So today's appointment was a pointless waste of time. First, our lovely hospital scheduled us with a NeuroSURGEON not a Neurologist.
Slight difference.
So he told us nothing about Xander. What he did tell us was alot of misinformation about Neurofibromatosis.
He told us genetic testing was completely accurate. It is not. If you test positive, then YES you have NF. You can falsely test negative and still have NF. It has to do with where the gene mutation is. So no, the test is NOT completely accurate.
He told us that 6 criteria must be met in order to be diagnosed with neurofibromatosis. And that is false as well.
It was just so ridiculous. But now we know why we had a feeling we should keep both appointments. If it is worth anything, the neurosurgeon today thinks highly of our neurologist we will see on Tuesday.
$27 dollar lesson and a missed naptime times two.
*sigh*
Stephanie
5 comments:
Steph,
So sad to have you leaving the other site, although I totally agree with your stance. You so eloquently signed off stating why and how it has effected you. Thank you for your time on that site and the perspectives that you have given me. I would love to follow your blog and have the ability to keep in touch. Not sure where I can leave my email address without it being public.
Jill
I work with Neurosurgeons and Neurologists and NS have a hard time understanding something that doesn't require surgery so technically he probably told what he has been told and what he thinks is right....that being said I hope your next appointment goes well and hopefully this is just an overreaction by another doctor just covering his bases.
Steph-
Sorry to hear the appt. didn't go very well. It is frustrating when you have more accurate info than the experts you are paying...If you do the blood tests for NF, find out first how much they cost and what your insurance will pay. We might have chosen not to get them (since they are not conclusive unless + like you said) when our dd was being evaluated for NF.
That is frustrating! Glad you kept the other appointment. Praying you get some answers and the medical attention needes for you handsome little man.
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