What I know for sure...

Yesterday marked 6 months since my surgery.  Instead of finishing this post last night, I was finishing Halloween costumes for my daughter's Harvest Festival today.  I am so thankful to be back to doing all this crazy stuff for my kids.

On Thursday 10/3 I went to my second ever ANA support meeting at the Stanford Cancer Center in Palo Alto. They presented a number of AN cases and discussed their recommendations for each case. They then told us what the patient decided to do and the outcome, all good of course.

I found myself at ease in the meeting. So much of this I had heard before. This was all behind me. My decision was made so long ago, treatment is over and working its way into my past. For most of the people in the room, though, they still had a big decision ahead of them. I started to think I really should figure out what I have learned from this process and what I would advise people going through this.

At the end of every "O" magazine, Oprah writes an article, "What I know for sure."  I think this is a great title for the advice I can give.

What I know for sure about diagnosis

1. This diagnosis sucks.  There is absolutely no way to prepare to be told you have an acoustic neuroma (vestibular schwannoma).  Knowing you have one really does not help much at all either.  So, give yourself a break.  Be angry, be upset, be confused.  You should be!
2. Talking about this diagnosis is really hard. Well, maybe for some people they have an easier time.  I found it hard to want to talk about it, and that is ok.
3. You WILL come to terms with it.  That's life, you will get through this and continue on.  Again, give yourself a break.  Let all the emotions and crazy thoughts run their course.  And they will run their course and dry out.
4. Get Support.  You don't have to be alone in this.  Lean on your family and close friends.  If you are up for it, go to an ANA meeting and meet some of us that have been through it or are going through exactly what you are going through.  It really does help to talk it out, once you are ready. 

What I know for sure about making a treatment decision

1. This is YOUR decision.  Deciding on a course of action or inaction is completely a personal decision. The more informed of a decision that you can make, the better. Ultimately, though, no matter how many people you talk to and ask advice from, you are the one to decide what is right for you.
2. Do your research.  You will find yourself reading the same things over and over again as you do your research.  Believe me it is worth it.  All that repetition gets all the information and facts into your head so as you are meeting and talking to specialists it all makes sense.
3. If it doesn't feel right it probably isn't.  No matter how logical it seems a treatment option is for your case, if you don’t feel like that is what you want to do, then don’t do it.  
4. You will question your decision every day, twice a day. Over time this will decrease.  Until then, though, you will be constantly questioning if you are doing the right thing.  That is why those first three points are so important.

What I know for sure about surgery

1. Surgery is the easy part. The actual surgery is easy.  You are asleep the whole time.  It is everything leading up to surgery and everything following it that are hard.
2. I am glad I gained weight.  Ok, probably  not applicable for everyone, but if you are pretty healthy and lean, it really doesn’t hurt to gain a little weight before surgery.  What little weight I had gained I lost quickly since I was hardly eating post-op.  
3. Ask lots of questions before your surgery.  I did not ask enough questions, I still had many surprises along the way.  I do not know what I could have asked to have been told these things, but it sure would have been nice to know these things in advance:
1. The day before surgery I had fiducial markers placed on my head.
1. This required shaving patches into my head and gluing them on.  
2. I could not shower that night
3. Would have been nice to know so I could have warned my kids
4. Would have been nice to know so I could have warned my brain.
2. With the lumbar drain, you can’t move up and down or it will mess with the drain rate.
3. They put me on dexamethasone, a steroid to decrease inflammation.  Having the side effects of what this drug will be doing in my head ahead of time would have helped prepare me mentally for what I went through.
4. I am glad I went to the  "Prepare for surgery" workshop.  This was offered through UCSF and anyone can attend, whether you are having surgery at UCSF or not.  This was just another way to mentally prepare for surgery.  Not everything is applicable to your specific case, but it really helps you to get a better idea of what to expect.
   
5. Surgery messes with your teeth.  This is not really a huge deal, but an interesting point.  I had a dental cleaning about 4 months post-op.  I was bleeding alot and expected a scolding from my hygienist.  Instead, though, she said I looked really good for having had major surgery not so long ago.  Apparently your dental health suffers with major surgery...and pregnancy…in case you didn’t know.

What I know for sure about recovery

1. Recovery takes time.  It is going to feel like forever that you feel like crap, especially if you are on a steroid.  Give yourself time and give yourself a break.  Tell work you will be out for 3 months at least.  The last thing you need to do is to stress yourself about going back to work.  Your body is under enough stress as it is!
2. Drugs mess with you.  I know everyone is affected by drugs differently, but for me those narcotics and steroids are just no fun.  
1. Those heavy narcotics that are supposed to help with the pain basically make me feel loopy and drowsy and barely dull the pain.  
2. The steroids made me feel plain sick.  My eyes were dilated so besides bouncing around they couldn’t focus on anything anyway.  It made me nauseated so I did not want to eat.  I messed with my taste buds so even when I did feel like eating nothing tasted right.  And it gave me a dry mouth.  
3. If you can get some straight answers as to what they plan to put you on, you can read up on the side effects and understand them better. 
4. But you have to take the drugs, so just be prepared.
3. Take the laxatives. Apparently everything about surgery converges on plugging you up.  Once you do start taking the laxatives, they probably will take a day or so to start working anyway.
4. Complain about anything and everything.  If I had been more vocal about my ass hurting in the hospital, I could have diagnosed my sciatica so much earlier and known how to treat it so much earlier.  Anything that is going on with you, be sure to tell the nurses.  Be sure to ask and ask again that what you are experiencing is a normal symptom or side effect. 
5. Have something planned to look forward to. I knew I would be going backpacking with my friends late July/early August.  I know it is so hard to plan something like that just for yourself when there is this huge wall of major surgery in the way.  But do it, plan something beautiful and wonderful and relaxing and fun.  Then give yourself that image to think about as you are heading for surgery, then after surgery as you are struggling with recovery.  Give yourself that one great image to work toward, that one goal to strive for to feel better.  Then once you are there, take a deep breath and look back at what you have been through.
6. Talking about my AN after surgery is almost harder than talking about it before.  It is just so weird to meet new people and they just have no clue that I had a hole drilled into my skull just 6 months ago.  I must say, though, the shock value of telling someone I had brain surgery has not gotten old yet.  Check back in with me in a few years, maybe by then it will.

I am sure I have more to add, I hope I do.  I have had plenty of thoughts around this over the past 6 months.  I know everyone is different, so what I know for sure for me may not be right for you, I just hope it gives you something to think about.

Kristi Therapy

It has been 4 months since my surgery and about three months since my last post.  Since then time has gotten up and moved along in quite a hurry.

Recovering from sciatica was all consuming.  Most of my day was spent trying to alleviate my symptoms.  I would do the exercises and stretches prescribed by my physical therapist two to three times each day.  I would lay on my heating pad as often as I could.  I hardly thought of recovery from Arnold. 

Within two weeks I was able to drive for Audrey's field trip to Gilroy Gardens, chaperone all day, and drive back with minimal discomfort and just enough energy.  The sciatica was not gone, but it was improving and manageable. 

With my energy level coming back up and the sciatica no longer all consuming, we launched into summer with both kids out of school and plenty of time to plan all kinds of fun activities.  I actually had intended those activities to be day trips to various museums and the beach and all the fun the bay area has to offer.  But oh no, fate decided the best way to enjoy the summer was to jam pack it full of trips out of town. 

First stop, camping in Big Basin with my brother and his family.  Here I discovered my super power.  On the last night of our trip, the camp site across from us loaded up with a bunch of young, rowdy people that decided to party until 2AM.  I was sound asleep by about 10PM since I could bury my left ear in my pillow and, well, I can't hear a damn thing in my right ear so I did not hear them partying at all!

Second stop, Florida.  No better test for how well I have been managing my sciatica than having to sit on a plane for 6 hours.  The plane rides were not too bad.  I did take ibuprofen for the flight home, but the discomfort in general was manageable.  The strange thing was getting onto the people movers in SFO and suddenly being all wobbly.  It took me a second to realize my brain was working on figuring this one out!  The other good test on this vacation was playing in the waves in the ocean.  I was a little wobbly, but really not all that bad.

 

Third stop, backpacking in Tahoe National Forest with the Queen and Special K.  Nothing like hiking 4 miles with 37 lbs on your back to test your strength and stability.  We kept it simple and made a base camp and day hiked around.  

The girls decided to dedicate themselves to "Kristi Therapy."  They helped me work on my stability by taking me cross country, off trail, scrambling over boulders and even getting us lost for awhile.  I would say they did a pretty good job. 

Final destination, New Jersey to visit Greg's family.  Another airplane ride to test my sciatica.  Then a week of fun and swimming. 

So here we are, the summer flew by and now school starts in just about two days.  The up side is that surgery does seem much further away.  The down side of all this travel is I did not stretch and exercise as much as I should have, so the sciatica is still with me.  I have minimal discomfort from it, but it is still there.

As for the real recovery, from Arnold, that still needs work.  In my day to day activities I have no problem, but if I move my head too fast or try to jog, things start to get a little bouncy and twirly.  Somewhere along the way, though, I changed my expectations.  Before, when I would lose my balance or trip or something, I would think, "oh, that was bad" and get a little nervous.  But now, I kind of expect it. If I stumble or have to throw my arms out for balance I do not think anything of it.  It is just how I am.  I did not fall, I caught myself, it is helping my brain figure out what to do next time.  In fact, maybe that was a good thing.

I am almost back into the swing of things.  I have to add in work soon and then hopefully some gym time.  I would say I am feeling pretty darn normal and I know, no one can tell that I had brain surgery just 4 months ago.

The Rebound

Wednesday May 22, 2013
 
I have always heard after ending a long-term relationship to be careful of the rebound. Popular sitcoms show how bad rebound relationships can be. Apparently my body did not listen and decided to get over Arnold by developing sciatica in the hospital!! So even though I have not given this new ailment a proper name, it is completely dominating my recover and my life, it is definitely a rebound.
 
It took me four weeks to figure out what the heck was wrong with me let alone to get treatment. It actually started in the hospital as just a tightness in my left buttock. One of my day nurses provided one of those disposable heat packs that afforded relief. I figured once I got home to my own bed it would be fine. Boy was I wrong. 

I spent the next few weeks trying to "fix it" on my own. First I thought maybe I just need to stretch, my hamstrings feel tight. Again wrong, the condition worsened. I tried other stretching, exercises, a massage, even ignoring it. With every new thing I tried it would get worse. Even if I did not do anything it seemed to get worse. Finally I made the pain progress down the back of my left leg. Once I started telling people the pain goes from my rear down my leg, the word "sciatica" started popping up. 

So what is sciatica? Well, of course I googled it and came up with this from webmd: http://www.webmd.com/back-pain/guide/sciatica-symptoms

Sciatica is a common type of pain affecting the sciatic nerve, a large nerve extending from the lower back down the back of each leg.

Common symptoms of sciatica include:

1. Pain in the rear or leg that is worse when sitting
2. Burning or tingling down the leg
3. Weakness, numbness, or difficulty moving the leg or foot
4. A constant pain on one side of the rear
5. A shooting pain that makes it difficult to stand up

Sciatica usually affects only one side of the lower body. Often, the pain extends from the lower back all the way through the back of the thigh and down through the leg. Depending on where the sciatic nerve is affected, the pain may also extend to the foot or toes.

While I do not have all of these symptoms, points 1 and 4 definitely describe what I have been experiencing: I was fairly certain this is what is going on.  I am also thankful that my pain only goes maybe halfway down the back of my left thigh.  I could not imagine how awful this would be if it went all the way to my toes.  As it is, my days are spent managing the pain.  I wake up in pain, so that gets me out of bed.  I move around and sometimes it will feel ok if I am standing.  I can not sit without pain.  When standing gets painful I lay down.  However, laying down is painful too.  I have to be laying with heat on my back and bottom, then I am comfortable for a short time and often can fall asleep.
 
When I asked my primary care doctor and my neurosurgeon's nurse practitioner how to treat this, they both basically said anti-inflammatory medications (ibuprofen), heat and or ice. Not much to go on. Thankfully I had already been working on getting in to see a physical therapist before I had self diagnosed. I knew something was wrong and that I needed expert help anyway. It took almost a week to schedule my first appointment. So by then, it was four weeks after my surgery. 


I am surprised by how common this condition is.  Almost every one that I have spoken to and mentioned I have sciatica know exactly what I am talking about.  Often, they will tell me they have had it or someone very close to them has had it!  It is always comforting to know so many other people have had it, it goes away, and yeah while you have it, it sucks.  

My first PT appointment on Thursday 5/16 was disappointing. My PT asked me questions and did an examination. I did not tell her I think I have sciatica to see if she came to the same conclusion. She said I was having pain from nerves in my back (or something like that) so I mentioned sciatica and she said yes, that's it. So she then gave me two exercises and not much else for managing the pain. I did not know what to do when the pain came on. I did not have a routine of things I could do to actively lessen the pain. I had 5 days until my next appointment. That is a lot of waiting. 


My second PT visit on Tuesday 5/21 went better.  She worked on some of my muscles and showed me how tight I am in my glute and back.  She said we need to work from the bottom (literally) up.  So first, we need to get the muscles in my glute to loosen up.  She gave me one more strengthening exercise and two stretches. She also approved me to use my foam roller at home and/or a tennis ball to work out some of the tightness. We also decided to try ice on my back to see if that helps.  Leaving the appointment I was much more pleased with the routine for home.

The very next day (Wednesday 5/22) I had my first follow up appointment with my neurosurgeon, Dr. M.  That meant a car ride to San Francisco.   To compound things, I found the ice made the sciatica worse.  I seem to tighten up and have a lot of pain.  So, the car ride was brutal since I only just figured this out that morning and had tried to ice.  Thankfully I found an old lacrosse ball in Clio's (that's my dog) toys and was able to use that to roll out some relief.  

The doctor's visit was almost comical.  Most of the visit was spent addressing the sciatica and very little on how I am recovering from the surgery.  I did get to see my scans; I look free and clear of any tumor.  Dr. M did tell us a story that he presented my case at a radiology conference as an excellent candidate for radiation, then proceeded to tell everyone that they operated anyway!  He is ordering a scan of my lower back to see whether the lumbar drain caused the sciatica or not.

So for now, 600mg of ibuprofen three times a day.  Follow the exercises and stretches prescribed by the PT.  Do not over do it, and when I start to feel pain, just rest and heat.  Hopefully soon I will start feeling normal.

...and then there was coffee!!

Saturday May 11, 2013
 
It has been three weeks and a couple of days since my surgery.  I finally had my first cup of coffee today.  It tasted different, but was enjoyable.  Unfortunately I forgot about the caffeine factor.  Thankfully, my coffee is already mixed half regular, half decaf.  After three weeks of no caffeine, I am definitely very sensitive to it.  So, looks like I will be up for awhile this morning.
 
Until just this past Monday, I have not really felt like writing or doing much of anything.  My recovery was marked with bad and less bad days.  I was constantly sick to my stomach and each day was a struggle to find something that I wanted and could eat.  Fruit and baby carrots always seemed to go down well.  Other food mostly just tasted salty and often I could only eat a few bites if at all.
 
I had periods of energy, followed by long naps.  Many of my mornings I was able to schedule a visitor, which forced me to be out of bed and upright for a period of time. 
 
Each day the spinning and swimming of the world slowly decreased.  I was able to walk myself up and down my street a little after two weeks.  It did not take much, though, for me to "over do it" and need a long rest.

I attribute most of my feeling sick to the steroid I was on to decrease swelling (dexamethasone).  My last dose was last Friday and I expected to feel much better after that.  Actually, it took all weekend.  

Monday finally saw me no longer sick to my stomach or nauseated.  Since then I have steadily been able to eat more and have not been so limited in what I can eat.  My taste buds are slowly coming back to normal and food is starting to almost taste as I would expect it.
 
Pain management for my head has been minimal.  I have had a few days where I have had headaches, but nothing too severe.  Those are easily managed with Tylenol and ibuprofen.
 
My stability had improved greatly.  My head still swims as I look side to side, but every day that improves.  I am moving and walking more normally, though I still take things slow. 
 
Car rides are getting better as well.  In the beginning, I could not keep my eyes from bouncing.  I felt like my internal shock absorbers had lost all dampening capabilities.  We would hit a bump and everything would just keep bouncing.  With every car ride, though, this has improved and I dread getting in the car less and less. 
 
Today I feel there is hope for normalcy.  The world is becoming more and more stable.  My energy is starting to return.  My body is moving more normal every day.  And, most importantly, I can drink coffee again.

The Wall of Love

I feel as though I have been inundated with love and support since before I went into surgery.  There has been a constant stream of gifts and cards and messages in every possible way.  This is my Wall of Love where I have posted almost every card and picture.

This is a glimpse of my hospital room at one point with flowers and balloons.  I knew they were there, but I did not look at them all that much.  My vision is so bad that if I do not have my glasses on I really can not see much of anything but blobs of blur.  Add on top of that my eyes would not sit still for a second I just did not bother looking around all that much.

The kids' artwork was displayed prominently in my room, again blurry but I knew it was there and helped me along.

 And these are the flowers on my table right now!

This is just a huge THANK YOU to all of my friends and family that have been sending me love, support and encouragement in so many different ways.  Thank you for taking the time to send me messages, cards, flowers, balloons, fruit, gifts, and even coming to visit me and walk me around!  Every little gesture means so much to me.

With Love,
Kristi

The one week hangover: Arnold's legacy

One week ago today Arnold was surgically removed from my life.  The ride since then has been hellish.

Day 1: Pre-op
What a machine UCSF is.  Everything is so organized and together.  They run like clockwork and take such good care of everyone, patients and loved ones.

We breezed into the city and self-parked.  Spent about 1 minute in admissions where they handed me a folder and sent me to the surgical waiting area.  We checked into the waiting room where they are very strict no food no drink in those areas for all of us that are fasting.  They took down Greg's name and number so they knew how to get ahold of him for updates.

My Big Brother, Kent, was there to meet us and we just visited in the waiting room until they called us up.

Then like little drones, we were called and directed to the "M" elevators, up to the 4th floor into the only room open.  We were given a bed number and escorted there by a staff member.  I received a large yellow bag for all of my belongings, Greg ended up just taking all of that with him.
Then, all of the people started coming by:

1. Dr. G - Dr. M's resident
2. Another doctor that was Dr. L's resident
3. The anesthesiologist
4. The anesthesiologist's assisant
5. Dr. M - neurosurgeon
6. Dr. L - ENT/otolaryngologise
7. Nurse S, head of the OR nursing staff
8. Nurse E, head of the neurology surgical nursing staff
9. Nurse J, the nurse taking care of me in the OR

I know there were more, I can't remember who they were.  They all asked me about the same questions, checked that I was marked in the right place and were just nice, professional and quick.  Soon it was past 8:30, Dr M has forgotten to do something in the computer so we had to wait for him to complete that before they wheeled me in.  Greg watched me get wheeled into the OR and then that was is.

Kent left a little before 8:30 as he had a meeting.  Yes, life moves on even when I am in surgery.  I have to take this moment to thank my big brother for his assistance on this journey.  I have mentioned before he was the catalyst that made me seek out the doctors at UCSF.  Having him there to help us navigate parking and where to go has made this easier on Greg and for me.  Because he is an employee of the medical center, he was able to get us concierge status, which just meant a few extra kudos for us and our stay.  Most importantly, though, he was there to see me into surgery and when I got out.  He checked in on Greg and helped keep him occupied.  He has been a big support and I am so thankful for all that he has done for us.

Once in the OR, I really tried to look around and see what was going on.  Honestly, it kind of reminded me of the room of requirements in Harry Potter.  There were just machines and contraptions all over the place.  It was a big room and had big lights, then lights out.

Day 1: Surgery
I slept.

Day 1: Post-op/Neuro ICU
Next thing I knew i was all bundled up waking up with a massive headache and a very dry mouth.  Greg was there, Kent was there, I asked for pain meds.
I tried opening my eyes and they bounced all over the place like a pachinko machine! I felt miserable and wanted to sleep.
I believe that first night there were a lot of people around.  My other brother, Kevin, came by for awhile.  The doctors came, various nurses, etc.  I hardly moved and just wanted to sleep. My mouth was dry so Greg was able to dab it with a sponge.  I hadn't a prayer of taking a drink.

Day 2: Neuro ICU --> Neurology ward
The Neuro ICU is not a restful place.  There seemed to be people around all of the time and I was constantly checked.  The narcotics were making me groggy but I was not sleeping very well.  I did not feel like I ever really went all the way to sleep.

This first day I'm fairly vague about.  Lots of doctors, residents, etc. came by.  I tried to sleep alot.  Overnight I had graduated from sponges to ice chips to actual water.  They were trying to get me to take pills as their effect would last longer.  Interestingly enough through all of this, they did not actively manage my pain for me.  I had to ask for pain killers when I needed them; they did not come give them to me on a schedule or anything like that.
I basically spent al day in the Neuro ICU awaiting a room.  Because of Kent, admissions was holding out for a private room for me!  It was completely worth it.

I had a post-op MRI sometime that morning.  They wheeled me out with everything attached.  They warned me of bumps at which I would clench my teeth in hopes that my head would not jiggle too much.  They had to remove all the monitoring pieces on my chest and replaced them with MRI specific monitoring pads.  It seemed like quite a process and the whole time all I could do was just lay there wishing I could feel better.  Sometime later Dr. M came by declaring the MRI was clear!

At one point the Physical Therapist came in and got me up and I walked into the hall, then went back to bed.  It was hard, there was nausea and nothing seemed to want to sit still for me.  But, I did it, that's what counted.

Mom, Dad, Kevin and the kids made it for a visit sometime too.  They let them come into the Neuro ICU after checking their temperature.  I was so glad to see them, for what little I could look at them.  They did not stay too long, I was not very good company.

Soon after I was moved to the neurology ward of the hospital into my own room.  All the monitors were removed from me, but I still had tubes coming and going in every direction.   I think I can sum up about how many things they had all over me in the ICU:

1. IV on the right
2. IV on the left
3. Instantaneous blood pressure gauge
4. lumbar drain
5. foley catheter
6. at least four sticker type monitors on my chest
7. both legs were wrapped in inflating pads that continuously filled with air and then released.  This was to keep the blood moving so I would not develop clots.

  <--That's the pump!

Day 3: The Lumbar Drain
As soon as I was moved to my regular room, the lumbar drain was turned on.  It actually is a little vacuum that slowly drains Cerebral Spinal Fluid (CSF) from my spine and thus from my head.  The rate of drain is directly related to where my head was.  So, I could not move my bed up and down, I could not lay down, was always a little tilted.  The purpose of this is to decrease the pressure in my head so everything could heal and seal up nicely.  The effect, though, was so discouraging.  I did not want to move because my head would throb and the pain shot up so fast when I tried to get up.  In general I felt miserable with little to no motivation to move or do anything.

Greg left in the evening to relieve my mom.  Both kids were getting sick and my Mom had a relapse of her cold.  While I would have loved to have Greg stay, I am very thankful that he had to go.  He would have been miserable staying in the hospital with me.  They check my vitals every 4 hours.  They are in just about every hour to check that the lumbar drain is at the correct range.  You never really rest while in the hospital, but with how I felt this day I was not sure how I was going to manage to get home on Sunday.

By the time Greg left, they decided to slow the drain from between 10 - 15 to 5 - 10, whatever that means.  It translated into me feeling a tiny bit better after a nap.  I even had visitors that evening, and was able to smile and converse.

 I can not believe how much CSF they siphoned out of me.  Was there anything left to hold up my brain?

Day 4: The Penthouse Suite
My head started throbbing more and more through the night.  By the morning, the new day nurse was determined to get me up and about.  I had to control the pain so I could move.  I was reluctant to try a new drug, but obviously just Tylenol was not enough.  Nurse E gave me Norco, which is acetaminophen and hydrocodone.  She made me get up and my head hurt.  So, she shot me full of demerol so I could manage to sit up for awhile.
The Norco did not affect me as heavily as the oxycodone, I was able to sleep a little, function ok and control the pain.  In general, this was a much better day than Friday.  I was able to sit up three times for about an hour.  I walked the corridors twice, once I made it around the nurses station and back.
Sometime at night, they removed the lumbar drain.  I then had to lay flat for 6 hours so it could heal.  I was thankful to be able to lay down, but then I still was not optimally comfortable.  By morning, my head was hurting again.

Day 5: Hospital --> HOME
My first time getting up this morning my head throbbed.  I had not had any pain meds for quite a while, so I popped a tylenol to see where that got me.  I managed to be up and nibble some breakfast.  I even took a walk before heading back to bed.

The occupational therapist came by and talked with us about getting along at home.  She had me practice using the walker and suggested she will send the Physical Therapist in to evaluate and possibly prescribe a walker for home.  She also suggested we would need some in home consultation in about a week.  All sounded fine to me as I was so wobbly and everything swims so badly when I stand up.

I settled in for a nap and eventually Greg headed out for lunch.  Dr. M came by sometime as I was waking up to see how I was doing.
Dr. M: "So what do you want to do?"
Me: "I wanna go HOME!"
Dr. M: "Ok, call your husband and get out of here!"

Dr. M also mentioned that he will be presenting my case as a small tumor that they operated on (mostly just radiate these small ones) with excellent facial nerve outcome.

So, a couple hour later, I was in the car on my way home.  Dr. M had cancelled any recommendations from the OT/PT and just sent us home.  The ride was long and bumpy, but somehow I made it through and into my own bed.  It was such a relief to be home!

Day 6: HOME
There is something inexplicable about being home versus in the hospital.  I by no means am back to normal, but I feel better and better ever so slowly.  Mom made me wintermelon soup and oystersauce noodles.  The soup was SO good and really hit the spot.  I think I drank that for three days.  My appetite has slowly returned and my vision is slowly getting better.  My left eye still likes to bounce around and I have a hard time focusing on anything to read.
In general I feel that I can make it through this.  I was not so sure in the hospital.  I felt so awful and did not feel like it was getting any better.  My best analogy, I feel like I have been hung over this whole time! 

Mission Accomplished!

Kristi's surgery was a complete success!  The Doctors were able to remove Arnold the tumor completely and preserve all facial nerve function.  The post-op MRI was declared 'beautiful' as well.  Kristi has been moved out of the ICU and is now in a regular room where she continues to be groggy from all the pain medication.  She did manage to get up and power through some serious pain and nausea to walk through the ICU amazing both me and the Physical Therapist.  This was all less than 24 hours after having the surgery!  The next steps are to spend more time on her feet, eating some solid food and getting the lumbar drain removed.  I'm confident Kristi will blow through all those requirements no time.

Kristi has Entered the OR

Kristi was just wheeled into the OR in good spirits.  They expect to be done around 4pm today.  I will post an update as soon as I am notified of the successful completion of her surgery.

Franken-kristi

This was an unexpected event today.  For my MRI, they placed about 8 markers around  my head.  You can see three on my forehead:

There are about 5 more scattered around my head for which they shaved patches into my hair and attached.  Don't worry, I did not freak out too badly that this was happening.  I do have to keep these on all night for surgery tomorrow.  That means no showering: they can not get wet.  Otherwise, I do not have to do anything special.  I can sleep normally and if one or two fall off it is ok as they are all marked with a sharpie dot in the center.

What are these for?  They are markers, so on the MRI they highlight where they are on the scans. Then, for the surgery, the doctors are able to use those for navigation.  My brother explained it much better, but that is about the gist of it.

There is so much I would like to write, but lately I have had a hard time gathering all my thoughts.  I have also been keeping busy trying to tie up loose ends, so to speak.  Here are a few highlights of what is on my brain:

Prepare for Surgery Workshop
Greg and I attended a Prepare for Surgery workshop at UCSF last Monday evening.  I could easily write a whole blog post on that, but will sum up that it was worth going, though not all of what they were talking about applied to me.  I picked up a few important pieces of information and it really helped to set my expectations of what going into surgery will be like.  They also stressed how important it is to sleep and relax before surgery.

The Arnold Pack
Some of you know I decided to go ahead and really try to gain some weight for the surgery.  Part of the procedure is to harvest belly fat to seal the hole in my skull.  I want to be sure there is plenty of fat there.  The last few weeks I have been drinking more milk shakes, eating until I am really full, having plenty of french fries, dessert every night, etc.  I feel like I have gained weight and the scale today said I am up 6lbs from where I normally am.  So, thanks to all those that were supporting my efforts to gain weight by feeding me and eating with me!  Big thanks to my mom for all the wonderful food she has been cooking and will be cooking for me as I recover AND for the yummy chocolate cake with whipped cream to plump me up.

Lots of Pre-op
I had my prepare call on Wednesday last week, exactly one week before my surgery.  Actually, the prepare clinic called me on Tuesday to schedule my prepare call on Wednesday.  Anyway, it was fairly brief and they added yet another appointment to the Tuesday before surgery.  
Today is Tuesday before my surgery, here is what I did today:
 
 8:30AM pre-op consultation with Dr. L the otolaryngologist.
 9:45AM audiogram - confirmed the hearing in my right ear is useless
11:30AM prepare clinic appointment to review paperwork, have my vitals taken and draw blood
LUNCH TIME!!!  I'm very glad that I packed a bottle of water to take with me as I was so busy I did not have much time to get water.
 1:30PM check-in for my MRI.  This is when I was surprised with the markers AND they poked me with an IV for the contrast.  Usually, the MRI's I have had at PAMF, they just injected the contrast after doing their initial set of scans.  This time, the had a machine inject it so they could scan while the contrast was making it's way through my system.

Four appointments does not look like much but it seemed like a lot to me.  I am wiped out and going to head to bed very soon.

Remember, no food or water after midnight.  6:30AM I will be checking in to the hospital.  I will be in the OR by about 8:30 and the drilling will commence around 10:30.  If all goes well, I could be out as early as 3PM.

Thank you to everyone that has been sending their love and support through gifts, e-mail, text, facebook and prayers.  Every single one is invaluable to me and it helping me to keep going.

Big thank you to my mom and dad for keeping the kids as of yesterday as we wade through all of this.  Our stress would be so much higher but for their love and support.

HUGE hugs, kisses and thank you to my amazing husband who is already taking care of me and has been helping me through this every step of the way.  I never would be doing this if it were not for him.

What to Expect when you are Evicting

This post may be rather disparate.  I thought it would be fun to list out what I expect to happen, then I can compare what actually happens come surgery and recovery.  Yes, perhaps this is more for me than for you, but then again, maybe this whole blog is just my own therapy anyway.

Surgical Cost
This is from Miss A:

On average, a surgery can cost anywhere from $150,000 +.  The cost to you is based on the individual patient/insurance contract.  Our office is responsible for obtaining prior authorization but your insurance company doesn’t process the claim until after the surgery. The post-operative period is three months following the date of the surgery.  All visits with the surgeon within that three month period are included in the cost of surgery.  Patients typically meet with Dr. McDermott approximately 6-8 weeks after surgery.

The Surgery Itself:
More from Miss A:

You will be admitted to the hospital on Wednesday/the morning of surgery.  The check in time is 6:30am and the surgery starts at approximately 8:30am.

What I think I know about the surgery:

• This is an all day kind of thing, an 8 hour operation
• Dr. L is in charge of drilling to the tumor, with this approach that can be 3 hours of drilling!
• A very large drill will be involved
• Dr. M is in charge of removing the tumor
• This is microsurgery, a very powerful microscope will be involved
• UCSF is very organized, according to Miss C
• I pretty much will be knocked out and the next thing I know I will be waking up and it will be all over.

The Hospital Stay:
Yup, Miss A again: 

That night (night of surgery) you will be in the Neuro-ICU.  Patients usually remain in the ICU for one night.  You may have visitors but no one can stay with you. 

The next day (Thursday) barring any complication or change in plan made by the doctors you will be moved to the regular Neurosurgery floor.  You may have visitors and they can stay with you.  

Three days with lumbar drain, then after they remove it another day of observations.

[Regarding whether Audrey and Enzo will be able to visit me in the hospital] Yes, your children will be allowed to visit you in the hospital.  They may not be able to visit you during your night in the Neuro-ICU.

What I think I know:

• When I do wake up, between the surgery and the anesthesia I will feel like crap.
• The hospital food will be awful.
• They do not ease you into meals, they are serving you normal food from the start (where's the jello?!)
• They will make me get up the first day after surgery and it is going to be the hardest thing, although I have had two kids so it may not be that bad?

Post-op:This is mostly from Miss J, the Nurse Practitioner:

Patients usually remain off work for 4-8 weeks following surgery.

Your suture/staples will need to be removed 10-14 days after the date of surgery.  This can be done by Miss J or your local physician

No driving for 3 weeks.

Physical Activity:
0 - 3 weeks: unlimited walking ok.
3 - 6 weeks: may do 1/2 intensity of normal.
No aerobic exercise for 6 weeks.
after 6 weeks: no restrictions

Post-op appointments:
6 week approximately: post-op appointment with Dr. M
6 month follow up brain MRI and appointment with Dr. M
12 month follow up brain MRI and appointment with Dr. M

After your initial post-operative appointments with Dr. M (approximately 6-8 weeks after surgery) you can follow up with your local physician if you prefer. 

...and more about what I think I can expect:

• Pain.  There is going to be a lot of pain.  Take the meds, don't be a hero.  The incision on my abdomen will hurt, my head will hurt ALOT!
• Balance issues: I *will* have balance issues.  They are cutting out my balance nerve, of course I am going to have balance issues!!  As brainy as I like to think of myself, it is going to take time for my brain to figure out how to remain stable with just one vestibular nerve on the left side.  This is going to completely suck and I think be the hardest part of my recovery.
  
• Facial weakness:  The right side of my face will not be working very well.  It will be crooked because I will not have as much control over it.  Yup, I will be drooling on myself.  One effect of this that Mr. A pointed out is I am not going to be able to chew hard foods or open my mouth very wide in the beginning.  Pizza, toast, big juicy hamburgers are not going to happen immediately.
• Stiff neck?  I will be laying in surgery looking left so they can operate.  Lady C said she had such a stiff neck afterwards she went to massage therapy to loosen it up.  It could happen to me?! 

There are of course some serious possible complication post-op, mostly due to drilling into your head.  I know I should be prepared for them, but I really just don't want to think about it.  They are rare and I just hope they don't happen to me. 

AA: Arnolds Anonymous

Ok, there is not really a support group called Arnolds Anonymous.  However, there is a nationwide support group called Acoustic Neuroma Association (ANA).  Their website is a wealth of information.  They offer a trial membership for free, which I signed up for sometime in early 2011.  They sent me a whole bunch of good stuff to read.  

By the time I signed up for this group I had learned quite a bit already.  The things they sent helped to re-affirm that I understood my case and the options available to me.  In fact, the doctors I met with, websites I visited all were saying almost exactly the same thing.  There were subtle differences and new little pieces of information or perspectives to pick up here and there, but the main text was the same over and over again.  This gives me confidence that I really do have a handle on what is happening to me and what my options are.

The ANA also has local support group meetings.  There is a group that meets every other month at Stanford and at UCSF.  I receive flyers in the mail and e-mails reminding me when these meetings are happening.  Greg has been encouraging me to go from the start.  I have been hesitant to go until I reached a point where I felt confident in my research and decisions.  So, I kept these meetings in the back of my mind.  One would come up and there would always be a conflict.  They did not hold enough priority to me to make an extra effort to attend.  

As I was in the throws of deciding when to schedule my surgery, an opportunity finally came up to go to an ANA support group meeting at Stanford.  I had no excuse to not go, so I finally went.  I had decided to go through with surgery by then, but had not scheduled it yet.  I was now looking for reassurance that surgery was a good choice and added confidence that I was making the right choice.  I knew it was time to look to people that had already been through this.

I counted about 10 patients at the meeting, all in various stages of treatment.  Some were post-treatment, some were going through radiation right then, some were like me just before treatment and some were just trying to understand their new diagnosis.  One lady in particular made the whole experience worth while.  Lady C had just had translab surgery in August at UCSF.  She is exactly my age and looked to be moving and functioning quite normal just 4 months post-op. Meeting her there gave me added confidence in scheduling my surgery.

Lady C and I have been e-mailing sporadically since then and had planned to meet up.  As you know, I have a rather crazy schedule so planning something like this just kept getting pushed out further and further.  Lady C happens to be unemployed right now and has been enjoying her unemployment with trips to Tahoe!  So, just about when I posted this blog to facebook for the first time, I nudged her to meet up.  She bravely came to my house with a plate of chocolate chip cookies in hand and experienced the chaos that is my Tuesday evening.  Once I put the kids to bed, we had a wonderful talk and I am forever grateful for the time she took to come and visit. [More about this in the next post]

As the days tick down to my surgery, I am finding I am slowly accepting that I will be having this surgery.  There are so many unknowns that weigh on my mind, but I think I can bucket them into two categories.  First, what is going to happen to me?  Second, how do I know I have chosen the right doctors?

The first question seems to be best answered by people that have been through surgery before.  Of course talking to Lady C was the best analogy to what I will be going through.  Another friend, after reading my blog, put me in touch with his friend, Mr. A,  that also went through acoustic neuroma surgery.  While his surgery was a different approach (middle fossa) and with a different practice, many things he told me were similar to Lady C's experience and strengthened my expectations.  To Lady C and Mr. A, I thank you so much for taking the time to lend your support to an otherwise perfect stranger.  I hope I will be able to pay your kindness forward to a future ANA patient.  Your friendship and support are invaluable to me.

I have found also just talking to other people that have gone through traumatic health issues and here they are on the other side in a state of normalcy helps me believe I will be ok and can be normal after this. So, for all of my friends that have shared their history of surgery and illness, I thank you for sharing your stories.  It is helpful to know what strong survivors I have for friends.  You give me confidence that I too will come out on the other side of this just as feisty as ever.

The second big question is harder to answer.  How do you know anyone is good at what they do?  Well, by their reputation.  Reviews and stars and whatever we can find on the internet give us a good recommendation for everything these days.  But how do I know I have chosen the right ENT-neurosurgeon team for this?  I have not yet found a website that ranks these particular teams, so I have to trust their reputation.  From at least 4 different independent sources I have heard this team is at the top of their game:  I could not be in better hands.  

On particular source, Dr. C, whom I mentioned in an earlier post (What do you do about someone like Arnold?) is actually doing a fellowship at House Ear Clinic in Los Angeles.  She encouraged me to consider going there for my treatment as she believes they are highly specialized exactly this type of treatment.  As going to LA is just out of the question for me, she asked her colleagues about Dr. M and Dr. L:

I spoke with our senior neurosurgeon & neurotologist- they say dr M is the only neurosurgeon they would recommend in the Bay Area. They also say good things about dr L.

To me, this was an extremely high recommendation.  

I am still apprehensive, though.  Am I concerned about the doctors?  maybe.  Concerned about the surgery?  definitely.  Will I get over this feeling?  I do not think so.  I have a feeling I will be rolling into surgery still apprehensive and fearful.

Scheduling an Eviction

The actual act of scheduling surgery was as simple as an e-mail.  The mental anguish surrounding this simple act is the complicated part.

I walked into my appointment with Dr. M knowing he already recommended active treatment of some sort back in July when I did my 6 month MRI/audiogram.  I was leaning toward surgery and mentally planning to do it in the spring of the next year (2013). After Dr. M confirmed he recommended surgery for me, I still was not prepared to just say, "Yes, let's do it."

As for all of my other doctors appointments, my parents were watching my kids.  This particular one they took advantage of it being on a Friday to keep the kids overnight for a sleepover.  This left Greg and I to spend the night in the City.  I am fairly certain my mom kept the kids overnight partly because she knew I would have a lot of my mind and Greg and I would need to have some time to just be together and work through this.   

We left the appointment and headed to our hotel.  Of course we talked and this brought up so many more questions that I should have asked in my appointment.  I took notes and knew I could e-mail them to Miss A, the practice coordinator extraordinaire, and she would get back to me with answers.

Miss A e-mailed me promptly on Monday morning, before I could compose my e-mail to her with my questions.  She indicated when I make my decision to contact her via e-mail or to call her.  She is just amazing!  I sent my questions back to her and we sent a few e-mails back and forth.  

I still did not finally decide to send the e-mail that I wanted to schedule my surgery until Monday December 10th.  Yup, I waited another week to send that e-mail. Getting answers to my questions was one stall tactic.  I also had to figure out when to schedule it.  

I personally have never really had major surgery.  I had my wisdom teeth pulled; that was so long ago I hardly can remember that one.  I have had two kids, so I know what it is like to be in a hospital.  While I was certain I would probably not be driving myself to the hospital for surgery, I was not sure what role Greg wanted to play in all of this.  He is the dad, so of course he was right there for the birth of both our kids.  But this is so different to me, I figured he would be managing the kids.  I was wrong.  He plans to be with me as much and as long as possible. 

Everything these days is for the kids.  Our lives revolve completely around taking care of them.  Other things interject themselves, but in general I am pretty much about making sure my kids are happy and healthy and that I am doing what I am capable of doing to advance their lives.  It seems completely ridiculous that I have to step back and remember, Greg chose me to marry 9 years ago.  He loves me and I am important to him and he will be right there with me as I go through all of this.  Yes, he will be driving me to the hospital and staying there in the waiting room while I sleep through 6 - 8 hours of surgery.  

So, that meant my mom and dad will have to take care of the kids while I am going through this.  We decided it would be easiest on them do this when they are out of school, so either over Winter break ("ski week"), or Spring Break.  

Spring Break won out; my surgery is schedule for Wednesday April 17, 2013 at UCSF with Dr. M and Dr. L.  Wish me luck.

The Trans-what?-ian approach?

Warning: graphic surgical cartoons to follow!

Translabyrinthine Approach (Translab)


The below definition is from earsite.com as well as the images that follow:

The translabyrinthine approach is an approach that involves an incision behind the ear and a craniectomy (i.e. permanent removal of bone) of the mastoid bone and the semicircular canals of the inner ear. A consequence of this approach is the complete loss of hearing on the operated side. Tumors of all sizes can be visualized and removed using this approach. At the end of the operation, fat is harvested from the abdomen and used to replace the bone that was removed. This helps prevent the possibility of spinal fluid leakage. 

This is from wikipedia:

The translabyrinthine approach was developed by William F. House, M.D., founder of the House Ear Institute [1], who began doing dissections in the laboratory with the aid of magnification and subsequently developed the first middle cranial fossa and then the translabyrinthine approach for the removal of acoustic neuroma.
This surgical approach is typically performed by a team of surgeons, including a neurotologist (an ear, nose, and throat surgeon specializing in skull base surgery) as well as a neurosurgeon.

And this article highlights the pros and cons well:

Pros: The one taught in medical schools, this surgical approach is preferred by many surgeons since it gives an excellent view of the tumor in the internal canal. Translab provides direct exposure of the tumor without the need to push aside any brain tissues to get at it. Translab makes it easiest to avoid the risk of facial nerve damage and facial paralysis (according to an article by a prominent neurosurgeon Dr. Brackmann, this is because translab permits positive identification of the facial nerve). Also, few muscles are attached to the mastoid so that there is little muscle pain after surgery. This surgical approach can be performed relatively quickly for small tumors.  
Cons: Total deafness and loss of vestibular apparatus (balance organ) are guaranteed.  The exposure is relatively small, so removal of large tumors may take longer and may be riskier.  For such tumors, even when the facial nerve is preserved, there is a risk of a significant drop in the quality of life as a result of accidental damage to the brain.

I have compiled the words from earsite.com and Baylor College of Medicine.  The Baylor site has actual surgical images; I find them too graphical and I can not really understand what I am looking at anyway.

Step 1 to 3 can take up to 3 hours to perform.  That part is done by the ENT, in my case Dr. L from UCSF.  The resection of the tumor itself it done by a neurologist, Dr. M from UCSF will be doing that part.

Step 1: A translabyrinthine approach to excision of an acoustic neuroma is illustrated.  An incision is made behind the ear.

Step 2: The mastoid bone and surrounding muscles are exposed

The mastoid bone has been exposed and partially drilled out. Water is constantly flushed over the drill tip to keep it cool, and bone chips, etc., are suctioned away from the site. Various sizes and types of drill bits are used, including diamond bits. The temporal bone contains some of the densest bone in the body, and has to be drilled away very carefully.
 
Step 3: A mastoidectomy is performed exposing the semicircular canals, venus sinus, dura covering the brain, and spinal fluid.  The semicircular canals are removed exposing the internal auditory canal.

Step 4: The tumor is exposed and the dura of the internal auditory canal is opened.

The vestibular nerve is cut with precision surgical scissors in order to get to the tumor. A small "cottonoid" which is used to absorb liquids in the area and increase visibility.

 Step 5: The tumor can be seen extending into the internal auditory canal.  The trigeminal nerve that is responsible for transmitting information on facial sensation is displaced.  The central portion of the tumor is gutted out allowing the capsule to collapse on itself.

Tumor which is remote from the facial nerve is cauterized and removed bit by bit.

Step 6: The capsule is then dissected away from the facial nerve.

Step 7: The dura is laid back in place.

Step 8: Silastic sheeting is placed.

Step 9: Fat harvested from the abdomen is used to fill the cavity to help prevent spinal fluid leakage.

Step 10: A titanium plate is then laid over the fat.

Step 11: The incision is sutured