willandadri.com

surgery went amazingly, perfectly, remarkably well.  dr. zomorodi came out to give us the good news just about 2.5 hours after the surgery initially began.  we were elated to hear that everything went according to plan and that it was already confirmed that will’s spinal fluid was once again freely flowing.  they let us know that will was moved to the icu and shuffled us from the 3rd floor waiting area to the 4th floor waiting area.  we’d had an outback steakhouse style pager throughout the entire process that alerted us when he was ready for visiting pre-op, when he was given his second round of anesthesia, when the surgery began, when the sutures were being put in, and when the surgery was over.  we carried this little pager with us up to the 4th floor and waited for some buzzing action to go see our surgery survivor.  after about an hour of us being impatient i checked with the nurse who told me will was ready for two visitors.  lori and i gathered up all of our worldly possessions (including and not limited to a rather large bag that weighed about 400 pounds) and made our way back to the icu. 

we found will laying peacefully in the bed in the icu, looking as great as usual and were surprised how wonderful he appeared.  he seemed to be dealing well with the medications, morphine pain pump, and other drugs the attending nurses were supplying him with.  he rested well and immediately fell in love with some lime sherbet.  the nurse made sure he had an endless supply and i stayed with him until they kicked me out for the night.

the following morning i showed back up at 8:30am as soon as visiting hours began and found will sitting straight up in the bed munching on some breakfast.  i thought he was doing pretty good to be eating scrambled eggs, but it was not until about 30 minutes later that i found out he had already scarfed down some bacon and home fries!  that boy was hoongry!  he did well throughout the morning and they got him up and walking a lap around the icu before they determined he was ready to move to a regular room around 1pm.  they asked if he would like to be driven in his bed, or walk over to the new room and he decided he was good enough to walk, so off they went.  lori and i tagged along behind him lugging our 400lb bag and everything else we’d seemed to accumulate over the past 24 hours. 

we arrived to will’s new room – 4130 on the same floor as the icu, just around a different wing.  we got will settled in and tried to get him comfortable.  he seemed to be doing okay for a while, but then his morphene began to wear off and the pain began to escalate.  a group of 1st year med students dropped by to ask some questions and learn about patient-doctor relationships, and we allowed them to sit and chat for about half an hour.  after this visit will really felt his condition was declining even further and we then had to try and seek some additional attention from our nurse.  unfortunately the pain combo they first attempted was not putting a dent in the pain and the pain had risen from a 3/10 to a 9/10.  will felt frustrated and irritated in the lack of time of the response and the pain he was feeling.  luckily a new nurse came on board around 7:30pm and sat and listened to our frustration and got will on a new pain combo.  his new medicines are working much better to curb the pain and he is now settled at a 3 – 4 out of 10 for the most part.

he’s been up walking two laps today and has gone up and down three stairs to prepare him for getting into the house.  the nurse removed the original gauze bandage and replaced it with a new bandage.  will’s scar is sutured with nylon stitches and looks perfectly healthy.  the incision measures about 5 inches in length and extends about 1 inch past his hair line. 

we’re staying on top of his pain meds and keeping him perky with piles of delicious treats from the cafeteria and around the durham area.  he’s received 4 flower arrangements and two balloon bouquets that brighten up his room and help him keep focus on the healing process.  he attempts his neck exercises and works on them as much as he can while his pain meds are in full effect.  so far so good.

he’s been a trooper, cracked some jokes, and looks like a precious doll resting in his bed.  so proud of all he’s done, the pain he is dealing with, and the grace in which he has handled it all.

I went back with Will and Matthew for a pre-surgery prayer session. Will found comfort in the calming words Matthew offered. I stayed with Will until the first series of anesthesia cocktails were administered and they took him off to another pre-op waiting area where the breathing tube and head confinement gear would be put in place. We were just paged again and informed that the surgery is now underway. We’ve been here since 9:30am and they tell us that Will should be done with his surgery and in the ICU recovery afterwards. Lots of nervousness and jitters were in place for both Will and myself this morning, but we know that God has everything under control and that we will have him resting calmly soon and on the road to recovery in no time. Thanks to everyone for your continued love and support. Will update you as soon as we get more information.

So as you may notice I am jumping around in the time frame a bit.  I decided to post smaller topic specific entries so they can be digested by the reader in smaller more meaningful chunks.  This will also help me work with my ADHD and ensure that I do not forget to post something important to me because my mind wandered off on a tangent as I changed topics.  You will also notice a common theme in most of my postings.  My emotional journey was very diverse and my mood could change quickly for no apparent reason.  Many people will feel this way and it is completely normal for what you are going through, I just tried to make sure I allowed myself to accept and experience these feelings instead of bottling them up.

So the day before surgery arrived and was met with both excitement and anxiety.  I was sad because we were leaving the beach and I knew I would not be returning until September.  I was excited because we were going to pick up Lori at the airport in the evening and it is always a blast visiting with her.  I also felt anxious because it seemed time was slipping through my fingers so fast.  I still didn’t really know what to expect for recovery from the surgery but it seemed as if each step we took (leaving the beach, calling the surgery hotline, picking up Lori at the airport) seemed to happen at a steadily accelerating pace propelling me towards the dreaded surgery as time passed in a blur with events happening merely in my peripheral vision.  I started to panic feeling as if I was not ready and not prepared but surgery was looming ever closer on the horizon and there was nothing I could do to make the situation any better.  I tried to simply hold on tight, keep all the pieces together, and not fall off the ride as we zoomed right along.

Shortly before I was to call the Duke hotline they called me.  I was requested to arrive at 12:30pm the next day to check in for surgery. While I felt very relieved to finally know when the surgery would be taking place, my anxiety level also increased as the whole experience was made more real.  We distracted ourselves by sending updates via telephone, Facebook, and email to notify friends and family of when the surgery was anticipated to start.  I then got online to look up Lori’s flight information and received a text message from her saying she was delayed just as I saw the delayed status online.  Her flight leaving Chicago was delayed and she was stuck on the tarmac at Detroit waiting for them to find another pilot as the primary pilot called out sick with the flu. I called the Pit and explained our situation and they were kind enough to allow us to bump our reservation back by 45 minutes even though their website said there were no more reservations available for that day.  We left and picked up Lori at the airport before continuing on to the Pit for a fabulous dinner.  More sadness set in once we were seated as I realized this was my last meal before surgery.  They were out of the beer I had wanted to try but I was able to select a 2nd one with no problem.  They also told me they were out of the meatloaf that I finally decided to try after eying it the past few times we came to the Pit but after I gave him the evil eye the waiter said he would go check and returned with good news.  We enjoyed our dinner and catching up and just being in this moment of normalcy before the unknown began.  Once we returned home it was time to take a shower using my own shampoo and some special anti-bacterial sponge provided by the hospital.  After the shower it was past midnight so I was no longer allowed to eat or drink anything and went to bed knowing I needed the rest but wishing that sleep wouldn’t make the next day come so soon.

we’ve been busy folks lately and wanted to make sure we took time to post our stories, as well as all of the photos that document will’s journey over the past week.  we’ve been to the beach for will’s b-day, we’ve picked up lori from the airport, and we’ve spent the week at duke hospital in durham, and come home to get will on the road to recovery.  below is a photo collage of the past week.  we’ll get back to the written documentation as soon as time permits.

4/23

sometimes its a lot easier to understand what exactly chiari and syringomyelia are if you have some visuals to look at.  dr. lipton graciously detailed these scans of will’s most recent mri files so that we could all more easily understand exactly what we were working with here.

still amazes me how complex the human body is, and how all of this is normally perfectly functioning in most people. 

let’s all pray that the syrinx is able to dissipate itself very shortly after the surgery is performed.

its going to be interesting to see how our blogging develops with us both sharing our own individual sides of the same story.  mine always comes with photos.  i have the camera, so i take the rights to posting.  no, seriously though will did confirm he’d like me to take pictures of his chiari journey.  you know me, any chance to take photos and i am all over it.

will has said everything i wanted to say regarding the surgery and the processes we’ve been through thus far.  the only thing i would like to add is how proud of him i am.  its not every day that someone can accept, handle, and cope with the stressors of impending “brain” surgery with grace and dignity, but will has done just that.  i’ve always been proud of him, but this trial in our life has reminded me how lucky i am to be married to such an amazing human being. 

loving you.

I suppose during those really tough times in life everyone is prone to some internal reflection. It is natural to draw inward and reflect on your relationship with God and have regrets that you have not done as well as you could have and should have.  We all are fallen people.  As I drove in to work today I was again reminded how blessed I am to have such a strong support network going through these tough times.  A myriad of thoughts passed my mind and I just had to write them down to capture them before they were forgotten.

I may not know why this is happening but I am firmly convinced that God is in control and it is happening for a reason. I can’t fathom how somebody could go through something this tough without that faith and belief. Because of my faith I trust that God will take care of me and everything will work out well in the end. Because of my faith I know that even if everything doesn’t turn out well in the end God is in control, it will happen exactly as he has designed, and there is a purpose behind what happens.

I am also a firm believer that God uses trials and tribulations to draw us closer to him and that for those of us (like myself) who are very stubborn, the trials are often more difficult to manage.  I know that with my personality if everything in life were going great God would take a back seat and I would think that I do not need him.  It is sad to say that many people naturally fall under that category of only calling on God in great times of need.  I believe God allows these trials in our life as a constant reminder that we do need him.  2 Corinthians 2 : 7 – 9 have been my mantra in this belief.  In this passage the apostle Paul is quoted:

To keep me from becoming conceited because of these surpassingly great revelations, there was given me a thorn in my flesh, a messenger of Satan, to torment me.  Three times I pleaded with the Lord to take it away from me.  But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.”

This is a very powerful and loaded passage to me.  There has been a lot of speculation on what this thorn in the flesh is but that is beside the point.  While most of us may have not had a surpassingly great revelation, I believe we all suffer with one or more thorns in the flesh as a constant reminder that God is in control and we are weak humans who are in need of his fellowship, mercy, and healing.  It is a reminder that we are saved by grace not works and that it is okay if we are a mess.  To God we are a beautiful mess.  We will all fall down but we will be fine as long as we realize the important part is that we get back up and continue moving in the right direction rather than continue to lay on our face wallowing in our failure and self pity.  It is also a reminder that God uses the most horrible things in our life for his glory.  Certainly we should take notice when someone who has seemingly never had difficulty says I am truly blessed and God is good.  But to me the most powerful stories are those where people have a sordid and scarred past and say I was the lowliest of the low, not worth anything in people’s eyes, I have done horrible things, but God saw me and loved me anyway and has really turned my life around.  It may sound crazy to others but I believe that without weakness and tribulations our character is never truly tested and our witness is weakened.

I also believe that God has had a strong hand in these current trials.  Many may consider it coincidence but I consider it Providence.  I will give you just a few examples although I could really go on and on for a long time.  Before I was diagnosed with Chiari and Syringomyelia I was struggling with back pain and looking for alternatives.  My mother-in-law suggested a DO as an alternative to a chiropractor.  I asked my doctor about it and lo and behold there was a DO in her office although she informed me that they were very hard to find in NC.  Fortunately for me he did not do neck, head, and upper spine adjustments.  I did not know at that time but that would have been disastrous for somebody with Chiari.  I now know that if you ask a reputable Chiropractor to do a neck, head, or upper spine adjustment and they are aware you have Chiari they will refuse to work on you.  I have read the phrase “like throwing a match in a gas tank” in regards to having adjustments. The timing was also fortuitous as we are now beginning preparing to begin the adoption process.  I can’t imagine how tough it would have been on my wife if we had actually adopted a little one and she suddenly had to take care of both me and an infant.  Or worse if we were notified that there was a baby we could adopt but we had to turn down the adoption and put the process on hold to sort this surgery out.  I have no proof but also now believe that our previous miscarriages may be partially if not fully my fault simply because there is no proof but much evidence that Chiari is hereditary and many Chiarians have children with Chiari as well.  I can’t help but think it is not coincidence that our pregnancies terminated at the exact same week and day each time and it just so happened that this was during the beginnings of the brain development stage. Also the fact that I have not had the opportunity to take a vacation and have plenty of sick leave and vacation leave built up and that my wife works from home so she will be much better equipped to help support me post surgery is very helpful.  As I said I could go on and on about how all the pieces of the puzzle just have fit together perfectly.

I have also been very blessed to have such a strong and supportive Church family.  We are a small group but a very close, devoted, and supportive group.  If you are in the Durham area and are looking for a church family you should check us out at www.peacecovenant.org and www.facebook.com/peacecovenant. While I live in Wake Forest my surgery will be in Durham and the support and well wishes I have received from my Church and Work families has been humbling.

And lastly I will be loading up my iPod in preparation for surgery with some inspirational music from Casting Crowns which is my absolute favorite Christian group.  If you have not heard them before I would highly recommend checking them out.  I have always struggled in the past with thoughts that God could never possibly love me because I am not good enough.  At a particularly low time I heard my first Casting Crowns song “East to West” which was and continues to be a good reminder and immensely helpful.  When going through life’s trials their “Every Man” and “Praise You in this Storm” have gotten me through and continue to be my favorite songs to date.  Possibly because those are the first I heard or possibly just because the message in them is so powerful and meaningful.  At any rate I will be loading them up this evening to try and keep me going strong and positive throughout the surgery and recovery.

So I have been meaning to post for a long time now, not sure why I haven’t. I made a commitment to blog about my experiences with Chiari / Syringomyelia and the accompanying decompression surgery and recovery not only to help myself remember but hopefully to help any others who are diagnosed and find themselves as confused as I was. Luckily my wonderful wife filled the void with the background so I will just start with where we are at today.

I had my pre-op appointment this morning. A wonderful benefit (which I didn’t realize at the time) of scheduling it for early in the morning is that you aren’t awake enough to be nervous before you are done. We had to be at Duke in Durham at 8:15 so with traffic to be safe we left Wake Forest around 6:30.  We were happy to find that the directions were pretty straight forward and everything was very clearly marked and easy to find.  I was also very pleasantly surprised to see how quickly I was moved through the system.

When I arrived they checked me off a list and asked me to fill out some paperwork (pretty standard medical history stuff).  I began filling this out and was called up to Admissions to process insurance, verify identity, etc much quicker than expected.  After done with Admissions I sat back down and continued the paperwork.  Was then called back by the nurse to take vitals (still carrying my paperwork with me).  Once done I went back to the waiting room thinking I surely had plenty of time now to complete this paperwork.  To my surprise I was almost immediately called back to a room and a nurse came in to brief me on what to expect and answer any questions I had.

Surgery sure has changed since the last time I had to have it.  I was told to call a hotline number Monday night to find out when to arrive on Tuesday for my surgery.  No food or water after midnight on Monday and I am supposed to use some special antibacterial soap to take a shower both Monday night and Tuesday morning.  I am also not supposed to shave.  On Tuesday I am supposed to go straight to the 3rd floor (very odd to note that every surgery I have ever had has occurred on the 3rd floor regardless of the state or hospital) to register.  Surgery is supposed to begin about an hour and a half after we arrive and is scheduled to last around 3 hours.  We will be taken to a waiting room where the anesthesiologist will come talk to us and give me some margarita in an IV until I pass out.  My wife will be given an Outback Steakhouse pager (their words not mine) so she can wander around the hospital grazing at the cafe or using the wifi until the pager goes off to notify her the surgery is complete. Then she will wander back to the waiting room where the surgeon will meet her to discuss how the surgery went.  I will be taken to the ICU (standard procedure) and she will be able to visit me but not stay overnight.  Then I will be moved to a standard (but private) room where she can stay overnight and I am expected to enjoy the hospital’s accommodations for 3 – 5 days.

After this bit of information another nurse came in to take more vitals, discuss my medical history again, and take me down for some blood work.  It was explained that there was a possibility of a blood transfusion but they try to avoid it and don’t do one unless your platelet counts get very low.  So they do the blood work to see where your platelet counts are at currently to get an idea of what to expect.  Since I have high blood pressure they told me it was also standard procedure to have an EKG.  After the nurse hooked me up and confirmed my heart was beating and I was indeed alive, I was released back into the wild.  It was fortunate that we got there early because the waiting room was jam packed all the way out into the hall when we left but I only ended up spending a little over an hour there.

So here we are, waiting for the day and nervous knowing enough to be dangerous but not enough to really know what to expect.  To be honest my biggest fear is verifying I am doing the right thing by having this surgery.  I must confess that since my symptoms (aside from the back pain) have not been nearly as bad as many other Chiarians on the support groups I sometimes feel like I am an imposter having this surgery (I can’t think of any way to better state what I’m thinking).  But then I remind myself the neurosurgeon said we caught it early and this is more like a preventative car maintenance making sure that the symptoms don’t get any worse and don’t get to the point of doing permanent damage.  I have also been blessed to have many friends and indirect contacts in the medical community who have offered to review my reports and MRIs so I have gotten a consistent consensus from multiple unbiased sources.  That definitely reassures me that I am doing the right thing so now my only nervousness is pain management.  It doesn’t help that the last thing the neurosurgeon told me was “I won’t lie to you, this is probably the easiest / most standard surgery that I perform but also the most painful”.  And of course knowing that everybody’s recovery is different makes me nervous because I really won’t know how my body will react until we actually get there.  But the nurse reassured me that they would make sure I was comfortable and not to worry because it impedes your bodies ability to heal if you are tense or in pain.

So long story short just keeping my mind busy on other things making sure I am as prepared as possible to be down and out for a month and looking forward to a birthday beach getaway this weekend.  Adrianne is doing her best to make sure I have a stress free and relaxing weekend.  She has taken care of every last detail even down to driving to the beach because she knows as much as I love the beach I hate driving because finding public parking stresses me out.  She rented a beach house for us so this won’t be so much an issues but it should be a very fun relaxing time just to be on the beach hearing the waves crash, smelling the salt in the air and feeling the breeze on my skin.  And of course being the foodie that I am it doesn’t hurt any that she has planned dinners each evening of my favorite foods and restaurants (including an evening sitting on the pier over the beach eating seafood and sipping wine).

The fact that I have been so calm so far as the surgery approaches has been very shocking and I am just waiting for the bottom to fall out.  Certainly I have to admit it has affected me; with my personality I have a habit of suppressing unpleasant things and not admitting that they are bothering me.  I know it has affected me because I have been having trouble sleeping (some nights only getting 2 hours) and when I do sleep I have really bizarre off-the-wall dreams.  I also periodically have been known to get very agitated and frustrated over very small things, have mood swings, and just out of the blue feel like crying my eyes out but luckily these periods have only lasted a few minutes and have been pretty few and far between.  While I have amazed myself (and others) at how strong I have been so far, I have a feeling I will be an emotional wreck this weekend but she has taken such precautions to make sure I have a relaxing and stress free time and has been so supportive I’m sure everything will be fine and my worry / focus has been more on trying to make sure all of the loose ends are tied up before the surgery.  (Did I mention my wife is the best wife in the world?)

So here we are less than a week before the surgery and time feels like it is slipping through my fingers with the surgery approaching at a wreckless pace.  I will try to do my best to make updates on here both for myself and potentially others but we shall see … more to come

To learn more about Will’s condition visit the following site:
www.asap.org

recently we’ve been swamped with prep work for will’s upcoming surgery.  we’ve consumed every waking minute with thinking about things that need to get done prior to the surgery, worrying about the surgery and its aftermath, or trying to occupy ourselves with things so we will not think about it at all.

if you are scratching your head asking “what surgery”?  then let me throw this car in reverse.  (beep, beep, beep, beep – that is my back up noise.)

will’s been experiencing back pain for about a year now.  at first we blamed it on our 13 year old bed, then we would blame it on how he sat in bed till 3am working hunched over a lap top, then we blamed it on too much yard work, and then finally in january he got to the point where he was having trouble getting out of bed and we figured he better go get things checked out.  he went and saw our primary care dr. who had him get an mri.  he had the mri done and then waited for a few weeks for the results.  when he got the results from our primary doctor she told him he had bulging discs and then scared us with some crazy terms like “chiari malformation”, but quickly went on to tell us that lots of people have that, and there was “nothing to worry about”.  she said what concerned her more was a pocket of fluid on the spine.  she referred us to a neurosurgeon.

i am not sure why the referral did not scare me, or why i did not really think too much about it when she said the word “neu-ro-sur-geon”.  well, we went on about our lives, will in pain and me in a fog and waited for the doctor to call us back with an appointment.  after a month of no action will called back and lit a fire and got an appointment.  we went into the appointment armed with a notepad full of questions.  we were ready with all of these:

• can he get acupuncture?
• can he go to the chiropractor?
• what about a doctor of osteopath?
• will massage help him?
• is there any homeopathic medicine he can take?

our appointment took forever and we were delayed about 3 hours before we actually got to see the neurosurgeon.  when we did see him he had not received will’s mri and could not confirm or really tell us much of anything.  however, in the brief 5 minute period he did spend with us he informed us that he could simply cut into the back of will’s skull to make a larger opening for the cerebellar tonsils and then the fluid would flow more freely and we’d be all set.  well, then, if it was that simple let’s just get right to it!  omg!  the freak out began.  we just closed up our little notebook of questions, and went home.

we got in the car and looked at each other like all of the wind was let out of our sails.  i kept trying to convince will that the doctor had not seen his mri and he really did not know if that was what will needed or not.  all the while this was helping me to not lose it.  we called family and friends and i went into full on investigation mode.  you would have totally called me “baby” from criminal minds.  my google fingers were fast and furious.  we learned what chiari malformation was, and also figured out the big word the neurosurgeon used that we’d never heard before – syringomyelia.  we dug and unfortunately found out that the doctor was 100% spot on.  this was exactly what will needed – a posterior fossa decompression surgery.

since that appointment we’ve schooled ourselves on this, will’s had further mri testing, been to another neurosurgeon, and met again with our first neurosurgeon and decided to have this surgery on the 27th of april at duke university hospital.  the surgery is called a lower skull base surgery and basically enlarges the opening at the base of the skull to allow the cerebellar tonsils to hang as they may, while still allowing the spinal fluid to more freely circulate, thus eventually alleviating the syringomyelia and relieving the back pain.  the surgery will have will in the icu for 24 hours and then in the hospital for the remainder of the week.  when he comes home he will be on bed rest and on heavy pain medication.  we’ve got lori flying in to be our chiari support staff.

however, hopefully in about a month’s time will can start to notice a decrease in his back pain and will hopefully be fully healed from his surgery.  doctors advise that he keep things low for 60 days post op, and our only major upcoming plans after his surgery are a trip to corolla in september. 

so right now is a time of being busy bees – to distract, while at the same time totally focusing on what is happening.  it’s the strangest predicament.  last friday we went to art after hours and listened to live music on a 1950’s swinging glider rocker outside of the sunflower studios.  we just rested our heads on each other’s shoulders and sipped our coffees while we listened to the words of the songs and watched the stars in the sky.  both of us are nervous and scared, but we know we are doing what’s best, what’s preventative, and what’s got to be done before his condition gets any worse.