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luckygirl
@luckygirl

Posts: 28
Joined: Apr 04, 2017

Chronic pain due to chiari 1 malformation with syringomyelia

Posted by @luckygirl, Apr 4, 2017

Chairing 1 with Syringomyelia.

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I would be very interested to know if anyone else has had this condition and what medication their taking.

Hello @luckygirl, welcome to Connect. When you say chairing 1, are you talking about a chiari malformation? If so, we have a discussion with many active members around that exact topic that I would love to introduce you to.

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@JustinMcClanahan

Hello @luckygirl, welcome to Connect. When you say chairing 1, are you talking about a chiari malformation? If so, we have a discussion with many active members around that exact topic that I would love to introduce you to.

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Yes I did mean Chiari Malformation. Sorry I didn’t notice the miss spelling!.

@JustinMcClanahan

Hello @luckygirl, welcome to Connect. When you say chairing 1, are you talking about a chiari malformation? If so, we have a discussion with many active members around that exact topic that I would love to introduce you to.

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No problem, just wanted to make sure since there are so many medical terms out there! Also, I wanted to double check so that I could share the following discussion with you:

– Chiari Malformation Type 1, http://mayocl.in/2emYs3Z

If you click on the link above, you will be brought to a discussion full of members talking about all things Chiari Malformation.

@luckygirl, I hope we can connect you with others who have syringomyelia, and specifically those who have both Chiari malformation and syringomyelia. As you know syringomyelia has several possible causes, though the majority of cases are associated with a condition in which brain tissue protrudes into your spinal canal (Chiari malformation).

Please meet @lizwhite80 @mkell13 @vbrunette @scotthinojosa @maidmarion @david33 and @ziva who have recently talked about living with Chiari malformation and/or syringomyelia. I’d also like to tag past members @christinemullen @lillyfam @msjoyce @diane63. They haven’t been on Connect for quite a while, but perhaps this topic will bring them back.

While we wait for others to join the conversation, can you tell a bit more about yourself LuckyGirl? How long have you been managing Chiari malformation and syringomyelia? What symptoms do you experience and how do you manage them?

I found out thru My Chart I have chiari malformation with tonsils of 9mm. I have been very sick since August of 2016 with migraines, pain from neck shooting up around my ears into my eyes with horrible pressure behind eyes, dizziness neausea vomiting and confusion. I spent 3 weeks in bed because I couldn’t get up because of pressure behind eyes and dizziness. The symptoms have somewhat subsided with a few symptoms remaining. I have been told by neurologist the chiari malformation is too small to cause these symptoms. Please I need help. I have been told
That only neurologist specializing in chiari malformation wil bother with this disease and even if it’s small can it cause these problems?

@nanniesue4

I found out thru My Chart I have chiari malformation with tonsils of 9mm. I have been very sick since August of 2016 with migraines, pain from neck shooting up around my ears into my eyes with horrible pressure behind eyes, dizziness neausea vomiting and confusion. I spent 3 weeks in bed because I couldn’t get up because of pressure behind eyes and dizziness. The symptoms have somewhat subsided with a few symptoms remaining. I have been told by neurologist the chiari malformation is too small to cause these symptoms. Please I need help. I have been told
That only neurologist specializing in chiari malformation wil bother with this disease and even if it’s small can it cause these problems?

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Hi @nanniesue4 and welcome to Connect.
While we wait for others to respond about their experiences with chiari malformation, I thought you might like to read these stories about patients finding relief from pain caused by this condition

– Relief for pain caused by Chiari type I malformation http://mayocl.in/2qigntC
– Diagnosis and Treatment of Chiari Malformation Spurs Nikki Prins to Reach Out to Others http://mayocl.in/2rSSMRt

Does the neurologist that you consulted specialize in chiari malformation? Are you seeking a second opinion?

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