Chiari Malformation Community
Migraine/Chiari Connection?
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Migraine/Chiari Connection?

Hi!

When I was first diagnosed with chiari... my GP thought it might be the reason I get so many migraines (I have chronic migraines... 15+ a month, that interfere with every aspect of my life), as we haven't been able to identify a reliable set of triggers or a successful treatment option yet.

But... all of the neurologists I have seen are absolutely adamant that there is absolutely no connection between chiari and migraines.

I live in Canada. My GP said that the more research he does on the subject of chiari, the more it looks like neurologists in Canada all agree that there is no connection between chiari and migraines BUT that in America a lot of doctors believe that there is a connection. My GP wants to send me to the states to get looked at to make sure, 100%, that there isn't a connection.

The reason why my GP thinks that there might be a connection in my case is because everything that triggers migraines for me has to do with physical activities... such as: writing, using a laptop computer, carrying a bag, wearing a backpack, driving... <- to name a few. My GP thinks that all of these activities involve pressure on my neck/spine... so that is why there might be a connection. It makes sense to me and my entire family. But... the neurologists just stare at us or laugh when we inquire about a possible connection.

Anyway... I am fully willing to believe that there isn't a connection, as I really would rather there just be ONE thing wrong with me and that the chiari was asymptomatic in my case. BUT... it does seem like there is disagreement in the medical community on this issue...

What do other people think? Is there anyone here who has chairi AND migraines? What have your doctors told you?

And... for those who live in the States... would you say that the medical community in America has a different view of chiari than the medical community in Canada? Do you think it's worth it for my GP to send me to America?
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6 Comments Post a Comment
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620923_tn?1416285879
Hi marileew,
I believe all of us regardless where we live will come across drs be they GPs...NS or NL that have the opinion that chiari is not the cause of our symptoms.

That is way we stress so much here that you must find a chiari specialist!! Once you do then you will see a difference of opinions and treatment.

For years I was treated for migraines...and anxiety.....

I do not know what degree of symptoms u r having...if u have a CSF blockage....or if u have ne other chiari related conditions such as a syrinx or tethered cord.

I would say...u will find drs here with the same thought process as those in Canada....but if u do not have chiari specialists there to go to...TCI in NY or Dr O in CO are 2 of the choices that may be closer to u depending where in Canada u r in.
PS- have u read the poem at the top of the forum by Dr Oro?
"selma"
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768044_tn?1294227036
Thanks for the reply!

I don't know if we have chiari specialists in Canada... but I know for sure that the one chiari specialist that we had in my City/Province retired recently so I can't get a referral to him. Actually... my GP tried to get me a referral anyway (I'm not exactly sure how he tried to do that... but he did... I think he knows the doctor personally and maybe sent him a personal email... although, it was a long shot that of course didn't work... but, my GP is really nice and always tries long shots just in case).

I think there might be specialists in other provinces... but, I am not sure about this.

Anyway, my GP said he has all the paper work to send me to the states now if I want to pursue that option... we have universal health care in Canada, which is a government health plan that we pay into instead of paying into a plan at work, so, he has to apply to send me to the states so the government will cover the doctor's visit.... and the flight and stay would cost me the same  amount as going to another province in Canada (my government health plan, and my extended medical plan of course wouldn't cover any of those associated costs). But I am guessing that since my GP is talking about sending me to the states at all it means that there aren't a lot of specialists here... or at least there aren't a lot who think that there is any possible connection between migraines and chiari.

If I do go to a specialist in America, I will make sure to tell my GP about the doctors you mentioned. I hope that the government will send me to which ever one my GP refers me to... I wonder how that works....
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620923_tn?1416285879
Both drs , Dr. Oro and Dr Bolognese will read thru ur MRI's and reports b4 making an appointment, so u only get one if they feel they can help.

From what other;s have told me they will get u in quicker if they feel u need immediate attention.

But u will get feed back from either.

Visit TCI(The Chiari Insitute) and print off the forms for an appointment...it will help u see what types of symptoms they r looking for...at least u can use it as a guide.

I pray u find a dr that is right for u!!
"selma"
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570413_tn?1299536261
Do any of the doctors actually live with Chiari?  

Chiari causes headaches.  Now, whether or not they are true "migraines", I don't know, but they are debilitating headaches that cause pain and a host of other problems.

Do the research for yourself...the information is absolutely out there.

Rebecca
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768044_tn?1294227036
I'm fairly sure that my neurologist doesn't have Chiari... at least he didn't mention it... you'd think he would since it showed up on my MRI and I asked him about it...

It's so true though... I've found quite a lot that it's the doctors who live with the same kind of pain and symptoms as me that are the most empathetic and understanding... and also the ones who usually help the most too.
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928066_tn?1244520340
Hi marileew...I have chiary malformation 1....and also the the awful migraines...when I asked the dr he told me that it might b from Chiary...but also metioned some other reasons that I have migraines....I hadn't had them since last year sept. I think (and I'm SO GLAD )...I have no idea y cuz I use 2 have like 2 /month....when having them I was completely OFF...no light...no noise...just off couldn't do anything....and that pounding pain would make throw up all the time....I pray 2 God the migraines won't come back cuz I have enough pain with this Chiary.... and also I pray that you can b migraine free :) cuz I feel your pain and I know its awful....b blessed
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