1 Year Post-Op Scans & Reflection

Hey everyone! I wanted to make sure I updated you all on how I'm feeling and how my MRIs are looking now that we are at the one-year mark of my operation!

It is really insane to be saying that. Two years ago I never would have believed I would ever get brain surgery, and one year ago I never would have believed I'd be back in medical school. How lucky am I?

How is everything looking after 1 year?

Even better!! Can you believe it? Because I still can't and I'm writing this one month after the fact.

My idea of the best-case scenario before the appointment was just that everything would look the same. I even set my expectations for even a little worsening just because we were further out from the surgery. 

The biggest change has been with my syrinx (thank goodness, I don't want anything around my brain changing too much after brain surgery). So I wanted to get into that first:

Here is a cross section of my syrinx at the widest part, with my most recent MRI on the left and the pre-op findings on the right. This is my favorite scan of all because you can really see how much my syrinx has thinned out. It used to be 0.70 cm in diameter at the widest point, was around 0.60 at 3 months, and now we're down to 0.53 cm!! 

Here is my syrinx in a sagittal MRI view, again with the most recent scan on the left and my pre-op scan on the right. The blue and red lines are to denote where the cross section measurement in the first figure was taken for each. Pre-op, my syrinx extended from C3-L1, now it only reaches from C5-T11!! Which is even crazier because if you all remember from my 3-month post-op post, my syrinx had not gotten much shorter. 

As you all know, research is lacking when it comes to syringomyelia right now (I'm hoping to help with that), but presently it indicates that improvement is usually most notable within the first 3 months and then sort of stagnates [2], so to see continued reduction of my syrinx one year out is unreal.

Here's how my brain and cervical spine are looking now! As we saw in the preoperative scans before, I used to have that HUGE peg of cerebellum getting in the way of any good posterior cerebrospinal fluid (CSF) flow. But now?! That's a perky cerebellum if I do say so myself. No CSF leaks, no suboccipital skull or C1 lamina anymore, of course, and the dural graft has been integrated into my own dura successfully! My favorite update on my brain, which was crazy unexpected, was the minimal scar tissue. 

I have super loud neck cracks now (like someone from across the room will let out a "woahhh" when I get one out) and I didn’t know if that was just my posterior neck muscles (which would make sense since they had to cut and reattach 'em during the operation) or if it was crepitus from new accumulating scarring deeper in there, so I was real worried about scar tissue build-up. I had pretty notable crepitus deep in the incision site around March, so I ramped up my physical therapy even more, and I think it paid off! The main reason for repeat operations in cases like mine is scar tissue accumulation that re-obstructs the area and has to be cleared [1]. My neurosurgeon gave me the fantastic news that the worst of the foreseeable scar tissue forms within the first year. Watching him zoom in trying to look for scar tissue when I was worried I had messed things up back there was UNREAL!

I've still got no restrictions (woot woot!), no need to slow down, and he encouraged me to keep doing what I'm doing because it's clearly working. Our next appointment will be at a similar time next year with an updated MRI brain down to T12, with no need for lumbar imaging next time because there are no signs of tethered cord or conus anomalies! So, all unbelievably amazing news I still haven’t really processed.

To distract me from the mounting nerves surrounding my trip, I made a bit of a vacation out of it before my appointment. So in case you wanted to know what I was up to prior, here are the highlights below! 

Appointment Trip

My one-year trip started off with a 3-day stay in Washington, DC. I took a water taxi for a night in Alexandria, saw some Smithsonians, explored The Wharf, went to this SUPER cool underground speakeasy, and the thing I was most excited for was seeing NXCRE at a rock concert at the Pearl Street Warehouse. NXCRE was outstanding, they did such great crowd work, and the energy in the venue was insane!! 

After the concert, we got drinks at a rooftop bar nearby, and I couldn't believe that I was still going. A year ago, I NEVER could have come to see live music, especially at a performance designed to be loud, with strobe lights, electric guitar and drums, and in such a packed venue. My body would not have been able to handle more than one song max. To not just be present, but to be jumping up and down and yelling the entire time made me a little emotional. 

I was even under the weather on this trip, with what I'm pretty sure was a nasty cold. My body pretty much crashed the second I got home from the hospital that Friday, and I woke up on Saturday feeling pretty gross when we were heading out. But I was able to do everything I wanted to do, walking 5+ miles/day in DC, and it was pretty cool to have my main symptoms be cold-related things and not Chiari and syringomyelia-related things.

The amount of mucus inside my body at this time was outrageous. 

After doing DC, I drove up to see my neurosurgeon and meet up with my dad and sister, who I was lucky enough to have at my visit! The last time we were up in Baltimore, all three of us was for my operation. So it was great going out to eat and spending time together in the fun context of a check-up. 

On the day of my appointment, I had my MRI first, which I absolutely need more Valium for next time (note to self). The time in the machine was a little over an hour, and oh boy, my body HATES those scans. Being told I have to lie completely still, especially having a cold this time and holding in a cough nonstop, as a person who can't sit still even at my most focused, who also does not like being micromanaged, is SO not my thing.

But everyone at the hospital was wonderful, just like always, and we got my MRI results less than two hours after the imaging itself, so we could review everything with my neurosurgeon.

I only look elated here because I hadn't gotten in the donut from hell yet. 

Ignorance is bliss, y'all.

 The whole trip was so full-circle and made me awfully reflective, so here are some takeaways that popped into my head:

Things I have learned this past year:

• SLEEP. OH MY GOD SLEEP. I've noticed more than even diet or exercise, not sleeping enough makes my symptoms (and my emotional agility to handle them) drastically worse.
• Even when I was in the trenches of surgery, waking up at 3 AM every day, I made sure to protect at least 6 hours of sleep, even if that came at the expense of studying/showering/eating dinner the night before. For me, this was a game-changer in keeping me healthy.

• Now that my brain circulates CSF the way it's supposed to, alcohol actually affects me now! I could drink eight shots in one sitting (Only happened once and it was senior year of college! Sorry dad!) and feel nothing pre-surg, not even be buzzed. But I already start feeling warm after one drink now, probably because substances can finally actually cross the blood-brain barrier. Super cool thing I never would have thought of otherwise.

• It is completely okay to get emotional. Brain surgery is a huge deal. Milestones are huge too. Crying when I need to cry (and not judging myself when I don't feel the need to cry) is a super natural part of healing my mind while my body is healing.

• Do it (whatever it is), even if you feel a little under the weather. It's worth pushing through feeling a little gross for the memories most of the time.

• People are so so good. I have gotten to know so many amazing people through sharing my story. Having people I've never even met in person be genuinely invested in my recovery (you included, heyyy) is an immense honor. Thank you! 

• Advocate for yourself. You are not being high maintenance for getting what you need. There were a few times people who don't get it/don't know my medical history would try to push me to do something that I didn't feel like I was up to doing (like assisting in a 6+ hour surgery instead of three 2-hour procedures where I could get a quick break in between), and with my history of being a people-pleaser, I'd almost do it. I was always glad I did what I wanted to do, even if it didn't work out, because it was what I wanted to do, not something I did because someone else told me to. 

• Steal time for yourself, even if the situation makes it difficult and it's only for one second. There were times I'd take a quick walk or grab a snack when I was working in the hospital, and those were some of the highlights of my rotations because I got to be selfish for a second. Even if it was just to get a tasty drink and step into the parking lot for 2 minutes to listen to music (I would literally set a timer on my phone), taking time for me was huge.

• Everything is special. Going to the grocery store by myself, listening to music on full blast and dancing until I want to stop, coughing without feeling like my head is gonna explode, going out and feeling pretty and young, taking a nap and not feeling like I'm going to die after, insert your favorite mundane comfort here. Life is so cool and I am so lucky to get to live it. 

• I can step out of survival mode.
• In recovery, I’ve had this constant feeling like I’m on borrowed time and that feeling able-bodied is going to end soon and suddenly like it did when I first got sick. The results of this visit being so hopeful is starting to coax me out of that constant concern that I'm gonna get sick again.

• I think I wanna jump out of a plane. 
• Date TBD but y'all will absolutely know about it. We gotta keep stress-testing what's left of my brain, right?

I'll keep updating my New (and Improved) Normal post on everything I'm up to! 

Looking forward, I have two rotations left of my third year of medical school, with 6 weeks of emergency medicine coming up next. This should all be a gradual roll downhill, we summited the mountain of back-to-back Peds/Internal Medicine/General Surgery. I'm really excited to get some experience in emergency medicine and trauma, I think a lot of it will be applicable to prepping for anesthesia! 

I'm also starting to compile my application for out-of-state rotations for my final year of medical school. It is so crazy to be thinking about a career now instead of trying to get my chin to my shoulder like I was this time last December!

As always, thanks for hanging in there with me. Please keep reaching out with any comments, questions, or just to say hey. Y'all keep me going!

References

1. Silva, A., Thanabalasundaram, G., Wilkinson, B., & Tsermoulas, G. (2022, December). Experience with revision craniovertebral decompression in adult patients with Chiari malformation type 1, with or without syringomyelia. British journal of neurosurgery. https://pubmed.ncbi.nlm.nih.gov/32965133/ 
2. Wetjen, N. M., Heiss, J. D., & Oldfield, E. H. (2008, February 1). Time course of syringomyelia resolution following decompression of Chiari malformation type I. Journal of neurosurgery. Pediatrics. https://pmc.ncbi.nlm.nih.gov/articles/PMC4294217/