My middle son, I'll refer to him here as NJ. He's 9 years old and has Chiari Malformation. (Pronounced KEY-are-EE)

"Chiari malformation is a rare abnormality at the base of the brain that results in brain tissue extending into the spinal canal."


Chiari Malformation has MANY symptoms, but here is a short list of the most prominent ones:

Headache and neck pain, dizziness, vertigo, disequilibrium, visual disturbances, ringing in the ears, difficulty swallowing, palpitations, sleep apnea, muscle weakness, impaired fine motor skills, chronic fatigue and painful tingling of the hands and feet.

He was diagnosed with Chiari when he was about 4. At the time, the 2 Doctors we saw could not agree whether or not he needed to have Surgery or not. We chose to wait and watch him for worsening symptoms. We didn't see any until recently. For the past few weeks NJ has been having trouble swallowing. He chokes and gags easily on his food. If you watch him while he eats, you can clearly see that it's difficult to swallow. He chews, then slowly swallows while putting his chin down to his chest and squinting his eyes. The Pediatrician saw nothing unusual in his throat, no enlarged tonsils (because he doesn't have tonsils anymore lol) or redness. Turns out Difficulty Swallowing is a red flag symptom of Chiari though and so we've decided to take him in for a followup.

This time we're skipping uninformed, inexperienced Doctors and we'll be traveling to Chicago to see a Neurosurgeon at the University of Chicago Children's Hospital. He considered one of the BEST at Treating Chiari Malformation in Children. He knows his stuff, and we feel our son deserves to see the best. NJ will need all new MRI scans and the Nurses in Chicago are working out a plan so they can be done while we're there, just before he sees the Neurosurgeon.

So on top of this Adoption stuff, we are busy arranging childcare, appointments, travel and accommodation arrangements!

I'm very nervous about visiting Chicago. It's a huge city and I'm not familiar with mass transportation. Just reading the directions from the Airport to the Hospital had my head spinning!

2 messages:

  1. ~ Kelly said...

    ugh, I'm sorry your son is showing signs of things getting worse. My little one has had numerous medical issues but it's all been within 2years so we haven't had to wait things out and watch for stuff. I hope all goes well for you! And GOOD FOR YOU @ taking him to the best doctor!! Chicago really isn't that bad. I live about 3hrs away from it and visit there frequently.. Now I personally wont drive in their traffic- just b/c I have issues with cars in general-but if I needed to I could get around there.. It'sreally not so bad.. Good luck!!  

  2. cltgrace said...

    I see you survived Chicago. I'm a suburban baby but have early intervention clients in the city. It's not so bad, eh? I love the city - Lake Shore Drive is the most amazing drive with the sunshining on my face & boats dotting the harbor.

    I'm in neuroscience right now - working on my 2nd masters for speech/language. So, working hands on with the brain, spinal cord, cranial nerves etc. This diagnosis is facicnating, if I can say that without offending you. No doubt you've found out more since this appointment in Jan. If you don't mind, I'd like to discuss Chiari malformation in my class next week.

    Thanks again~  


 

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