Update about Ariana (very long, but short paragraphs)

[Guest guest]

Hello all,

This is mainly to express my frustration with this whole process, and

I hope that those of you who have been through it will remember when

it was new to you and not be too irritated with my rant . But in

the rant is an actual update on my daughter's situation and the stand-

still we are at. If anyone has specific experience or suggestions

(other than telling me to change insurance, because that is not an

option) or encouragement, we could really use it. It is long, but I

have broken it up into short " paragraphs " for those of you with vision

problems.

I don't know when I last updated, and there are always a lot of new

members, so I'll do a brief re-cap also.

Ariana (age 9) saw her neurosurgeon on January 14 for a 6 month follow-

up on her ACM 1. At the time, I couldn't remember the length of her

herniation, and I know that doesn't necessarily matter. I know what

it is now. She has been diagnosed for a little over 18 months now.

She had been having some new symptoms of daily numbness in her arms

and hands upon awakening (fairly short-lasting each time, though) as

well as a couple of times when she had turned blue around her mouth

(inside the house where it is warm and without any accompanying

respiratory symptoms). She was/is also complaining of neck pain

fairly often, which was new. All of this was in the month or two

prior to her appointment.

The symptom leading to her diagnosis was severe, multiple times daily,

dizziness that was interfering with schoolwork and play. That has

pretty much resolved, though she gets it intermittently now. She has

only occasional headaches.

Because of the new symptoms, the NSG said he would order an MRI,

though he made it sound like it was more to appease me than because he

thought it should be done. He repeatedly said that her neuro exam was

perfect, which he made sure to also put in his dictation that I now

have a copy of. Also in his dictation he notes how unhealthily thin

she is and that she should " follow up with GI for continued feeding

issues " . Duh! We've been trying to get someone to pay attention to

her failure to gain weight her whole life.

I waited about 10 days after not being contacted by the MRI department

to call them. I was told there was no order in the system, and that

began our battle! I called the NSG dept. and at that point, the visit

had not even been dictated! Two days later, the MA called me and said

the dictation indicated that the MRI was to be done just prior to

" ROUTINE 6 MONTH FOLLOW-UP APPT " . The doctor had not even mentioned a

follow-up appt. to me, just said we would do the MRI and go from there.

She said that she would be entering that order in four months from

now!! I told her that was completely unacceptable and that the MRI is

*supposed* to be being done because of acute symptoms to check for a

syrinx, not for a routine follow-up. She kept arguing with me and

said that if my daughter is having new symptoms, she needs to be

seen! I told her those are the symptoms we *already* told the doc

about and that is why she is supposed to have the test! I was so

angry. It wasn't until I demanded to speak to the doctor that she put

me on hold for fifteen minutes and came back on and said the doctor

OKd it to be entered for " now " .

Two days later, I called the MRI department again. I was told that

the soonest my daughter could be scanned because of the need for

sedation would be the end of April!! Plus, the MA entered the order

as " routine, to be done in 4-6 weeks " (I guess entering it " now " meant

literally putting the order in then, not to be done " now " ). Gee, at

least I got it moved up from 4 months on HER end, but now MRI

scheduling was the problem. I told them that was not acceptable and

waited four days for a supervisor call. She told me the best she can

do is March 26th.

Supposedly this is because they need two hours for the brain and spine

scan (this is in ADDITION to the pre-call time of two hours for the IV

nurses for sedation). My brain MRI took 15 minutes start to finish.

I have gone with sedated pedi patients for these scans, and they don't

take two hours. I don't know where they are coming up with this

figure. But in any case, as of this moment, my daughter's scan will

be the end of March, 10 WEEKS after making her NSG aware of these

symptoms, 4 1/2 months or so since the new symptoms began!

Last Wednesday, I took Ariana back to the regular pedi department to

address my concerns, as someone from this group suggested. One thing

that complicates this process is that our regular pediatrician has

been on maternity leave and won't be back until mid-March. I was told

when making this appt. that this doctor specializes in neurology (even

as a general ped.), so I went in feeling confident that we might get

somewhere. Instead, it was all wrong. His specialty is neonatology

(premature babies), not neurology.

I felt like crying. It is nightmares like this that I don't regret

leaving the medical field. He did freely admit that he knows little

about Chiari and suggested that we return to her current NSG's

partner. (I will never take her back to her current one again!!). He

also gave me a copy of the MRI report from last May and dictation from

this last consult, and I finally saw in black and white, that Ariana's

herniation is 16mm. I'm still waiting on a copy of her original

report from the year before from a different hospital to see if it was

in fact the same. The current NSG said it was.

The thing is, I am not confident that a different doctor in the same

practice is going to throw his colleague under the bus, so to speak,

and the MA and PA both have the same crappy attitude as the current

NSG already. Plus, it is 90 minutes away, and that is the closest

surgeon! A long way to go to be laughed out of the office. (And we

live in a metropolis, not the middle of nowhere!)

The first thing that needs to be done, regardless of who she sees, is

this MRI, so I left a message with the NSG dept. MA again after the

appt. Wednesday evening. I was very clear that I wanted a doctor or

PA to call me re MRI scheduling. Instead, *she* called me the next

day and said she can't pass a message along without writing what

symptoms the child is having. Of course she remembers me, and she was

being patronizing. I told her the message she could pass along is

that if my daughter ends up paralyzed because no one cares to even

look and see what is going on, they will all be responsible, and I

hung up on her. I had just had it!!

A PA called me later that day and gave me the line I put in my last

post about how it wouldn't even mean anything if she does have a

syrinx now and that there is nothing to suggest that she needs an MRI

done right away. He referred to the NSG's dictation, that Ariana

" looks perfect " . He reiterated to me what an invasive surgery

decompression is and that they don't " go in there messing around on a

child who looks as good as your daughter " ! As if I am begging them to

mess with her brain. I never said *anything* about surgery!!

I told him that even since that visit Ariana has a new symptom that is

concerning to me. She has always had feeding issues, but usually when

she refuses to eat it is " just because " . Now she says she feels like

there is something in her throat, like she can't swallow some things

(not just when she is eating but then too). It isn't constant or

progressively worse, so I don't know if this is even Chiari related,

much less a " red flag symptom " as referred to in one of the TCI

videos. But it is certainly one more thing that worries me and makes

me want this MRI done NOW to see what is (or isn't, to put my mind at

ease) going on. I made it clear to him that we have *never* sat down

with Ariana and told her symptoms of Chiari, so it's not like she is

even subconsciously manifesting this stuff.

The PA said that if I am concerned about her eating I need to contact

her GI provider and that a throat problem is not Chiari! Just like

the NSG said neck pain isn't related to Chiari! I told him these

symptoms in *her* may not be, but does it hurt them to order the MRI

to be done sooner than later? What's it to them if everything looks

the same? After all that ordeal, he assured me he would order the MRI

to be " moved up " .

It has been over a week since that conversation, and I was not

contacted by the MRI department. I called them today. The scheduler

looked it up and said that yes the PA put that order in, but that

doesn't change the fact that the schedule if still full!!! She said

if he wants it done sooner, he has to call and speak to the

radiologist directly. She had me on hold while she called Ariana's

NSG and according to her spoke directly to him to tell him that. I

have about zero confidence that will happen, since he thinks nothing

is wrong with my daughter.

Someone said to fire your provider if they seem incompetent, and I

would do just that. The problem is, then you have to get a new one.

In our area, with our insurance (which we pay top dollar for), this

practice I have described has the only 2 pediatric neurosurgeons. I

don't know where the next closest would be. I called our Member

Services and asked how we can get a second opinion outside of Kaiser

and was basically laughed at.

She said the specialist treating the patient (follow me- the doctor

who is saying nothing is wrong with my daughter) has to file something

saying that the patient has a condition which NO doctor within Kaiser

can treat (not just themselves but no other Kaiser doctor).

I said, " so let me clarify; the doctor who we don't want to see

because he is not providing appropriate treatment has to be the one to

petition to send us to someone else " ? She said, literally, " bingo " !

Then she made sure to tell me that we are free to take her wherever we

want to be seen, but we just have to pay for it ourselves. Thanks for

the permission.

Meanwhile, every day that goes by I have to wonder if whatever is

wrong is getting worse. Like the NSG said, Ariana looks great. She

can walk and run and talk fine. But *something* is causing the

symptoms she is having, even if it isn't the Chiari. Something

changed in me when I got the report and saw the 16mm. I know that the

number by itself doesn't mean anything. But a bigger number is " more

likely " to be significant and problematic, and it pisses me off that

both of her NSGs (this one and her initial one at diagnosis, before we

changed insurance) treat this like it's nothing, like a borderline

case. 16mm is different than 3mm (I *know* people with 3mm can have

impairment, too, and I don't mean to downplay that! I guess I'm just

saying that knowing hers is that long *and* she's having all these new

symptoms makes me even more concerned and more angry that everyone is

refusing to do anything).

Ariana is a gorgeous actress/model/singer, compassionate, loving,

brilliant child, and to look at her and think that because the $1300+/

month we pay for health insurance isn't enough to get her the right

care her future *might* be dimmer is heartbreaking. I honestly don't

understand how so many people on here talk about going to TCI (or

another of the second choice experts) " out of pocket " (with no out-of-

network insurance benefits). We are a high income family, but we have

high expenditures. There is no way we can afford thousands of

dollars for consults and testing, and doing hundreds of thousands of

dollars of surgery uninsured if that ended up ever being indicated

would not even be a consideration. So is everyone independently

wealthy?

Thanks for letting me vent, and I'm sorry for the length.

~Beth~