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Malformations - March 30th 2017, 03:40 AM

Ive had migraines for about 4 years now. Recently I got a MRI, well today I went and found out what it says. She told me I have malformation in my brain called Chiari. Now im freaking out and my parents keep telling me to be happy to find out the cause maybe of my migraines but i am freaking out.
I mean im 19 and just found this all out.
Anyway I just needed to get this out there some how
   
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Re: Malformations - March 30th 2017, 04:32 AM

Hi Rose,

I know how scary finding out that you have a malformation in your brain can be. No one ever wants to find out that there is something wrong with them, especially in their brain.

However, your parents are right, it's a good thing that they have found out what is wrong and what is causing you to get so many headaches. I know you mentioned that you're 19, which is very young, but at least now they know that there's something wrong, instead of you always having to wonder several years from now.

I've only heard a little bit about Chiari at the hospital, so I only know a little bit about it. I know that if it's not that severe, you won't have to have any kind of treatment done, other then regular examinations and MRI's. If it's a bit more severe then you might need surgery just to reduce the pressure.

Hopefully they have a special kind of medication that they can give to you to help with the headaches. I do hope you feel better too! We are always here for you, you're not alone!

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Re: Malformations - March 30th 2017, 05:12 AM

Hi Rose,
I'm sorry to hear about this. I can't imagine who scary it must be.
I don't know anything about chiari, sorry, but I want you to know that if you need to talk, i'm here for you.

Stay Strong
Tort


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Re: Malformations - March 30th 2017, 09:12 PM

Hey there, thanks for reaching out! Receiving any kind of diagnosis can be scary and especially so if it's a malformation of an important organ such as the brain.

Like Britt said, it's a good thing that your parents now know what's going on. Because this way, you can get the proper treatment you need to live a long and comfortable life with this malformation. I would suggest reaching out to your doctor for more information on this, or find a support group so you feel less alone.

I think Britt pretty much said everything the best. Don't be afraid to reach out to us again if you need to regarding this subject or anything else.
   
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Re: Malformations - March 30th 2017, 11:55 PM

Hey,

First off, I am SO sorry to hear you have migraines. I also have migraines, I've had them for about 4 years as well, but mine are because my head simply hates me. So it isn't the same, but I can understand the pain.

I actually have heard of Chiari and know a little bit about it, because it was one of the things I was tested for and my doctor talked to me about as a possibility. And of course, because I am a curious person, and so is my mom, we looked it up.

One of the first things I want to say though, is make sure to take some deep breaths. The word malformation sounds horrifying, but there is a lot more to look at in this picture. Because I agree with you, that if I heard that word I would be freaking out. But I also agree with your parents that at least now you know the cause, which is HUGE when trying to treat someone.

It is scary to get a diagnoses so huge at a young age, but it can be good in a way because there can be some treatment options they will offer to younger people but not older people because younger people will heal better. So you might have better treatment options because you are young.

One thing I can't stress enough in the whole headache/migraine/neurology world. Make sure you have a doctor who understands your diagnoses, who isn't just "Oh I've heard of that..." but actually understands it. If you can find one who specializes in it, that is even better. But it makes a world of difference, because you will get better care, and can get better treatment options.

But remember, take some deep breaths. Don't be afraid to ask your doctor questions about what can be done. And most of all, don't ever forget you are alone in this. Because you aren't.


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Re: Malformations - March 31st 2017, 02:19 PM

It's uncommon but more and more people are getting worked up then before so more and more people are finding out about it. I have taken care of a few people with it before. I know one girl was recently diagnosed with it.
   
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