willandadri.com

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

so amazingly thankful for every friday night.  will had to work a little late, so i called him and had him meet me for dinner.  it was good to get out of the house and wind down the work week.  we planned to get up a tad early on saturday so we could head down town to wake forest’s herb festival before striking out to cary for the great grapes wine event.  we found a lot of great things to add to our garden and can’t wait to see all of our plants in full bloom this summer. 

the wine festival was a great relaxing time.  we sampled tons of different wines from many different vineyards and by the end of the day had classified ourselves as wine snobs.  regardless, we still had a great time sipping a bottle by the pond and enjoying our picnic basket.  the sun was out and there was live music, what more could you want? 

sunday was relaxing.  after church we planted our new peonies and got the grass cut.  will caught us up on laundry, since i am the new master of the john deere.  amelia decided she’d play along for some photos while we watched the sunset on another perfect weekend.  this time next week – we’ll be watching the sunset on the ocean!

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.

we were on the go like wild fire this past weekend.  friday night we headed out to do some mattress shopping.  with will’s upcoming surgery we thought it really made sense for us to go ahead and purchase the king sized bed we’ve been dreaming of.  we went to haverty’s and tested out about 30 different styles and brands.  we felt a little like goldilocks, but felt we really narrowed down exactly what we were looking for by being thorough.  after looking at haverty’s for about an hour we decided it was time for some dinner so we headed to waraji.  we always love waraji’s sushi and were not disappointed by this visit.

saturday morning we woke up early and headed to the farmers market.  we picked up some heirloom tomato plants (3 different kinds, one purple, one green, and one pink), some thai basil, some organic honey, some red pepper sauce, and some lime cookies.  we then got our traditional wake forest coffees and hit the road to furniture land south in high point.  back when mom and dad were looking for furniture for their new house, i went with them to this massive location where you can find furniture for up to 70% off retail.  i figured this would be a good spot for us to go look for beds.  we arrived at about noon and headed to the clearance center.  we tested out all of their mattresses and found one we really liked for $200 less than haverty’s price.  after we selected that we headed to the regular store to look at their bed selections.  with 4 floors of furniture spread over two buildings they have just about everything you could imagine.  we worked with an associate who informed me that they were able to order the bed of my dreams, but it was not on the sales floor.

you see, i have wanted a particular bed frame since 2007.  i found the picture online and book marked it to occasionally look at it and drool over it (knowing i could never get it because it was too costly.)  however, i figured we would just give it a shot and see how much it costs, after all everything is discounted!  the sales associate drew us out some maps and told us she would call will’s cell when she got the pricing on that bed.  we wandered around for hours, not really finding exactly what we wanted – and did see a similar bed that we liked, but it was nine thousand dollars!  gulp!  it was shortly after this that we ran back into the sales associate who said she tried to call us, but left a vm. (when we got home we heard her message on our home machine.)  she informed us that the bed i wanted was 60% off the retail price!  we were so shocked we told her we would continue to look around, but i confirmed with will that he loved it as much as i did and we thought it was a go.  we were so dumbfounded we thought for sure she made a mistake, so we reconfirmed that it was king size and it was for the entire bed, not just the head board etc.  she chuckled and confirmed it was for the entire king size bed. 

so, after going to the show room and looking at the quality construction of their other pieces, getting warranty information, and hearing how each piece is hand carved and constructed, we decided to place our order.  i was still in shock, and think i still will be until the bed actually gets here!  now we just have to decide how we want the furniture laid out so we know where this goes when it gets delivered.

we made it home around 9pm on saturday night and headed out to walk the doggies and do some relaxing before we needed to get up at 5:40 the next morning to get ready for sunrise service at church.  it was the first easter that i did not dye eggs, and i started regretting not doing this around that time.  however, with no dye and no energy no eggs were easterized this year.

wake up time came early on sunday morning and i popped out of bed like a bunny ready to get gussied up for sunday service.  we were only 1 minute late for the 7am service, which we were both proud of, since we are famous for being late to everything.  the service was small and intimate as we gathered around the 6′ wooden cross on the side of the church.  pastor matthew called for us to take stones (we’d previously been asked to gather) and lay them at the base of the cross as a symbol of something that we needed to push/roll aside in our journey with Christ.  will and i both found the service very moving and were super happy we’d woken up so early.  after the service dave prepared a delicious pancake breakfast and we chatted with everyone before heading out to greensboro.

when we made it to greensboro we checked out some plants at lowes and tried to make a plan to re-organize our front flower beds.  we’d had dwarf nandina bushes in our front beds since we moved in, and they were never our favorite.  not finding anything we liked at their lowes we decided we’d head to our own store after we got back to wf.  later on we headed to print works bistro at the proximity hotel for an amazing easter lunch.  we tried escargot for the first time, and i finally found something that will does not like!  he made the most terrible face and threatened me with vomit if i made him eat one more bite.  we decided he could never be on “no reservations” or “the amazing race” since he had such an aversion.  however, i found them to be a lot like clams and mussels and i consumed the entire app myself.  after lunch we headed outside to rest on their patio and admire all of their beautiful plantings.   once we’d hung out in the sun long enough we decided to make our way back to wf.

we got home, changed clothes, and headed to our lowes to look for nandina replacements.  we found 27 plants we thought we needed to take home and promptly filled up the jetta and headed home.  i began digging up bushes and before we both knew it we had an entirely new looking front plant bed.  bye bye nandina!  we both really love the look of the new plant bed, and now we just need to get it mulched and we will be good to go!