If you have been following me for a while (or month), you will recall the post about my weird Tuesday in April when I went to the ER with a vision/right side numbness/speech issue thing that looked a little like a stroke. I left that day with a diagnosis of complex migraines and a suggestion to have a follow up MRI to confirm nothing strange was going on in my brain box. The ladies in the business office at work ended up fighting with my insurance company to get approved for the MRI due to the ER visit being coded as "headache, unspecified." I did some more digging and diagnosed myself with hemiplegic migraines because that matched my symptoms the best. However, I still wanted the MRI because I wanted confirmation that nothing strange was going on. I honestly didn't expect anything to come back because migraines don't leave any kind of signature in the brain. I was slightly concerned there might be a tumor (due to the speech/memory issue) but I figured that would have shown up on the CT scan. Anyway, the MRI was approved and we did that on 5/7, almost a month after the initial "complex migraine" episode, a week after I started meds for it, and a week into my upper respiratory infection side effect of said meds. The MRI came back with everything normal in all parts of the brain EXCEPT in my cerebellum where I have Chiari 1 malformation. This means that my brain is too big for my skull and is pushing out thru the hole where the skull and spine meet. See pic.
Neat picture of it versus...
MRI imaging.
Most likely I'm going to have to have a procedure to remove part of my skull to make room for my brain, but I'll probably wait on that until the symptoms of this become worse.
After the initial panic, delving into the rabbit hole of Dr Google, talking to people at work, letting my family know, and waiting on the neurology consult, I feel like I've processed everything and can now share it all with you, dear readers. First off, this has nothing to do with the migraine. The headaches associated with this condition are occipital headaches located at the back of the head where the neck meets the skull. My headaches are usually sinus ones (due to the corn allergy or other various allergies) or start behind the eyes or at the temples. Second, I've had this malformation ever since I was in utero. It's not a new thing caused by grad school, too much reading, or anything else. It is the cause of my weird dizzy spells I've had throughout my life. I just started talking to my doc about those, and lo and behold, BOOM! Here's the cause. "WAIT!" I hear you say. "If you've had this your whole life, how are you only learning about it now?" That's the thing, it's only detectable thru MRI scans and this was the first time I've had an MRI. I probably had a CT scan when I had my concussion, and that's been the only other brain issue i've had. It also causes numbness and tingling, which I've always assumed was poor circulation, so there. All my symptoms of this have been pretty mild, nothing worth troubling medical professionals over. The symptoms usually have resolved themselves within a few seconds, so I decided on a much more fanciful if less likely cause of my issue. (It involved converging realities and my lack of ability to SEE them but ability to SENSE them, hence the reason I only got dizzy. As I said, fanciful.)
Now that I need to talk to a neurologist, I get to experience the horror that is the medical field when needing a specialist. At my primary care doc they asked who I'd like to see. I picked a group based on their proximity to me and they said they would fax the referral and the group would call. After a week I checked the group's website. Yeah, they are permanently closed. Called the clinic, left a message, they called back when I was gone, next week we tried again. Googled another doc, sent the referral, called the doc, nope. Google had it wrong, they are not a neurologist, just a pain doc. Called the clinic again, said enough, just send it wherever you send everyone. They called back, said what about these people in Fort Worth. I said ok. Then they said you don't even need the referral, call them to set up the appt tomorrow, but I'll still fax this over. I called to set up the appt, the person in Ft Worth said they DO need the referral and usually it takes 72 hrs after it's sent to get put in their system, but they will call me once they have it and set up the appt. Grr, arrrrrgh. Anyway, it was less than 72 hours, and my appointment is Aug 2. That was the soonest they can get me in. Huzzah.
The funny thing about this, if you tell someone that your brain is too big for your skull their initial reaction is generally to scoff in a "yeah right, smartypants" kind of way. Then when you go "no, for real" its a disbelieving "THATS A THING!?!?" Now that I've processed it all, it's kinda funny. Since it's not something that needs immediate attention, I can relax a bit. The prospect of surgery scares the bejeezus out of me. Hopefully the neurologist can help with that. The jokes flow easy. Hehe... i always knew I was a smartypants. Turns out my darn brain is too big for its box! 🤣 Anyway, enough with the weird brain stuff.
Married life is also an adjustment. Older co-workers insist on calling me Mrs V and a couple have gone the whole Mrs J V which is SO strange. I mean, I'm still me. It really annoys some of the older set that I decided to hyphenate my last name. Kinda funny. Learning to live with a hubby is going to be a helluva ride. One with such a different work schedule is even more so. My poor hubby has even been a bit sick all week! I think some things got stirred up at his old place and his body took a while to expel them again. Poor man.
I tried really hard not to have any preconceived ideas of what married life would be like because I knew the reality wouldn't be like what I envisioned. That being said, it's even more different than my limited notions. Not bad, please don't think that. Just, different, yet the same. Every time I talk to someone about this I'm told that I just had 2 major life events (moving and getting married) so life isn't going to feel "normal" for quite some time. Add on the medical stuff, new meds, adjusting to side effects, and regular work life and its all just... strange. I don't have a road map to cope with all this. We don't have a month of a honeymoon to adjust, all the church stuff is pre-wedding and then it's "good luck, kiddos!" I think I'm holding it together fairly well but then something happens and I either snap or im a weepy mess. Don't say the honeymoon is over because it isn't, it's just the added stress of my medical stuff is terrifying. Not only have I had 2 major life events, I'm facing my 2 biggest fears: the possibility of losing some brain functions and surgery. Quite frankly I'm crediting my Short-Arnett stubbornness for the fact that I'm able to function on any level at all. I'd love to just curl up in the fetal position and let the world turn around me while I receive some TLC, but that's not exactly realistic, is it? So instead today after Mass I'm going to a new coffee shop with my journal. I'm going to find a quiet corner and write out all my fears, cares, and worries, and hopefully by the end of my written therapy session I'll be better equipped to handle things. It's been a year of "life events" in a month, friends, and I feel a bit beaten down by them.
Anyway, this entry ended up being slightly more heavy than anticipated. Suffice to say that we will get thru the growing pains of living together, the medical stuff will get figured out (the brain stuff is at the back, so it's not like my personality will change or anything), and I'll chart my own damn map! Lol. Much love, thanks for sticking with me to the end of the post. Stay tuned for the review of the new coffee shop, and please pray for us. MUAH! 😘
We did it!
SHOTS!
start of the crawl
west coast and east coast family
