I just got done with my daughter's conferences and while there I had a few concerns in Communication Arts she is struggling they said according to a test she just took she is reading at a 6th grade level please note she is a freshman who has always been advanced. She also is struggling bad in math. She was diagnosed in February of this year after 2 years of seeing a decline and now I see a decline in her ability at school as well as the headaches, passing out, black outs, and drop attacks. Please can someone offer me advice on her and if this could be related to Chiari I am just looking for help and things that I need to discuss with her neurologist as we are seeing her again this Friday however she doesn't seem to into my daughter's issue and I am actually quite frustrated and the lax approach as she seems to be getting worse.
I totally can relate. My son (15)was diagnosed may 2012 and had decompression surgery July 2012. Headaches are what brought us to the DR but some many problems and changes had been occurring since 6th grade. Looking back now it all makes sense. He was so smart but was struggling in school, his writing was declining, he used to be really photogenic but all of a sudden had blank stare in his eyes and could barely smile. His walking, balance, and gait all change. Just very awkward and slowly the Drew we used to know was disappearing. We talked with the school several times and our dr and they said maybe it was ADD and puberty. The headaches started about the same time but were activity induced. When they became chronic we brought him in and his MRI showed Chiari with syrinx. I oannot believe just 8 weeks after surgery the old Drew is slowly emerging. It has only been 3 weeks at school but he is doing amazing! Writing has improved, he has all A’s, and socially he is getting back out there. He still gets really tired easily but I feel awful that he suffered that long and we kept asking what is wrong with mo answers. I feel your pain. I truly feel like it is all related but I know some DR don’t. Anything that your cerebellum controls can be affected so it only makes sense. I hope you find the answers you deserve because it is so hard watching your old healthy child disappear.
She has a 5 mm chiari malformation her CSF flow study showed what they say is normal. The NS wanted nothing to do and said her symptoms could be and could not be but he wont do anything I don't like him at all I feel that I am at witts end with all this and the decline of my child. NS said a 5 mm he wouldn't even consider as a Chiari
She has a 5 mm chiari malformation her CSF flow study showed what they say is normal. The NS wanted nothing to do and said her symptoms could be and could not be but he wont do anything I don't like him at all I feel that I am at witts end with all this and the decline of my child. NS said a 5 mm he wouldn't even consider as a Chiari
Emmaline said:
NL are notorious for downplaying the role Chiari plays in our symptoms. Please ask to be referred to a NS specialist instead. There is no reason to be put thru this when she is clearly having troubles.
Wow! Sounds a lot like my 15yr od daughter who was also a Honor roll student, until symptoms started, fatigue, headaches and hand tremors. She now totally struggles with Math, Science, and Lit. Her neuropsych revealed she had a language processing delay, and that she would benefit from less lecturing type classes. That she be given the notes to study for test. She is under grade level in some areas, yet above in others. We are waiting for the conclusion of the test to come back so that the school can make necessary accomodations for her. She was recently diagnosed with CHiari 1, and has an 18mmherniation. Still trying to make decision on the surgery, her NS is encouraging us to have it. Hope I helped somewhat. Good Luck:)
Many of us have brain fog, confusion, visual problems and I have a very hard time reading small print and books. I am so sorry your daughter is having a hard time in school. My heart and prayers go out to you.
Wendy
I would seek a second Neurosurgeon's opinion. You are your daughters Health Advocate. You need to be comfortable with her Neurosurgeon.
chiarimom98 said:
She has a 5 mm chiari malformation her CSF flow study showed what they say is normal. The NS wanted nothing to do and said her symptoms could be and could not be but he wont do anything I don't like him at all I feel that I am at witts end with all this and the decline of my child. NS said a 5 mm he wouldn't even consider as a Chiari
Absolutely get a different set of doctors! At the point you are at, I wouldn't even bother with a neurologist. Find a neurosurgeon that knows what Chiari is and how to treat it! Great info above by the way:)
Carla
St. Louis Children's is suppose to be the best hospital there is so I have no clue where to turn. I am literally making my ownself sick over all this trying to figure out how to make my one and only child better as I see her on the downward spiral..it is so frustrating and tears my heart apart.
Carla Jo Stone said:
Absolutely get a different set of doctors! At the point you are at, I wouldn't even bother with a neurologist. Find a neurosurgeon that knows what Chiari is and how to treat it! Great info above by the way:)
Carla