Brain Surgery Recovery, the Saga Continues

Two Weeks Plus

I closed the last blog entry just short of the two week mark, when I was going to get my staples removed at a follow-up appointment.  The day before this appointment I couldn't stand being inside any longer and joined my wife on one of her runs.  While I didn't run, I did manage to walk 2 miles.  I took it slow maintaining a 20:43/mile pace.  I felt pretty good up until the last 10 or 15 minutes and could tell I was tired and probably over doing it.  This made me a bit nervous, but to be honest I was really glad to be back outside.

The next day I did go back to the hospital and get my 30 staples removed as well as the stitch in my lower back.  Getting the staples out was a bit uncomfortable (more so than when I had my appendix removed), but was certainly tolerable. During the visit I did ask the nurse about physical activity limitations and if I could get back to running.  She made it clear that it was okay for me to get back out and start running again, but that I should take it slowly and not do too much too soon.

At the hospital with staples out

As I pointed out in my last blog entry I was running about 35 to 40 miles per week and running every day.  Going from that to zero was hard, but I knew I was going to have to be thoughtful as I got back into my routine.  The day after I got my staples out (which was day 12 post surgery) I did get back and walk another 2 miles.  I ran about a tenth of a mile at a time every so often to get my heart rate up and see how I felt.  The took my average time down to 14:37/mile, certainly quicker than two days earlier.  I also felt better overall after this run.

One thing I noticed was the clicking that I used to hear in my left ear while running occasionally had changed significantly.  Instead of a higher pitched short click noise as my right foot hit the trail it had turned into a much deeper slightly longer sound and it also felt like there was something in my ear, perhaps behind my ear drum.  Certainly something I need to follow with my ENT on when we meet again.  Perhaps a side effect of the surgery, or perhaps whatever we had seen on the MRI/CT to begin with has shifted.

My hair was growing back faster than I had anticipated and the scabs on the scar were healing quickly.  Everyday it seemed I had lost more of the scabs and that coupled with the hair growth was rendering my surgical scar less noticeable.  I would feel some sharp very short periods of pain around the scar occasionally and was told this was the nerves that had been damaged during the surgical procedure healing and that is normal.  At the two week mark I was just taking Tylenol as needed and by day 16 or so I was off all meds.


Getting Back to Running

I took three days off from my last activity and then did a three mile walk/run.  I slowed the pace back down overall to 17:45/mile since I wanted to go a little longer.  I was pleased with how I felt overall during the activity but was fairly wiped out that evening.  I have to admit it is hard to hold back when you get out there and just want to go all out without stopping for hours.  But at the end of the day I didn't want to set myself back so I was trying to proceed with caution so to speak.

On the 18th day post surgery I started back to work again full-time.  Since I work from home most days the transition was really great.  If I started to feel fatigued or simply needed to get away from the computer screen I had those options.  While not the release of getting out for a run, getting back to work was a sense of normalcy and help enforce the fact that I was indeed recovering.

Two days after my three mile run/walk I got back out for a 5 mile run.  I picked up the pace some and averaged 10:05/mile.  This felt great, I was able to take a few of my normal routes and ran to the local Starbucks for my standard quad shot Americano.

On my three week post surgery anniversary I got back out for a 5.5 mile run and clocked in at 9:27/mile.  I took a very similar route as the previous 5 mile run and worked more on my pacing to see how I felt.  Things felt somewhat normal again except for some irritation around the scar mostly due to wearing a hat.  The weather is cold and I wanted to protect my incision and ears.  I am still hearing the deeper sounding clicking in my ear, but seems to not last as long as it did the prior weeks.  After a mile or so it seems to stop.

Two days later I drove into Frederick for some flatter territory and did a total of 8.6 miles at an average pace of 9:19/mile.  Running through some new territory at the Mount Olivet Cemetery was great.  I hadn't run this area before and oddly enough, it was beautiful.  The weather was cool at 41F, just perfect.  Of course when I was done I ran to the local downtown Frederick Starbucks for my standard after run beverage.

Mt. Olivet Cemetery, memorial to Francis Scott Key

Rolling hills and monuments in Mt. Olivet Cemetery

Today, day 25 post surgery, I dove back into Frederick and did another 6.3 miles at an average pace of 8:46/mile.  Really starting to to get back to normal.  I use Strava to manage my runs (via a TomTom Spark 2) and I love filling in the Strava Heat Map by running all the roads/trails available in any given area.  Frederick is somewhat large, but I am slowly making progress getting it all covered.  It was really great to get back in Frederick and start working on this again.

All of the scabs on my scar have come off and with the continued growth of my hair it is really hard to notice the scar unless you really look for it. I was told not to cut my hair for 4 weeks after getting the staples removed.  I also have to go back in mid January for a followup CT Scan and consultation with the surgeon.  Hopefully that all goes well.

top left to bottom right: day 5, day 8, day 12, day 14, day 20 and day 22

Thank you to all the readers who have posted comments on social media wishing me well.  I really do appreciate your words of encouragement as well as appreciate the fact that you took the time to read about my story.  I will post a short summary following my January visit.

A Tale of a Runners Recovery from Brain Surgery

I thought it would be useful to document my journey through brain surgery and back into running.  If for no other reason than for me to be able to look back on this and see how I managed to get through it, and perhaps it can help at least one other person get through something similar.

Brain surgery wasn't something that was on my bucket list by any means, but after months of trying to figure out why I was losing my hearing and got tinnitus in my left ear, that is where the diagnosis led me.


Backstory

I have had very serious ear infections my whole life.  Serious enough that on many occasions I have had my ear drums burst in both ears.  While doctors had recommended as a child that I get tubes in my ears this wasn't something that was done as often as perhaps it is now.  At any rate they wained in frequency as I got older and I learned how to keep them at bay, but every year or two I would get one.

About four years ago (2012) I went through one of those most severe cases I had ever experienced.  I ended up needing to go to a local ENT and get very specific treatments for about 7 to 10 days.  After the infection cleared up and the ear drums healed I had a hearing test and everything seemed to go back to normal.

About 6 to 8 months ago I noticed that the hearing in my left ear wasn't as clear and things sounded muted.  I also started to hear a constant white noise sound in my ear that was somewhat faint.  It also felt as though I had something stuck in my ear.  I went back to my local ENT and he was able to remove what looked like remnants from an ear drum burst in my left ear, but after a hearing test we found I lost about 50% of my hearing in my left ear.

There was no visible damage in my inner ear that could explain this to him and placing tuning forks on my nose (and various other locations) seemed to reveal that I had some kind of concussive hearing issue in my left ear.  While I had not experienced any type of head injury that could of caused this, nor was I exposed to any abnormally loud noises, his initial conclusion was that I could have either scar tissue and/or fluid trapped behind my eardrum.  Since tests showed that ear drum movement seemed to be normal, odds were that it was scar tissue.  He quickly referred me to Dr. David Eisenman, an ENT at University of Maryland Hospital in Baltimore.

Over the course of about 2 or 3 months we did two CT Scans and a high end MRI and believed that what I had was called Cephaloceles in its somewhat generic form.  In short, the MRI and CT scans showed that I was missing a part of my skull that separated my brain from my inner ear.  It looked like brain was herniating into the inner ear canal behind my ear drum and resting on the bones that transmit sound to the brain.

While there was a small chance that this wasn't the cause, the prudent course of action was to approach the inner ear from above the ear through the skull, remove the brain that has herniated and then repair the missing elements of the skull to prevent this from happening in the future.  If I were to get a serious ear infection at this point the infection could spread to the brain.

Since the ENT would need to get through my skull and under my brain (and perhaps remove some as well) I was referred to Dr. Howard Eisenberg, of the Neurosurgery Department of University of Maryland Hospital.  After a consultation visit with Dr. Eisenberg the surgery was scheduled for December 1, 2016.


Running

I am an avid runner, not a great or fast runner, but a near daily runner.  I was bit by the running bug late in life, about 3 years ago (2013) seriously, but since that time I have worked my way up to 17 half marathon races, 5 full marathons and a smattering of 5k, 10k, 15k and 10 milers in the mix.  I typically sign up for 5 to 10 races a year and summarize the event here on my blog.  I run about 40 miles per week on average covering 6 of the 7 days of the week.

I love doing back to back races on consecutive days so for the past 16 months or so that is how my training has been geared versus outright speed.  My next back to back race is the Backyard to Vineyard Challenge at the Biltmore in Asheville, NC in March 2017.  After this race I would like to get back to training for speed and eventually qualify for the Boston Marathon.  That event, unlike brain surgery, is on my bucket list.  Check-out my previous blog posts for past single and multi-day racing events you might be interested in trying out.

As the surgery date approached I made sure to take advantage of every day to go out for a run.  I was extremely nervous about the procedure, things that could go wrong, the recovery time, and of course more serious issues that could arise.


Surgery Day

NOTE: My plan is to be as detailed here as I can recall; for the purpose of helping anyone else that might be going through something similar understand what they might go through to help them make decisions along the way.  If this doesn't sound palatable, just skip down to the subheading ICU.

In order to make getting to the hospital by 6am easier we stayed in Baltimore the night before the surgery.  Looked up a good restaurant for what depressingly to me could have been my last meal I guess, but all I knew is I wanted some good food a great glass of wine.  We ended up at Capital Grille on Pratt Street, walking distance from the hotel.

The food, decor, and service was outstanding.  It was expensive, even by my standards, but was totally worth it given what I knew my day was going to be like the next day.  In all for two drinks, two salads and two main courses, including tip, the bill was just shy of $200.

I slept better than I thought I would before surgery day, so up at 5am to get ready and then walk over to the hospital.  I got to the surgery waiting room on the 2nd floor right before 6am, did my paperwork, and then waited until 7:15am or so before I was called back for pre-op readiness.

After getting a quick blood pressure (BP) and temp, I got into the hospital gown, had an IV put in the top of my left hand and then waited.  It didn't take long before I realized they didn't tell my wife to come back so after about an hour I was able to get the attention of a passing nurse who said she would grab her, but that didn't happen.  I am sure she got side tracked.

At about 8:15 or 8:30am a team member from the Neurosurgery Department came in, put what looked like lifesavers all over my head and then took me for a MRI and CT Scan.  Basically they were putting "way points" on my head for GPS-like location markers so they knew where they were going during surgery.  While he was explaining all this to me I was totally focusing on his cool Neurosurgery Department Nike running jacket.  It was totally awesome looking with the University of Maryland Hospital logo and Department of Neurosurgery embroidered on it.  I totally wanted one as a running clothes hoard.  Although I am partial to Under Armour, I would have taken one if given to me.

After the scans happened they were able to grab my wife and bring her back.  At this point a close friend had joined my wife in the waiting room so she didn't have to wait the day alone.  I was really grateful that he was able to do this.

All "mapped" out for brain surgery

I started to see more and more folks as I got closer to having my surgery performed.  The OR nurse came in and introduced herself and gave me a quick overview of what was to transpire as well as the head intern (Dr. Patel I believe) Neurosurgeon that was going to assist in the operation.  He went over the highlight of the procedure and was also sporting the very desirable running jacket.

The last visit was from the anesthesiologist team.  The anesthesiologists gave me a more detailed run down on their role, the prep I would be going through and some of the recovery process before heading to ICU following surgery.

We discussed the drug they were going to give me right before heading to surgery to help me relax.  I had two very bad experiences with Valium in the past (it causes my BP and heart rate to drop significantly and I pass out), so they assured me the drug I was going to get wasn't in the same family.  So, while somewhat comforting I was a little nervous.

The next step was to have some blood work done to make sure things looked good.  Unfortunately a poorly printed label required that the blood be drawn a second time.  While I thought the "error" on the label after seeing it was acceptable to me, it wasn't to them.  I certainly didn't mind having blood drawn twice if this is how careful they were going to be during the actual surgery.  It was a good sign in my mind.

It was now close to 11:15am and the anesthesiologists came back in to start the process.  As he gave me the meds via the IV I felt incredible pain.  Something wasn't right.  He checked the lines and it all seemed to be correct so he tried again.  Once more I felt extreme sharp pain.  I have been through a few painful things in my life (arrow through my hand, kidney stones, a perforated appendix, broken foot, etc.) and this was by far the worse to date.  About 30 seconds later I could also tell I was going to pass out.  I was able to let the anesthesiologists know what was about to happen and then I was out.

I don't think I was out long, probably a minute or so, and when I came too I had 6 people standing around me, had IV fluids running and was on a BP cuff.  I could hear them saying my BP was around 80 over 40 and my HR was around 43 (my normal resting HR is about 53; a benefit of running).  After about 10 or 15 minutes I started to feel somewhat normal and we now had to decide what to do next.  They gave me the option to cancel the surgery but after all the anxiety leading up to this I wasn't about to do that if I didn't have too.  The anesthesiologists assured me that during the surgery they would be keeping a close eye on me and if anything happened they would take appropriate actions to take care of my safety.  For some reason I found this very reassuring and so we decided to proceed.

I was then wheeled back to my surgery room and my wife and friend were informed where to go on the third floor to wait.  The surgery was planned for about 6 hours or so including all the pre-op work that would need to be done first.

Once I was put into the OR I moved myself onto a very narrow operating table and the OR team immediately started getting me prepped.  The anesthesiologists started to run some new IVs.  Two on my right hand (one that was needed for surgery and the second a replacement for the one on my left hand that was hurting) as well as a arterial IV line in my left forearm so they could measure my BP in real time during surgery instead of waiting for the cuff.

At the same time, nursing staff started covering me with blankets since it was so cold and putting the compression leg gear on my legs to start compression during the long process to help prevent blood clots.  Personally I find that these feel great, basically a massage of sorts, but I do know people that don't care for them.

They were unable to get a new IV line in to replace the one on my left hand as the veins in my right hand kept collapsing.  I don't really understand why they didn't simply move up my right forearm, but after the arterial IV was in place they wanted to start pushing the drugs to put me to sleep.  As soon as they started pushing the drugs I felt that intense pain again.  I let them know of course, and they let me know that some of the discomfort was that the drugs do burn as they enter the blood stream.  While I was able to tell that was the case, that was only a minor discomfort to the overall pain.  I was trying to keep my composure, but one of the OR nurses could tell I wasn't doing well and came over to my right side and started to talk with me and rubbing my shoulder.

She asked me where I wanted to go when I fell asleep and I made some remark about going for a long run.  She said that sounded good to her but that most people simply say the beach.  As they continued to push the meds through the IV line I struggled with the discomfort.  The nurse took my hand and I am sure I was squeezing to the point where she would have preferred I backed off.  I very much appreciate what she did for me and I wish I could remember her name to thank her.

It seemed like forever as they continued to push the meds into the IV to get me to fall asleep, but it was probably 5 minutes or less overall.  This was not the way I wanted to go "out" for surgery at all but at least I had fallen asleep.  Given what I experienced I certainly won't allow an IV in the top of my hand any longer and I would recommend that readers follow that same guideline.  I am not sure why they choose that area over the multitude of over viable locations (many of which I have had), but based on a few google searches myself it seems no one is a fan.

The next thing I remember was coming too, being told that the surgery was over, and that I was in recovery and that very soon they were going to take me for a post op CT Scan to make sure everything looked okay.  Not long after that we were on our way through the hallways and I noticed my tinnitus, which was disconcerting to say the least.


ICU

After the quick 2 to 3 minute CT Scan I was taken to the 7th floor to one of the Neurosurgery ICU units.  My wife and friend were already there waiting for me.  They ran down a few of the things that I was still hooked up too from surgery and that would remain for a day or so in ICU.  Basically a urinary catheter, a line in my back/spine to drain excess spinal fluid (a side effect of having your brain manipulated), BP/Oxygen sensor, IV line for fluids and antibiotics and a BP cuff that was going off every 15 minutes.

I have to admit the first few hours in ICU are a bit fuzzy, but they were doing well asking me about my pain levels and helping with pain management.  I was all bandaged up on my left side and was a little afraid to move much so I stared at the ceiling a lot for the first 24 hours I think.  They were giving me IV Dilaudid for pain initially which seemed to work well, but wore off just short of me being able to get my next dose, but after about 6 hours or so the timing started to work better.

I am not exactly sure how long it took, but the ENT doctor, Dr. Eisenman, came in to visit and gave me the run down on how the surgery went.  I was actually only in the ER for about 4 of the 6 planned hours.  Turns out that once they got to the ear canal from above my ear and under my brain they did find a rather large hole that they were able to successfully repair by grafting some skull bone into place, but my brain was not in fact herniating into the inner ear.  So, they closed everything up and I was out of OR early.

This is why I was still experiencing tinnitus, and so my hearing issue was also the same, I just couldn't tell that yet due to the bandages.  He let me know that after I healed enough from this surgery that we would touch base on next steps which would most likely include a surgery through my inner ear which would be far less invasive.  So, even though the root cause of my hearing issues weren't resolved, we did in fact address what could have been a very serious issue in the future that I perhaps would never had known about if we hadn't pursued this avenue of treatment.

ICU all bandaged up

At this point I was left to rest with the exception of hourly or so checkins from the ICU staff to make sure I had strength in my legs, my arms, could smile, could lift my eyebrows and could move my arms with my eyes closed.  I lost count how many times I had to do these activities in ICU.  The good news was I wasn't having any issues at all, and a small "left side face droop" they said I had right after surgery went away in a few hours and I was looking normal.

The ICU nursing staff was outstanding.  I spend the most time with Tim, Yasmin and Molly and they were all very professional, very empathetic and very good at what they were doing.

Early in the morning on my second day in ICU I had a visit from the head intern from the Neurosurgery Department again to see how things were going.  He was doing rounds with what I suspect were other interns or students since this is a teaching hospital.  Of course this time he was wearing a gray Under Armour version of the running jacket. Yeah, it was killing me, I joked about wanting one, but I should have been more convincing.  With all of these jackets walking around the hallways they looked like an elite squadron of healers.

In the afternoon of my second day in ICU I had a swallow test performed so that I could get off IV pain meds and start taking pills that would last longer as well as get off the IV fluids.  A nurse from the Neurosurgery team came in and removed the spinal fluid line and put in a stitch.  Yes, he also was wearing the cool black jacket, and I still wanted one.  The nurse on duty then came in a removed the catheter.  If you have never had this done, it is a little uncomfortable when it comes out, but not horrible.  It does give you the sensation that you might be urinating everywhere, but rest assured you probably aren't.  I will say, just to keep everyone informed of all the odd things that happen post surgery, is that you will probably pee air for a few days, up to a week.  A little different, but totally normal as air was pushed into your bladder during the process.

I also had a visit from the Physical Therapy (PT) nurse and we went on a short walk to check on my strength and stability.  I passed with flying colors and was told that I could now eat and drink real food, and move around a little more freely with assistance from a nurse.  I was also directed to go for one more walk later that afternoon to keep moving so they took off the leg compression device.

My wife stayed with me in ICU over night both nights I was there which was really helpful.  I couldn't do much on my own so having her there to help with simple things including a sponge bath and watching the door as I used the urinal once the catheter was out was great.

My first meal was a late breakfast on Friday that was totally comprised of fluids.  Chicken broth, orange juice, Italian ice and something else I can't recall.  I ate the chicken broth and the Italian ice.

Later in the day I had baked catfish for lunch with green beans.  Totally inedible so I skipped it after a few small bites.  I could certainly swallow, but things were sore from being intubated during surgery.  Thankfully I was asleep when they put that in and took it out.

Dinner was a little more tolerable with a loose meat loaf and mashed potatoes along with broccoli and cauliflower.  I did appreciate the fact that all the food was soft.  As part of the surgery they irritated the jaw muscle on the left side so it was difficult to open my mouth very far or chew anything of substance.

I was dosing off and on since I got to ICU but wasn't able to get any good sleep.  Mostly from the BP cuff going off all the time.  It would wake me up thinking that someone was tapping me on the arm.  I finally asked the ICU nurse if it was still necessary and she apologized that it was still going off every 15 minutes and reset it for 1 hour.  I should have asked earlier.  Not a big deal overall.  I was very pleased with everyone I had interacted with so far and felt that I was getting top notch care.

I did manage to go on a much longer walk after dinner and it felt great to get up and move around.  After my first walk I was told that transfer orders had been put in to have me moved out of ICU but that no beds were available.  I actually didn't get to move until 4am on Saturday at which point I ended up on the 5th floor in a single room, thankfully.  I let the nurses there know I was able to walk well and asked if I could unhook myself to use the bathroom (there wasn't one in ICU).  They watched me go back and forth the first time and then after that I was more ambulatory which was great.

I had another visit from Neurosurgery at about 8am and had my bandage removed.  They stated that thinks look like they were healing really well, gave me care instructions for the following two weeks when the staples would be removed (30 in all) and was told I should be discharged by 11am.  Sure enough by 11am I had all the paperwork, prescriptions to take home and was out of the hospital by 11:15am or so and headed home.

Bandage is finally removed

2 Weeks

For the next two weeks I was told to keep my head dry, take it easy and certainly don't run or walk much (I needed to be as sedentary as possible so I could heal) and shouldn't lift anything heavier than a gallon of milk.  My appointment to go back ended up being schedule for December the 13th (just shy of 2 weeks).

As the days passed I realized I could run out and do small errands so we had to come up with a plan for my hair.  As it stood I had half a shaved head and that simply looked silly.  So, I decided to go full on mohawk and bad ass as possible.  Turns out I kind of like the look and certainly never would have given it a try otherwise.

Mohawk hair style with a splash of Mad Max

Now that I am able to spend more time on the computer and typing (the screen was bothering me some initially which is why it took so long to get this blog out), I will catch up to where I am now as soon as I can.  Today happens to be the 13th so I did get my staples out today, more on that later...(follow-up post)