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Wednesday, May 6, 2015

Six

brain surgery recovery AVM

Try not to think of this as a terrible, blurry, ambiguous photography of plant life. See beyond that to what it actually is - terrible, blurry photography of plant life that represents two major milestones in my life.

There are two plants pictured plants here. The first is that squat green guy in the right foreground situated amongst rocks and what I believe botanists call "a mossy substance". It was gifted to me six months ago by my parents and my in-laws the day of my brain surgery. Remarkably, Kent and I - mostly Kent - have been able to keep this little guy alive. We are sure there is some great metaphorical parallel between this plant, its surviving amid his rocky little environment and us but we are content to leave it in the realm of the obscure. 

The second plant you see walked into my life this very afternoon in the arms of my husband in recognition of my six month post-craniotomy anniversary. It is bright pink and lovely and smells absolutely divine - a token of beauty most welcome amid a day that carries with it many mixed emotions.

To that end, I have so much I have been meaning to tell you but for the first time in my life, I found myself lacking words. On those days, I rely on hugs or quiet space or warm baths and Kent understands. But when you add my lack of verbiage to the fact that my emotions have been ever evolving over the past several months the result has been a long, pregnant silence here in Blogville. 

But for now...
Here is to growing though there be rocks.
Here is to fragrant pink blossoms in the arms of your husband.
Here is to knowing you don't always need words to be heard. 
Here is to six months.




Monday, January 19, 2015

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

  • Blood Builder Brain Surgery RecoveryProtein 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.
prepare for brain surgery
  • 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...
recovering from brain surgery
I hope you enjoy this
curious photo of me hugging
my wedge pillow
.
  • 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.
    items to buy for brain surgery
  • 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
craniotomy recovery tips
  • 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
    showering after brain surgery
    A kitschy photo to showcase my shower time favorites?
    You bet!
    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 understand that I am quite certain 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 most from 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, to discuss them here - I did not. They have absolutely no idea who I am nor do they likely care to.

    Sunday, January 11, 2015

    Redux

    I know. Not but two posts ago I was lamenting about people who abandoned their blogs at critical junctures and then I proceeded to promptly abandon mine.

    The irony is not lost on me so please accept this  humble mea culpa.

    The last few weeks brought several new developments my way. One of the most significant is that I have regained some of my vision. Where before the left half of my vision was entirely gone in both eyes, I have now regained a full ring of peripheral vision. This allows me to navigate crowds with a bit more ease because I can gauge more accurately from where people are coming. I am still missing the center left of my vision in each eye so if I focus on someone's nose, I still only see half their face. However, I am learning to compensate for this as time goes on as well as refining my reading and writing skills.To help illustrate  my progress, I give you this homemade eyeball rendering:

    Also, right before going back to Michigan for the holiday, I was able to connect with the extraordinary Dr. Suleiman Alibhai. He specializes in treating people who have vision loss and spent an hour and half answering my questions, explaining therapy options and connecting me with local resources to help me adjust to my current sight. I left his office infused with confidence, gratitude and armed with information to move forward.

    Soon after that appointment, Kent and I headed up to Michigan to spend two weeks over Christmas and New Year with our families.  I spent a lot of time doing this:
     
    The "this" to which I refer is indeed posing in front of Christmas trees. I also spend lots of time loafing around in penguin pajamas, sipping coffee and documenting the experience through poignant selfies. In between that demanding schedule, Kent and I also spent a great deal of time with family and loved ones.

    We've actually seen our parents more throughout his year than in years past because of all my procedures. At some point it dawned on me how refreshing it was seeing them just because it was a normal family thing to do this time of year. Our time together wasn't in any way connected to a momentous medical event looming on the horizon and it was a welcome step back toward normalcy.

    Another other big change we learned about recently  was that we'll be moving abroad this year to Europe.  We're excited about it and Kent has already started learning the local language so we'll know how to find the local chocolate shop and other similarly important things. We'll be leaving this summer and stay  for a couple of years. I'm sure "Jenna Loosed on the Unsuspecting People of Europe" could be an anthology unto itself. 

    Also this month was my two month post-craniotomy check up with my neurosurgeon. Dr. Huang was incredibly pleased with my progress, as am I. My energy levels continue to increase significantly with each passing week. I have zero pain and am off all my meds from surgery. Most significantly, I made it past the first few weeks where my risk of having a stroke or developing seizures was high. Good job, brain! You did it. 

    It is also a thrill to say that I haven't had a single migraine since my surgery. I went from having 3-5 per week to zero these past two months. It's amazing and we are ever so optimistic  my AVM was indeed the main culprit behind my lifelong battle with migraines.

    The only blips on the radar are that my legs are still numb to the touch on the outside of my thigh - a result of the padding putting pressure on my nerves through my 15 hour surgery. I'd describe this malady as odd more than anything.  The vast majority of the time, I'm not even aware of it. The other small blip is I have one spot on my scalp/incision that seems reluctant to make the final push to fully healed. Dr. Huang said that spot is likely reacting to the stitches and staples just under the skin but it's nothing major.All in all, an excellent two month anniversary report.

    I have more to tell you - including my foray into the uncharted waters of Vision Restoration Therapy. For my dear fellow AVMers whose own surgeries are coming soon,  part two of my What To Expect post is being put together now. Thanks for your patience! 

    Thursday, December 11, 2014

    How I See It

    I've had several people ask for an update on my vision and truthfully, I haven't quite known how to say what I want to say. I still don't, to be honest. It's not that I mind talking about it, it's just up until this point it's sometimes been hard to handle the responses I get to the updates.  Often it's just nice to talk about it, answer questions, and hear something as simple as, "I'm sorry you're dealing with this right now". I think people feel complled to cheer you or make it better with reassuring phrases, but the truth is, the fact that you asked and just quietly listened is truly the best thing of all. Bonus points if you acknowledge how awesome my husband has been through all of this because he has been absolutely momentous. He makes me proud every single day with his thoughtfulness and patience.

    Anyway, here is my rather perfunctory update on my vision:
     
    One of the reasons for my delay in being discharged from Hopkins after my surgery was that I needed to have a vision test. My doctors wanted to establish a baseline of what had been lost during the surgery. As the anesthesia wore off in those first few hours and days, I remember becoming increasingly aware that whatever I had lost this time was much more profound than last time. Still, I wasn't terribly panicked as  there was a certain sense of familiarity and I had been forewarned this was a possibility. I think I also felt reassured because I had a vague memory of Dr. Huang visiting me and saying she was pleased with how the surgery had gone and that she was able to take out minimal healthy brain tissue.

    The first few weeks home went well for the most part. I think I did better overall this time in adjusting to things like walking, eating, and other basic daily functions like putting toothpaste on my toothbrush, etc. Emotionally, I had a few moments of sadness and tears, but they were more based in a temporary frustration and self-pity. During that time I think I was still operating under the assumption that this vision loss was like last time and was mainly related to swelling in my brain that needed time to resolve.

    During those early weeks, it was exhausting to see and interpret the world. There was absolutely no point in looking at the television - it was virtually an indistinguishable blob of color. During conversations, it was nauseating to try and look at people and focus on their faces. People make a ton of tiny movements when they speak and my eyes were constantly trying to focus and make sense of the half of their face I could see. I wound up having to look beyond them when in conversation, which was hard. I can't stand not looking at people when I talk to them.

    Then one day, I turned on the television to listen to the news and I realized I could make sense of the picture I was seeing before me! A blonde anchor in a pink blazer! I was so excited! Sure, the image was still wonky and warped, but I could distinguish what I was seeing! I ran out of the room, scaring my mom to death and told her about the change. We were both so excited.Later that week I had my stitches removed and Dr. Huang was encouraged by the news of the change in my vision. She hypothesized the swelling in my brain had gone down which accounted for the sudden improvement.

    Then, on December 3, Kent and I trekked back up to the Wilmer Eye Institute at Johns Hopkins to see Dr. Neil Miller. It was another long day of tests and at the end he confirmed what we had suspected, I had a complete homonymous hemianopsia in the left field of each of my eyes. This means a full half of my vision in  both eyes is gone as opposed to a quarter like last time.


    I took that news pretty well since I had been expecting it, but then he added "there really isn't any improvement between the test you took right after surgery and the one you took today."

    Boom.
    Emotional sucker punch right to the gut. 

    I was stunned, and confused, and disheartened. I could feel at that moment some part of me starting to come unhinged. He added that we still had time. That we were one month into the three month recovery window before they start to consider the loss permanent. But in that moment, all I could hear was "there has been no change" and the sting of those words growing more and more painful. He gave me another test which would hopefully be another way to measure my progress and then we were on our way with a recommendation to start low vision therapy.

    I held it together pretty well until about 11p.m. that same night at which point I completely fell apart. I started second guessing everything. Why had I so stupidly agreed to do this surgery knowing full well this was a risk? Should I have chosen radiation therapy instead which posed a lower risk to my vision? Should I have not treated it at all?

    I started thinking about the things I might miss. I'm not even 30 yet and I could go the rest of my life - the next 50 years - seeing only half the world.  Would I ever see my husband's face in it's entirety again? My own face? The faces of any children we might have? What about all the fabulous things I want to see in countries I've only dreamed about? 

    I thought about the practicalities. Will reading and writing ever not be a painstaking or seemingly impossible task? Will I ever be able to drive again? Does walking in crowds ever get less anxiety-inducing? 

    Then I made the epic mistake of Googling recovery statistics for people with homonymous hemianopsia and really sent myself into a tailspin then. Google is always a harbinger of doom when it comes to matters of medicine and even though I knew that, I couldn't stop reading.

    The appointment with Dr. Miller pretty much set in motion a 24 hour cycle of crying, confusion, despair, and doubt. Overarching it was a terrible sense that I had brought this on myself and without question, the surgery was the biggest mistake of my life.

    When I realized I wasn't going to be able to stop this cycle on my own in a timely fashion, I knew exactly who I needed to call. I am thankful to say I have several wise people in my life who can minister to me in times of crisis. But for some reason, I knew that this person in particular could remind me of the fundamental truths and shared beliefs I needed to hear just then. So we talked and my mind calmed and my soul was given the CPR it so desperately needed. I shared the wisdom I was told over the phone with Kent and we were both washed in rest and relief.

    I remember reading in a post-craniotomy blog about the emotions of brain surgery. The author said that right after surgery there was this high and incredible sense of "Huzzah! I survived!" and then a few weeks later, a bit of a crash when you have to cope with the some of the hard truths of recovery. It seems this is true for me as well. There is such an emotional aspect to healing after a major event like this, particularly if you are dealing with deficits or other challenges.
     
    Today, I still feel rooted in a sense of calm after being picked up and dusted off, so to speak. I have been able to make peace with my decisions as well as the things that are out of my control. However, I know that healing - and life in general - is cycle of ups and downs, fear and rejoicing. I am sure there will be times to come where I need to be reminded of the truths I had spoken to me and times when I can be that source of encouragement for others.

    Currently, I still see half the world. Your brain doesn't allow you to see black so if I were to sit across the table from you and focus on the area of your nose, I would see one half of your face rather well, but the other half simply wouldn't be there. That half of the world isn't dark or blacked out, it's just simply...missing. It's really hard to explain and I don't think I fully appreciated Dr. Huang saying it was a hard form of loss to cope with until I experienced it. The good news is, I am finding little ways to adapt all the time and the low vision therapy I mentioned earlier is specifically designed to teach practical ways to function in this new world. I am looking forward to starting that in early January since Dr. Miller said no matter what my outcome, it's better to have started early.  In the meantime, I rely on trial and error, patience, voice dictation software like Siri, and Kent for assistance.

    There are still glimmers of time in which I think some things are changing/improving with my sight but it really is so incredibly hard to know. Perhaps I am also learning how to better adapt to what I see, but that's a victory too.

    Anyway, I hope you don't read this and get the mistaken impression that I am sitting in my bath tub about to plug in a toaster or something,. I am most certainly not at the end of my rope by any means, but the intent of this blog has always been to be honest. It's important to tell you the entire story instead of just the good parts since the stories of our struggle can serve a beautiful purpose if we give them the chance. 






    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
    brain surgery tips

    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 hate 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.

    craniotomy recovery
    A one mile victory
    3 weeks post-op
    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.
    recovering from brain surgery
    Cooking me a delicious, healing meal
    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! 






    Sunday, November 23, 2014

    Two Weeks, One Follow-up and a Cupcake

    This past Thursday marked two weeks since the operation.  The two week milestone meant a follow-up appointment with the surgeon was required and the removal of the stitches was finally at hand. Jenna had been looking forward to this day for many reasons but the two most pressing were that she had hoped that the removal of the stitches would give her some relief from the constant itching sensation (which she wasn't allowed so satisfy by scratching) and she would finally get to talk to the surgeon about the surgery.

    But before I talk about the follow-up discussion with the surgeon, we wanted to share some photos showing the progression of healing that two weeks has brought to her incision.  For those of you who know Jenna, know that she has very thick hair and it is evident through these pictures that it is also very fast growing. If you look back at yesterday's post you will see the picture directly after surgery as a reference for what to expect in two weeks of healing.

    Three Days
    One Week
    Two Weeks
    Two Weeks and No More Stiches
    As you can see two weeks has made a huge improvement in her incision.  At this point it isn't tender to the touch and she is able to wash it with baby shampoo and a gentle touch.  In case you are wondering, the purple looking spots aren't any weird bruising but rather stubborn  permanent marker used prior to the incision to highlight the location of the incision.

    On Friday we all got in the car and once again made the drive to Baltimore to see the surgeon and get some of our questions answered.  I was concerned that the stitch removal process would cause her significant pain but the surgeon (who removed the stitches herself) said that there would be minimal pain involved.  It turned out that she was correct and aside from a little tugging in one spot they came out in under 5 minutes and mostly pain free.  She was told that her healing looked to be going extremely well and the surgeon didn't see any concerns whatsoever.  She again expressed that she hoped her vision would improve but that it wouldn't be a fast process but she hoped it would be a steady improvement over the next two months. She said that the incision healing would be complete within the next 1-2 weeks, the soft tissue healing in 4-5 weeks and the bone healing could take up to a year. Based on Jenna's current progress she relaxed her movement restrictions and said that she could continue to increase her return to normal life. She said simply to take it easy for the next two months listening for the natural warning signs of her body.  With no real way to express the level of genuine gratitude required for the surgical expertise provided, Jenna wholeheartedly thanked Dr. Huang and we bid her farewell until our six week follow-up.


    No, I didn't forget about the cupcakes... Right after our appointment we drove to one of Jenna's new found cupcake hot spots in Baltimore called Midnight Confections and enjoyed a celebratory treat. Relishing again how far she has come in the past couple of weeks.

    As an exciting conclusion to the week.  Jenna woke up just the other day and realized for the first time that some part of her vision was indeed better.  She is having a hard time describing exactly what it is, but prior to that, I had asked what of her eyes she could see looking straight in the mirror.  Her response had been, the right half of her right eyebrow.  Now she is able to see all of her right eye and about three quarters of her left eye.  There still is some fuzziness in between the two and the rest of her face is not all quite there yet but we are certainly happy for all the vision improvements that come her way.

    Jenna's mom leaves us tomorrow and it will be just the two of us from here on out. The prospect seems a little surreal, but it's one more sign that life is slowly returning to a new normal.

    Saturday, November 22, 2014

    A Look Back

    The past two weeks have been a blur for Jenna and I.  Of course she has had the harder load to carry but even me sitting down to write this blog post has seemed a daunting task.  I feel in part because of all of the emotion that the past two weeks has brought out in all of us and partly just from sheer exhaustion.  But after two weeks I feel that the time has come for me to recount the details of the day before the surgery, the surgery itself, and the ensuing recovery.  For the many family members who may have already heard the news bear with me as I repeat the details but for those going through a similar experience Jenna and I wanted to share our journey. Similar to the first embolization post I am going to break this down by dates and milestones so that you don't get lost in the diatribe of my wandering mind as I try to recapitulate all that occurred. So feel free to bounce around to what interests you.

    November 5 (The day before the surgery)

    The day before surgery seems like a distant memory at this point but it was important in many ways.  Both of our parents had come into town to support us during what lay ahead and we spent the morning and afternoon with them trying to imagine it as any other family gathering.  Although the original hope was that we could spend the whole evening at home, we found out about a week before that Jenna would have to go to Hopkins for a mapping MRI the night before the surgery.  This MRI was used for the surgeon and her team to have a recent view of the AVM and be able to properly locate the best incision site.
    This is Jenna immediately before to the mapping MRI.  The MRI itself took about 45 minutes and I was allowed to sit in the room with her the entire time about 10 feet from the machine.  The green dots you see allowed the surgeons the next day to align the surgical equipment with precision to the MRI images.  This meant of course that she had to wear these wonderful fashion statements to the dinner that followed the MRI and the rest of the evening.  Of course, as is typical with her personality, she didn't seem to mind and wore them with pride.  After dinner we said our goodbyes to our family and went to spend the rest of the night attempting to sleep. 

    November 6 (The big day)

    Surgery was slated to start at 8:30 am and as is typical they ask you to get there two hours prior.  So we dragged ourselves out of bed after a night of mediocre sleep to the surgical waiting room at 6:30 am. Surprisingly, she was taken back within a few minutes to begin the pre-surgery intake and IV line placements.  As usual this was a pretty straight forward process requiring several signatures stating you understand all of the risks, stating you understand what procedure you are here for, and finally a quick health screening with IV placement.  Everything went quickly and within a half hour I was sitting with her in the holding area while both sets of parents took the time to share their love, pray with her, and encourage her one last time. Then it was just her and I saying our goodbyes.  Of course this was a hard time but at the same time I feel that both of us were granted a sense of peace tempered with a sense of shock that this moment that had seemingly been so long in coming and yet at the same time was all of a sudden upon us.

    They wheeled her off as I waved goodbye to go wait in the waiting room for what was expected to be 10-12 hours.  This expectation of a long day in the waiting room helped us pace ourselves.  Each of us dealt with the stress in a different way.  I tried to lose myself in a fanciful tale in a book; her mom in learning a new game on the Ipad; her dad in bouncing between three books, a newspaper, a magazine, and Sudoku; my mom in trying to talk about other matters; and my dad who read and walked around.  You could watch as each of us took our time to stop and pray throughout the day that her surgery would go smoothly.  All in all I would say we handled it well until the 10 hour point had arrived and passed, then the 11 hour point, 12 hour point, 13 hour point.  We were given an update every 2-3 hours but it was always pretty much the same - she is still in surgery and she is doing fine. Of course what that really meant, we did not know.  Finally at about 9:30 pm we heard that she had completed surgery and was being moved to the recovery area.  This was a grueling 15 hours after we had arrived that morning and we were anxious to talk with the doctor and then to see her.

    Dr. Huang stopped by about a half hour later and informed us that the surgery had indeed gone well but that it had taken longer than expected due to the fact that she had to spend a lot of careful time trying to ensure she had gotten all of the AVM without removing too much healthy brain tissue.  She said that she had given Jenna a unit of blood due to the loss she had undergone from the AVM removal and that the bad news was that the inter-operative angiogram that would confirm all of the AVM had been removed had not functioned as required.  That meant that a follow-up angiogram would have to be conducted the following day to ensure that everything had been removed and no more surgery was required.  She told us that it had required 40 screws and multiple plates to re-secure the section of her skull back in place and, on a humorous note, she said to tell Jenna that she had an unusually thick skull.  Finally, she let us know that Jenna was awake and in the Neurological Critical Care Unit which meant we would be able to see her soon. So we said our thank yous and sat back to wait for our time to see Jenna post-surgery.

    We assumed this wait would be a quick one, however, it turned out not to be so.  After sitting till almost midnight with no signs of seeing Jenna anytime soon both sets of parents decided that they needed to get some sleep so that they could back me up the next day.  I waited on in the waiting room to see my sorely missed wife.  Finally, close to 1 am they came and brought me to her room. Although yes she was "awake" she was mostly incoherent from the long time under anesthesia.  I overheard the nurse tell her that her husband was here and she smiled a little which was certainly a heart warming and comforting moment.


    She was super tired and would fall asleep in between every one of the nurses' questions throughout the night.  At this point I already started to notice the lack of vision on her left side as they gave her rudimentary vision tests. However, besides the vision loss, she passed all of the other neurological exams with ease.  Additionally, she did not experience any migraines and the pain that she did have was easily managed. So, in between nurse visits every hour I curled up on the recliner next to her and passed in and out of sleep.

    November 7 (Initial recovery)

    Even two weeks later she remembers nothing of that first evening nor much from the first couple days.  That next day they removed the head wrap for the final time in order to start to let the incision breathe.
    In this picture you can see a clear drain line that drained excess fluid from under the scalp.  This necessary fixture would prove to be the hardest part of the first couple of days of her recovery which I will reference in the next section.  

    All in all, that first day was similar to the first evening.  Jenna was very tired and lethargic, she was required to do hourly neurological checks to make sure she wasn't having any bleeding or unchecked swelling, and she continued to have manageable pain levels.  The constant expectation this day was for the follow-up angiogram in order to show if more surgery would be required.  We were told that if more surgery should be required it would have to be one of the following days.  So we took turns sitting by Jenna's side waiting for the angiogram to come.  It finally did come in the early evening and they took her off to the radiology suite for the 2-3 hour procedure.  Although this doesn't seem like a major procedure, this was the very procedure we were nervous about back in May but with everything else that had gone on it seemed minuscule in comparison.  The biggest frustration at this point was that she had a large catheter placed in her femoral artery throughout the surgery which was removed directly afterwards but now another one would have to be put in for this angiogram. Every time one of these catheters was removed pressure had to be held for 30 minutes to an hour to ensure proper clotting.  In the past that had resulted in a significant amount of pain so we were all holding our breath and praying that this time would be much less painful and the results would show no more surgery was needed.

    As was typical, three hours came and went and we didn't hear anything about her being back so I casually strolled back acting as if I needed something from my bag I left in her room.  In doing so I ran across the resident neuro-interventionalist who I had spent many occasions talking to during the holding pressure sessions aforementioned.  He walked right up to me and told me that he had just finished holding pressure and that she had done very well.  Then he leaned a little closer and said the angiogram looked great and all of the AVM was gone.  What a relief.  I am sure an audible sigh escaped from my lips as I felt for the first time that now the recovery could begin.  I thanked him for sharing this information and I went out to tell our families the great news.

    November 8-11 (The hospital stay)

    With all of the angiograms and arterial catheters behind her, Jenna for the first time could start sitting up and shortly after transition from water and juice back to solid foods.  It was on her third day that she ate solid food again and that same day they removed her bladder catheter.  This heralded her return to her feet as she was now required to get up to use the bathroom. From here she started using the chair in her room for a change of venue as well as a nicer place to eat her meals.

    For the record, Jenna hates this picture but I was so excited to see her sitting up.
    The drain as previously referenced was intended to stay in the first two days while the initial healing took place, so on the third day some of the surgical fellows came to remove it.  This first attempted removal turned out to be the most painful part of her hospital stay as at one point they had two people pulling on the drain line.  After several minutes they gave up saying that they would have to come back and try again.  The pain was very intense and brought Jenna to tears which prompted us to demand that next time they give her pain medication prior to attempting the removal.  So the next day they came back again to try and remove the drain and again they started pulling before pain medication was administered and again it came out a little but didn't come out all the way.  At this point the surgeon had stopped by and said that they would just leave it in until the stitches came out but that it would require us to stay in the hospital all the way until Thursday when we expected to leave on Monday. Then the following day they came back in again and started pulling, contrary to what the surgeon had just said and again without pain medication.  This time bringing tears to Jenna's eyes again he was able to get the drain removed, promising to go off and bring back pain medication (which he never did). 

    This was by far our most negative experience we had at Johns Hopkins.  The team of surgical fellows and residents did not possess any good form of bedside manner and they almost never followed through on any of their promises.  The positive with this experience however, was now the drain was out which we hoped would mean we could be shortly discharged.  The biggest irony of hospitals stays is that everyone including the doctors and nurses were open in telling you that a hospital is not a good place to recover.  We found that to absolutely be the case.  There are almost constant interruptions 24 hours a day.  Even after we were moved to the regular neurological recovery area on day four which was supposedly checkups only every four hours we had constant interruptions.  So sleep was limited to 30 minute to one hour segments throughout the day and night.  This was due to the fact that yes, the main checkups occurred every four hours, but there were so many different groups of people that came in that it never fell all at once but rather constantly throughout the day and night.

    By day six in the hospital we had reached the end of our patience in waiting to be discharged and our lack of quality sleep.  Jenna was continuing to move around more and more easily.  She was up and walking between 4-6 laps of the unit a day.  Her vision had not improved and we were advised that most likely she was experiencing a complete loss of the left half of her vision in both eyes.  Although this was an extreme struggle for her to see, there was nothing we could do in the hospital so we started to push to be released.  Luckily for us one of Jenna's two best friends in the world is a nurse practitioner and she was now staying with us in lieu of our parents heading back home to Michigan on day five.  She was able to help us ask the right questions and push the right amount in order to get the discharge process started.  We determined that the only reason we hadn't been released was that they wanted a visual field test done prior to her discharge as a baseline.  Since no one had heard back from the neuro-ophthalmology team for a couple of days we decided that this could just wait till we came back for a follow-up.

    Needless to say, shortly after they agreed to start the discharge papers we received news that the neuro-ophthalmology team was ready to take Jenna down for her visual field test. So as her friend escorted down for her visual field testing I discussed the discharge procedure with the discharging physicians assistant.  By the time they got back I was headed down to the pharmacy to fill her prescriptions and within two hours I was pushing her down the hall and towards our car for the drive home.  Seven days of bad sleep and intense stress later we were returning back home with what we had dreaded all year behind us.

    November 12-20 (Recovering at home)

    Before the surgery I thought that I would be scared to leave the hospital and take care of Jenna at home.  But after all we had been through and with our good friends waiting to help us at home I felt more supported than I ever expected.  At home, Jenna could for the first time sleep mostly through the night without interruptions; she could take her time adjusting to her changed vision; and learn to best manage her pain.  We were blessed with the gift of tons of frozen meals to make the transition easier and take stress away from other areas of our life -  some from my mother and the rest from Jenna's other best friend who flew in just to help us during recovery.  I was able to partially return to work with people at the house 24 hours a day to help Jenna around.

    All in all, Jenna's recovery went better than I expected.  She regained more strength each day and continued to go on daily walks.  She still slept a lot - between 14-18 hours a day but when she was awake she seemed like her same old self.  However, on the third day home we hit what Jenna calls one of the worst days of her life.   On that day, she experienced hours of the most intense pain of her life.  I felt totally helpless and again, had it not been for her nurse practitioner friend, we would have found ourselves back in the hospital. She knew the steps to take to get her through and what to look for that would have heralded a more major condition.  We all sat with her throughout the evening and into the night.  I made several runs to the drug store for supplies and by early morning she had turned the corner.  Another hurdle had been crossed and although it was a negative day the relief of her pain finally going away still fills me with a sense of happiness.

    Since then Jenna has just continued to get better each day.  We left the house for the first time on day 10 post surgery and then again two days later.  She still tires easily but  her return to normalcy surprised us all.  Whereas, I expected her pain to be the hardest part, it continued to be very manageable throughout the entire recovery period.  In turn hardest part continues to be the vision loss. The image below, which I borrowed from the internet, best visualizes what I can understand Jenna is seeing.  Her left field of vision is pretty much totally gone and what she has left is an amalgamation of her two right fields of vision.  She does well around the house were she is familiar with everything but she relies on companions when leaving the house into more uncharted territory.    


    So here we sit two weeks post surgery with almost everything behind us.  I know for certain that the everything-behind part has yet to sink in and I know we will have hurdles yet to come but what a relief it feels to make it to where we currently stand.  As always, my biggest support through this has been my wife.  She has had the best attitude through everything.  I can't imagine how I would be going through the same thing but I can tell you with certainty that it wouldn't be anywhere near as strong as Jenna has been.  She never stopped laughing with me and she never stopped being positive. She is the best witness of God's love that I have seen and I continue to be thankful for what a wonderful gift I have been given in her.  

    This has been the most mentally, emotionally, and spiritually trying time for me and we wouldn't have made it without every one of you and your thoughts and prayers.

    As always, thank you...