<p>My 19 year old D was just diagnosed with this. She has intense pain in her face and neck, but the neurosurgeon said he does not believe the symptoms are from the Chiari because the pain came on suddenly, but he thinks he should operate anyway because of the syrinx. Does anyone have experience with this? From what I read, it is so scary and rare. We see our first recommended neurosurgeon for a second opinion tomorrow.</p>
<p>Scary and rare about sum it up. No experience – just googled and saw what you’ve been seeing.</p>
<p>Hang in there. Maybe it’ll turn out to be something simple like an abscessed tooth. That happened to me – severe facial pain diagnosed as something bad and permanent, and it turned out to be a bad tooth which surprised both the dentists and neurologists. </p>
<p>Sending good thoughts and prayers your way.</p>
<p>Good luck to you and your daughter.</p>
<p>A friends husband had this surgery. I think the surgery pretty much changed his life. He had been suffering various symptoms for years (headaches, tiredness etc.) I believe he was told that he would be in a wheel chair in a few years if he didn’t have the surgery.</p>
<p>Here are some blogs of children who have chari malformations: [Life</a> With My Special Ks](<a href=“http://www.myspecialks.com/]Life”>http://www.myspecialks.com/) and [CaringBridge</a> / theyoungestof7 / Welcome](<a href=“http://www.caringbridge.org/visit/theyoungestof7]CaringBridge”>http://www.caringbridge.org/visit/theyoungestof7)</p>
<p>I know someone who had this surgery at age 12 due to increasingly severe headaches which lead to the diagnosis. Don’t know if syringomyelia was part of it. She fared very well with surgery at a major northeast medical center (leaving the hospital after 4 days instead of the predicted five), had a smooth recovery and is symptom free. It is considered neurosurgery, and major centers do have experience with this. You can usually send films to another expert for a second opinion if getting the patient there is an issue. I also know someone diagnosed at that same age and surgery was not recommended in that situation, but some specific types of sports activity were restricted. All the best as you research the best way to proceed.</p>
<p>My daughter was diagonosed with a Chiari Malformation after being run over. I would be interested in how your daughter is doing.</p>