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Old 11-23-2010, 01:41 AM   #1
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Join Date: Nov 2010
Location: Australia
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abeasley HB User
Is there anyone with Arnold Chiari Malformation here? Do you know anyone with it?

Hi everyone,

I have Arnold Chiari Malformation myself and just have a few questions for anyone with Arnold Chiari Malformation or anyone that knows someone with Arnold Chiari Malformation.

1. How old were you when you developed symptoms?

2. What were your symptoms?

3. Do you know what caused your malformation?

4. How old were your parents when you were born? 35+?

5. Do you suffer from any kind of anxiety or depression? If so, please elaborate.

6. Do you have any other health problems? For example, lupus, diabetes, autism etcetera.

7. Do you have a husband and/or children?

8. Have you had the decompression surgery?

Thank you so much!

 
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Old 01-12-2011, 01:18 PM   #2
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Location: D.C.
Posts: 6
Ehlers Danlos HB User
Re: Is there anyone with Arnold Chiari Malformation here? Do you know anyone with it?

Hi, I was given imaging tests by the Chiari Institute at couple of years ago. The funny thing is I have had two different opinions of the distance of my cerebellum tonsils to the foramen magnum from neurosurgeons and another from a radiologist. So I dunno. I also have a CSF leak.

I heard a few years ago there was a class action lawsuit against the Chiari Institute, but I don't think very many patients had signed on.

The neurosurgeon that evaluated me refused to test me for a CSF leak, so my overall experience at TCI was nothing but a waste of money, because I had to spend several thousand dollars more to get correctly evaluated for the CSF leak.

Last edited by moderator2; 01-22-2011 at 08:59 AM. Reason: please do not post commercial websites

 
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Old 04-09-2011, 07:44 PM   #3
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Join Date: Apr 2011
Location: Pittsburgh, Pennsylvania, United States.
Posts: 1
alibean101 HB User
Re: Is there anyone with Arnold Chiari Malformation here? Do you know anyone with it?

1. How old were you when you developed symptoms?
I was about 11

2. What were your symptoms?
Tinnitus, vision problems, Fine motor skills, neck pains, problems with balance, numbness in feet and hands, dizziness, sometimes slurred speech,

3. Do you know what caused your malformation?
Not yet, no.

4. How old were your parents when you were born? 35+?
My mom was 39, and my father was about 31

5. Do you suffer from any kind of anxiety or depression? If so, please elaborate.
Yes, depression
Fatigue, feeling of worthlessness, impaired concentration, insomnia, recurring thoughts of suicide, a lot of others.

6. Do you have any other health problems? For example, lupus, diabetes, autism etcetera.
I have Anemia, but I'm not sure if that counts.

7. Do you have a husband and/or children?
No, I am too young.

8. Have you had the decompression surgery?
No, I have not.

 
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Old 10-15-2011, 02:13 PM   #4
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Join Date: Jun 2007
Location: ISA
Posts: 44
rozia50 HB User
Re: Is there anyone with Arnold Chiari Malformation here? Do you know anyone with it?

1. How old were you when you developed symptoms? from birth was told

2. What were your symptoms?headaches , ached all over , shakey eyeball

3. Do you know what caused your malformation? from birth

4. How old were your parents when you were born? 35+?

5. Do you suffer from any kind of anxiety or depression? If so, please elaborate.

6. Do you have any other health problems? For example, lupus, diabetes, autism etcetera.

7. Do you have a husband and/or children?yes

8. Have you had the decompression surgery?yes 2000

 
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Old 11-23-2011, 09:41 AM   #5
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Join Date: Oct 2011
Location: Vancouver, BC
Posts: 1
poursoi HB User
Re: Is there anyone with Arnold Chiari Malformation here? Do you know anyone with it?

I am 30 year old female who had a CT in April 2009. The dx then was brain stem lesions and intra-cranial pressure. Two months later I had an MRI, and it was shown to be a Chiari Malformation.


1. How old were you when you developed symptoms?

The mild symptoms started around 10 years old, but they got much worse at 27/28.

2. What were your symptoms?

Chronic daily headache/migraine with aura, balance and coordination problems as a child. When things got worse, I was blacking out after standing up, my headaches became unbearable pain if I bent over or coughed/sneezed, constant nausea, dizziness, "foot drop" of my right foot, inability to swallow normally/feeling of something stuck in my throat, pins and needles in my right arm and leg, severe RLS, and Raynaud's.

3. Do you know what caused your malformation?

No.

4. How old were your parents when you were born? 35+?

My mother was 20 years old, my father was 41.

5. Do you suffer from any kind of anxiety or depression? If so, please elaborate.

Yes. My anxiety had gotten a lot worse around age 26/27, and I was seeing a psychiatrist, who recommended that I talk to my GP about my worsening symptoms. I also have severe depression and ADD, both since childhood. I am medicated for ADD.

6. Do you have any other health problems? For example, lupus, diabetes, autism etcetera.

Biliary colic/gallbladder removal in 2009, chronic bronchitis, Benign Joint Hypermobility Syndrome (waiting to see a geneticist to test for Ehlers-Danlos Syndrome), arthritis, RLS, and Raynaud's Phenomenon. Mental health - ADD, major depression, anxiety, AvPD.

7. Do you have a husband and/or children?

No to both.

8. Have you had the decompression surgery?

No. My neurologist feels that it can be beneficial to some patients in the short-term, but most people end up as bad or worse than they were before the surgery. He feels that if I am able to manage my symptoms by altering my lifestyle, that would be better for me.

Last edited by poursoi; 11-23-2011 at 09:43 AM.

 
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