The first time?

[epsion22]

So I'm curious of your stories of when you first started to notice things were a bit off, maybe a headache that wouldnt go away, or just the tingling in the arm or hands?

As for me, its started with me in the bathroom... I was washing my hands and my co-worker from a few desks down came to wash his and as I looked at him, im like..wtf is your name (to myself). I have had beers with him on many occasions so it was a bit scary not to remember. After this I went to my primary care and asked for an MRI and this is where they discovered the chiari. ( I thought I had a tumor or parasites in the brain...too much discovery channel i guess)


A few days later, I started to get more pronounced brain fog, weak arms and hands and stiff neck. My symptoms come and go but I mostly feel like a slight stiffness or pressure on the back of my head on most days... I find that running a few miles helps for some reason.

[Autumn55]

I was just reading some of you talking about having symptoms as a child.  It must have been so difficult.  Nobody takes you seriously as a child :(  I remember being 6 and complaining to my teacher that I had a headache and she just laughed at me and said *Children don't get headaches*  Great teacher, haha

The first time I had symptoms that were shocking enough for me to get help was after a run.  I finished my run and continued to run up the stairs to my apartment and as soon as I paused to open my door, I peed and then the numbness in my back started.  I had a hard fall down the stairs about a month before that and continued to run 6 days a week, pushing hard, so I'm sure I brought some of the pain on myself by pushing too hard.  

[Marybz]

I had blurred vision and episodes of nausea over the past several years, which I just thought was age related or too much caffeine.  But in March, I woke up in the night with severe vertigo and numbness in my hands.  The next day I was so dizzy, and fatigued.  I also had a neck ache and pain across my shoulder blades over the previous weeks.  I think I was lifting weights for exercise to get into shape for the summer, which made all my symptoms explode all at once.  An MRI revealed my Chiari Malformation and spinal stenosis, and bulging discs.  My NS is treating me conservatively with PT.  I found that putting ice on my neck and taking NSAIDS and not lifting weights and doing high impact exercise has controlled my symptoms.  I try to stay active. Its been difficult for me, to have to modify my life, but I don't have a choice.  Its so helpful to have this support group also, as other people just don't understand how I can look so good, but feel so bad all the time.  In the past few months, I've learned so much from this forum.  God Bless.

[amisoup]

I have always been one with headaches... from about third grade on. About 3 months ago, I had one headache that was bad. And I mean - I thought I wouldn't live through the night bad. I had to go in for a shot at my GP's and she let me know I should see a neurologist. I had an MRI done, and it was clearly Chiari. It was the first time I had heard of it, so I was prepared with research and questions for my follow up. Turns out the neurologist had NO IDEA what Chiari was and said "Chiari doesn't cause headaches. We need to do more testing". That was all I needed to know! I go to Mayo Clinic tomorrow for my first appointment with a neuro there. I have a NS appointment in July but I don't think I can wait that long!

[epsion22]

I just realize that mine started a few days after an intense game of tennis (after a long winter break)... I wonder if this is what aggravated my situation... I guess no more tennis for me.. so sad

[lydelia]

I just noticed mine in this past year. I had been taking Gracie Jiu-jitsu and noticed that after a particularly rough class, that I could not get my body to respond to me like it should. Not, my muscles are tired type of slowness, but like I would send the signal to move my legs and there would be a noticable delay in their response. Then when I got home that night, I experienced the same thing with typing on the computer. I would send the signal for my hands to type and my fingers would be sluggish to respond. I shrugged it off to fatigue, but when it kept happening, and started to affect my jiu-jitsu training, I had it checked out, thinking that I might have MS, because I have a family hx of it, and found that I have Chiari instead.

It seems like now that I know about it, it is getting worse. lol. Over the last weekend, and still today, I am having a lot of dizziness and upper gastro-intestinal distress. *****.

[jenshead]

Mine was very sudden at age 21.  No traumatic event...I was sitting at my desk at work when it started.  I went from being pretty healthy and active to not being able to get out of bed due to dizziness.  It has just progressed from there, with some relief from medication (I can get out of bed now!).

[candy0722]

Hi everyone,
My events started when I was in my early twenties. I had awful headaches, stiff neck, blurred vision, nausea to name a few. After weeks of a ongoing headache, I went to the emergency room and was diagnosed with a psuedo-tumor cerebri. Several years went by with bad episodes coming and going away. I have had to many spinal taps to even remember. After so many, my neurosurgeon told me a shunt was required. I was terrified. The surgery was not as bad as I thought. I had a fear of a big knot in my head and losing my hair.I lost my vision for a couple of months due to increased pressure on the optic nerves in my eyes. The shunt was not put in my head. I have a paratuneal shunt. Years went by before I was diagnosed with a chiari. I was 42yrs old. I was experiencing pain in both arms, back pain and neck pain. I was told by pain management dr. and she referred me to my current neurosurgeon.

[selmaS]

  Hi, I was quite young....I would feel strange to swing on a swing, yell, jump or just participate in typical activities....I hated gym class on the whole as a result. I had drop attacks in 6th grade, had no idea then what it was, and another one a few yrs later...again no idea....HA's were a constant. In 2nd grade my parents had my tonsils and adenoids removed as I was a mouth breather....I still am.

In High school, I was sent to a shrink for the HA's...it did not resolve a thing....I was finally dx'd at age 48 after a drop attack resulted in injuries that required surgery....my knee  surgeon sent me to a rheumatoid Dr for lupus testing and they did a MRI.

Some of us do not go as long not knowing what is wrong, while many of us go our whole lives wondering.....and to read things like chiari is asymptomatic and  it usually does not show sings until ages 30 or 40 is BS!

There r too many kids with this condition and I for 1 know all the issues I had as a kid was the chiari eve the so called growing pains I had were the TC.

I always had a very limited range of motion with my neck, which post op is sooooo much more than I ever had : )

  Holding my DD to feed her as an infant was torture, the pain in my upper back and shoulder area....my balance issues......needing a hat when in the sun or I would get an instant HA.....I could go on.

  

[itsy1]

I was diagnosed at 18.  I thought I was just a clumsy, distractible jr college student.  Sure my neck popped, but my best friend could pop her knee in and out.  Popping was nothing.

Then I was limbering up for kirate class one fall afternoon.  Just rolling my neck around.  That was the last day I've ever had feeling in my right arm.

Being newly escaped from my parents house (they are great, I was just 19) I kinda hoped that whatever it was that had happens would magically unhappen.  6mos later I began my Chiari journey when I saw the doc on summer break.