Chiari Malformation type 1

Posted by anorwalk @anorwalk, Jun 19, 2013

Hi,

I’ve been reading all the post on chiari and wondered if anyone has a good out come of the surgery. I have been to 4 neurologist and 1 surgeon and keep getting different answers. 3 drs say I don’t need surgery and the last one said that i really need it or could be paralyzed by any straining. I have a headache all the time and can barely function. Balance problems, numbness and burning in my hands and legs My hurn. Is only 5mm. Any advise? Thank you.

@spoiledheather

Has anyone on here had surgery for chiari malformation??

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Yes I have but I'm afraid my outcome was not that good so I will spare u the details, just fine everything there is to know about it knolage is everything !

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@duke77

Yes I have but I'm afraid my outcome was not that good so I will spare u the details, just fine everything there is to know about it knolage is everything !

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Hi, @duke77 – I think your experiences and comments here would be helpful to others in this discussion on chiari malformation. Wondering if you would share more about the outcome you mentioned was not that good, and also what you were saying about knowledge being everything?

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@lisalucier

Hi, @duke77 – I think your experiences and comments here would be helpful to others in this discussion on chiari malformation. Wondering if you would share more about the outcome you mentioned was not that good, and also what you were saying about knowledge being everything?

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lisaluciier,Hi have a whole lot of deficits like to type this is taking me forever, I can only walk around 2000 steps intense pain burning and numbness in arms hands and back, my right leg goes numb besides the brain fog lol these are the things that happen in a regular day that I am aware of.

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@duke77

lisaluciier,Hi have a whole lot of deficits like to type this is taking me forever, I can only walk around 2000 steps intense pain burning and numbness in arms hands and back, my right leg goes numb besides the brain fog lol these are the things that happen in a regular day that I am aware of.

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Hi, @duke77 – sorry that to type your post took forever. I can imagine that would be hard to take.

Hoping some of the other members who have posted here — like @tracyeylens @mfann @luckygirl @david33 @oh_suzie_q @giglgirlnm @jillweinandt @denise32 — will join in with some thoughts on the slow typing and only being able to walk around 2000 steps; the intense pain, burning and numbness in your arms, hands and back; and the brain fog.

What is the next step in your treatment, @duke77?

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@lisalucier

Hi, @duke77 – sorry that to type your post took forever. I can imagine that would be hard to take.

Hoping some of the other members who have posted here — like @tracyeylens @mfann @luckygirl @david33 @oh_suzie_q @giglgirlnm @jillweinandt @denise32 — will join in with some thoughts on the slow typing and only being able to walk around 2000 steps; the intense pain, burning and numbness in your arms, hands and back; and the brain fog.

What is the next step in your treatment, @duke77?

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That's ok ,lisaluciierq_, I don't mind that's why I don't say much I feel as though I belong it's just nice to know we are all in the same boat sort of lol

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I was diagnosed with both Chiari Malformation and Syringomyelia back in August 2015. Had surgery in September 2015. My surgery was successful. It accomplished what it was meant to do by stopping the progression. I do have issues with my hand, but had EIP Opponensplasty last summer to improve the usage of my hand. I continue to be monitored by a neurologist yearly. As of my last MRI this past spring, everything continues to look good.

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