A Leaky Brain Sing Along

 Feel free to sing along....

Is this the real life

Is this just fantasy

Caught in a landslide

No escape from reality

This little ditty sums up my day pretty well I'd say.

For those playing along, you'll remember that last Wednesday I was at the neurologist. Thursday I spent my Valentine's evening getting my brain scanned with an MRA and an MRV. Then I began waiting.

Then yesterday happened. Monday I missed a call from my local doctor. I had no idea why since I am pretty much done there regarding this medical situation. So I left my phone volume on while at work yesterday, just in case. Sure enough I received another call from them. And this is where it all goes haywire - and sadly I wasn't even surprised. 

I was told that my scan results went to them instead of the neurologist. Supposedly the local doctor sent them up to Springfield, and they would call again just to make sure they got up there. They wanted to let me know that the results did show something, so they would make sure I got an appointment soon.

Do you think any of that happened? It appears not.

Today Shawn called Springfield. They hadn't received any results, even though they were the ones that ordered the scans. As it turns out, the local doctor didn't even get THE scans, just a little paper saying what the results looked like. The neurology people said to ignore what I was told. THEY will read the results and look at the scans themselves to determine any findings. So the neurology office took charge and set out to track down the scans so the doctors could look at them and make decisions.

I haven't parted with my phone all day, waiting for any calls. Shortly after getting home from work it rang. It was the neurology clinic. And this is when it all gets fuzzy. I handled the phone call. I wrote down some words. I tried to process everything.

Shawn woke up, calmed me down, and took over. He called back to get some clarification and find out what happens from here. This is where we are now:

It is very strongly believed that I DO have a CSF leak. I have been referred to OHSU as an URGENT case. They assured us I have been sent to THE very best doctor in the state for what I have going on.

What happens next? I don't know. I'm waiting for OHSU to call, but tomorrow morning we are going to call anyway to make sure they got the referral. 

And they assured us I am NOT dying. So there's that.

And Now We Wait....

It was URGENT.

Rush, rush, rush.

Finish with the neurologist. Immediately get blood work done. Collect samples from my leaking nose. Pick up the new prescription. Try to rest.

The next day: power through work. Try to watch most of Bohemian Rhapsody before getting picked up. Have the most enjoyable drive north to Eugene. (*Seriously, Sheila is the only person to not scare me with their driving in recent times!!) Arrive early. Check in. Get tests done. And wait.

That's where we are now. Waiting.

As I said, I had a most enjoyable ride up to Eugene with Sheila as my driver. Nobody lets me drive anymore, so I'm pretty much a pain in everyone's ass right now. But Sheila was fabulous as my chauffer and medical office buddy! We arrived to Oregon Imagine quite early, which worked to our benefit as I was taken back early and heading home early!

I was nervous about being cold and my butt hanging out. I brought knee socks with me, but they gave me the hospital gripper bottom socks to wear - my little souvenir. And my medical gown wasn't a gown. Phew! I had scrubs and they were quite comfy considering I was swimming in them.

I didn't even have time to fill out some pre-scan paperwork, because they were all set to get me going. A nice girl came to get me from the locker room and we filled out the form together. I am so boring, my answers are pretty much No to every single thing. The only yes we marked was that I have one tattoo.

Then the gross part. She stuck the IV in me. I'm shuddering just thinking about it. I don't mind needles. I don't mind blood. I DO mind having things injected into my veins. I can't even look at it. I won't move my arm. I'm completely gimpy for the rest of the day with whatever arm gets something lodged into it.

So I was all ready to be loaded up with dye, and I made my musical selection. My what? I got to wear noise cancelling headphones with my choice of music. I opted for the "spa" collection! Hey, I might be in a loud machine, but this is one time this mom gets to relax under a warm blanket with her legs propped up and nobody climbing on her or announcing they need to go potty. This was my spa day!

This whole place felt so superior to the MRI experience I had in the Mercy Emergency Room. It was all sparkling clean. It was more comfortable. The headphones worked much better than the earplugs they stuck in my ear on the regular MRI. Overall it was a much more pleasant experience. Everyone complains about MRIs and how their experience was the worst or more traumatic than everyone else (seriously, why does everyone become a know it all one-upper when it comes to medical things??), but I really don't mind them. Spa day!!

Obviously I did nothing but lay there. I watched the sun go down on the reflective device on my head. I closed my eyes and enjoyed the sound of the ocean with the music - imagining I was on a beach in Hawaii watching a sunset all by myself. Time flew by!

Then I was sucked out so they could put the dye in. Yeah, that dude wasn't as gentle. I did NOT enjoy this part!! And he didn't fix my blanket after he left. For shame! I quickly fixed it myself before I was sucked back into the machine. My nose kept having a tickle, so that was mildly annoying. Obviously I'm not gonna shove my hand up to my face when they are scanning my brain!

Before I knew it I was all done. The MRA and MRV were complete and I was heading back to the locker room. I changed back to my attire and we were on the road before it was even dark out. Score!

And now I wait.

In the meantime I have this new prescription to take. I had to take SIX pills with breakfast this morning. The pharmacist insisted it be a BIG, full breakfast. I did the best I could, but I came nowhere close to finishing anything but my glass of milk. I was ramped up on that drug for a bit, but then felt a crash happening. This only goes on for 5 days, minimizing the dosage each day. The drug was awful tasting and it didn't even actually touch my mouth. I will be very happy when it is done!

And that's that. A whole lot of NOTHING! Hopefully we hear some results before my next scheduled appointment since that is well over a month away. I just want to be normal again. I want to run. I want to do a jumping jack. I want to drive to work like a big girl!

My Super Hero Conversion

My secret is out. I'm not really having any medical issues. I'm just in the process of becoming the next to join the team of Avengers! My super hero name is yet to be determined.

But really, here's the update. I have to do this fast because tomorrow there will be even more!

This started on December 3, 2018. Intense, stabbing pain. I can lean over to put on shoes and feel like I'm having intense brain freeze. I can hardly sit up right. As it is, I only function because of the sweet, sweet calming effects of fancy pain killers. After two visits to Urgent Care, a day in the ER, a week of not being allowed to go to work, and then 3 more doctor visits, I was finally seen at Oregon Neurology Associates. We accomplished more in this first visit than in all of the other combined!

After going over all of the issues I've been experiencing I had a relatively simple overall check up. Reflexes were fast - like I do sports. Hallelujah - I can't really run right now, but my body disagrees! My eyes checked out great. Balance was pretty alright - ha!

To just try and see if it helps I was able to lay down for an hour with this crazy contraption stuck to my head. No joke, I had a backing with a magnet stuck on my forehead, then this thing (for lack of a better word) attached to that with the other end of the magnet. And then she turned it on.

Holy oh my gosh! That hour was one of the strangest, most intense hours of my life - aside from the whole giving birth thing I did 3 years ago. This device helps with migraines, and just in case I'm just suffering from migraines we did this to see if it would help. It hurt sooooooo bad, but I refrained from ripping it off, although she said I could if I felt I needed to. At times it felt like my brain was being split in two and ripped apart from itself. Nonstop vibration. My face was basically number. It was bizarre.  I could tough my forehead and my finger could feel it, my face couldn't. I was pretty happy when that hour ended.

And guess what still hurts!  Yeah, my head.

During that hour the PA came in and checked on me a few times. It was during one of her times away that we realized a symptom we forgot to tell her about.  My leaking nose! She was so excited and her face lit up when I told her about it. This could be cerebral fluid leaking from my nose. If we can collect it and have it tested then I could possibly avoid some pretty invasive testing to see if I have a CSF leak. 

Migraines have been ruled out - which isn't a surprise because I've known all along it's not a migraine or headache at all. Thoughts at this point are perhaps a brain aneurysm or a CSF leak.

So what now?

Well I've already gone and had some blood taken. Tonight I will try to collect samples from my leaking nose. I can't even figure out how that will work or how I will get enough, but I have my sterile supplies and I'm preparing to just lean over and let nature work. Also I have a very strong steroid prescription to take for 5 days. That came with a warning that I will be very emotional and for us all to just be prepared and know it is the drugs and it will end in 5 days. Great.

On the way home from the blood sucking stop my phone rang. It was from Eugene. Normally I ignore any call if it isn't in my contacts but I answered. Now I'm scheduled for an MRA and an MRV tomorrow afternoon! I'm so bummed I will have to miss hula lessons, but I am trusting my mom will get photos and videos for me to obsess over until I can go to next week's class.

I feel like I'm probably forgetting stuff. This was a long, intense morning. But it was full of really nice people that actually listened to me and didn't look at me like I'm crazy or just imagining stuff. And thankfully it was never suspected I was "just experiencing Meniere's Disease". Hallelujah!!

I guess I'll see you all tomorrow with reports on how the next step went. Oh yeah -- I got marked as URGENT status, hence why I am being seen again so soon. I don't have a follow up with a neurologist until the end of March, but I'm on the list if there is an unexpected opening. At least I'm finally moving toward diagnosis and treatment!!

A Little Bit of This and That

Hi! How's everybody doing? Enjoying this late round of winter weather? Did you sleep through the Super Bowl, too? Did you know that in 2004 I went to a taping of Hard Rock Live for MTV starring Maroon 5? It was awesome. I never saw myself on TV. I recall getting brain freeze at the door when I had to chug my margarita from Margaritaville before entering Hard Rock Live.

And brain freeze leads me to the latest with my poor little ol' brain.

Sometimes when I move too fast I feel like the pain can best be described as an incredibly intense bout of brain freeze. It SUCKS!! I had a doctor appointment yesterday here in town just to check on how I'm doing while I wait for next week's neurology appointment. A CSF leak is the  suspected thing happening in my head, but we are going to wait for the specialists to check me out and see what they think. In the mean time I'm hooked up with my happy, jolly pain pills.

Pain pills, and the pain I have when I'm not on them, mean I don't drive. I can think of two times I've driven a very short distance this year... maybe even since before Christmas. This means I have to have people drive me around to get whatever I may need or want, like deodorant or arts and crafts supplies.

To kill time while I wait I am being crafty. I have some art projects I'm working on for a future adventure. If you need me you can find me either editing on a laptop, printing things, or figuring out how to use my new Cricut! Don't worry, I won't be setting up a booth at the Christmas fair. I might cover the motor home with home made decorations though. And have I thought of how I could make Lady Storm Squad some finish line running shirts? Yes, yes I have.

Speaking of Lady Storm Squad, I am still busy fundraising and am over 60% of the way to my individual goal of $1,000! We have to raise $12,000 as a team, so if I hit my goal I will of course keep collecting cans to help out the rest of the team.

And I may as well stay busy fundraising because I am currently NOT allowed to run, per doctor's orders. I have been trying on the treadmill and get in 2 miles before my head is screaming at me to stop. Don't worry Glory Daze and Lady Storm Squad... I WILL be running with you this year no matter what!!

If you'd like to help me hit $1,000 click this link right here!

Oh, and my tiny little baby... yeah, she turns THREE tomorrow! WHAT?!? She not only turns 3, she starts Hula lessons! Aloha!