Leaving soon to take my 9 year old son to TCI for his appt.

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Leaving soon to take my 9 year old son to TCI for his appt.

Postby YLAURIE » Thu Jan 24, 2008 3:25 pm

This is my first post on the pediatrics board. I have posted some on the other boards. My son has his appts. in NY at The Chiari Institute tomorrow and Monday. I am so worried about what we might find out! I have been diagnosed with TC, EDS, Chiari, and some of the other related problems. My son has been diagnosed with EDS and is now having some symptoms that seem like he might have a TC. He is also having some other health problems and I still am not sure if they are related to any of this. I am hoping TCI will be able to give me some answers. I am also having some testing while we are there but all I can think about is what we might find out about him. I have a blog, I posted an update about our appts. there today if anyone is interested please check it out.

Laurie

http://laurieyeh.blogspot.com/
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Postby brianfsmom » Thu Jan 24, 2008 3:51 pm

Laurie,

good luck! I hope they have some answers that are to your liking.

try not to be nervous. (easier said than done, I know ...)
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Postby YLAURIE » Sat Feb 02, 2008 1:38 pm

Brianfsmom, Thank you for the reply, I also posted this on one of the other boards here on the forum. My son loved reading the replys we got about his appointment. He seems to be finding comfort in the support also. We did find some answers at TCI, maybe not so much to our liking but now we know. I updated my blog last night about his appointment also. He does have a minimal chiari herniation 2.3 mm, retroflexed odontoid, cranio-cervial instability, a flattened pituitary gland, and a syrinx at T-3-T-9 with a small tail that goes up into the cervical spine. The syrinx takes up 15% of the spinal cord at its widest point. Dr. B also suspects a TC. This was all so hard to take in. I will add the link to my blog below if you would like to read more about the appointment. It is even tough to type it out. Brings out all the emotions again.

Thank you all for your private messages and emails.

Laurie

http://laurieyeh.blogspot.com/
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Location: Burke, Virginia


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