Chiari Online Support Group

Hello my introduction

Hello everyone!! I am an almost 40 year old, wife of 14 years, mom of two teens, working recovery room nurse and I was officially diagnosed with Chiari Malformation Type I in Dec 2017. I had been dealing with headaches when bending over, coughing and sneezing. Very short intense type of headaches that happened often. I went to my GP and he said it was a pinched nerve in my neck and high blood pressure. So, being a runner and exercise loving gal I went to my chiropractor to have my neck adjusted. Ugh… This went on for over a year…not getting any better so I insisted that my GP order an MRI, because now I have numbness and tingling in my hands and now vertigo. This of course makes it hard to run, workout yes work. My MRI showed a 20mm Chiari I, which I understand is severe. Got in touch with the best NS I could find in the Houston area. Dr. D. Kim was wonderful and got me into surgery as soon as he could possibly fit me in. I had my decompression surgery on Feb 22, 2018. Doing as well as expected and looking to speak with others out there.

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I have been recently diagnosed with a 13 mm drop but the doctor does not seem concerned…but I have the dull ear thing…drop things and what feels like a band around my head. I don’t want surgery bit reading some of the posts it seems the only option.

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Would you have classified any of your symptoms as severe before your surgery? I only recently learned of my 15mm, and it does explain several things (the straining/cough/bending over headaches, fatigue, constant tinnitus, hearing loss/fullness in left ear, occasional tingling in fingers, occasional neck “pressure” with what I assume are palpitations?), but I wouldn’t call any of them severe. I’ve learned how to deal with them, and other than stopping me from yelling too loudly at sporting events, I wouldn’t say they affect my life. First NS I saw wanted to do surgery but was focused only on the size. I have an appointment for a cine MRI and dr visit at the Mayfield Clinic at the end of the month, so I’m wondering how likely it is they’ll tell me surgery isn’t really necessary.

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Rooney I’m sorry to hear of your diagnosis. According to my NS anyone who is symptomatic should have an evaluation for surgery. There is no cure only symptom relief. I tried over the counter meds like ibuprofen and even gabapentin. I wish you the best of luck.

Smithl yes my symptoms before surgery were severe in my opinion. Headaches daily, vertigo several times a week which would cause nausea. I couldn’t workout like I wanted to because I felt to poorly. According to my NS the size matters yes but even if its small and your symptomatic you should look into surgery for some relief. I wish you luck on your cine MRI. Surgery was my only way to get some symptom relief. So far post op day 20 and all my symptoms seem to be gone.

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All the same symptoms and now I have read up on it it all fits into place. As you say I can cope. Thankfully I have no headaches just discomfort and I did a lot of yoga last year prior to diagnosis which unfortunately seems to have done something to bring it all to the fore. I have decided to get a second opinion as I am an active person and even cleaning the house has become exhausting. Which is totally frustrating I am looking into a procedure in Barcelona which is much less invasive but I don’t know if they do it here in Ireland. Thank you for responding as it was a bit of a shock to find out there is something there causing the problems and it is not a quick fix. Had never heard of it prior to this.