Re: Surgery

[Guest guest]

Yes, I would agree with following what your instincts tell you.

We've had to seek out separate opinions for varied problems that have appeared

over the last four years. Chiari was the first hurdle. Dr. Kerry Crone in

Cincinnati, Ohio performed the decompression surgery. We adore him. He helped

us when no one else gave us any reason to hope.

He (and several others) missed the t.c. diagnosis. Dr. Wehby in

Portland, Oregon released the thickened filum.

And the third puzzle to solve -- why couldn't keep her head upright

anymore? Dr. Bolognese and Dr. Kula in Long Island, New York diagnosed dynamic

cranial instability. (The odontoid was poking into the brainstem and causing

Chiari type symptoms to reappear). She is still young, eight, so she wears a

neck brace for about 6 hours a day to keep the pressure off the brainstem.

Eventually she will require cervical fusion.

We've met some wonderful people along the way. (And a few not so wonderful,

lol). I've learned not to take every word a doctor says as gospel, and never

let any of them steal my hope.

Life is never quite the same after you've entertained a neurosurgeon in your

pajamas :-)

Best wishes to all. I so appreciate this group.

's mom

Surgery

My daughter is 13,just had her 2nd untethering last year.Her first

was at 18 mos. We have had Dr. Carson since discovering her Spina

Bifida.We love him and have the utmost trust in his skills and his

faith in God's skills.We have always had our questions answered,

we've always seen him pre-op,everyday when she was hospitalized and

then have seen him post-op. He always seems to have the time for us

and makes us feel so comfortable asking questions and just talking

with him.We have never regretted choosing him.We are just fortunate

to live within one hours drive of Baltimore.But I think you really

have to make the decision by who you and your family feel the best

with in all regards.Go with your heart and your brain!Take Care.

Not Medical Advice. We Are Not Doctors.

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