Favorite Things: Brain Surgery Recovery Edition

Alternate working title: What to Expect When You're Expecting Brain Surgery: Part II. 

For those of you interested in reading Part I, it can be found here. 

Usually, my idea of preparing for something involves...not preparing. I am a baptism-by-fire sort of girl and it's served me well for the majority of my life. However, as my brain surgery date drew nearer and nearer, I felt a compelling need to organize and prepare for my recovery period. With no real idea of what I was in for, I asked some of my nurse friends for advice, combed the internet for input and took an educated guess about what I might need. I compiled a list of things I thought would be helpful to ease a person with a freshly cracked open noggin through those first few weeks of recovery and am actually very grateful I had most of them.

For those of you soon to be facing your own recovery from a craniotomy, please find below a few of my favorite items from my convalescence:

Prepping For Surgery

• Protein and Iron. I had about two and half weeks to prepare for my surgery. Two of my friends who are nurses recommended I up my protein intake and begin an iron supplement. Protein is critical in helping your body heal itself and the iron was to help negate the effects of blood loss. I used Blood Builder by MegaFood as an iron supplement and added protein bars and shakes to my already protein bolstered diet.

• Prepare to Regenerate - After your brain has been assailed, it's a good idea to start doing activities that encourage it to heal. Before you go in, download brain stimulating games to your tablet or phone so they're ready to be played when you feel up to it. Lumosity, Sudoku, Scrabble. Buy some puzzles or word search books - anything you enjoy that gets your gray matter chugging along again.

• Get a Living Will - Put out of your mind the silly notion that this is morbid. It's smart. I had mine filled out and notarized after carefully considering what options I wanted available to me in the event something unexpected happened. It's a valuable communication tool for loved ones and medical staff and you can ask your hospital to provide you with a free copy to fill out. Check to see if your state requires notarization.

• Freezer Meals - My embolizations taught me two things. 1) I should never try and cook after someone has been tinkering with my brain and 2) Your care team is tired too and meal planning can be oddly stressful. I happen to have one of the best friends in the world who flew in from Chicago the weekend after my surgery just to cook for us. Between her and my mother-in-law, our freezer was stocked full of meals. If cooking isn't your forte, at least buy several frozen meals so you don't have to think about food prep in the throes of recovery.

• Keep the Lights On - If you are in charge of overseeing your household bills and expenses, make sure you have a system in place that ensures they continue to be taken care of while you rest. Believe you me, your electricity bill due date will not be foremost in your mind the first month or three. Have any necessary login information, account numbers and due dates accessible to the person you temporarily pass the reins to. 

  Comfort Items

• Button Down Pajamas - You aren't going to want to be yanking pajama tops over your head and incision those first few days and weeks. Trust. Buy some PJs that button down and I recommend several comfortable sets as you will pretty much be living in them for the next several weeks. You'll also change them more than you think since some medications make you sweat, sometimes you have poor coordination and spill food/drink, sometimes your cat (whom you've neglected to groom in all the confusion) will shed all over you, etc...

• Wedge Pillow and L-Pillow - Were I a writer of sonnets, I would compose one just for these two pillows. But since I am no Will Shakespeare, I will just gush about them here for a moment. Sometimes after brain surgery, you may need to sleep at a certain angle to help facilitate healing. I was able to negate building a dreaded, floppy pillow fort every night by instead purchasing this little delight - the InteVision Foam Wedge Pillow. I'm telling you, I was so worried about being able to sleep comfortably after my surgery, but the wedge pillow combined with this "L" shaped pillow by Contour provided a downright blissful combination for me. 

• Heating Pad - Another heroic item in my opinion. I had my surgery in November, but even if I'd had it in August, I would've still used my heating pad. You will likely be sore from your positioning during surgery and this is a great way to ease those muscle aches. Or perhaps you're like me, and just like the warmth and will spend much of your time tethered to it.

• Movies/Music/Podcasts/Audio books - You're going to sleep a ton that first stretch home, but in between naps you'll want something to pass the time. Download  your favorites in advance, but otherwise have fun exploring new genres.   

• Head Bands/Hair Ties - It probably depends on where your incision is, but I liked keeping my hair pulled back and out of the way. I found soft hair ties and wide, cloth head bands the most helpful and painless way of achieving this. If you're like me and hair ties have a lifespan comparable to that of gnat, buy a few packs so you always have one. I can't hold on to those things for more than a day at a time - it's a mystery.

• Night Light - You know the layout of your home pretty well, I know. But when it's 3am and you have a cocktail of potent drugs and a recovering brain to contend with - you're going to want a night light in your room so you don't accidentally sleep-navigate to your closet instead of your bathroom. Go ahead, ask me how I know. You'll also likely be waking up around the clock to have medicine given to you and it's a lot less disorienting to wake up to someone handing you pills in a soft light than pitch blackness. 

• Non-Squeeze Water Bottle - Water is essential during recovery but you may be a bit more clumsy than usual so a water bottle rather than a cup is nice. I liked having one I didn't need to squeeze because my wrists were sore for several weeks after surgery from the arterial lines I'd had. 

Hygiene 

• Hand Sanitizer -You're going to inadvertently touch your incision more than you think. Wash your hands frequently, but hand sanitizer offers a nice alternative in between washings.  

• Facial Cleansing Wipes - Great for the hospital and at home when you're too tired to stand at the sink and want to expedite your daily routines. I liked them because I didn't even have to get out of bed to wash my face if I didn't want the hassle.

• Saline - I bought some saline to help keep my wound clean at home as well as help break up the blood and surgical gunk that was plastered to my skull and hair. Unfortunately, I totally forgot I had purchased it which was a bummer because I think it would've been useful. Oops.

• Pillow Case Liner - Real talk: sometimes your incision can weep a little during the healing process. If you are partial to your pillows, it might behoove you to buy some pillow protectors (not the plastic kind!) to preserve them.I found some cotton ones by Allersoft.

• Chux Pads - Chux pads are large, thin cotton pads with waterproof lining on the back. They are great to have on hand for the same reason as pillow protectors. You can drape them over the head of your sofa/recliner or anywhere your head might be resting to protect them from your wound. Also handy if you are prone to spilling while eating away from the table. Find at any medical supply store or Amazon.

Medical Equipment

• Blood Pressure Cuff - Your blood pressure is a great way for you or your care givers to tell if you're in distress. You can buy a simple digital monitor that goes around your wrist and you can convey the information to your physician if need be. We like ours made by Omron.

• Thermometer - It's important to monitor for signs of infection. If you're feeling "off" you'll want to be able to check your temperature. If you already have a thermometer, make sure it's actually working (unlike yours truly who just assumed it was).

• Pill Organizer - True story, you're going to have a lot of meds to keep straight. One of the ways to keep them all orderly is to buy a pill organizer that suits your fancy. Some have multiple slots for one day, some are just one slot per day you keep refilling for the next dose. Whatever system you think will work for you, I encourage you to try. We did a pill organizer, kept a paper chart and set phone alarms. It was a lot of medicine to keep organized!

Shower Time

• Shower Chair -  I went back and forth on whether I would need this post-surgery. I am so, so, so glad I purchased one! My first shower was over an hour because that's how long it took the skilled fingers of my long suffering and patient friend to work out the worst of matted blood and whatnot from around my incision. This was at a time when walking from the kitchen to the living room seemed like a marathon. You will likely need someone to help you during your first few bathing sessions and being able to sit is absolutely heavenly. Even after I could manage by myself, I still used the chair to conserve energy.

• Detachable  Shower Head with Hose - Buying this was the brain-child of my husband. It was very handy for the people who had to work on my hair over the course of several showers to have the option of focusing water in certain spots. It was also helpful to have to use in conjunction with
  the shower chair. Bonus points if you get a unit that allows for adjustable water pressure.  

• Space Heater -  Totally optional, but it's nice to get the bathroom toasty warm while showering.  The downside to all that water being directed on your head is the rest of you gets a bit cold. Having the bathroom preheated and warm helps negate the chilly factor.

• Plastic Comb - Keep in the shower as it's useful for working out the tangles, gunk and blood inevitably plastered throughout your hair. Use one you wouldn't mind tossing as it is almost impossible to restore to its original glory after doing battle with post-craniotomy hair.

• Baby Shampoo - The first several weeks after surgery you are limited to using baby shampoo only. I am not a fan of Johnson's, so I lumbered off to Target and bought Mustela 2 in 1 Hair and Body Wash, Shea Baby shampoo and Seventh Generation Baby Wash. Depending on your hair length, you will probably go through more than one bottle so purchase a couple.

So, there you have it. My personal favorites were my shower chair, pillows, soft button down pajamas and heating pad. Please know you can have a dandy of a recuperation without most of these items. At the end of the day, several of them are just niceties and the things you'll remember and need most during your recovery aren't, well, things at all.

I wish you the very best with your surgery and recovery, my friend!

 *Oh, and in case you have a suspicious mind like I do and are wondering if I received any compensation from any of these companies,- I did not. They have absolutely no idea who I am which is a shame because I feel I have  a real future in shower chair modeling. 

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*

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.

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! 

Spetzler-Martin

Allow me to back up for a moment. Arteriovenous malformations can occur pretty much anywhere on the body - hands, face, lungs, uterus, etc. - but of all the locations, brain AVMs seem to be the most rare. A special scale exists to grade AVMs of the brain called the Spetzler-Martin Scale which runs from grade one (the smallest and least invasive of eloquent brain) to grade five (large, deeply located and/or within eloquent brain).

During my research, I kept running across the name of Dr. Richard Spetzler, one of the namesakes of the scale and a figurehead in the field of brain AVMs. Once I realized he was still alive and practicing I knew I had to get him to look over my information and hear his opinion on my own case.

I was pretty much prepared to pester him to death in order to speak with him, but it turns out he was relatively easy to track down. In fact, on Sunday (3/2/14) I submitted all the reports and images I had thus far and by Tuesday, March 4, he had responded to me!

My first MRI report listed my AVM as being 5x5x6 centimeters which is quite large and invasive. However, my neuroradiologist told me it was actually much smaller and measured closer to 3x2.5x1.5 centimeters and a Grade II. I was still operating on that assumption when I got Spetzler's response.

Dr. Spetzler sized my AVM as being 5cm again and graded it a four out of five as it is large, involves eloquent brain, and has deep drainage into my straight sinus.

I can't lie, that knocked the wind out of me. Most surgeons won't operate on anything more than a grade II or possibly a grade III. I had allowed myself to believe mine was much smaller based on my visit to the radiologist and therefore had allowed myself to hope that given the small size, my side effects after a surgery might be minimal.


The report continued on to say that given my young age, I had a high risk of rupture in my lifetime (around 80%) and a rupture would result in vision loss as well as weakness and numbness on the left side of my body.The good news in all of this was that Dr. Spetzler felt embolization followed by a craniotomy was still an option for a cure and he offered to operate on me personally at his facility in Arizona.

I am still a little confused as to why the neuroradiologist told me it was so much smaller because in this game, every centimeter matters. I do not doubt his competency, but I do hope to have that clarified at some point by someone.

The next step is tomorrow (3/7/14), I have two separate appointments at Johns Hopkins in Baltimore. They are regarded as having the top neuro program in the country and employ some of the highest ranked neurosurgeons in the United States. I am hopeful to leave with an even clearer picture of what I am facing and to make a final decision on whether or not to operate or pursue other treatment options.