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549269 tn?1236130637

Chiari & Strokes

So there is a question as to whether or not I have been having TIAs.  Mini strokes as they are called.  I am in Rochester MN right now at the Mayo Clinic to see several doctors.  YEsterday at my hotel I was taken by ambulence after having sudden severe dizzyness, slurred speech, left sided weakness, difficulty walking, and possible seizures.  After 1 1/2 hours in the ER and several tests I started to return to normal.

I see an stroke doctor today and Dr Oro in January.  Should I call Dr Oro about my symptoms?  I don't know what to do and the doctors here question whethere I DO have Chiari although Oro has already confirmed it.  I don't know what to do but I'm scared that  I will have a massive stroke or something and die.

Any tips appreciated.  


Thanks!
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Avatar universal
I’m in a very similar boat. I wonder if we have cerebellar strokes that are missed due to lack of knowledge and meaningless diagnoses controversy between doctors and overly rigid diagnostic criteria. I’ve had to relearn how to move properly. It took years and with my symptoms acting up again I don’t want to start all over again or endure permanent brain damage . I hope you find answers, best wishes to you!
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1 Comments
Hi and welcome to the Chiari forum. Unfortunately this is an older post( 2008) , but if you want to have a discussion regarding TIA's you can start a new thread!
I know there are many Drs out there that are not well informed and still attempt to do surgery...while others make statements not knowing what they are really talking about.....all the while we are running around in circles trying to get answers....
Finding the right Dr is key!!

May I ask, have you had the PFD?
620923 tn?1452915648
COMMUNITY LEADER
Melissa....u can have a zero herniation and have chiari and suffer from the symptoms...sometimes a chiari 0 patient can have more sever symptoms than one with a large herniation. It is the blockage of CSF and the crowding of the brain that r important!!

My herniation is 6 mm and several of the drs I saw said I didn't have symptoms from chiari either....and it's because they don't know enuff about chiari to even make that statement.

Keep pushing forward- Dr Oro will be a big help!!!

Godspeed
"selma"
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549269 tn?1236130637
That totally makes sense!!!  From the sites that I have read abotu it it is a thing that happens in children but it fits.  And it has gradually gotten worse since October.  I emailed Dr Oro's office so hopefully they will let me know if it is something that needs to be addressed sooner.  As long as I don't die I don't mind waiting, lol.  Thanks for the help.  

I have a feeling that all (or most) of my problems are from the Chiari.  The frustrating thing is that the doctors at Mayo don't know enough and don't think that I acutally have it (1-2mm herniation but cerebellum is sitting on my skull).  I am here for pain rehab and they are concerned abotu my symptoms.

Thanks again!!!  I will let you know what happens.
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620923 tn?1452915648
COMMUNITY LEADER
I sent u a PM with a link....not sure what is happening to u.

Take care!!

"selma"
Helpful - 0
549269 tn?1236130637
Good Idea!  I will have them send them to him.  I didn't even think of that.  The stroke doctor today said that I have no clots in my brain so that is good at least.  They think I may be having seizures.

Can seizures be a part of Chiari?  It's like I am just progressively getting worse with my neurological stuff.  Scary.
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620923 tn?1452915648
COMMUNITY LEADER
Since u have an appoint with Dr Oro, did u have all test results from ur ER visit forwarded to him?...if not request that the results r sent and wait a reply.I am not familiar with TIA's.

Hope this helps.

Good luck
Godspeed
"selma"
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