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Saturday, December 6, 2014

What To Expect When You're Expecting Brain Surgery


In the days and weeks leading up to my surgery, I searched the deepest recesses of the Interwebs looking for stories of people who'd had a craniotomy and what their experience had been like. I found tons of medical "patient guides" from hospitals, PDF versions of discharge instructions, and a little  disconcertingly, blogs from people with various conditions necessitating brain surgery whose final posts read something like "Tomorrow is the big day!   Surgery in the morning!" and they never wrote again. It kind of left a person ill at ease. What happened to those people? Did they die? Is the post operative experience too excruciating to write about? I did manage to find a few brave souls who wrote about their experience and it helped me so much. I vowed that if I was still this side of the grave after my operation, I would come back and tell you how the experience went for me. This entry is mostly general musings and reflections on the experience. I will write a second part with suggestions about products I am grateful I had on hand to facilitate my recovery.

So without further ado, Part One:

Zipperhead*
brain surgery cost
One month post-op glam shot
I was very focused on my incision leading up to surgery. How big would it be? How much would it hurt? How does a person possibly sleep with a gash like that in their head? Would my head look different after they replaced the section of skull? How much of my hair would need to be shaved?

It turns out, I am incredibly happy with how this aspect of my surgery has gone. My incision is rather large I suppose - about 14 or 15 inches long in an upside horseshoe against the back of my head. Truthfully, I don't remember it ever being painful. Tender? Yes. Uncomfortable at times? Sure. But the only time I remember associating it with pain was during the drain removal fiasco in the hospital Kent referenced in his update. I was able to sleep comfortably on my sides and back pretty much right way which shocked me. I didn't have staples in my head though. I'd never heard of someone only having stitches, but Dr. Huang said that my case called for a continuous line of sutures to realign my scalp pieces rather than staples. Who am I to argue? She actually does this stuff professionally whereas I only went to the College of WebMD for 25 minutes on a rainy Thursday the week before.

I will say, what I was completely caught off guard by was the itching and the scabbing and the flaking and the oozing and the host of other disgusting things your scalp does whilst healing. It's not a pretty sight, and I can't even see it. I am not a shrinking violet when it comes to the human body, but the things my scalp has come up with during this healing process sent a shiver down my spine. Small parts of my scalp are numb where they cut through nerves. They also cut through muscle which makes opening my mouth wide enough to eat a bit uncomfortable or even painful at times. Both of those aspects continue to improve. If I mash on my head (gently) you can feel one  indent where I assume they made a burr hole with the bone saw to lift up my skull. Other than that, I never experienced any cracking, clicking, popping, or "settling" of my bone.

*Zipperhead is a term of endearment used between people who've undergone brain surgery. Usually, the pattern of surgical staples on a scalp resemble a zipper. I didn't have staples, but I'll commandeer the term anyway.

Collateral Damage
File this under Things Your Doctor Forgets to Warn You About. As I mentioned, I was braced for the blinding pain of my incision and freshly cracked open dome piece. Both of those were pretty much non-issues for my entire recovery. What no one warned me about was all the other things that hurt. My first morning home (and thus away from IV fentanyl) I woke up and everything - literally everything - from my toes to my nose ached or hurt. Even my belly button wanted in on the action and decided to ache in a fit of drama. It would seem that during the course of my 15 hour surgery, I was essentially stretched out on a medieval rack to ensure I didn't move a muscle during the operation. Fine, it probably has some fancy medical name - though I do fervently hope they call it The Rack. Also as a result of this positioning, pressure was placed on some nerves in my legs which caused me to lose feeling on the outside of my thighs from my knee to my hip. I still have not regained all the sensation a month later, but I think it will come back in time. Let me tell you, shaving when you're visually impaired and have no sensation in your legs should be an extreme sport of some kind.

I was also covered in various abrasions, bruises, and punctures from IVs, blood draws, arterial lines, angiograms, etc.  You will also likely have screw holes/punctures in your head in addition to your incision. I myself have two or three such holes in my head from the skull camp which, as you can probably deduce from the name, clamps your skull in place during the procedure. All of these things though were quite manageable with the pain meds they send you home with and Tylenol. 

Pain Medicine - Use Responsibly
By some horrible misplaced notion of gallantry, I used to defer taking my pain medication. The truth is, by doing it that way you get behind the pain curve and are left playing catch up. Don't be an idiot like I was. Take your pain medication on schedule to stay ahead.

Also be aware of the fact that oxycodone seduces you into believing you are the among the worlds greatest thinkers and/or terribly witty. You are not. The world at large was in serious peril because mere days before going into surgery I had opened a Twitter account.
Oxycodone.
Social Media.
Believing the world needed to hear my innermost pontifications.
Luckily, I couldn't stay awake long enough to post anything too humiliating. I think.
Speaking of medicine...

You'll Feel Like a Reverse Pez Dispenser
So much medication, friends. And in the early days you'll be too exhausted to do anything but open your mouth, have your caretaker place the pills in your mouth and swallow. They could be putting literally anything in your mouth and you wouldn't even care - you're just excited they brought the meds to you and you didn't have to zombie-crawl your way to the medicine cabinet. Keppra, Topamax, Oxycodone, Tylenol, decadron, pantoprazole, dulcolax, iron...the list goes on and on.

Two important notes: 1) Don't even think about trying to keep your own meds straight. This is literally beyond your capability and you will mess it up. 2) Have your caretakers write everything down. They think they'll remember when they gave you your last dose of whatever, but they're tired too and they might not. Write it down, get a pill organizer, set alarms on your phone, find a system that works - these are serious medications and you don't want to be messing around with them.

The Love of Furry Quadrupeds
I'd like to mention pets here for two reasons. First, at the time of this writing, I am 4 weeks out from surgery. I was warned I would need incredible amounts of sleep for the first 3 months after surgery and I was not lied to. In the post operative time, the sleep schedule your cat or dog keeps suddenly seems quite reasonable and you'll have no trouble keeping up with their 14 or 15 hours per day. Second, while it is mostly true that Burt is Kent's cat, he has been a great comfort to me during this recovery. Burt usually heaps affection and attention upon Kent while spurning my advances. However, the past several weeks, he has slept curled up by my side or feet. Does he sense my need for comfort and benevolently obliges? The romantic in me hopes so. More likely he likes the new subdued Jenna who is now a giant, stationary heat source...but I tell myself it's the former. Anyway, I'm not saying everyone should rush out and get a pet on the eve of surgery, but there is something uniquely reassuring about their presence. In the interest of full disclosure, he is also one of my greatest recovery obstacles  in the sense that I can no longer see him very well when he darts around between my feet as I walk. Therefore, the amount of times I've almost tripped over him has risen dramatically. I'm sure there's a complicated metaphor about love and life in there somewhere.

Endure With Grace The Endless Parade...
If you're having brain surgery, you've probably spent a night or two in the hospital before this point and are no stranger to the endless stream of people flowing through your door at all hours of the day and night. The good news about Johns Hopkins Hospital in particular is that it is consistently ranked among the top neuro hospitals in the nation. The bad news is that they are a teaching hospital and all the brightest and best they attract will, it seems, urgently need to speak with you just as you're drifting off to sleep. They will pressingly need to ask you the same exact questions and administer the same exact tests the residents 5 minutes earlier did. In between them are the people who clean your room, empty your catheter bag, clean your brain drain (poor sods!), take your vitals, deliver your meals, bring your medication, change your bedding, etc, etc. Be as kind as you can to them since they're only doing their job. Be extra nice to the brain drain cleaner who is arguably having a worse day than you.

...But Don't Be Afraid to Advocate for Yourself
Sometimes residents and fellows...or even the attendings can cross lines. Don't be afraid to advocate for yourself or have someone with you who can do it for you. I'm so glad I had Kent across my various hospital stays to push for certain things. I'm also very glad my best friend was there to help facilitate our discharge. Being more kind and generous than you feel is always a good idea up to a point. But sometimes you have to know when and how to push back.

No Wonder Brain Surgeons Drive Porsches
Ok, so I don't actually know what kind of car my surgeon drives. But if you're anything like me, and you've recently heard the sentence "you have to have brain surgery" you've also probably had the thought "how much will this cost me?" trail not far behind. There are likely a million variables, but I can tell you that so far my total for the two embolizations and the craniotomy (including hospitals stays, anesthesia, all the doctors charges, the imaging they do in the hospital, everything) totals around $120,000 which is actually less than I feared. This is before insurance and before all my final bills have trickled in from surgery. At the moment our costs after insurance coverage totals about $7,000. Included in that figure are the co-pays for most of my medicines and most of my doctors visits during the time I was actively treating my AVM.

NOT included in our out of pocket figure are the "incidentals" of treatment such as the cost of traveling back and forth to various doctor appointments 800 million times, parking fees, the cost of my initial diagnostic testing, the copays/fees of the experts I consulted originally when shopping for a surgeon, plane tickets, pet sitter fees, meals for Kent while at the hospital, hotel stays, my cupcake tab, etc.

I've spoken of it before, but it's truly amazing how many countless hours I've spent on the phone micromanaging various billing departments and our insurance company. We have been mis-billed so many times. It's worth being diligent because we've managed to save several hundred dollars simply by pestering the right people to make the appropriate corrections. Also take advantage of any "paid in full" discounts and negotiate for whatever you can - it all adds up and the worst they can say is no.

The Double Edged Sword of Excuse
It's not hard to convince yourself you deserve that donut or cupcake because, after all, you just survived one of the harder things the human body can endure. It's a good excuse to indulge a little. On the other hand, that same body needs your help to recover. You did just have brain surgery and that's why it's important to walk that extra 1/4 mile or eat that extra serving of vegetables at dinner. Treating yourself well comes in many forms and you can use the craniotomy excuse for both good and bad.

You Can't Do It Alone
Speaking from a practical standpoint in the beginning, you have to have people lined up to help you with basic daily functions, like showering. I needed help for my first 5 or 6 showers because I was so tired and washing your hair by yourself is almost impossible. My first shower was over an hour long and mostly consisted of my friend de-matting my hair from all the caked on blood and surgical gunk.

It also helps to compose a list of Helpful Things for your care team - particularly if you'll be having different shifts of people staying with you.  We made one to help people know where things were kept in our home and included things like our wifi password, our pharmacy's phone number, my surgeon's number as well as addresses for nearby grocery stores. We also wrote down household tasks we thought would be the most beneficial to have assistance with while I recovered. Watering plants, feeding the cat, laundry, etc. People are so eager to help and when they know how to help you, it makes everything easier.

Your family and friends will also help you weather the the emotional roller coaster you endure, which can be overwhelming at times. How much harder would this process be without the endless stream of people who've come and stayed with me, cooked for me, come for the day to sit with me, driven me to an appointment, sent me a kind note, offered me wise counsel and listened to me rejoice or completely melt down. I hope you have people in your life who not only nurse you physically, but also emotionally.
Brain Surgery Recovery Blog
I love being the victim the of drive by cupcaking!
Left on our doorstep by dear friends.


Please click here for Part II of this post.


A very big thank you to Kent for patiently helping me type this post!