Ariana's MRI results- worse than last year

[Guest guest]

Hi everyone,

So, yesterday I went in and got the report and CD from Ari's brain and

spine scan on Wednesday. I also got the dictation from her GI visit

on March 11 (what a joke!).

MRI findings are:

" Without contrast. No areas of restricted diffusion are seen. Again

seen is Chiari type I malformation with pointed cerebellar tonsils

with low-lying cerebellar tonsils and elongation of the fourth

ventricle.

T2 FLAIR and GRE weighted images are otherwise unremarkable.

Coronal T2 weighted images are also unremarkable otherwise.

Noncontrast study of the cervical, thoracic, and lumbar spine

demonstrates no evidence of cord signal abnormality. The spinal cord

terminates at L1 level....

No significant neural foraminal stenosis is seen within the cervical

spine (there's that word " significant " again that bugs me; why not put

none?).

Impression:

1) Redemonstration of Chiari type I malformation

2) No evidence of cervical spinal cord abnormality. No cord signal

abnormality identified. "

They clearly, intentionally, did not list a measurement for the

herniation. They just conveniently say " again seen " . Well, duh!

This is because it has worsened since last May, and they do not want

to report that! One her last MRI, it was 16mm. I've gotten good at

reading and measuring these things now and am very confident that I am

doing it accurately (with radiology software measuring tools). To

make sure, I measured hers from last May on the same CD and got 16mm,

same as them, so I know I am doing it right. This time, the

herniation is 22mm!! Not only that, but the tonsil is completely

against the brainstem all along the left side and appears to be pushed

against the vertebrae on the right (in other words, it looks

sandwiched in there, whereas sometimes even with herniations the

tonsil kind of just hangs down). Also, I don't know what significance

" elongated fourth ventricle " has, if any, but her prior reports have

both said unremarkable or normal fourth ventricle.

This is her first spinal MRI, and I have no clue what I'm looking at/

for there. I take it from the report they are saying she does not

have SM. But the symptoms she has been having since November or

December certainly sound like SM (daily numbness in hands and arms,

increased neck pain, some shoulder pain, intermittent trouble

swallowing). Granted, we're fairly new to this, so I'm no expert,

even for a lay person- LOL. But from the looks of her brain, it

doesn't seem like she could be having very good flow in there. I

guess that could be causing her symptoms even with out SM!

***If anyone want to look her images and tell me what they think, I

would welcome that!***

We got to her new NSG April 7, but I have very little confidence we

will get anywhere, and at this point I don't have any expectations of

getting help through Kaiser (I can say this, right, since I am not

naming a location/facility?). And even if at this point he said she

does need surgery, I wouldn't let these people operate because of our

experience thus far and their demonstrated lack of knowledge. We will

be investigating options for seeing Dr. Ellenbogen, Dr. Oro, or TCI,

none of which our insurance will pay for, at least without a fight.

But it's our daughter's health and quality of life at stake.

As for the GI report, the doctor stated: " History: [reason for visit

listed, then...] Recently she is under evaluation to EXCLUDE [emphasis

mine] arnold chiari malformation and awaiting repeat mri of the spine

[continues with other GI related things] "

Impression: Long history of feeding problems that are of more

concern at this time due to a current work-up for chiari

malformation. The hx of a very selective dysphagia does not support

any physiologic problem.

As I wrote about a few days ago, he then proceeded to write in the

feeding therapist referral that Ariana has " possible Chiari

malformation " .

It would be one thing if it were a matter of poor communication among

providers, or of misunderstanding. But this doctor wrote these things

after a very long office visit, in which I was very clear about the

frustration I was experiencing *about* Ariana's diagnosis not being

taken seriously (not her " possible " diagnosis, not her " r/o

diagnosis " , the one she HAS that is not, by anyone, being disputed).

I explained very clearly that the follow-up MRI is to check for

progression, that we suspect that is causing her worsening symptoms.

I also told him that we were sending records to TCI. So for him to

the write-up what he did is not a misunderstanding of her medical

condition or diagnosis. It is so angering... getting used to it

doesn't make it acceptable.

Thanks,

Beth