#chiari 1

To put it extremely simply, part of my brain is protruding out of my skull, and into my neck.

Hi! My name is chiariokart, and two weeks ago I was diagnosed with Chiari 1 Malformation. CM1 is a congenital neurological condition, where part of the cerebellum extends through the base of the skull, and into the spinal canal.

We just found out about it, but I've had it since birth.

Common Brain Malformation Traced to Its Genetic Roots

So, this is ‘A True Story’

First comic I ever made, back in 2008. I used to carry these around like business cards, good for making friends. It kinda streamlined the very rehearsed origin story of my reasonably conspicuous scar. Since then, I’ve met so many people with similar stories, kids who’d been given this comic as a pep talk before surgery. Turns out that sharing your story can help in lovely ways.

So...

Had my cine MRI in October and met with my neurosurgeon on November 3rd. He saw no CSF blockage, which is really good - it means surgery isn’t immediate or urgent.

We talked about some conservative options to deal with the head pain, and he put me on Diamox. It’s supposed to help with the pressure in my head and the CSF flow, to eliminate the head pain. I have a follow-up appointment with him in three months, to see how the meds are working. If my head pain is gone, I’ll continue on Diamox and I won’t need surgery. If the meds aren’t working, then we can reevaluate and see if surgery is the better option.

DIamox is a diarrheic, so I’m gonna schedule to have blood work done in two weeks to make sure everything’s fine with my kidneys. I asked the doctor if there were any side effects, and he said Diamox could cause dizziness.

Fast forward to last night. I picked up the medicine from the pharmacy last night. It’s one pill twice a day, so I took the first one last night when I got home. I was watching the election coverage and drinking a Cherry Coke, and noticed that the Cherry Coke tasted AWFUL. It was like they forgot to put the syrup in it, and turned the seltzer up to 100. I thought it was just a bad bottle and left it alone.

This morning I went out to get breakfast and got myself a Monster. Starting drinking it and it tasted the same as the Cherry Coke. 

I started to freak myself out, thinking I’ve lost my sense of taste and that’s a sign of COVID and I can’t get sick. And then I did some thinking, and then I did some googling, and I found the issue.

Diamox is heavily acidic, and fucks with your taste buds. Apparently people get the “champagne blues” while on Diamox. The acidity in carbonated beverages are heightened due to the medication, and it makes carbonated beverages taste TERRIBLE.

So here I am. Someone that literally drinks a Monster every morning, that LIVES off of carbonated beverages. And my medication - that could save me from surgery, save me from the severe head pain and headaches and could be my cure all - has taken it from me.

It went basically like I thought it would. He confirmed the Chiari 1 diagnosis with the Chiari symptoms. I was able to see the MRI film from January - and took some pictures, so I have those now for reference.

He ordered the cine MRI to determine if I have a syrinx. If I do, then he recommends surgery. if I don’t, then we can discuss what other options are available to me to manage my symptoms. I have a follow-up appointment with him in early November, so I just need to schedule the MRI and then we can review the results in November.

I’m conflicted because I am a bit scared about the surgery - not the surgery itself, necessarily, but the cost of it, and the two month recovery time, and being out of work for two months. The financial strain is something that’s got me pretty worried.

But I also don’t want this to be affecting my life the way that it is. I’m scared about when the symptoms become the worst - when the head pain is at a 10, when it makes it so hard to complete daily activities.

My last neruo appointment ended with a new attempt at treating my headaches, preventative this time. In addition to my 3 per week allowance of painkillers I now take 2ml of magnesium and 100 mg of vitamin B2 twice daily. These are to replenish my body of those vitamins and minerals that have been depleted by years of over taking over the counter pain medications. Part of one of my headaches we believe is stemmed from the lack of magnesium. 

It’s been about 2 months on these suppliments. They worked great at first,  but like most other options that we have tried, I quickly found the effects lessening. I’m back to taking meds 3x a week, sometimes more, in order to be ablw to function. 

Overall, my headaches have been less regular, but worse when they hit. I’ve started to get random short attacks as well where I’ll be fine then get intense pain in my neck and head (Chiari based headaches). 

Since this is a new blog, I though I’d do a little introduction of myself, for those of you that may start following me. 

I’ve always been an achy person, pains through out my body, my joints slipping all over the place, and basically just feeling like a hot mess. But doctors could never find one thing that was wrong with me, instead I have about a billion and one different diagnosis. All things that “Shouldn’t effect my way of life” But have very drastically. 

Finally, at age 25 (Just a little over two months ago) I went to the hospital for a migraine that lasted about 5 days. Upon a CT scan, the doctor told me that He thinks I have whats called Chiari Malformation. I went then, a week later, to another hospital, and another doctor, to get a second opinion. He agree’d. 

I have my first appointment with a neurologist on the 20th of May.

Since the diagnosis, and that first slew of headaches, the pain hasn’t stopped. Dizziness has taken over to the point that I now use a cane to walk most days just to feel stable. My face, arms, legs, and torso keep going numb off and on. 

They have my on a mixture of medication, but it is only allowing me to barley function, enough to get through my 4 hour school days and then crash by the time I get home.  I had to quit my job, because I couldn’t walk and lean over for 8 hour shifts anymore (I was a merchandise floor rep), and now I am struggling to find a way to make money to support myself and my daughter.