17149446 tn?1454109779

Waiting to see a neurologist..

Hello all! I've got Ehlers Danlos syndrome hypermobility type, scoliosis and thoracic outlet syndrome. About two years ago I started noticing a lot of the time when I sneezed, strained, coughed, etc. I had this really severe pain in the back of my head... like a pressure building up then like someone slamming a huge nail into the back of my head.. sometimes it would be so severe I thought I was going throw up or pass out and had to hold onto my head until it slowly went away. Over the years it's slowly gotten worse... happened more often... and over the last couple months I started having a near constant headache at the back of my head. I also have tinnitus in both ears and I constantly hear this swooshing noise.. like listening to a shell. So, anyway... I went to the doctors with information on Chiari and he said it was rare, so doubtful I had it but the type of head pain I'm getting needs to be investigated immediately, so referred me to a neurologist to get an MRI. Is it rare? I mean, He could be right but I feel like it fits.

My main reason for coming here is I recently started getting a sharp pain when I move my eyes around (Sometimes just the one eye, other times both)... could this be related to the constant pressure at the back of my head? It's so painful.. I avoid moving my eyes as much as I can. It also hurts to put any pressure on the eye... like when applying eyeshadow. But the eye itself looks fine and other than the pain when moving it... feels fine. I'm not sure but it just seemed to come about at the same time. Does anyone here with Chiari get this?

Thanks for any advice! xx  
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620923 tn?1452915648

  Glad you know about being prepared and know not to rely on the Drs....knowing helps us decide which Dr is the best one for us.

  Keep us posted on what you find out.
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17149446 tn?1454109779
Hello! Thanks for the warm welcome. :)

Thanks for the information.. I figured as much. Especially as he said 'in his whole career he'd only seen one person with it'... I get what he's saying but just because YOU have only seen it once doesn't mean it's rare; Maybe people can in with it and he sent them away saying it was just headaches because he didn't make the connection. I think I was just lucky because I knew about the connection between EDS and Chiari, so I personally brought it up in the appointment... if I didn't... who knows if he'd have mentioned it as a possible diagnosis.

Thanks so much! Hopefully I get a well informed Neurologist who knows about the other conditions and EDS. I might google some information and take it with me just in case. I'm sure some doctors won't appreciate it but I feel better knowing I'm not going in relying on them to be knowledgeable. I've always had more success in appointments when I'm prepared.

I hope I get my appointment soon. I've been feeling so dizzy and finding it hard to focus on things I'm reading/watching/etc... my eyes keep going blurred out then back to normal. It's so uncomfortable... not to mention the freaking headaches.

Thanks again! I will definitely get copies of everything.. I learnt my lesson last time when I had an x-ray and they only told me one of the things they found... then 3 years later I got a copy and was like... oh. lol.
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620923 tn?1452915648

  Hi and welcome to the Chiari forum.

First let me say, the only thing rare about Chiari is well informed Drs......
In fact most with Chiari have EDS...but are not aware of the EDS....you do....there are some Drs doing research as EDS being a cause for the Chiari Malformation to form...

The symptoms are similar but there are several related and non related conditions with the same symptoms so ALL need to be ruled out.

Get the MRI and if you can copies of the MRI and report.
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