Things Got REAL! Real Deep In my Nose!

What. A. Day.

I've spent A LOT of time at OHSU (thanks to creating a baby there), but this one day was definitely one of the longest. Long but VERY productive!

March 1 had me going up to meet with Dr. Dogan, head of Neurosurgery at OHSU. I had no idea what was in store for me. Prior to this I had an MRA and MRV done, but no idea what the results showed. Upon arrival at Neurosurgery I had the standard type of new patient forms to fill out. On the top of the form was to list 3 things I want to learn at this appointment. That took me a while to fill out.

1. What did the MRA & MRV reveal?
2. Where do we go from here in terms of fixing me?
3. Can I run??    (Priorities, people!!) (Ragnar and Hood to Coast don't just happen!)

I arrived early and was taken back a little early as well, seeing my doctor almost exactly at the time I was scheduled. Impressive!

First I was with a PA going over the standard things. Plus she answered my 3 questions.

1. A thickening of the dura. To keep it simple, this points to a cerebrospinal fluid leak. In my simple explanation terms - the protective fluid around my brain is leaking. This causes pain and could lead to serious things like meningitis if it repaired.

   

   I've marked in red the thick white part. That is supposed to be a thin line.

2. Probably a nuclear medicine tracker test to follow the flow and find where the leak is happening. She said leaks are typically in the spine or head - and giving my dripping nose that points to my head.
3. I CANNOT run right now. No strenuous activity. I can, however, walk. 

That me! and my brain!

My first thought when I saw my brain.

Soon Dr. Dogan was in and boy did I like him right away. Very professional, but not scary. He smelled really good! Although he is Turkish and has an accent it didn't phase me at all. I felt like I was all smiles with him. He was this sign of relief I was needing. He confirmed all the same suspicions regarding a CSF leak. He also said I'd be able to fly to Las Vegas next month and I will be fixed before Hood to Coast! Thank You Doctor Dogan!!!

Then this is when he REALLY won major points. He wanted to partner with the ENT team at OHSU because if it is in fact a CSF rhinorrhea leak it might be a surgery ENT can do and be less invasive. Sure he could have just sent me on my way and had me return another day, but he's awesome and did NOT do that. He personally took out his phone and called the doctor himself to discuss my case and get me in the same exact day!! THIS is why I go to OHSU!!

So back to the elevators we went, down to the 5th floor for Dr. Geltzieler. This was a longer wait since I wasn't actually on the schedule. But I totally didn't mind. Better than making more 3 hour drives and extending this even longer. We were called back and I barely sat down before I was having a spray up my nose to get me all numb. OMG it tasted AWFUL!!! Soon everything was numb and the taste was gone. And then it happened....

An endoscopy right up my nose. The first rod was too thick (heh-heh that's what she said) so he switched to a smaller one. They were both uncomfortable. For the purposes of documentation and the blog I insisted Shawn get photos and video for me. You're welcome!

Soon thereafter my new doctor was in and he is the best! We all, Katura included, really like him. I know I'm in the right place to get fixed!! He did another endoscopy so he could look for himself at what is going on and see if he could see the leak. He couldn't find 100% definitive proof, so he sent me downstairs for a CT scan. 

It took longer to walk to the actual room for the scan than the scan itself. Easy peasy! When that was done I recovered my support team of Shawn and Katura in the cafe downstairs buying a cookie. *At this point we hadn't really eaten or drank anything all day. That makes for a hangry toddler!

Back up to ENT we went to hear the results of the scan. They didn't clearly show what he was hoping, so I was presented with 3 options. We talked a lot about them. Pros and cons. (A faster fix. Possibly losing sense of smell and taste. The risk of Meningitis if we postpone fixing until after the relays. Etc...) I was comfortable asking questions. And I flat out said I NEED to run Hood to Coast and another relay in July. He laughed and assured me I will be running them and this could all be done by the end of the month. Hallelujah!!! 

The three options I have been given are:

1. Taking a medication that would help ease the dripping. It wouldn't fix me, but it would then confirm there is a leak, so then we would proceed from there on leak repair
2. Getting that nuclear tracker scan thing that Dr. Dogan has recommended. This is a lumbar puncture and with that I would have things shoved up my nose to show which nostril the leak is coming out of. Based on those results I would then be scheduled for surgery with Dr. Geltzieler. I asked what happens next. He smiled and said, "I have a plan."
3. The most aggressive approach. I go right into surgery and he basically explores to find and fix the leaks. Aggressive, but also possibly a one-stop shop surgery and I could be fixed.

Which option did I chose? I'll tell you next time!

I can say we were so pleased with the day's results. Every person we encountered was wonderful. Dr. Geltzieler walked us out to the lobby and continued chatting with us about what the future holds, and even played with Moana stickers with Katura. Right there he became a winner in her book! What does the future hold? I don't really know yet! I guess I can't know until I make my choice from the above options and then we see how the results from that choice play out! And until I can run again, you can find me walking with a stroller, my mom, and my brother (aka the dog)!

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Edited to add: I'm sharing this earlier than planned just in case I die. Could I be more morbid? And please, for the love of all things happy in this world, stop asking how my headaches are or if I have migraines. I think this all confirms what I've been saying for months. They are NOT headaches. I don't have migraines. My brain fluid is just oozing its way out of my body causing insane pain! And this is not connected to or a result of my Meniere's Disease. I'm just lucky enough to have these random things happen I guess!