Living with Chiari
What is Chiari Malformation? Chairi Malformation affects about one in every 1000 people, but is relatively unknown. Here what it is like to live with Chiari from someone who has Chairi.
I first took notice of Chiari Malformation when I found out a friend was living with Chiari. She had been diagnosed before I met her, and I would have never guessed that she suffered from anything other than a bright and cheerful attitude. Working in the medical field I knew of the condition but as far as I know I had never before encountered anyone with Chiari. Like so many other bits and pieces of information I had picked up in school it got shuffled into the background.
For those who do not know Chiari Malformation is a congenital condition where a part of the brain protrudes through a opening in the base of the skull called the foramen magnum and into the spinal canal. This part of the brain, known as the cerebellar tonsils, which normally lie above the foramen, puts pressure on the spinal canal. This pressure can cause pain in the back of the neck and radiating upward. Other symptoms of Chiari vary widely and can include blurred vision, muscle weakness, unsteady gait, facial numbness and trouble swallowing.
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A related disorder found often, but not always in people with Chiari is Syringomyelia. Syringomyelia is when cerebrospinal fluid, also known as CSF, enters the interior of the spinal cord. There it forms a syrnix or cavity. The syrnix can expand over time which destroys the center of the spinal cord. In most cases Syringomyelia, like Chiari, is congenital. However a second form of Syringomyelia can be brought on by trauma. In people with Chiari the protruding part of the brain blocks normal CSF flow and can cause a syrnix. However not everyone with Chiari will develop Syringomyelia.
Treatment for Chiari Malformation can range from pain management with medication in mild cases to surgery. The surgery is known as posterior fossa decompression. In this surgery small portions of bone form the back of the skull are removed. This allows the tonsils to move back into their normal position in the skull and reduces compression of the brain stem. This surgical procedure gained notoriety in the horror movie Saw. The villain Jigsaw, though not suffering from Chiari had the surgery to remove pressure from a brain tumor.
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Duff D Moss | Sep 23, 2010 | Reply
Far out – really good article on a condition I am sure most have never heard of (me included). Must be frightening really, and I hope your friend finds some relief from this.
k | Sep 24, 2010 | Reply
What a beautiful girl, and even more beautiful on the inside for sharing her story.
Allison Jae | Sep 24, 2010 | Reply
Great article.
thestickman | Sep 24, 2010 | Reply
Excellent & thanks for posting the link in the forum (-how I found this.)
Bo Russo | Sep 24, 2010 | Reply
At least she still has a smile on her face! She looks an awful lot like her sister.
Der Kommissar | Sep 24, 2010 | Reply
Thanks everyone who has read, commented and liked this
@ Duff- I can’t imagine how it must feel, as most of us, me included, tend to whine over the smallest inconvience
@ Bo- She does look a lot like Liz, all the sisters are gorgeous, Everytime I have been near her she has been smiling and laughing and thats why I hate to think of her in pain. She is just as pretty on the inside, a real sweetheart
Jimmy Shilaho | Sep 25, 2010 | Reply
This is new to me.
Ukrainian | Sep 25, 2010 | Reply
Interesting article. Thank you sharing.
Alicia | Sep 25, 2010 | Reply
Thank you everyone for reading this! Keep on sharing:) The more that read the more people know awareness we can bring to Chiari!
-Alicia (from article)
Pam Stushnoff | Sep 26, 2010 | Reply
What an interesting read. There are so many medical conditions out there that I don’t know about. I am thankful everyday for the health of my family.
ladym33 | Sep 26, 2010 | Reply
Thank you for sharing this and sharing your personal experience.
BluSphere | Sep 27, 2010 | Reply
Great article friend.
I found it in the forum. Thanks for posting it here.
Best regards,
BluSphere
razzle | Sep 28, 2010 | Reply
unless there needs to be shunt , there is no surgery for SM / Syringomyelia
twistedblack | Sep 28, 2010 | Reply
@Razzle- This is true. Though the decompression surgery can help the SM for some. For me (Alicia) my syrinx has shrunk some.
shanuj | Sep 29, 2010 | Reply
Thank you for sharing this. i like it
tina | Oct 2, 2010 | Reply
Thank-you for sharing!!!! My 7 yr old and I suffer from chiari and I must say its horrible!!! We are lucky to catch hers and she had two brain surgeries in 2008. I\’m in desperate need of this surgery yet no surgeon in Indiana has dealt with chiari & crouzons on adults. Hopefully one day. Soon the medical field the medical field can be more educated on this to do surgeries on ppl like me, thank yo!!!!
Caleb Garrity | Oct 14, 2010 | Reply
Goodluck to your friend tell her to be strong. Im on my third surgey had the tube put in my spine two weeks ago to remove the syrinx cyst and with everyone it seems to be getting alittle better.Goodluck and Godbless
itsmylife826 | Oct 21, 2010 | Reply
Thank You:) Good luck with your surgery!!
Keep reading and share the link!
-Alicia
Joseph David Levinson | Oct 22, 2010 | Reply
Let us not forget each case is different, and we are affected in different ways, mostly united on a pain scale though. So this is a pretty generic desription, but I’m glad for these post anyway even though the desciption seems to limit it’s impact, at least on me personally. I am always ready to hear of other peoples personal experience. If you want to share I may not be a Triond member, but you can always find me on FB under Joseph David Levinson. I am always on the lookout for more ACM friends. I know we all have our stories non ACM’ers cannot relate to as well as somebody with it maybe. At least it could be interesting to compare scars so to speak. I have ACM 1 w/ syringomyelia. I had my surgery on Mar. 1st 1984 (I turned 16 that year) It was actually going to be on Feb. 29th which I thought would have been cool, but something made them postpone a day. I would also love to find ACM’ers in my area. Especially cool, but not as important if they were about my age also.
twistedblack | Nov 11, 2010 | Reply
@Joseph we are friends on facebook:)
Thanks everyone keep reading and sharing this article! The more shares and views the more awareness!
http://chiari-life.blogspot.com