Hello. I’m Christine and I was recently diagnosed with Chiari 1. I’m 31 and I’ve been dealing with frequent, increasingly terrible migraines since I was 16… or so I thought. I had a 3 week long migraine in December with new visual symptoms that prednisone didn’t really help much, so my neuro ordered an MRI. It showed a 7mm Chiari malformation on the right side of my brain. She’s referred me to a local, specialized neurosurgeon who has worked with a fair number of Chiari patients.
I’m a little stunned, kinda worried, and somewhat hopeful. All those times I had horrible “migraines” and said my skull feels like it’s too small… it IS??? Maybe this is why my “migraines” have never responded to triptans or other migraine medications that I’m not allergic to. (I’ve got the lovely complication of being deathly allergic to aspirin and NSAID, plus I palpitate from the caffeine in green tea.) Maybe this explains the huge range of symptoms I deal with that I’ve always had the sneaking feeling are all connected. I’ve started to read accounts of the most common symptoms and… holy crap. Maybe this is why I’m experiencing all this. Maybe there is actually an answer. But #%&!@, potential brain surgery? Kinda blows my mind a bit.
I see the specialist in a month. I’m here to try to learn all I can before I meet with her, so I/we can make informed decisions.
Hello Christine, you are not alone, and as you will learn we are all different and the same in the symptoms and the way we treat them, surgery, diet, medication. Make sure to do research, don’t be freaked out by what you read and find. Make sure your doctor is a Chiari doc, if you have to explain to them, they are not. I got diagnosed in 2000, have gone through surgeries, not all dealing with my chiari, had my last one 2015, I was diagnosed with Meneires also, so they dealt with that first, less evasive, thats my inner ear, they wanted to deal with that first. During all of this I have maintained a healthy diet and weight, the docs say it has helped me with recovery. I have done yoga through all of this also, it helps with my pain and clears my mind. I use essential peppermint oil, and peppermint candy for the nausea. I will send positive thoughts your way, and hope that this finds you having a good day. K
I’ve started my research, but it’s a bit overwhelming. At this point, I’m just trying to figure out what I should know going into the visit. What tests may be requested, whether they really mean anything, what I need to ask my specialist when I see her. Most of what I’m finding keeps saying the same general thing: Chiari can affect so much and cause so many different symptoms; surgery is sometimes indicated but never is certain to relieve symptoms. I’m thinking to enlist a nurse friend to maybe help me wade through some of this. She probably has access to databases with academic articles on such subjects… I honestly have an easier time gleaning info from those.
I’m going to be seeing Dr. Petra Klinge, and Chiari is listed as one of her specialties (her “general” specialty is cerebrospinal fluid disorders): http://www.brownneurosurgery.com/our-doctors/petra-klinge.asp
I’m told by her nurse that Dr. Klinge tends to spend a really long time with patients, esp. for the initial meeting, and almost always runs over her allotted time, so I’m hoping that’s a good sign. Hoping. I’ve been dealing with these migraines (or “migraines”) for 15 years and dealt with a lot of only dealing with the symptoms or dismissiveness or suspicion that I’m just a med-seeker.
Sadly, mint breaks down in the body to methyl salicylate - basically an NSAID, so I cannot use it. Allergic to anything with mint or menthol… ditto yellow dye #5, because it’s basically the same class of chemical
Thank you for the good vibes though! I wish I could stockpile them for the bad days.
