Yeah. So, There Is ONE Good Thing.

I don’t even know what to say. 

The good news: my ENT doctor gave me permission to run and be active again!

The good?? news: I’m not having surgery

The good but bad news: I am being referred to a new doctor (a neurologist) to get to the bottom of this. 

The day of tests didn’t show enough to prove there is a CSF leak or where it is if there is one, so the doctor isn’t comfortable going in and doing surgery. Without knowing exactly where a leak is he could do more damage than good. I could have a leak but the odds are slim because of the results they got. 

So now it’s a new doctor and starting over. But I’m staying at OHSU because they are the best and I’m not going to waste my time with something local. And my awesome ENT doc said I can give him a call if I need to. 

That’s that. So back to the drawing board.

Guess we find out why my brain is messed up later.

I'm Radioactive!

This was a day I hope to never repeat!!

He totally suggested
taking the action shot!

The alarm went off at 5am. We were leaving St Helens before 6am. By 6:45 I was getting dropped off at OHSU and at my first appointment before the doors even opened. I really had no idea what this day was going to be like but I was determined to stay positive. Ideally this day will be a huge step in helping me get my CSF leak fixed. If you read the first blog of all of this stuff, I went with option 2 - testing to find where the leak is so they know where to go in and fix it.

First up was a quick visit with ENT. I watched the doctor arrive for work and soon we were talking Hood to Coast (because why not?!?) while we waited for my nose to become numb. And then the horror of my next 26 hours began. He had EIGHT pledgets labeled and ready to go in my ears and nose. 8 things for 4 holes?? Umm.... what?!? Three went in each nostril. It wasn’t super awful getting them up there, but it wasn’t pleasant. Next was my left ear. It hurt but then was resting fine. My right ear, however, nearly brought me to tears. He was awesome and took it out and said to blame him if the other doctors complained. I couldn’t even breathe or swallow without intense pain when it was briefly in my ear. No way!! All the strings were taped to the side of my face and I was sent on my way. I had to be seen all over OHSU looking like this?? 

Off I went to the main OHSU hospital and was quickly admitted and sent to my first room. Happily all I had to do was put on the open back gown, but was allowed to keep my pants and sports bra on. I never had a chance to even turn on my tv and I was being wheeled off to the next appointment. 

Don't you love my gown?

Where I got to lay on my tummy and get
stabbed in the back while having an x-ray

Ugh, I’m still feeling this one. I was with radiology and the awesome guy that was going to do my lumbar puncture. I feel bad, I can’t remember everyone’s names. I met so many people and they were all really great. This guy was extra great. He explained in detail all that was going to happen and answered all of my questions. 

I crawled out of my bed and got onto the table under the X-ray machine. And in went the needle. I handled it well and then a jolt shot down to my foot. We were near a nerve. I felt another zap and then another painful jab. That was the spot. Then we waited. A long time. While we waited there were a lot of conversations happening. Finally one man introduced himself as Dr.___??? and said that cisternograms are always unique, but mine was an extra special set of circumstances. He didn't elaborate and since I had a huge needle lodged in my body I didn't have the energy to ask.

Radiology had to call nuclear medicine. Someone from nuclear medicine personally walked over the radioactive fluid that would be going in my body. He then took over and injected me. I didn’t really feel it at all. Then he took the tubing and all things that came into contact with the fluid and put it back in the sealed metal box. Before he took it away I asked to see the needle. Oh my gosh it was BIG!! They were shocked I wanted to see it and then in disbelief when I asked how much was in my body. I’d say the needle was 4” long and over 3.5” was in my spine!! No wonder I’m still feeling it!

I rolled back onto my original bed and was transported to my recovery room. My headphones came out and I disappeared into the world of podcasts to kill time. The lady on the other side of my curtain was bitching about everything so I was happy when I was being wheeled away again. 

Officially radioactive!

That flat panel ends up
maybe 1" from your face

This time we went to a different building and down to the basement for a cisternogram with Nuclear Medicine. This became my home away from home. I had a scan that was probably 25+ minutes long. If you’re claustrophobic or overweight I don’t know how you’d do it. This machine slowly sucks you in and then lowers down over you. I am pretty sure Gene Simmons could stick his tongue out and easily touch it. That’s how close this is to your body! The goal of this scan was to see the radioactive fluid flowing through my body hoping to find the leak. 

Once again I was wheeled back to my recovery room. It wasn’t long and I was discharged! Yay— or so you’d think. This just mean now I had 3 hours to kill at OHSU with a sore back and stuff shoved up my nose. 

It just doesn't get any sexier than this...

I found a couch in the sun in a low traffic area and I claimed it as mine. I watched Mary Poppins returns and continually shoved tissue on my face to catch the nonstop dripping coming from my nose. How could I have any CSF fluid left??

My recovery "room"

Unexpectedly I heard a little girl voice that I know very well. Katura was running toward me!! Then she saw my face. I was scary. She kept a distance from me, not sure what was going on. I get it. But it was sad. We wandered around a while together taking in the sights before I parted ways and went back to Nuclear Medicine. I was so excited!! Last test of the day and the pledgets would be removed. Hallelujah!!

I eagerly checked in, with Shawn and Katura arriving only moments later. I hardly sat down and was taken back by this really great guy that I of course can’t remember the name of. He took blood and then took me back to repeat the test I did earlier. I was a pro at this. You just lay super super still and not worry that you’re nearly having a full body mammogram!

He went back to show the main nuclear medicine doctor the scans. He returned with good news and bad. The good: the fluid is flowing toward my head the way they want. The bad: they want it to get up there a little more so I would need to come back the next day. The really bad: the pledgets had to stay in my face!! I was willing to do it because I want a resolution, but I really wanted to cry. He got me all taped up even more to make sure everything would stay secure. I even got to take medical tape home just in case I needed more. 

Ready to have a breakdown
before I even heard the bad news.
My nose is so poofy!!

Back to St. Helens we went. I hadn’t planned for this. So a stop at Walmart was made for emergency clothes for us girls. I couldn’t bring myself to be seen in public so I trusted them to find me something cute. They did a good job and now I own 2 yellow shirts. And I finally got food - a flatbread sandwich from Subway. If only I could have actually tasted it. 

I was absolutely miserable all night. My nose was dripping so much. A fast gush coming out going down my face if I wasn’t quick enough with the tissue. I didn’t sleep at all. I was on the couch alone being a mouth breather. I woke up choking on the driest tongue in the world. I had to get water and probably every 30 minutes take a drink. It was torture. 

At 6am I was up and taking a bath since I couldn’t get my head wet. We were out the door and on our way, getting me to OHSU 30 minutes early. As I hoped, Nuclear Med took me early, with my same guy coming to get me for my last cisternogram. He said he was nearly 100% certain Dr. Nance would remove my pledgets today. I just hoped it would be soon and not hours later. 

My scan went the same as the others and quickly thereafter the head doctor was with me. He explained that this next step was the most important. They would remove the pledgets in a certain order to avoid any cross contamination. These pledgets will be the key to this whole process. They caused misery but hopefully will show what they need to see. 

Freedom!! I can breathe! I can smell things!
I can go shower!

And so three men worked together to peel tape from my face, untangle strings, remove and store the pledgets. Oh man was it uncomfortable. It brought tears to my eyes but also great relief! I could breathe!!! I could smell!! Things we take for granted suddenly felt like the greatest gift!

Where do things stand now? Dr. Nance will asses my scans and pledgets and get his findings to my ENT doctor today. My doctor said he wanted to talk to me himself on Friday. So hopefully I hear from him. If not I will give him a call myself to see what he says. And from there? I don’t know. One surgery? Two? I don’t know. I’ll keep you posted!

Sorry this was long - but experiencing it was even longer. The schedule I was given looked like I’d be done at 12:15 Tuesday afternoon. Instead it was 9:35 Wednesday morning! And Tuesday I was at the hospital until about 4pm. I’m worn out! I’m ready for bed.

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)!

* * * * *

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!

Pardon The Interruption....

Hi everyone, I'm alive!!

And to quote Forrest Gump, "that's all I have to say about that."

Remember when I went through fertility help at OHSU to create adorable little Katura, but you read about it AFTER it was done? That's what we are going to do again! I'm not a fan of unsolicited advice. I don't like to talk about personal medical things beyond what I share in my blog. Anything extra just causes me anxiety, and given all that is going on, I definitely don't need any extra stress added on top!

I will document my trips just like I did with Katura creation, and when we come to an end I will be more than happy to share! For the time being, as before, my mom, dad, Shawn and I will just keep to ourselves regarding what's going on and keep me sane!

I am happy to report that being dedicated to my relay teams, the doctor's assured me I will be good to go for Hood to Coast!! (Ah, the priorities of a runner.)

To hold you over, here is a photo of that crazy little baby of mine back where she was made!

Keep all those positive vibes heading my way, I appreciate and need them!!