Hello. My name is Sara. On May 20, 2010 I had brain surgery. I also have ย fancy new titanium plate in my head. I’m feeling relatively badass lately.
Here’s the skinny folks. I have a brain malformation that causes the bottom most part of my cerebellum to grow out of my skull, through the forgem magnum and into/onto my spinal cord. This creates several problems. First of all, it creates pressure directly onto my brain. This causes daily headaches and migraine-like-holy-shit-headaches 2 to 3 times per week. In my case, it also caused double vision, hearing and vision loss and nerve damage. Secondly, the pressure on my spinal cord caused a serious interruption in the flow of spinal cord fluid. This caused a cyst, or syrinx, inside my spinal cord causing additional nerve damage, change in my gait, weakness in my limbs, loss of feeling in my face and partial paralysis. I have had this malformation since birth. The severe headaches began over a decade ago. I have had a headache every day for seven years. In the last 6 months I have had increased trouble with balance. Some days, it was hard to walk or hold my children.
I have been able to hide this very successfully for many years. As neurological symptoms have progressed, it became harder to hide these things. I ruined family vacations. I frequently had to back out of plans. I figured that if I could be strong enough to be a good mom and be good at my job, that it would be enough. I was totally used to it. I still had an amazing family, the world’s best friends ever, and a life that made my heart truly glad every day. Maybe it was a little harder than a healthier person’s life, but it was mine and I still loved it.
Lately, it didn’t matter how strong I was. I couldn’t be the mom I know my kids deserve. I had to put too much onto Augie. I was struggling to accomplish everything I needed to do in a day. Slowly, I was becoming so physically worn that all the positive attitude in the world couldn’t cut it.
I went back to my doctor recently and told that same story. A failed neurological exam led to an MRI. (I wasn’t too worried, it sure wasn’t my first MRI with all these headaches…) A neuroradiologist caught something that several other neurologists had missed. I had a 6mm Chiari Malformation bilaterally. My brain had escaped my skull. (Come on, this is totally badass though right?) I was referred immediately to neurosurgery. Upon further research, an earlier diagnosis of MS was finally dismissed (can you imagine how miraculous this was?!), symptoms were explained, and most importantly of all, my diagnosis was one of “We think we can help you, Sara.” not “Tough break, kid.”
It has been a long long journey. On May 26, 2010 I sat on my bed and cried tears of joy. For the first time in 7 years, I did not have a headache. I had forgotten what that felt like. I was overcome with gratitude.
I am healing now. I am 9 days from surgery and some of my symptoms are gone. (I can breathe so much better without pressure on my brainstem!) Some will stay. Some spinal cord damage cannot be repaired. (YET!) I’m ok with that. I’m ok at 90%, because with gratitude in my heart and all of the beautiful people in my life, I will achieve 125% every day.
So, that’s my story. This is the very first time I’ve told it. I’m glad to be able to share it with you.
P.S.
I very specifically asked the surgeon NOT to touch the Jackassery Lobe. He complied. Fair warning.
Also, FACT: My husband can sneak video ANYWHERE. I plan to continue to share my experience with all of you over the next months. We have captured this entire experience with wickedawesome video, photos and words. Some of it is happy, some scary, some just plain gross. But it’s all part of this journey.
48 comments
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May 29, 2010 at 12:10 pm
Amy
Tears of joy. So happy it all worked out. I’m totally digging Sara 2.0. Can’t wait to come play again on Tuesday. #meloveyoulongtime
May 29, 2010 at 12:20 pm
Tom
Wow. Alabama hug. โฅ
May 29, 2010 at 12:48 pm
Dax
Wow! An amazing story and so glad to hear you are doing well.
May 29, 2010 at 12:50 pm
tapps
what an amazing story. im happy that this one has one of those disney class happy endings ๐
May 29, 2010 at 1:22 pm
Socialsea
I look forward to reading as much colorful commentary as you can write. Even with the nerve damage, many could not have made it as far as you. Positive medical outcomes happen when strong will and resolve kicks in. You proved it. Keep writing. Here’s to your health and happiness!
May 29, 2010 at 1:24 pm
Prc2u (paul)
Thank you for sharing such a personal thing. I grew up with a disability and when i talked about it people accused me of wanting pity. I share so the experience is better understood. The old comment “walk a mile in someone else’s shoes”. Yet another reason we have to meet. You have my support, not my pity.
May 29, 2010 at 1:33 pm
Milly Gonzalez
Tears of joy Sara!! Our family is so happy that you’re on the road to recovery…God Bless you always. Your strength & courage through all of this is beyond inspiring girl! Hugs to you, & a special sqeeze to Juji for keeping us updated. You remain in our thoughts & prayers for a speedy recovery.
With much love, Milly Gonzalez & familia
May 29, 2010 at 2:10 pm
Sara
Facebook has ruined me. All I want to do is click “like”.
I’m so glad you’re going to be feeling better, though!
May 29, 2010 at 2:22 pm
Sean
Incredible story, Sara! So glad to hear you’re on the mend and back with your family. And thank God the jackassery lobe was spared! Remind your family that the first few weeks with new firmware can be a little dodgey, but by 2.02 you should be back to kicking butt. Godspeed, Sara.
May 29, 2010 at 2:49 pm
Vojha
You rock nerd!
May 29, 2010 at 3:15 pm
Sara
Thank you. You guys are a big part of what makes life so wickedawesome. I love you!
May 29, 2010 at 3:56 pm
Brian
Sara = bad ass. Here’s to a speedy recovery. Thanks for sharing your story, super glad to hear that the jackass lobe was unaffected.
May 29, 2010 at 4:56 pm
Cheryl
I’m just beyond happy for you and your family (and of course for all of us too).
May 29, 2010 at 6:57 pm
Joe
Sara,
Congratulations and well done! I’m glad you were able to finally ‘come out’ to all and truly be yourself. I’m very very happy for you and look forward to more snark on your blog and twitter. ๐
-Joe
Milwaukee
May 29, 2010 at 7:43 pm
Angie Sorge
You are beyond fabulous! We are all so happy to have you back – jackassery intact!
May 29, 2010 at 8:47 pm
Phil Gerbyshak
Sara – your naked honesty rocks! Augie is a lucky man, and your children are fortunate to have someone as comfortable in her own skin as you are.
As for your health, PLEASE take it easy. We need Sara around LONG TERM, so please, for all of us, ESPECIALLY your family, take the time you need. You have a great team of folks that you work with, and a great team of friends who LOVE you (hello, I’m #1 in your fan club) and most importantly, a family who will give you the support you need to heal up.
#GoSaraGo – I can’t wait to see what happens next!
May 29, 2010 at 11:11 pm
Lana
Sara,
thank you for sharing this. You are an amazing woman. I want to hug you hard. xo
Lana
May 30, 2010 at 12:22 am
Teresa
Sara, Thanks so much for sharing something so highly personal. I love how you have maintained a wonderful sense of humour and loving sense of self and family. Best of luck on your road to recovery.
May 30, 2010 at 7:15 am
Chris Brogan...
When we had lunch together in Milwaukee, I knew you were smart. I had no idea that your brain was so big it was growing out of your head! Holy crow! Thank goodness, you’ve contained that stuff. I mean, there’s only so much a hairstyle can cover over. : )
You’re so darned amazing. As far as this 90% bullshit, that’s just your body’s 90%. Your capability and capacity have just run up and over, so I expect huge stuff within the next several months. Don’t keep me waiting on that.
Thank the sweet little 8.5 pound, not-yet-bearded little baby Jesus for your jackassery.
May 30, 2010 at 9:46 am
MCM Mama
That’s so amazing! Glad you were able to find a solution that could give you back so much of your life! Congratulations and thank you for sharing this with us.
May 30, 2010 at 10:10 am
Shannon
Kisses and hugs to you.
May 30, 2010 at 10:43 am
Sara
You guys put on the BEST #lovefest ever. ๐
Really, I am humbled and touched by all of your comments, here and on Twitter/Facebook/Dailymile etc. I feel totally surrounded by this crazy-awesome community that won’t let me fall. Who ever thought that a virtual safety net could bring such a feeling of love and strength? (Ok, me. But I’m a web-nerd long time.) ๐
I had been so afraid to share this story. I thought I might look weak. I thought people may misinterpret my wanting to share this story with me needing special attention. I have hidden all of this so long, that it just felt natural to keep hiding.
What prompted me to share was that, in my own research efforts about Chiari, I came up flat. I wanted to hear stories, not medical fact-based info. I had found enough of that. I bought books, I read medical journal papers, I packed my brain with knowledge about my condition. I needed to hear someone’s STORY. I found very few. I realized that I can change that. I can share my story for the people who, just like me, need to understand the impact of their diagnosis, surgery, additional treatment, prognosis, etc.
So, I’m not afraid to share anymore. I will tell the story. I will pay forward the love, kindness and support that all of you give me by giving it to people who need a fellow “Chiarian” to talk to.
You guys did this. And I hope that it will help someone. I know it will. I thank you, and I think they will too.
To quote my new friend Chris B. I thank “the sweet little 8.5 pound, not-yet bearded baby Jesus” for your support and understanding.
Love(!)
Sara
May 30, 2010 at 12:07 pm
Marjie
I am crying tears of joy for you Sara as I read this. I knew of the surgery, but didn’t know why and what the condition was. I had no idea you lived with this pain …your attitude sure didn’t show it! I can not tell you how happy I am for you… a break you sure needed has come your way. Truly amazing.
May 30, 2010 at 1:31 pm
Mare
You are one brave, kick-ass chica who I adore. I’m so happy and relieved you’re one giant step further in this journey and I’m grateful you’ve allowed us to support you along the way.
Let the jackassery commence! Or continue! Or keep going!
xoxo
May 30, 2010 at 8:50 pm
Jen A.
I’m so happy for you. I had no idea you had been struggling with this. Take care of yourself.
May 30, 2010 at 8:56 pm
Jodi
Thanks for sharing your story and glad that you are on the road to recovery. I look forward to more snark and jackassery.
May 30, 2010 at 9:13 pm
Lynn
Thanks for sharing, Sara. I held my breath the entire time as I read about your trials and am so very happy you can see a happy ending. I was on my way to church shortly after and said my first prayer for you and your family. And you will stay in my prayers as you recover. Be well. I am so fortunate to have met you!
May 31, 2010 at 1:27 pm
Runners are giving « Why I Run
[…] S, a runner from Milwaukee, just shared a very personal story about her battle with Chiari Malformation. Here are her words about why she even shared. “What prompted me to share was that, in my […]
June 1, 2010 at 6:02 pm
Mark Fairbanks
God Sara, just when I think you can’t get any cooler, you do.
That’s going to be some six mile run to Bradford Beach and back. ๐
June 2, 2010 at 10:33 am
Brian Mayer
Wow. You made a grown man cry. Not just misty-eyed, sad-part-of-a-movie-crying, either. I’m still sniffling. Sara, you are truly a remarkable person, and from the mentions in this article, it sounds like you have quite the remarkable husband as well as. #GoSaraGo
June 2, 2010 at 10:52 am
Sara Meaney
For the life of me I still can’t figure out why you and I have not yet met in person. But I send you the best of wishes and the warmest of congratulations on your continued recovery. Sounds like you’re on the home stretch of a very long distance journey. Enjoy every moment. And thanks for reminding me to do the same.
June 2, 2010 at 12:19 pm
Sara
It is kind of funny some people assume we have met because we are both “MKE Sara’s”. We have a gang, apparently.
June 2, 2010 at 11:05 am
Kat Gordon
This is the first time I am reading your blog and, even so, I feel I’ve been on a journey with you. Amazing how much in life hinges on the tiniest discoveries. That radiologist changed your life by paying close attention. A good lesson for us all.
June 2, 2010 at 12:23 pm
Sara
Thanks for visiting, and welcome to the den-of-jackassery. ๐
June 2, 2010 at 11:15 am
Emily Lenard
Sara, I had no idea! What an inspiring story! I especially liked the bit about your Jackassery Lobe. ๐
As a kid who often had to grow-up without a mom because her headaches disabled her from participating in birthday parties, etc. I know that your child will be so thankful! How amazing that you are on the road to recovery! Congrats!!
Emily
June 2, 2010 at 12:21 pm
Sara
Thank you my dear. Sharing your feelings about your mom’s illness makes me feel even more grateful to be able to be the kind of mom I know my kids deserve. ๐
June 2, 2010 at 11:40 am
troyfreund
wowza, give the girl a hellsyeah, twotimes. Thank YOU for sharing your story. We don’t know each other, so all the more do I appreciate you sharing your story and your triumph.
Keep up the jackassery,
Troy Freund
June 2, 2010 at 12:24 pm
Sara
I’ll take that hellsyeah. Twice, even. Thanks for sharing your reaction. Wickedawesome, bro. ๐
June 2, 2010 at 5:30 pm
Marilyn Woods
Sara, I had the honor of meeting you at #ungeeked. I say honor because I hold in high regard strong and courageous people. You are one amazing woman! All the best as you continue in your journey. You will probably never realize all of the lifes you touched with your honest and open sharing.
June 3, 2010 at 11:06 am
lo
Wow, Sara — when I logged on this morning I couldn’t have predicted the effect this post was going to have on me. But, now that I’ve read it I’m stunned. Thanks, first of all, for sharing your story. And thanks, even moreso, for reminding all of us of the value of faith… and strength… and overall awesomeness. You rock.
June 3, 2010 at 2:11 pm
Sue Spaight
Sara,
Thanks for sharing your whole story. Incredibly inspiring – no one even knew you were going through all of this. Now that I know more I feel like a big stupid jackass for begging you to meet with us before #ungeeked. Of course you made it happen. I agree with PhilGerb; Augie and the girls are incredibly lucky to have someone as strong and loving as you. Your family must laugh more than all the rest of us combined. So happy that you are “back”. P.S. I was just on the Mayo Clinic Facebook page, and there was a girl who posted asking for anyone who had any information about Chiari. Based on what you said in your post I sent her a link to your story.
Yoga. On me. When you can.
Love,
Sue Spaight
June 8, 2010 at 10:50 pm
amberdoeshair
Hi! I did a search for other bloggers with Chiari and I found you. I like you SO much! I envy you that you have gotten your surgery-no end in sight for me yet. I’m going to lurk you on a daily basis to see how you are doing and all.
Hugs and brain tails-
Amber
June 9, 2010 at 10:39 pm
Anthony
Sara, what an amazing story and it’s not finished! God had His hand on you and carried you through this and your family can rejoice with you! God Bless Sara and it’s a pleasure
to know you!
June 17, 2010 at 7:43 pm
Phel
Sara, you are an inspiration. What you’ve been through, your grace, your youness. Congratulations on a brand new day, and so many more to come ๐
August 21, 2010 at 5:46 pm
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