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Old 02-26-2012, 10:03 AM #1
anon112114
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Default Is this Chiari? Advice needed please!!

Hello all,

My story is quite lengthy so I will try and keep it brief. When I was 15, I blew a pupil and of course, doctors panicked. I had a CT scan which "showed something" and was sent for an MRI. The MRI came back as saying I had low-lying cerebellum and my family doctor waved it off, so I forgot about it. After many more tests and doctors, the pupil was later diagnosed as Adie's tonic pupil, even though my reflexes are still intact.

Now nearly 6 years later, I've been fighting through multiple health problems that are slowly ruining my life. The doctors aren't sure what's going on - I have constant extreme fatigue, dizziness/vertigo, memory loss (I can barely remember my childhood) and ear and neck pain. I also have intermittent hand tremors, headaches (specifically in the back of my head), tingling in my legs, muscle twitches, and blurred vision. Plus, of course, I have a dilated pupil. The hand tremors and tingling has only popped up in the last two weeks.

I was googling my symptoms out of desperation and Arnold-Chiari popped up, and that's when I remembered about my low-lying cerebellum that was never addressed. I actually cried when I was reading the symptom list because it was like reading a description of my life. Could this be a Chiari malformation that got worse? I'm still learning about what all it means.

I was worried that I might have MS and brought it up to my physician - she said, even if I did, it's not a diagnosis I'd want at age 20 and so she didn't do anything. I see an endocrinologist next week but I doubt he can help me. Do any of you think I should ask my doctor for another MRI? To check for Chiari? My problem is that I live in a small town in Canada (population 100,000) with the next biggest hospital 10 hours away - weird problems are either shipped away or missed altogether. I'm the only diagnosed person with Adie's tonic pupil in the city and surrounding area; they pretty much had my family convinced I was dying before realizing it was a benign condition.

Should I be worried about Chiari? Or is having low-lying cerebellum normal? Should I purse getting a neurologist and another MRI? If it is Chiari, would surgery resolve some of the symptoms? (mostly the fatigue is ruining my life - I've all but dropped out of school and my social life has completely disappeared)

I'm sorry for the long post, but I'm desperate. Any advice or thoughts is greatly appreciated. Best wishes and health to everyone.
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Old 02-26-2012, 10:43 AM #2
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if you have these symptoms and a cervvical MRI

http://chiarione.org/symptoms.html
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Old 02-27-2012, 09:28 PM #3
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Quote:
Originally Posted by lissalaine View Post
Hello all,

My story is quite lengthy so I will try and keep it brief. When I was 15, I blew a pupil and of course, doctors panicked. I had a CT scan which "showed something" and was sent for an MRI. The MRI came back as saying I had low-lying cerebellum and my family doctor waved it off, so I forgot about it. After many more tests and doctors, the pupil was later diagnosed as Adie's tonic pupil, even though my reflexes are still intact.

Now nearly 6 years later, I've been fighting through multiple health problems that are slowly ruining my life. The doctors aren't sure what's going on - I have constant extreme fatigue, dizziness/vertigo, memory loss (I can barely remember my childhood) and ear and neck pain. I also have intermittent hand tremors, headaches (specifically in the back of my head), tingling in my legs, muscle twitches, and blurred vision. Plus, of course, I have a dilated pupil. The hand tremors and tingling has only popped up in the last two weeks.

I was googling my symptoms out of desperation and Arnold-Chiari popped up, and that's when I remembered about my low-lying cerebellum that was never addressed. I actually cried when I was reading the symptom list because it was like reading a description of my life. Could this be a Chiari malformation that got worse? I'm still learning about what all it means.

I was worried that I might have MS and brought it up to my physician - she said, even if I did, it's not a diagnosis I'd want at age 20 and so she didn't do anything. I see an endocrinologist next week but I doubt he can help me. Do any of you think I should ask my doctor for another MRI? To check for Chiari? My problem is that I live in a small town in Canada (population 100,000) with the next biggest hospital 10 hours away - weird problems are either shipped away or missed altogether. I'm the only diagnosed person with Adie's tonic pupil in the city and surrounding area; they pretty much had my family convinced I was dying before realizing it was a benign condition.

Should I be worried about Chiari? Or is having low-lying cerebellum normal? Should I purse getting a neurologist and another MRI? If it is Chiari, would surgery resolve some of the symptoms? (mostly the fatigue is ruining my life - I've all but dropped out of school and my social life has completely disappeared)

I'm sorry for the long post, but I'm desperate. Any advice or thoughts is greatly appreciated. Best wishes and health to everyone.
I was just diagnoised 2 weeks ago with chiari malformation of the brain.My Brain stem and cerebellumis pushing into my spinal cord.The Fatigue over the years was awfull. as long as i can remember i would always have to take a cat nap every day to recoup. Bearing down to have a bowel movement would make my head explode.Please see a neuro dr who specializes in this.A mri of the neck will show what is hanging down.I was transferred from Lima, Ohio to Columbus Ohio In one night But it took 3 trips to er to get me transferred.
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Old 03-06-2012, 04:41 PM #4
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Quote:
Originally Posted by missvickie View Post
I was just diagnoised 2 weeks ago with chiari malformation of the brain.My Brain stem and cerebellumis pushing into my spinal cord.The Fatigue over the years was awfull. as long as i can remember i would always have to take a cat nap every day to recoup. Bearing down to have a bowel movement would make my head explode.Please see a neuro dr who specializes in this.A mri of the neck will show what is hanging down.I was transferred from Lima, Ohio to Columbus Ohio In one night But it took 3 trips to er to get me transferred.
I here you fellow Buckeye. It is such a rare thing that know one knows what to do with it. I am so hoping to get the answers on Thursday that I need.
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Old 03-08-2012, 03:26 PM #5
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Thumbs Up see the right doc

Quote:
Originally Posted by lissalaine View Post
Hello all,

My story is quite lengthy so I will try and keep it brief. When I was 15, I blew a pupil and of course, doctors panicked. I had a CT scan which "showed something" and was sent for an MRI. The MRI came back as saying I had low-lying cerebellum and my family doctor waved it off, so I forgot about it. After many more tests and doctors, the pupil was later diagnosed as Adie's tonic pupil, even though my reflexes are still intact.

Now nearly 6 years later, I've been fighting through multiple health problems that are slowly ruining my life. The doctors aren't sure what's going on - I have constant extreme fatigue, dizziness/vertigo, memory loss (I can barely remember my childhood) and ear and neck pain. I also have intermittent hand tremors, headaches (specifically in the back of my head), tingling in my legs, muscle twitches, and blurred vision. Plus, of course, I have a dilated pupil. The hand tremors and tingling has only popped up in the last two weeks.

I was googling my symptoms out of desperation and Arnold-Chiari popped up, and that's when I remembered about my low-lying cerebellum that was never addressed. I actually cried when I was reading the symptom list because it was like reading a description of my life. Could this be a Chiari malformation that got worse? I'm still learning about what all it means.

I was worried that I might have MS and brought it up to my physician - she said, even if I did, it's not a diagnosis I'd want at age 20 and so she didn't do anything. I see an endocrinologist next week but I doubt he can help me. Do any of you think I should ask my doctor for another MRI? To check for Chiari? My problem is that I live in a small town in Canada (population 100,000) with the next biggest hospital 10 hours away - weird problems are either shipped away or missed altogether. I'm the only diagnosed person with Adie's tonic pupil in the city and surrounding area; they pretty much had my family convinced I was dying before realizing it was a benign condition.

Should I be worried about Chiari? Or is having low-lying cerebellum normal? Should I purse getting a neurologist and another MRI? If it is Chiari, would surgery resolve some of the symptoms? (mostly the fatigue is ruining my life - I've all but dropped out of school and my social life has completely disappeared)

I'm sorry for the long post, but I'm desperate. Any advice or thoughts is greatly appreciated. Best wishes and health to everyone.
my dear friend we (I) can't say what you have but it does sound like you need a real doc. do some research and please find a doc around you. if it is a long drive finding out will be worth it. i believe most of us are dianosed with one thing before after years of waiting find out ftnally what we do have. see a neurosurgeon if possible
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Old 03-12-2012, 03:25 AM #6
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Default Chiari Help

From all of what you said it sounds very possible Chiari is the issue. Number one thing to remember with Chiari is it is not the size of the herniation that determines the amount or severity of your symptoms and do not let any Dr. tell you different because if they really knew about Chiari and everything it entails they would already know that. You are probably going to have to see a Chiari specialist unfortunately. I understand you frustration I do I was young too when all mine started getting worse and it took me 12.5 years to get diagnosed and even for that I had to fly half way across the US to get diagnosed but it was worth it. Also you need to check into EDS (Ehlers Danlos Syndrome) it is seen a lot in combo with Chiari. Also have a MRI standing or at least sitting because EDS can cause CCI (cranio-cervical instability) which cause cause a lot of neuro issues, headaches, etc. etc. Also POTS (Postural Orthostatic Tachycardia Syndrome) is pretty normal for these disorders. TC (tethered cord) is part of this and Syringomyelia too. Because I just joined I can not post the links yet but google chiari one, conquer chiari, chiari connection international, and for videos check out chiari institute website. On their front page in the bottom left there is a video image click it and when the video player pops up click the words Patient Videos in white and scroll down to watch Dr. Bolognese in the different videos. It is very simply stated and he tells you all about it. And unfortunately there is not cure and surgery is not a cure either but there are times when surgery is not long and option and is a must because of possible life threatening issues it can cause. Please feel free to post and questions or ask anything.


Quote:
Originally Posted by lissalaine View Post
Hello all,

My story is quite lengthy so I will try and keep it brief. When I was 15, I blew a pupil and of course, doctors panicked. I had a CT scan which "showed something" and was sent for an MRI. The MRI came back as saying I had low-lying cerebellum and my family doctor waved it off, so I forgot about it. After many more tests and doctors, the pupil was later diagnosed as Adie's tonic pupil, even though my reflexes are still intact.

Now nearly 6 years later, I've been fighting through multiple health problems that are slowly ruining my life. The doctors aren't sure what's going on - I have constant extreme fatigue, dizziness/vertigo, memory loss (I can barely remember my childhood) and ear and neck pain. I also have intermittent hand tremors, headaches (specifically in the back of my head), tingling in my legs, muscle twitches, and blurred vision. Plus, of course, I have a dilated pupil. The hand tremors and tingling has only popped up in the last two weeks.

I was googling my symptoms out of desperation and Arnold-Chiari popped up, and that's when I remembered about my low-lying cerebellum that was never addressed. I actually cried when I was reading the symptom list because it was like reading a description of my life. Could this be a Chiari malformation that got worse? I'm still learning about what all it means.

I was worried that I might have MS and brought it up to my physician - she said, even if I did, it's not a diagnosis I'd want at age 20 and so she didn't do anything. I see an endocrinologist next week but I doubt he can help me. Do any of you think I should ask my doctor for another MRI? To check for Chiari? My problem is that I live in a small town in Canada (population 100,000) with the next biggest hospital 10 hours away - weird problems are either shipped away or missed altogether. I'm the only diagnosed person with Adie's tonic pupil in the city and surrounding area; they pretty much had my family convinced I was dying before realizing it was a benign condition.

Should I be worried about Chiari? Or is having low-lying cerebellum normal? Should I purse getting a neurologist and another MRI? If it is Chiari, would surgery resolve some of the symptoms? (mostly the fatigue is ruining my life - I've all but dropped out of school and my social life has completely disappeared)

I'm sorry for the long post, but I'm desperate. Any advice or thoughts is greatly appreciated. Best wishes and health to everyone.
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Old 11-21-2014, 02:53 PM #7
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In case anyone still follows this and has a similar story - please get an MRI. I did have Chiari, as well as some syrinxs. I was decompressed and have seen relief from a handful of symptoms, but still have plenty of others that remain. I was also diagnosed with EDS this past week. However, I am living life and doing okay, so there is hope! Good luck to everyone and thanks for all your help.
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Old 12-01-2014, 02:59 PM #8
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sorry that link I posted no longer works
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