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Chiari and/or syringomyelia. Tisa Cameron 18 kids; Douglasville, Georgia 464 posts
17th Apr '13

Does anybody else have this? If so are you asymptomatic or does it effect every aspect of your life? Have you had to have surgery?
I have chiari and possible syringomyelia and I hate it, it effects everything I do or dont do. I have had one surgery, but I have to have another. :c

thats me. :) 18 kids; Edmonton, Alberta 3030 posts
17th Apr '13

what is it?

Tisa Cameron 18 kids; Douglasville, Georgia 464 posts
17th Apr '13
Quoting thats me. :):" what is it?"


I figured real definitions may describe it better than me. lol.



Chiari malformations (CMs) are structural defects in the cerebellum, the part of the brain that controls balance. Normally the cerebellum and parts of the brain stem sit in an indented space at the lower rear of the skull, above the foramen magnum (a funnel-like opening to the spinal canal). When part of the cerebellum is located below the foramen magnum, it is called a Chiari malformation.
CMs may develop when the bony space is smaller than normal, causing the cerebellum and brain stem to be pushed downward into the foramen magnum and into the upper spinal canal. The resulting pressure on the cerebellum and brain stem may affect functions controlled by these areas and block the flow of cerebrospinal fluid (CSF)

tatesmommy09 2 kids; Illinois 4003 posts
17th Apr '13

My friend has a chiari. She wasnt diagnosed until a couple years ago. She really only had bad headaches and dizzy spells.



She probably would have never been diagnosed but her daughter was diagnosed at 15 months! She was having seizure like episodes where she would just collapse on the ground for a few minutes. Conpletely.conscious but she couldnt get up.



Kenna also had a tethered spinal.cord. She had spinal cord surgery at 16 months, and brain surgery at 2 and three. (decompression).
She had a very severe chiari.



We saw major improvements in Kenna as soon as her first decompression was completed. She no longer had the "seizures" and we saw major differences in her speech, hearing, and motor skills.



(laments terms.... In a person with chiari malformation, the brain cavity is too small for the brain. It grows out of the cavity and down over the brain stem, putting pressure on the spinal.cord.)



Good luck to you hun!

Tisa Cameron 18 kids; Douglasville, Georgia 464 posts
17th Apr '13
Quoting tatesmommy09:" My friend has a chiari. She wasnt diagnosed until a couple years ago. She really only had bad headaches ... [snip!] ... brain. It grows out of the cavity and down over the brain stem, putting pressure on the spinal.cord.) Good luck to you hun!"


oh wow. its great she is doing better though!!



I found out when i was 3 months pregnant with my first. I have suffered from massive migraines and many many other symptoms my whole life, migraines being the worst. I had a really bad one for like 2 weeks, so i went to immediate care and they sent me for an mri and they called me to come in and told me what i had, then 2 years later i have decompression surgery. Come to find out, while pregnant this time and seeing a different dr, the dr who did my first surgery messed me up. My brain waves are slow(my family has blast with that one) and it cause me to have mini seizures, i twitch. I will eventually end up with full blown seizures most likely. I'm unsure what all is messed up, have to wait until the dr can actually run certain tests, then 4 weeks after I have my son I get to go have another surgery. He thinks I may also have syringomyelia. :c

tatesmommy09 2 kids; Illinois 4003 posts
18th Apr '13

<blockquote><b>Quoting Tisa Cameron:</b>" oh wow. its great she is doing better though!! I found out when i was 3 months pregnant with my first. ... [snip!] ... certain tests, then 4 weeks after I have my son I get to go have another surgery. He thinks I may also have syringomyelia. :c"</blockquote>



I am sorry to hear that. I know most chiari's go undiagnosed for.a.very long time. It is a very uncommon condition and all of the symptoms can be explained by other things. Kenna was only diagnosed due to her mom's wonderful persistance. She tried multiple times to get an mri performed and finally she.just went to.a 24hr clinic and sat in a chair and told them she wasnt leaving until Kenna got an mri. She was there for a little over 8 hrs with an unhappy child before they finally gave in. She got right in to see a specialist at St louis Childrens. He is an amazing surgeon! (I will try to get his name).



Also, studies are starting to show that chiari's can be hereditary. So please, if your kiddos show any signs, dont be afraid to have them scanned!!



I pray things get better for you.

tatesmommy09 2 kids; Illinois 4003 posts
18th Apr '13

Kenna's surgeon was Matthew Smyth. It was easy enough to find on the website!

Tisa Cameron 18 kids; Douglasville, Georgia 464 posts
18th Apr '13
Quoting tatesmommy09:" <blockquote><b>Quoting Tisa Cameron:</b>" oh wow. its great she is doing better though!! ... [snip!] ... hereditary. So please, if your kiddos show any signs, dont be afraid to have them scanned!! I pray things get better for you."


oh wow, thats an s\awesome mommy!! c: i had to demand my mri as well. and thank you!! I definitely am having my son checked as soon as he gets a little older, he doesnt show any signs so im not in a huge hurry. With this one, they have checked on u/s but said cant really tell, so when he is about 2 we may check or wait and see if we see any symptoms.

tatesmommy09 2 kids; Illinois 4003 posts
18th Apr '13

Thats good. My friend has three daughters and only Kenna has it. But she did find out that one of her cousins has it!

Tisa Cameron 18 kids; Douglasville, Georgia 464 posts
18th Apr '13
Quoting tatesmommy09:" Thats good. My friend has three daughters and only Kenna has it. But she did find out that one of her cousins has it!"


Interesting. My mom got checked. my dad however wont, and he is the one who has a lot of the same problems as me. My cousin thinks she may have it, i think she is going to get tested when its in the budget for her parents, she is 16. She is exactly like I am with her symptoms. So im assuming its from my dads side of the family. it can be genetic or it can be from the mother not getting enough iron early in pregnancy, its in the same "family" as spina bifida.

Tickledpinktwice 2 kids; Indianapolis, Indiana 43183 posts
18th Apr '13

CM is ONE of my possible issues, I have another MRI coming up soon. EMG and Sleep Studyare all normal (these were all the tests in the last month). My first Brain MRI was a bit off, but we don't know exactly what was going on. She is now ordering a Thoracic and Cervical MRI and I have a Tilt Table coming up next week. Waiting on the results to the EEG. How were your diagnosed? Since it is a global symptomatic issue I am being bounced from physican to physician:( MS is still up in the air too.

Tisa Cameron 18 kids; Douglasville, Georgia 464 posts
18th Apr '13
Quoting Tickledpinktwice:" CM is ONE of my possible issues, I have another MRI coming up soon. EMG,Sleep Study,EEG are all normal ... [snip!] ... Since it is a global symptomatic issue I am being bounced from physican to physician:( MS is still up in the air too."


I havent had many tests done at all, just an eeg before my surgery like 4 years ago and 1 since i have been pregnant. So I dont really know what a lot of your tests you've had done are. I got diagnosed my an mri. they have never done a spinal scan, which apparently they were DEFINITELY supposed to do before performing surgery on me. oohh that sucks about the different physicians though. Hopefully you get some good news though! Chiari is a pretty sucky thing to have. :c although after having been told nothing from the time i was like 5 until i was almost 17, i was just glad to have a diagnosis. How are your symptoms?

Tickledpinktwice 2 kids; Indianapolis, Indiana 43183 posts
18th Apr '13
esQuoting Tisa Cameron:" I havent had many tests done at all, just an eeg before my surgery like 4 years ago and 1 since i have ... [snip!] ... been told nothing from the time i was like 5 until i was almost 17, i was just glad to have a diagnosis. How are your symptoms?"



They did surgery without proper testing?? I am surprised insurance let them do that!lol Were you diagnosed via Brian or Spinal MRI?
Every system is involved- I am seeing 7 different doctors:/
Cardiologist
Neurologist
Endocrinologists
Gastroenterologists- my entire system is shot
Rheumatologists
Dermatologists
Immunologists
I have a host of diseases and have had sooooo many surgeries. They think their is an underlying issue. So I have a lot of symptoms but my biggest issues are:
Fainting
Low Blood Pressure
Vision and hearing loss
Temporary and very short losses of consciousness (could be petite mal seizures?)
Parasthesia
Headaches
Horrible fatigue
those are the biggies
oh and my fingers are starting to club:/

So, no one knows where to go next. I know a lot of people suspected of MS will sometimes be diagnosed with CM. What were your sypmtoms?



Tickledpinktwice 2 kids; Indianapolis, Indiana 43183 posts
18th Apr '13
Quoting Tickledpinktwice:" They did surgery without proper testing?? I am surprised insurance let them do that!lol Were you ... [snip!] ... where to go next. I know a lot of people suspected of MS will sometimes be diagnosed with CM. What were your sypmtoms? "


I have some of my issues on my profile. fyi. lol

Tisa Cameron 18 kids; Douglasville, Georgia 464 posts
18th Apr '13
Quoting Tickledpinktwice:" They did surgery without proper testing?? I am surprised insurance let them do that!lol Were you ... [snip!] ... where to go next. I know a lot of people suspected of MS will sometimes be diagnosed with CM. What were your sypmtoms? "


Yea, when this dr gets the tests done and everything, i have all my medical records, ill be trying to sue the dr for messing me up and not doing proper testing. the only form i signed was stating if i died or was paralyzed they werent responsible. this doesnt fall into those categories.



As far as my symptoms, you know when you google chiari(which im sure you probably have lol) the lists you find, yea i have every symptom. id say my worst is temporary paralysis at random, headaches, excessive saliva(more annoying than you would think) extreme tingling in my feet and toes and arms, fingers and hands. super dizzy. and i have a hard time seeing sometimes, it comes and goes. and i twitch(mini seizures)