know she's completely blocked, and

they aren't concerned. From what I know about spotting syrinxes, she

doesn't appear to have one, but for some reason he only ordered a C-spine!!

We'll see what all of the reports say.

Thanks,

Beth in NorCal

" I will persist until I succeed, I will never consider defeat. If the

disease of despair should afflict my mind, I will work on in despair. I will

ignore the obstacles at my feet and keep mine eyes on the goal, for I know

that where dry desert ends, green grass grows. " Og Mandino

Beth Fitzpatrick