Newbie...on on fronts. Some general symptom questions and my story

Welcome Greetings and Introductions
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Hi everyone, I am new to the site and new to a Chiari Diagnosis. I am 32 years old, living in Canada, which means I have slow paced medical care :)

My journey with Chiari began this fall when I started to have vision problems in my eyes, I later found out that these were migraines with aura. Initially these incidents were pain free...and then after I began to have severe headaches as soon as my vision returned to normal. I eventually went for a CATscan and my provider told me I have a 6mm herniation and Chiari. My provider fluffed off Chiari and called it a nuisance rather than a serious diagnosis (?!)...I was really optimistic leaving that appointment...until I researched what Chiari on the internet. I am scheduled for my first MRI next week and my Neuro appointment is not until December (joy Canada). So I feel I have been left alone to deal with this and have many questions that I don't think a general provider can answer. I have developed some anxiety since the diagnosis, hence searching out support :)

I am curious to know if my symptoms are common in the Chiari community? I currently have:

1) Feeling a lump/buldge in the right side of my neck and can not move it fully towards my ears on either side due to pretty significant pain (never goes away...started January 1st, 2014 while sick with a cold) I can move it back and forth with no problem

2) Migraines and vision loss have stopped but I now get stabbing pain in my head and or eyes (what I think is a migraine starting) and then after 5 minutes or so it is gone (but this happens multiple times a day)

3) Sharp needle like stabbing feeling in my eyes (not daily, maybe weekly)

4) Aching legs and a dull ache behind my knees...also I randomly developed an aching groin pain about a week ago

5) Minimal ringing noise in my ears (again, not daily)

6) Fatigue....and muscle fatigue...all my life :)

Also, would love to know if anyone can recommend a NS in the Windsor Ontario area or even in the Detroit area as I live on the border?!

Many thanks!

Kaydi

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Dear Kaydi,

Welcome, and I’m sorry about your recent diagnosis. It must be really scary to have the diagnosis, but the inability to get help. Though we do have more freedom here in the US, it’s been my experience that most of the neuros that I have seen here have little experience, so I spent many years on my own with this. Take heart in that there are many kind support groups online, especially Facebook. You’re not alone! I’ve met several people through Facebook from Canada who have had surgery, and are doing quite well! So, don’t lose faith.

Your symptoms sound more like increased intracranial pressure, which we often get diagnosed with, along with the Chiari. Look up Pseudotumor Cerebri or IIH, which frequently manifests in swollen optic nerves and eye pain. I’ve experienced these symptoms, so I know your suffering, and I’m sorry for that.

The lump isn’t something I’ve experienced. I have had a tender, sore throat for a very long time, but no painful knots. I’m always “preaching” traditional Chinese acupuncture, because it did wonders for me. These doctors really know the human anatomy, and may be able to help you while you’re waiting.

In any case, drink plenty of water, since it does help with IIH. If you need to talk feel free to find me on Facebook, or send me a message here.

-Danie

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Thank you both so much for your detailed responses! It is sooo very appreciated and helpful!

I have a lot of research to begin!!

Thanks again :)