Topic of the discussion
Posted on 23/01/2016 09:43
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.
Beginning of the discussion - 30/01/2016Arnold Chiari Malformation https://www.carenity.co.uk/forum/spasmophilia/living-with-neurological-diseases/arnold-chiari-malformation-755
Posted on 30/01/2016 09:33
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.
Posted on 02/02/2016 10:17
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!??
Posted on 17/10/2020 14:44
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.