Chiari Malformation Community
Undiagnosed in Canada and in need of help
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This patient support community is for discussions relating to Chiari Malformation and Living with Chiari Malformation.

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Undiagnosed in Canada and in need of help

Hey,

I haven't been diagnosed with Chiari Malformation but suspect I have it through doing online research. I have been diagnosed EDS (hypermobility type). Sadly I'm in Canada and it seems like no doctors here treat or know about Chiara, let alone EDS so I have no way of perusing a diagnosis, or a treatment. I'm pretty lost, which is why I'm here.

My symptoms include:
-lightheadedness and near fainting when standing for more than a few minutes (i've actually fainted a small number of times)
-Pain/tension/stress on my lower neck that vibrates up my head and down my spine, and that hurts more when I move my head.
-Dizzyness.
-Bobble-head feeling
-Difficulty standing, or sitting when I don't have neck/head support. Lying down/resting my head always improves pain and lightheadness. Wearing a soft neck brace also helps.
-Difficulty swallowing and chronic acid reflux
-Slurred speech when my symptoms are worse (like my tongue is heavy)
-Ringing in ears
-Need to urinate frequently (like, I use the washroom every half an hour)
-Scoliosis
-tightness around my chest (like im wearing a corset thats too tight)

Some of these symptoms might be due to my EDS.... but as you can imagine, they're really reducing the quality of my life and I feel like they're only getting worse.

Seeing as I dont have support from doctors about this, I'm really at loss about what to do. I wear a soft neck brace when I'm home and that helps, and I try to rest my head as often as possible, and I rdrink a lot of water.

Does this sound like it could be Chiari? Does anyone have any suggestions on what I can do to improve symptoms, or possibly where I can go in Canada to be tested for this, and treated if I do indeed have it?

I'm really desperate for help... any suggestions will be really apprecaited

thanks!
Tags: Chiari
3 Comments Post a Comment
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Avatar_f_tn
Is it possible for you to get an MRI done?  Have you been tested for POTS?  
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620923_tn?1405378443

  Hi and welcome to the Chiari forum,

I know it must feel like there r NO Drs that treat or understand Chiari or related conditions like EDS but there are, we do have a list of Drs that have treated members here for it, use the list to research the Drs to help u find the right Dr for u,

It is possible ur EDS could be causing many of ur symptoms....as well as POTS or ICP....

Have u had a brain MRI? Do they let u get copies of ur MRI on disk up there? IF so, get them and u can send them to Chiari specialists for review, some charge a nominal feel while others may do it free of charge.

Keep us posted : )
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Avatar_m_tn
BB11 - I haven't been formally tested for POTS, but my doctor said I had it based on my symptoms. I have had an MRI done a few years ago which came back normal.

selmaS - I will check out the list, thank you! And yes, it is very possible that EDS is causing my symptoms. I didn't think about sending copies of my MRI to an out of country specialist, but that's a fantastic idea that I will definitely look into. Thanks!
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