Sarah's Chiari Malformation - Digital Scrapbooking Community

susiecw · #1 (**permalink**) 02-10-2010, 12:36 AM

Saw the neurosurgeon today, and Sarah has Type 1 Chiari Malformation. He wants another MRI done in 6-8 weeks, but this one will be to look at her spine. If she has fluid anywhere on her spine then she'll have to have surgery. If not, then she'll be monitored and receive an MRI every year or so. He says she is a-symptomatic (?) and that the only reason this was found was because of her seizures. He gave them a list of other symptoms to look for that could in the future be caused by Chiari. However, Sarah's seizures were not caused by the Chiari Malformation. So, what caused them is unknown at this time. Her neurologist will follow up on the seizures in
March. So until the other MRI, there are still questions, but he really thinks it should be done for precautionary reasons only. So pretty good news, I think.

Thanks for all your support these past few weeks. To those who PM'd me with information and support, you brought me to tears with your kindness and thoughtfulness. This is a wonderful community to be a part of.

Susie

deanie · #2 (**permalink**) 02-10-2010, 12:57 AM

Praises Be!! Hope all continues positively.

Shannamay · #3 (**permalink**) 02-10-2010, 01:52 AM

Good news, Susie!

Cassie Jones (1gr8muggle) · #4 (**permalink**) 02-10-2010, 01:57 AM

I'm so happy to read this news. I hope the neurologist will soon discover the causes of the seizures. I'm glad you got some positive news. I hope it brings you and your family some peace to have these answers.

digigrandma · #5 (**permalink**) 02-10-2010, 02:02 AM

Oh, what good news, Susie! It may be that little Sarah will never exhibit any symptoms at all from this malformation and the seizure could well be just a one time occurrence. It's so interesting that this was only noticed because she had a seizure.

This must have been a very worrisome time for you and your family. I hope now you can breathe a huge sigh of relief and go on enjoying your grandchildren the way I know you do, Susie!

Scrapbird · #6 (**permalink**) 02-10-2010, 07:21 AM

Oh Susie, wonderful!! I hope she continues to grow and thrive and be happy and healthy!

champsarahjoy · #7 (**permalink**) 02-10-2010, 08:14 AM

So glad to hear that the news is better than expected. I pray that the cause for her seizures will be found and that you all can go on with enjoying life.

dorah · #8 (**permalink**) 02-10-2010, 08:39 AM

Very good news I would say. As mom to a ds with a seizure disorder I would never say give thanks for a seizure, but in little Sarah's case it could have been a blessing in disguise. Here's hoping that was a one off thing and if not, they soon find the cause. Hope all continues well with your sweet gd.

ValerieP · #9 (**permalink**) 02-10-2010, 09:34 AM

Good news-hope all continues to be ok for her-and that maybe the seizure was a one time occurance

MIDA78466 · #10 (**permalink**) 02-10-2010, 09:38 AM

so glad to read this news Susie. Hopefully the doctor will be able to determine the cause of the seizures.

earlofoxford · #11 (**permalink**) 02-10-2010, 10:02 AM

I'm so glad to hear this good news, Susie, and I know you must be breathing a bit easier now, too. I hope the doctor will be able to determine the cause of Sarah's seizures and that they were a one-time occurrence.

anke · #12 (**permalink**) 02-10-2010, 10:18 AM

Oh that's great news Susie! Now I bet you are worried about the scan coming up! We will keep praying for her that there won't be any fluid and she can get away with being monitored!

dugarner · #13 (**permalink**) 02-10-2010, 11:44 AM

This is so good to hear! Hope all continues well for her, and that the neurologist finds the cause for the seizures, and that it is easily treatable!

Chris · #14 (**permalink**) 02-10-2010, 11:58 AM

Good news Susie, and praying it will continue to be so for little Sarah.

cstaff · #15 (**permalink**) 02-10-2010, 12:49 PM

I'll keep those positive thoughts and prayers going...

whatnext · #16 (**permalink**) 02-10-2010, 12:57 PM

well,Susie! this sounds good. not only that it's a "watch and see" situation, but that you have a doctor who is cautious. now for more detective work to pinpoint the cause of the seizures. hope that turns out to be a not-too-scary process for all of you. prayers and positive thoughts coming your way.

LisaD · #17 (**permalink**) 02-10-2010, 03:07 PM

Will keep Sarah & your family in my prayers for closure to the seizure cause & for no spinal fluid build up. Hope Sarah is keeping in good spirits.

Starlite9711 · #18 (**permalink**) 02-10-2010, 04:10 PM

Good news Susie! I have been thinking about you and your dear Sarah a lot lately! Glad to read this today and hope the Dr.s can figure out why she had the seizures soon. Keep us posted on her!!

Jen D · #19 (**permalink**) 02-10-2010, 04:13 PM

Glad to hear some good news. Prayers still coming your way.

Jana Morton · #20 (**permalink**) 02-10-2010, 05:35 PM

Susie, Thank you for the update...I have been thinking about you a lot. I will keep you all in my prayers!

anxela · #21 (**permalink**) 02-10-2010, 06:06 PM

I didn't know about this until now, but I'm keeping my fingers crossed that things will be ok! I hope the scan will give you positive results about the spinal fluid, and that you find the reason for the seizures, and hopefully they are treatable.

mungerre · #22 (**permalink**) 02-10-2010, 08:01 PM

Oh, best wishes Susie! You and Sarah will be in my prayers.

echogirl · #23 (**permalink**) 02-10-2010, 08:06 PM

This is such good news. Hope it continues to be good news for Sarah!

Steph · #24 (**permalink**) 02-10-2010, 08:34 PM

Good news, Susie!!! If you ever have questions about seizures or meds, my Libby has epilepsy and I can walk you through some of that. Just let me know if I can help.