I just sit in the corner...

Have a child with SM/Chiari? Share issues unique to children and their caregivers.

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I just sit in the corner...

Postby sara b » Wed Jan 20, 2010 8:43 pm

HI Everyone,

I just sit in the corner and cry. I ask myself what are the Dr's missing. I have a 10yr old daughter who in 2008 was diagnosed with Chiari, Syringomyelia and scoliosis. Since her diagnosis we have done everything right so I thought.

We take her every 6 months for 4 MRI'S. She is being seen by a Chiari expert. She has a 504 at school. Well this visit to the Chiari expert he told us things are the same as per the MRI's. He stressed once again the syrinx with lifting ect...

While we were there I mentioned and she mentioned pain that she has had behind her eyes. Only a few times in the past few months. So, he said let me give you a prescription for an opthalmology evaluation. We went to my opthamologist and he did the usual tests. When he checked the optic nerve he got excited, nervous and lost his bed side manner. He became very concerned with glaucoma. We were scheduled for a field test two weeks later and guess what all the test results were, she has glaucoma.

As parents we try to do what is right. We are guided by our physicians. I can not help but feel she has been cheated by hers. They did everything right until I realized she has never has a cine MRI of the brain. I ask can there be a blockage? More than likely, but when speaking to her neurologist he wants us to follow through with the eyes before she goes back.

I ask myself "Do I take her back or is it time to move on? I think the Drs are missing something. The eye Dr told me she has the largest optic nerve he has ever saw.

Sorry but I needed to vent,
Thanks for listening

Cathleen's mom
sara b
Posts: 54
Joined: Thu Jun 26, 2008 7:15 pm

Re: I just sit in the corner...

Postby Mayzoo » Sat Jan 30, 2010 9:17 pm

I can sympathize, but that doesn't help much. Sweetie sees a neuro opthamoligist every six months to make sure things are going okay with her optic nerve, but they did not mention she was almost completely blind in one eye despite my asking what her vision was several times.

Sorry the story is longer, but I do not want to bore or depress you with it, just keep after them about her vision is, and what can be done now to help the whole situation get better. Glaucoma is treatable, but I know that does not help either.
My Sweetie DOB Feb 2002, DXs: ACM1, AC, SM, Autism, SID, Torticollis, Bi-lateral strabismus. More than the sum of her diagnosis'. Reminds me of Elmo :D
Posts: 21
Joined: Thu May 24, 2007 6:12 pm

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