Monday, June 28, 2010

Update 6/28/10

Just cleaning up this site a bit and thought I'd let everyone know that the boys were born 12/7/09 (I've been a little busy since then) ;)

Aren't they cute?



I had a c-section with epidural and had zero complications. YAY! Still "cured" of all Chiari symptoms. YAY!

8 comments:

Marla said...

I started following you several months ago when I was diagnosed with Chiari. Congrats on your boys! I'm also struggling with infertility, although it kinda got put on the back backer with the whole Chiari thing, and you probably know what I mean.

Glad to hear that you're still symptom-free. I've read through all your old posts and found them to be very helpful, so thanks for documenting your journey for all future Chiarians. :)

Anonymous said...

Very cute kids! I' have untreatable Chiari, in that no doc wants to do surgery because the herniation is slightly below what is required for Chiari 1 and I only have pain- 24-7 pain that is unbearable.

Anonymous said...

Good morning Jenn. In September of last year is when I started to notice that I was having short episodes of pressure between the back of my head and into my shoulders. I thought I was experiencing the early stages of migraines. Until 2 months ago I was just dealing with the discomfort and it just became "norm" to me. Two months ago I decided to call the Hershey Medical Center and set up an appointment with a neurologist. To my dismay the earliest appointment available was April of 2011. Instead of waiting almost a year to be seen I chose option 2 which was to arrive outside of the Neurology Department and hope to be one of the first 18 to be seen that day. They told me to arrive by 6AM to make sure I would be one of the lucky 18. So, I arrived at 6AM to find 16 people already in line. Since I was number 17 I was going to be seen that day, but would have to wait 10 hours to be seen. Due to having to little children I was not able to wait that long (wasn't prepared to wait that long and neither was my father who was baby-sitting the kids). I guess you can say I was still lucky because as I was walking out I ran into an old neighbor who "hooked" me up with a scheduled appointment the following week. The following week I met with a Neurologist and explained my symptoms. Afterwards, he diagnosed me with Primary Stabbing Headaches (a cousin of the Migraines), but wanted me to get an MRI to confirm. Two weeks ago I received the results of the MRI. I have Chiari Malformation Type 1 and Syringomyelia. I haven't been able to sleep well since learning about these two conditions. Your experience has helped me to know that there is hope for a "normal" life. I do have a question. I to want the very best due to this being a rare condition. Was the Institute pricey? I have been doing some research on The Chiari Institute in NY. I wish I lived in CO I have read nothing but amazing things about Dr. Oro. By the way, I am so glad to hear that you had a successful pregnancy and are the proud Mama of healthy twins. Every day is a blessing with lil ones;)

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Tiff said...

I am just beginning my journey on the Chiari road my tonsils descend 1.1 cm. I would love any advice you could give me on questions to ask the doctors or even what to expect please email me tiffany.perez27@yahoo.com

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thalidomide birth defects said...

They're just adorable. You are very lucky.

FAME productions said...

Awesome kids.. :) really cute

This is just my story of my experience with Chiari. Until I was diagnosed, I'd never heard of it, and I just want more people to be aware of it. I'm not a doctor, so don't quote me on any of this stuff - k? If you are looking for information about Chiari Malformation, a lot of the more informative posts are the older ones.