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?"

What's it REALLY like? - Recovering from a major neurosurgery

Continuing the theme of posting more comprehensive and less curated accounts of my latest neurosurgery, this post will be about what it's really like recovering from said surgery.  I wrote this as of being three weeks post op, and then went back and edited it at just after four weeks in case anyone who is going to have this surgery wants to know the timeline.  

Attitude is everything!  (Or is it?)

First, I want to paint a picture of how I envisioned my recovery.  I got a little competitive about things and decided it was going to be my BEST ONE YET!  I was going to be a little workhorse - exercising my butt off, losing more of that annoying steroid weight, getting back to doing art while still in the hospital, getting off pain meds and extra steroids in record time, and incorporating tons of "best practice" ideas from the ridiculous amount of continuing Ed classes I took on acute/chronic pain and recovering from surgery. (Seriously, I have like double the amount of hours needed this term!)  I was gunna make awesome goals and achieve them in record time.  I'm an OT, after all.  And I've done this so many times before.  I should be GREAT at it!  

Oh, sweet summer child, sometimes the body has other ideas.  

Like being anemic, for example.  Or having no endurance because I've spent so much of the last year laying in bed.  Or having both hands disabled from inflammation in my neck.  Or having tons of emotional issues from med changes.

But that's getting ahead of myself...  

The Warm Fuzzy Part

    First, there was a nice few days at the airBnB condo where I felt things were on track and I was on enough pain meds that everything just kind of seemed chill and happy.  As my doctors suspected, my health improved a lot once I was in control of my own meds and movements again.  I started eating a few well-tolerated foods and drinking more fluids even without nausea meds.  

Can't resist Mom's cooking!

I didn't have to ask anyone's permission to get up and walk, so I did a ton of condo walking tours.  Basically, I'd nap, go on an indoor-walk, eat, nap, go on a mini walk outside, rinse repeat.  Coming from a place where I struggled to make it five steps to the other side of my hospital room and back, this felt great! 

My epic journey to sit by the pool that was like 1/6 blocks away

 I wasn't super functional - I needed lots of help with basic ADL type things and was still too tired for entertainment other than falling asleep to podcasts - but that was ok to me at this point.  I did have a lot of pain, but the meds made me care less about it. This is what I call the warm fuzzy part of recovery.  It's when there's lots of sleeping and meds involved and every little thing feels like a major victory.  It's nice and dreamy and what I console myself with when I'm facing surgery.   Like, yes I have to go through hell, but I have this nice bit during recovery to look forward to.  Usually it lasts a month or two.  Usually I see the end of this warm fuzzy time as the day when I stop taking naps.  This time, that happened day 10 after surgery.  Dear universe, that was way too soon!  I wasn't ready.

Anyway, prior to the warm fuzzy part being over, I did three things of note.  I insisted on going to a craft store while still in Arizona where I'm not sure what I bought, but I remember being excited about it.  It went pretty well.  In an excruciating, but hey at least I'm having fun sort of way.  

Yay!  I got "out!"  Now I'd like a two hour nap, please.

 I also flew home, which was an adventure in pain and lack of endurance.  Luckily I just upped my meds to get through it and have already mostly forgotten the whole ordeal. 

The girls roughly 15 minutes after arriving home.  

 The next day was Easter and my wonderful extended family did all the cooking and came to my (parents') house so I could participate.  (Everyone is either vaccinated or quarantine or both.)  I sat up at the table for brunch and had conversations and everything.  And then, that evening, I took my last nap.  At least it was a REALLY good nap.  

The Long Haul

Which brings me to the next part of recovery, which is the hard part.  This is where I'm in it for the long haul, often get frustrated, and go a bit bonkers from all the medication adjustments.   It's also where I see the most improvement and have the most joy as I get back to "normal" life.  It's complicated.  Like life, but more acutely.  

The day after Easter, I started going down on meds which is supposed to totally not have any withdrawal effects because of how small my doses are and how short of a time I'm on them and how slowly I go down. 

 Nope.  Lies.  All lies.  

Instead, as I described it to my dad, "My brain is marinating in crazy juice and I have no filter.  Good luck."  My parents would not be remiss in investing in a good pair of headphones or earplugs.  Coping mechanisms that are usually great?  All the CBT you've worked on for years?  Tending to be a rather stable and happy person?  Yeah, guuuubye to that!  Instead my brain becomes a constant stream of agitation and I get in thought spirals which are really unkind to myself.  Things like "lazy" and "I'm sorry" and "why can't I just..." come up a lot.  

This was coupled with what I considered to be a much slower recovery than I had planned for myself so far.  The first week home was rough.  I basically couldn't use my hands due to moderate to severe nerve pain. I wasn't improving in my ADLs or IADLs because hands are sort of important for most of those.  I definitely couldn't do art, but I also couldn't even really use my phone or other electronics for longer than a few minutes at a time. 

Bad hands!  You are in time out!

 I basically could listen to podcasts or watch TV.  So that left me having way too much time for my crazy juice marinating brain to ruminate on how my body wasn't cooperating with my very competitive ambitions.  It was tons of fun and I was tons of fun to be around, I'm sure.    

My "first weeks home" aesthetic 

My endurance was atrocious with "walks" sometimes only lasting a few house lengths and me having to spend a couple hours recovering afterwards. 

Yay, I made it six houses.  Now I need to go lay down for a few decades.

  Also, all the layers I'm wearing are because my neck is very sensitive to cold.  Even in ambient room temperature, I'll start getting major muscle cramping.  I basically live on heating pads and bundled up, even when it's warm outside.  I wonder what the neighbors think.  I don't care, but I do wonder.  

Things started coming together for me around week three post surgery (which is pretty typical).  I regained the use of my hands and to some extent, my arms for longer and longer periods of time.  My brain chemicals balanced out from that round of going down on pain meds.  My pain became much more manageable.  My endurance for sitting skyrocketed.  Even though I still "failed" many walks, I was reaching distance goals most days.  

Yay I finally made it down the whole street to the park!

And because my memory is terrible right now, I got to celebrate this "first" twice!

And had a freak energy spike and made it AROUND the park one day!  There was much rejoicing.  (And now frustration because I haven't managed to replicate this achievement since.)

Even though I still have times when I "literally can't even" and need lots of assistance, I have more times when I am reaching ADL, IADL, and exercise program goals.  (I also wanted to write that I am being less competitive about things, but then I reread this paragraph....  On that same note, I lost my fitbit.  I had just deemed myself responsible enough to start counting steps without going crazy about it and my fitbit just disappeared off my wrist later that day.  Like I have no memory of taking it off, let alone where I put it.  It was just there....and then gone. Maybe the universe is trying to tell me that I'm incapable of being only a healthy amount of competitive.)

Update: Week four has been a bit more difficult, but I'm still doing well all things considered.  My angry nerves flared back up as soon as I started trying to do things other than walking or sitting in bed, so I'm back to being pretty limited in what I can do.  And since it's nerve pain, it has the lovely habit of not hurting while I do the thing that angers it, and instead all the pain catches up to me a few hours later.  So it's really hard to gauge what I can and can't do which interferes with function and therapy.  As I feel better, I get more vain too.  I'm none too pleased with the additional steroid weight I've gained, or how the meds make me break out and have the dreaded steroid "moon face."  I'm starting to notice things like when my hair is a mess or my outfits way overproritize comfort over presentation.  I think the less I come in contact with mirrors the better for now.  haha  

 But on the bright side, I'm getting more consistent with walking.  I "fail" less walks and can make it around the block most attempts.  That's a good distance baseline for now.  My endurance is definitely still improving for both sitting and walking and hopefully soon, for (COVID safe) outings.  My balance, which gets kind of off after every fusion because of the new way my body moves, is much better and I'm much better at eating without dropping half my food back on the plate as I get used to my new neck position.  I'm progressing in PT and needing less help throughout the day.  I've gone down on meds a couple more times and navigated the resulting crazy brain a bit better.  I even went on my first outing to visit my grandparents with my brother and his fiance!  Everyone agreed that it was the healthiest they'd seen me in a VERY long time.   

That's kind of where I am now.  Life is still small, but already bigger than it was pre-surgery and continuing to grow.  I vacillate between celebration and frustration as I navigate the bumpy road of recovery.  It's definitely not linear, but the trend is overall a good one.  And if it all goes well, and I put in a lot of work, in five to twelve months from now I'll be in good shape (for me) and, fingers crossed, ready to get back to "real life" whatever that will look like.  I'm hoping for walking two miles a day, going to work part time, and being able to travel again.  But really anything that's not laying in bed most of the day is pretty awesome!

And for fun and as a thank you for getting through this ill-proofread post, here's some pictures of my dog "protecting" me while I rest.  It's her fun new hobby she's picked up since we got back home.