MY JOURNEY WITH ARNOLD CHIARI 1 MALFORMATION

 

In high school I ran Cross Country and Track. My senior year (2002) I just couldn't keep up. It was all I could do to finish a race and many times I would pass out. I really struggled with these new limitations and matters where only made worse when doctors couldn't find any explanation for my pain. I started having debilitating headaches that caused extreme nausea. I knew something was wrong, other people had headaches and it didn't seem to really interfere with their daily life. Doctors would give me pain meds and send me home. Several Doctors grew frustrated with my constant complaints told me it was all in my head and. The pain and headaches continued and I learned to just keep it to myself thinking maybe it is in my head.
 
Fast forward several years and I was married with my first child. After delivery of my son my headaches were more frequent and I had a painful numbness in my right arm and my depth perception couldn't be trusted at all. I fell frequently and started to consider myself extremely clumsy. I will skip the details and just say that Doctors (including the Neurologist I started seeing) were not helpful. The only thing that could be agreed on was that I did not have MS. That was great news but not really helpful.
 
Finally in 2009 I had a new Neurologist and after a new MRI I got a diagnosis! The Dr. said "Oh! That's interesting"... He described to me what it was and pretty much said this is what you have, lets watch it and see how you feel, take these and these and these for pain and come back in 3 months. I left his office feeling hopeful and  justified. Those next 3 months were lousy!!! The meds made me feel exhausted, nauseous, and dazed but did absolutely nothing for the pain. At my next doctors appointment I explained to the doctor I hated the medicine and it wasn't helping. He prescribed different meds and sent me home again. Leaving this appointment I realized that having the diagnosis felt good but didn't actually help and the medicine was just suppose to make me comfortable because there is no cure for Chiari 1 Malformation.

Again the pain meds had nothing but undesirable side effects. I stopped taking the meds and didn't go back to the Neurologist. All of my doctors had made me feel insignificant and crazy.

3 and a half years later I was in a new state and at an appointment with my Primary Care Dr. she put in a referral to a Neurologist. This Neurologist was different than all the others. He was kind, really listened to me, was comforting and made me feel like he was genuinely interested in my care. He requested new MRI's and I was excited and hopeful to visit him again. I never receive a phone call or letter about the MRI appointment. I called my insurance company and checked the request status, it was good so I called the hospital to schedule it myself. The soonest they could get me in was 10 weeks. Annoyed I made the appointment and waited and waited and waited. The I got a phone call and was told they needed to reschedule and there was absolutely nothing they could do about it. The new appointment was 7 weeks later than the last!! At that point I had to call and postpone my follow up appointment with the neurologist because I still hadn't had the MRI yet. The time for the MRI came and I missed the appointment. I was so mad at myself and frustrated with the situation that I just gave up on it.

I waited another year to see the neurologist. It happened by chance. I went to my Primary Care Doctor for what I thought was just a nasty sinus infection. After checking me out she said I had a sinus infection but also wanted to know what my Neurologist thought. I didn't understand she just said I had a sinus infection, what was he going to do about it. She put through the referral to see the neurologist again and just said it had been too long since I saw him last.

You can only imagine my surprise when I got a phone call the next day and had an appointment scheduled for the following day. I went in, had a brief conversation and he looked in my ears. I still wasn't sure what it mattered but it seemed like it did. Either way I left the office with new MRI and Cine requests. The very next day I got a phone call and had an MRI scheduled for 2 days later!!!
The MRI was on a Friday and by Tuesday (Monday was a holiday) afternoon I had a follow appointment with the neurologist to read the MRI report.

It wasn't good. He said things like this is serious Savanna, See your C2 here and how it leans back on the brain stem, this is serious Savanna, doesn't this look sunken more than before, Surgery is really needed,  look at your CSF flow, do you see that, There is no CSF flow behind your brain, this isn't normal, you have a spontaneous CSF leak, this is serious, it's coming out your ears, You have to see a Neurosurgeon, SERIOUS Serious serious.
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This is my journey. In the beginning all the doctors said it was all in my head and they were MOSTLY right. This is the story of my brain falling out of my head. It's been hard but made me stronger too. I have Chiari but Chiari doesn't have me, it's just a bully I beat up every morning when I get up!