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Chiari malformation

Mar 03, 2015 3:47 PM

Anyone with Chiari Malformation and or Syringomyelia

Mar 04, 2015 10:44 AM

Hi. I recently found out I have Chiari. It was an incidental finding from an MRI done to rule out MS. I have found out not many doctors are well versed on it and what they know is often outdated. It does explain a bunch of my symptoms and some things I figured I had all my life were normal for me like poor balance, clumsiness, problem with words. The last bunch of years I have noticed lots of symptoms that overlap with fibromyalgia. I think I may have EDS 3. And reading a bunch of these sites, I notice there are a bunch of overlapping symptoms between Chiari, fibro & eds. I think there is probably a lot of under diagnosing of Chiari & EDS. What do you think?

Mar 04, 2015 12:44 PM

Hi Princess tibia and Sandi, I was diagnosed with Syringomyelia in 2004, I had a back injury. You are right there isn't a lot of knowledge about Syringomyelia by nurses and some Dr.s don't know a lot either it seems. I have never heard of EDS3, I'm going to have to reserve it.

Mar 04, 2015 10:57 PM

I am on FB. I am a San Diego representative for Conquer Chiari organization. You can find me and other Chiarians there too: Sylvia D. Amavisca and San Diego Chiari & Syringomyelia. I can connect you with others in your home towns. I find having others who can empathize is vital.

Mar 04, 2015 11:25 PM

Sandi, you know that might explain some of my issues with clumsiness and falling over my own two feet on occasion but brain MRI was also negative for Chiari. It's actually quite common with spina bifida as well but can be controlled if caught early.

Mar 06, 2015 7:06 AM

Often Chiari goes undiagnosed, you're correct. It is found a lot on MRI for other things as yours was. It goes undiagnosed a lot because it often doesn't cause issues. Sometimes it does though. I have been diagnosed with it and they found it right before my brain surgery. I have 27mm. I go to mayo clinic and the doctors and negotiate grins there have all advised against surgery for it (yeah!! I hate surgery!) I also saw a Chiari specialist in Seattle Dr. Richard Ellenbogen. The current consensus is that surgery doesn't really help u less there is a syringomyelia or tethered cord or extreme effects for it. I hope that you can find ways to overcome any difficulties you have from it without surgery. But if it ends up you choose surgical intervention I hope it geLs you of anything that is wrong! Good luck my friend!

Mar 06, 2015 7:18 AM

Wifeof1momof3, your mentioning tethered cords made me think of my nephew. He has a tumor at the end of his tailbone and my sister mentioned the cord issue. They found it when he was 7 and he's 15 now. He still has many problems related to this. He also has a reversed chest sternum; its growing inward towards the heart & lungs, and he has to stop growing before the cut out & flip the sternum around.

Mar 06, 2015 7:20 AM

Oops, I meant to add, I wonder now if he has the chiari malformation, because of things everyone has described that he has mentioned to his mom. She's on a trip right now or I'd call her.

Mar 06, 2015 12:18 PM

My son also has reversed sternum! I've never met anyone else whose even heard of this! We are hoping he can wait long enough so he doesn't have to do the surgery twice! I hope he's doing alright and continues to do so!

Mar 06, 2015 1:04 PM

He still has problems but he hit a growth spurt a year or so ago and went from about 5'4" to over 6'6", and that's why they're holding off. He's very smart but has ADD/HD & Autism so he struggles in school.

Mar 08, 2015 11:29 PM

Very interesting as my son also has the sternum thing. There is a name for it but I can't remember it. Luckily so far, it hasn't caused him trouble. He can't get a good breath though if he exerts himself in exercise but luckily he's not into sports.

Mar 08, 2015 11:31 PM

Princesstibia, I have family visiting now but in a couple of weeks I'll try to find your group. Agree that having others that understand what you are going thru is super important and helpful. Thank you!

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