Patients Nervous system diseases

Arnold Chiari Malformation

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Astra1547

Edited on 02/02/2016 at 10:17

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Astra1547

Last activity on 22/05/2020 at 11:51

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65 comments posted | 3 in the Nervous system diseases Forum

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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!

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Astra1547

Edited on 30/01/2016 at 09:37

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Astra1547

Last activity on 22/05/2020 at 11:51

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65 comments posted | 3 in the Nervous system diseases Forum

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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.

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Arnold Chiari Malformation https://www.carenity.co.uk/forum/nervous-system-diseases/living-with-neurological-diseases/arnold-chiari-malformation-755 2016-01-30 09:33:33

Astra1547

02/02/2016 at 10:17

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Astra1547

Last activity on 22/05/2020 at 11:51

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65 comments posted | 3 in the Nervous system diseases Forum

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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

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Arnold Chiari Malformation https://www.carenity.co.uk/forum/nervous-system-diseases/living-with-neurological-diseases/arnold-chiari-malformation-755 2016-02-02 10:17:22

ljc1969

17/10/2020 at 14:44

ljc1969

Last activity on 09/01/2021 at 20:11

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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

Arnold Chiari Malformation https://www.carenity.co.uk/forum/nervous-system-diseases/living-with-neurological-diseases/arnold-chiari-malformation-755 2020-10-17 14:44:54

Arnold Chiari Malformation

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