"I think it's time to order an MRI. I've tried everything I can think of and it isn't helping. I'm afraid it might be a tumor."
I've had headaches all my life. I remember when I was 8, I had my first migraine. I was so grouchy and just wanted it dark and quiet, and for my mom to to cook anything because the smells made it worse. They blamed it on allergies and diagnosed me with "chronic sinus infections". Age 8 was when I first became familiar with medication. My anxiety and depression started in 2010, but the anxiety didn't become crippling until the migraines did as well, just a year later- my senior year of college. If I wasn't having panic attacks in my classes of 300 then I was in my bedroom hiding from the sun because I was sure my brain might explode. Let's just say, senior year wasn't my best.
Since 2011, Christian had been begging me to ask for brain scans but I continued to have faith in my doctors. From my pediatrician I was given an antidepressant for the anxiety, then a PRN for the migraines. Not working? Oh here is another.
Maybe it is TMJD, a family friend suggested, and she knew the man for the job. With a little treatment the migraines in the front slowely disappeared, but now an extreme pressure in the back. The doctor assured that it was normal and just a few more months and it should be better, then the next week, he packed up his office and moved to Texas. Well $7000 down the drain and more pain.
I moved on to an adult doctor. More med changes because you can't take this with that, and let's up this doseage, lower that. New symptoms? Here is another. Also I think you need to see a chiropractor. He didn't help? We'll see him 3 times a week. And here is another pill.
Now on 5 different medications and after a move, I got to a new doctor, a resident in her final year, and a D.O. Slowely tapering off unnecessary meds and trying some muscle manipulations, nothing had changed. That was until a major migraine flare. I had a manipulation on Thursday then spent the whole weekend in bed. Missed 4 whole days. I went in to see her again on Tuesday, where she tried a manipulation again but none of my muscles were reacting.
"I think it's time to order an MRI. I've tried everything I can think of and it isn't helping. I'm afraid it might be a tumor." I don't know that I will ever forget those words. That day I also got some type of cortisone shot, a muscle relaxer PRN, and 2 new daily prescriptions.
One of my new scripts made it so I could only take non-Asprin as a pain reliever, and anyone who knows pain knows non-Asprin has nothing on pain and totally sucks. The other new one made me feel like "Gravy!" The first few days on the new meds I was a little loopy and kept explaining to people that I felt like I was "a bowl full of gravy", or that "life slipped me a Jeffery" then I would stroke my fuzzy dog. It was all bad. Pretty much 24/7 vertigo and anytime I stood up I would black out.
That being said, the magic pill was a God send! We tapered down my doseage so I could function and not constantly act high. My pain went from a constant 5-8 to a consistent 3-5. Although I am still always in pain.
My MRI was on Christmas Eve's Eve. The results would take 24 hours and they would get them to my doctor. Well, what kind of doctor works on Christmas Eve? So, I waited all the way until Monday, the 29th, to hear. It was afternoon and I finally texted my mama, who works at the same clinic, "I take it I don't have an evil brain tumor?"
Instead of a funny text back, which is what I was expecting, my mama called, so I knew it was bad. She sounded like she had been crying. She asked if my doctor had called, I said no, and she responded, "Well your scan wasn't normal." Said only the way a mother can. She asked where my headaches are primarily, then explained as much as she knew and told me to look up "Arnold Chiari Malformation Type 1".
Not long after that I got a call from my doctor who told me the same stuff, because no one really knows much about it here. She reassured me it was nothing to worry about, and also informed me that the neurologist in town didn't think it was a malformation so we still didn't know.
I visited the Neurologist in Pocatello and got a cerebellum physical test. "Passed" with flying colors... Colors of red and black, because I was light headed the whole time and practically fell over during the balance tests. The doctor again said "No Chiari... But your scan does show that you have headaches."
I wanted to choke the MuthaTrucka right then and there. No flipping duh I have headaches! That's why I am here. So still no answers, but let's up your doseage of the medication you very first started with. Call me in 4 weeks see you in 3 months.
I think we need a second opinion.
So off to Salt Lake.
The U of U sent me more mail in the 2 months I had to wait than I had received in my whole life, called to check up on me before I was even their patient. It was magic.
**Sidenote: who would have thought I would ever say something grand about the U?**
At my appointment today, everything, starting with checking in, was a breeze. I didn't wait longer than 10 mins to see my doctor, and she stood right next to me when testing my balance. And I didn't fall, but only because she caught me.
Then a second doctor and he knew his stuff. Both agreed, Arnold Chiari Malformation Type 1, and the flow seems compromised. So, next visit, let's ts get a flow scan. Next a med change. Taper off 3 meds, then add 3 new ones. Then they warned, if you experience any side effects like... Oh, you fall often? Oh, you have numb hands? Wait, you get the hiccups? Often? Ummm... Yeah, let's order that flow scan now!
So that's where we are at. I have the hiccups all the dang time. Migraines and sometimes not being able to function mean nothing but dare you hiccup??
I will be returning to Salt Lake Friday to get some more ink, in my veins. It was funny how it turned out. Our One Year Anniversary is Saturday so we had both taken Thursday through Sunday off of work to go out to Salt Lake for the weekend. So we won't be doing super lovey things and instead I will be pretending to again be an astronaut in an MRI scan, but isn't it cool?
God puts us in the places we need to be and gives us the experiences and opportunities he know will shape us. We can choose how we will respond. My amazing hubby and I have decided that we will not let Chiari change much about our lives. Our work schedules will need tweeking, our diet has changed, and I can no longer participate in CrossFit (stupid rule) but none of this has to be bad.
I for one am excited for the new roads we will take, new foods I will try, and the new sleeping med I get to start in 4 weeks- could it be? A whole night of sleep? Without waking up? Without switching pillows?
You guys-- it's not a tumor-- and this is a good thing.
Also I got a doughnut!
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