Arnold Chiari Malformation

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Patients Spasmophilia

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Posted on
Good advisor

Hi, I was diagnosed with Arnold Chiari Malformation Type1 June 2006. This is a rare condition of the brain. I am still learning about this condition as nothing was ever explained to me by my neurologist, GP and other Dr's and medical people. I only found out about this condition via the internet. I am lucky enough not to have it as bad as most people I have read about. This condition can be life threatening to some people. Some of the people's stories I have read about have since passed away. Chiari has many symptoms of which I have experienced many of them. I have added a link to Chiari. There are more symptoms than what is on this link.

I have been prescribed Pregabalin 75mg  I take 1 capsul in the morning and 1 at night for my symptoms which has helped a great deal although I still get some of them now and again but, not as bad as before when I had no medication to help me.

https://en.wikipedia.org/wiki/Arnold%E2%80%93Chiari_malformation

Astra!

Beginning of the discussion - 30/01/2016

Arnold Chiari Malformation

Posted on
Good advisor

If anyone has this rare condition of the brain Arnold Chiari Malformation (ACM) condition or knows of anyone please feel free to post a comment.

Best Wishes

Astra!

Arnold Chiari Malformation

Posted on
Good advisor

I have added below another link to Arnold Chiari Malformation (ACM) There is a graphic to show what it actually is and some of the symptoms too. When I was first diagnosed with this condition I looked through AOL blogs to see if anyone had it on there, then I looked on a side bar of one of the blogs that I was linked too. It read 'Chiari people' and as I had no idea what Chiari was, I thought it was a race of people that I hadn't heard of before...lol until I read the link. I asked the lady I had been in contact with on AOL and she told me her son has got the condition. She explained some of it and I got some more information via the internet. I am still linked to this lady on facebook. Her husband was diagnosed with it too, so I don't know if it runs in families or not. Both her son and husband had operations for this condition. Some of the information I have read about suggests it does run in families and some says no it don't, so not sure of that really!??

http://www.mountsinai.org/patient-care/health-library/diseases-and-conditions/chiarimalformation

Best Wishes

Astra!

Arnold Chiari Malformation

Posted on

Hello Astra,

I'm 51yrs old, have Spina Bifida, and live in the UK. I only found out about my Chiari Malformation a few years ago. I am now struggling with all sorts of sensations and feelings which are exhausting. My doctors don't bother with it and yet I'm finding each day harder.  You posted a few years ago here, so I wonder whether you are still on the site. 

Lisa