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Caprikid
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20-10-2019, 12:24 AM
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Chari Malformation

Hi Folks, I am new on here I am looking to see if anyone suffers from a Arnold chari malformation or know someone who does ? I am a sufferer looking for advice. Thanks Alex
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keezoy
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20-10-2019, 03:35 AM
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Re: Chari Malformation

Hi Alex. I don't suffer from Arnold Chiari Malformation but I have known somebody who has. Send me a private message if you don't want to talk about it here.

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Keezoy (My name is Keith)
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20-10-2019, 10:04 AM
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Re: Chari Malformation

Originally Posted by keezoy ->
Hi Alex. I don't suffer from Arnold Chiari Malformation but I have known somebody who has. Send me a private message if you don't want to talk about it here.

Regards
Keezoy (My name is Keith)

Keezoy, while it is kind of you to offer help, don't forget newcomers can't do private message for about 3 months.
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20-10-2019, 04:57 PM
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Re: Chari Malformation

I have never heard of it before but just Googled it. You learn something every day.
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20-10-2019, 11:02 PM
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Re: Chari Malformation

Whoops!..Thanks Mups. My bad.
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Caprikid
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21-10-2019, 02:08 AM
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Re: Chari Malformation

Originally Posted by keezoy ->
Hi Alex. I don't suffer from Arnold Chiari Malformation but I have known somebody who has. Send me a private message if you don't want to talk about it here.

Regards
Keezoy (My name is Keith)
Hi Thanks for your reply Keith 😉I don't mind discussing it on hear 🖒If that's ok ? It's a terrible condition that affects different people in different ways . There are many symtoms but the most common are headaches, back , neck and shoulder pain , tinnitus, restless leg syndrome, and it is usually diagnosed with a MRI scan .

I was diagnosed around 15 years ago because I had a MRI scan done after having passed out.. but I was told that the Chari was a coincidental find as I had no Symptoms at the time. However I am now suffering from most of the symptoms 15 years later so I am starting to think the Chari malformation is starting to have a affect.

The problem I have is that my local GP won't have heard of Chari as it's quite a rare disease and a lot of people who have a Chari have no Symptoms and others have severe Symtoms. Cheers Alex
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21-10-2019, 09:35 AM
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Re: Chari Malformation

Originally Posted by Caprikid ->
Hi Thanks for your reply Keith 😉I don't mind discussing it on hear 🖒If that's ok ? It's a terrible condition that affects different people in different ways . There are many symtoms but the most common are headaches, back , neck and shoulder pain , tinnitus, restless leg syndrome, and it is usually diagnosed with a MRI scan .

I was diagnosed around 15 years ago because I had a MRI scan done after having passed out.. but I was told that the Chari was a coincidental find as I had no Symptoms at the time. However I am now suffering from most of the symptoms 15 years later so I am starting to think the Chari malformation is starting to have a affect.

The problem I have is that my local GP won't have heard of Chari as it's quite a rare disease and a lot of people who have a Chari have no Symptoms and others have severe Symtoms. Cheers Alex
Really sorry to hear that Caprikid. So is it a disease that comes on or are you born with it. I understand it is when your brain grows into your spinal column.
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22-10-2019, 09:56 PM
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Re: Chari Malformation

Caprikid, while this is a concerning diagnosis, you sound like you are well-read on the condition, and fighting the good fight. I lost a friend in high school who had a severe congenital form of it, but it is believed that she died only because she may have had a head trauma associated with it. That was in the late 1970s, so it is concerning that your physician is not taking you seriously or denying the condition altogether. I would hope that you have a neurologist rather than a general practitioner handling your case.

I know that in the most severe of cases, surgery can be done, but hopefully you will never reach that point. Don't they also do all sorts of physical therapy to help with symptoms?
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23-10-2019, 02:38 AM
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Re: Chari Malformation

Originally Posted by Surfermom ->
Caprikid, while this is a concerning diagnosis, you sound like you are well-read on the condition, and fighting the good fight. I lost a friend in high school who had a severe congenital form of it, but it is believed that she died only because she may have had a head trauma associated with it. That was in the late 1970s, so it is concerning that your physician is not taking you seriously or denying the condition altogether. I would hope that you have a neurologist rather than a general practitioner handling your case.

I know that in the most severe of cases, surgery can be done, but hopefully you will never reach that point. Don't they also do all sorts of physical therapy to help with symptoms?
Absolutely right I think. I totally agree with what surfermom has said. Good specialist treatment, cranial surgeon, Neurologist etc. And allied health support is what I would look for if it was me. MOst important is that you are under the care of people who know what they are doing and are very familiar with the condition. It is a worry that your GP does not seem all that fussed with educating him/herself on the condition. Also be careful of the spelling. It is Chiari not Chari. Just a tip.
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