What's it REALLY like - Recovering from Neurosurgery

As Adele would say, "Hello from the other siiiiIIIIiiiiide!"  

I'm officially considering myself recovered from the neurosurgery I had six months ago.  There is a gilded proclamation, signed by the mayor, and all the people of the kingdom are rejoicing.  

Why yes, I do still format my blog like it's 2010.

Ok, not really.  What really happened was a week or two ago I thought to myself, "Huh.  I guess I'm all recovered now.  Cool."  And then it took me a while to decide to write about it.  

The Early Bits

If you read my last post about my recovery, then you pretty much know how the rest of it went.  It was several cycles of, "I'm doing a bit better. Guess I should go down on meds," followed by, "Everything is literally the worst and it all hurts and ugg why am I not as fit and healthy as an Olympian yet?!" with a little bit of, "I'm doing ok, and thankful for what I've regained, and I feel stable."  Luckily, I don't remember most of it.  

From what I do remember, I saw the nerve pain in my hands slowly get better during this time.  My endurance improved quite a bit, quite quickly.  My recovery in general was much quicker than usual, though while I was in the thick of it, everything seemed to take way too long.  The thing that did take longer than usual was getting back to my baseline of meds, but I honestly think better pain control and steroid coverage ends up helping recovery go more smoothly in the end.  I'll have a few extra pounds to lose, but that's life with adrenal insufficiency for ya.  And it seems my parents survived being stuck in the same house as me while I was a grump, so it's a win all around!     

The Middle Bits

Speaking of wins, this is the part where I put together a scorecard of what I gained/lost from this round of neurosurgery.  Overall, I can only conclude it was a huge success. 

The good:

I can finally flipping breathe again!  As long as I'm not laying down completely flat on my back, I basically don't notice any restrictions in my breathing muscles.  

No more leaks!  I've had enough coughing fits (thanks athma!) and sneezes to know that my leak is successfully patched!  

My sitting tolerance is great now.  Basically I can sit for as long as I want.  That's much better than the 1-2 hours of sitting up once every few days that I used to be thankful for.

My neck is much more stable.  I don't have to put my skull back on top of my neck constantly anymore.  My spinal cord is very much enjoying not being squished and pinched.

Unless I'm tired or overworked, I don't really look like I've had a spinal cord injury.  My leg strength is pretty good, I don't trip as much, and I don't look like a drunk zombie T-Rex when I walk.  My adventures have taken me both up and down some very steep hills without much difficulty, which is way more than I expected to ever get back.  

My muscle spasms, while still a problem, are much better.  I think I've only had one or two days in the last month when I felt really incapacitated by them.  

There's probably lots of other good stuff too.  I just don't remember it and it's just normal for me now.  I love when I can take stuff for granted.  

The meh:

That nerve pain I woke up from surgery with is still frustrating.  It's a lot better, but I still have to be very careful how I use my arms or I'm in for a rough time.  I can't throw a ball for my dog, or cook much, or walk with my arms loose down at my sides.  And forget about reaching for anything!  I basically had to stop PT because the exercises flared me up any time I did upper extremity anything.  Every couple weeks I try some light exercises and I quickly learn that it's not time for that yet.  The good thing is that I can finally crochet and draw again.  And if I protect the angry nerves, the nerve pain fades more into the background instead of something that has my attention all the time.  Sometimes I don't even have any pain at all on my left side.  I'm frustrated, of course, but grateful for the progress so far and still hopeful that I'll continue to get better.

Somehow, despite having half a hardware store in my spine, one of my levels is still wiggly.  This really freaked me out at first because in the past it's always meant more neurosurgery.  But so far, this one wiggly level is behaving.  I do get pain and neuro symptoms when it slips "out," but I can almost always get it back "in" quickly and easily.  It's not progressing or holding me back from anything, so at this point it's more like those clouds on the horizon when you are on a camping trip and you aren't sure if it's going to be a big miserable storm that may electrocute you with lightning, or just a bit of wind and a refreshing drizzle.  It's there.  Lurking.  But for now I'm ok.  

My blood pressure still sucks.  I keep thinking my blood pressure cuff is broken, but then I go to the doctor and their cuff confirms I have blood pressure not typically compatible with consciousness.  My body is dead set on losing the fluid I take in, keeping my blood volume too low to support ambitious things like standing or walking (more on that later).  I keep upping the meds that usually help me retain salt and water, but my body is being really stubborn about letting them do their job.  I do have good days, or even good groups of days.  And during those good times, I do meet my goals of walking 1-2 miles.  But most of the time, I'm not doing a lot of standing or walking lately.  

Overall 

Not a bad scorecard.  I always know that surgery won't be a magical fix for everything, but I'll take any improvement I can get.  And I'll be thrilled and feel really lucky for each little bit of my life I get back.  

Speaking of...

This is also the part of recovery where I have an identity crisis because I'm not 100% disabled anymore, but I'm also not working or having lots of babies or traveling the world.  It's been the catalyst for me coming to terms with some harsh realities I've been putting off for a while.  

When I first got sick, it took a few years to adjust to my new reality where being sick greatly impacted my life.  There were tears and lots of frustration and then I came out the other side with a new normal I was happy with.  I actually ended up having the best times of my life during that "new normal!"  

   Then these last few years I've been working on adjusting to the slightly harder reality that being sick isn't just a part of my life, but kind of the main thing.  I have to give up a lot of dreams, maybe not forever, but certainly for now.  It makes me REALLY glad I traveled a lot, moved across the country, lived in NYC, etc. while I was able to.  There's been lots of tears and frustration lately, but I know I'll come out the other side with a new, new normal and hopefully I'll find a way to be happy with it.  People go through this all the time and it doesn't destroy them.  I'll be just fine.  

What's Next?

I think with chronic illness, it's easy to fall into the trap of thinking "ugg, it's always something" when you recover from one major surgery/trauma and then the next issue pops up.  And yes, it is always something.  That's part of the chronic illness package.  But I like to take inspiration from my favorite president in American history, Dr. Josiah E. Bartlet and ask "what's next?" instead.

The likes of him only exist in fiction.

I like "what's next."  It implies both a readiness, a gritty acceptance, and maybe, perhaps, some hopeful anticipation.  When you think "what's next?" the answer could be good, bad, or some kind of mix.  When you ask "what's next?" you are looking life in the eye and telling it you are ready for whatever it throws at you.  

So, "what's next?"

Medically, I have a new issue to pursue.  One of the veins in my neck collapsed probably about a couple months ago (RIP to my internal left jugular), so after a year of having low cerebrospinal pressure from a leak, I now have high pressure.  It's almost a little funny.    That's why my blood pressure is still so bad.  My brain thinks I have really high blood pressure, so it makes me lose more fluid than usual.  And then it's confused because it sent clearly worded notes to my body about the importance of losing all the fluid and it is still being squished, so it sends more orders to lose more fluid.  And then throws a tantrum in the form of a throbbing headache when it is still getting squished.  In addition to blood pressure issues, my vision has been funky, I don't sleep very well, I've become a total ditz (ok, I've become more of a total ditz than usual), and the constant tachycardia makes me really tired.  It has given me the superpower of being able to hear my pulse in my ears though.  So I got that going for me.  

High pressure isn't as much of a bummer as low pressure, but it is definitely not as widely understood or treated.  I had some serious issues with high pressure around 2009-2011 and it was an odyssey to find a doctor who finally diagnosed and treated it.  He has since taken a well earned retirement, and the other doctor I knew of who treats this doesn't treat that kind of vascular issue anymore.  Oh, and I may have another collapsed or partly collapsed vein that drains from my kidney.  So....yeah.  I'll be working on that for a while and hopefully find the right doctor eventually.  

  Non-medially, part of me coming to terms with my sickly reality is giving up on the idea of working in a clinic (at least for now) which means I'll hopefully be starting my own telehealth practice.  I'm pretty excited about it.  I talked it over with my boss and she's going to be really good about accommodations and vacation time and stuff.   She's pretty cool in general.  COVID has opened up lots of doors for sick and disabled people and I think I'd like to walk through some of those doors myself.  It will be a lot of work and it's not a sure thing, but for now I'm enjoying setting everything up.  It will be awesome to work again and use these skills I have to help people and communities.   

 And, then there's all the little daily delights like greek frozen yogurt, or finding a new podcast I like, or crocheting tiny jellyfish.  I have family parties and camping trips, and weddings and lots of great things to keep me busy.  When COVID dies down a bit, I look forward to reassembling a social life.  There's lots of good stuff out there.  

Like cows!

So, with the chapter of my life that is my 8th neurosurgery coming to a close, I put on my suit of bubble wrap, stare down the future with as much grace as I can muster and ask, "What's next?"