No, Amy, you're not crazy

[Guest guest]

Dear Amy,

I do encourage you to find a new doctor. And again if the next one doesn't take

you seriously. And so on

The first nl who diagnosed by daughter's Chiari (6-8mm) said it wasn't a big

deal, come back in six months. He had ordered the MRI because she was still

having constant headaches and vision issues following a concussion six months

earlier. But then she started with new symptoms, so he referred her to

neurosurgery. Sometime during then (last spring), I remembered that my daughter

began having serious problems with dizziness and blurry/double vision 7 years

ago. They had done an MRI which was read as normal and the peds nl concluded

that she needed psychological help. When I looked at that MRI myself, I saw the

Chiari. But this recent surgeon was annoyed with me that we wouldn't go to peds

nl again and insisted I HAD TO TAKE HER THERE and he would do surgery only if

she they said. Ugh. Being between a rock and a hard place, we went there, but we

didn't get an appt for 2 months even though my daughter was getting worse and

worse by the week, becoming more and more incapacitated. When we finally got to

that appt, the nl told us she has chronic migraines and the rest of her problems

are psychological.

In the meanwhile, we sought a second opinion with a new surgeon. She sent my

daughter for a sleep study. There, before doing the study, they insisted by

daughter stop taking a nap every day and wanted her to talk to someone about the

reasons for her insomnia (um, how about severe constant pain, inactivity, and a

head injury?). We never did get the actual sleep study done! This surgeon's

final recommendation was that I take my daughter to a specialist in chronic

headaches (she would give us a name, which she never did) and look into

biofeedback to help her other symptoms.

As the weeks go by, I'm watching my daughter get worse and worse. Her condition

is becoming frightening.

When we got these second results, I called the third surgeon to whom I had

already sent records and they said they would see my daughter, but I tabled that

because they were farther away, insurance coverage was a problem, and we had

been able to get in to this second surgeon. They gave us an appt one month away.

What a relief it was! Following the exam and discussion and looking at her

images (by now, she'd had more MRIs), he said " she needs surgery " and it was

scheduled for 3 weeks later, on Nov 18, 2011. He also said she has Ehlers-Danlos

Syndrome, which no one else had said a word about. He was the first one to ask

us to evaluate our daughter on the Lansky scale (the pediatric version of the

Karnofsky scale), where she was below 50. The insurance covered everything

because the first two who refused to help her demonstrated that there was not

appropriate medical care for her in our area.

Even those last three weeks were frightening, watching my daughter continue to

get worse and worse. During that time, she dropped to nearly 30 on the Lansky

scale. I don't know what I would have done if we didn't have that surgery date

coming up. It turned out to be a good thing, though, because she got a much,

much better surgery than if either of the first two docs had done it. The first

one said IF he did surgery, he'd not do a duraplasty because she def wouldn't

need it, the second never talked about the surgical details but I know of others

who've had surgery with her and were worse - not that that's been every case

with her Chiari surgeries. The surgeon who did operate did do a duraplasty,

using her own tissue (pericranium), which is ideal for my daughter because she

has sensitivities to many synthetics, and he added a titaniuim plate (which

neither of the others mentioned either.).

My daughter is doing very, very well now. She is not 100% and she may never be.

She herself (she is 14, btw) evaluates herself at about 85%. As she's become

more active, the EDS is showing itself more, and it's her biggest problem right

now. Due to her many months of inactivity, she had two months of PT after her

surgery, which I'm really glad we did.

Anyway, I tell you all of this in hopes that you know you're not alone and to

encourage you to not give up finding someone who will help you.

Take care,

ChrisN

<<Well thank you all for your helpful information. I guess I am going to have to

find a new doctor. This one sent me home with more migraine meds and only agreed

to do an mri on my brain to follow up on a cyst I have on my brain. He

completely ruled out even doing an mri on my spine when I asked for one. I guess

I'm in for a lot of changes because I'm sick of headaches and being in bed more

than I should be! Thank you all for helpling me not to feel crazy! I'm sure I'll

have many more questions to come!

Amy>>

_____________________________________________________________

This message was delivered by BlueFrog.com. For the best email, please visit

http://www.bluefrog.com

If you believe this message is spam, please report to abuse@....