My surgery story…



Hello to all who have been keeping up with my post-op recovery.  I’m very thankful to say that I am doing well.  I have had some really good low pain to pain free days.  Other than when the storm fronts move in I have felt better than I have in years.

For those wondering,  I can tell you all what kind of surgery I have had beyond the basic Posterior Fossa Brain Decompression.  [Note: see links at right for more information.] That means my bill arrived a couple days ago.  Thank God we had insurance because my brain just became un-insurable (is that a word?) in that major companies won’t underwrite me anymore…or at least the major companies I contacted aren’t offering me insurance.  😦 

For some reason they don’t like big spenders like me.  I guess they’d rather buy themselves cars instead of forking over the $$$ to the neurosurgeon.

So here’s what was on my bill: 
1. Craniotomy for Chiari Malformation 1
2. Craniectomy-explore/decompress cranial nerve
3. Neuroplasty
4. Cranioplasty-skull defect 5cm
5. Use of microscrope
6. Intraoperative ultrasound
7-11. Ditto #’s 1-4 for the NS assistant.

Of course, added to this will be anesthesia, anesthiologist, neurophysiology, neurophysiologist, nurses, ICU, reg room, drugs, food, monitoring, monitors, rolls of tape, IV’s, tubes, catheters, labs, radiology…and all the other bills not delivered to my mailbox, just yet, and still pending insurance payment.

I haven’t met with my NS yet for a post-op check so I don’t have anything from the surgery other than what we were told right after.  Which was that they saw a 50% improvement on my left side (which is where, from the consultation report, the major compression was) and the operation was a success. 

Notice I didn’t say cure.  There is no cure for ACM!  Only ways to lessen, hopefully, or at the least pause damage to the brain and central nervous system.

Back to the surgery…As you all know there was a delay in my surgery, a change took place that I was unaware of, and so, I had to wait a few hours extra to begin my recovery.  I had such peace before surgery that I was good with the wait.   I was able to spend some time alone with the Lord and He gave me a song and a Bible verse to strengthen me.  It was a wonderful time of worship for me and a life altering experience.  This condition has been filled wth moments like this that I will cherish.

I had little to no anxiety until after surgery.  And then it was because it felt as though my head was going to split apart every time I had the dry heaves.  That was actually why I hit my pain pump trigger…to stop the nausea which happened everytime I roused from my delirium. 

I began to feel better and hit the button less and less so my NS stopped the pain pump. I had only used it a handful of times and was saying I was at a 6-7.  Was I insane, or what?  Definitely!  My pain was off the charts at times.  It just wasn’t the times they happened to be asking me to give them a number.  It was the times when I hit the button.  So when they asked, I didn’t want to seem ungrateful and knew I had to adjust to the pain at some point, so I didn’t force the issue.

They realized my pain had increased and put me back on the pain pump, that time with Morphine.  It made me feel odd.  Flushed.  Breathing was difficult.  My neck seemed constricted.  So I didn’t use it, but 3 times.  (Compare that to the other pain pump where I was counting the minutes until I could push the button again.)  At the same time they were pushing 3 different nausea meds into my IV, alternating each one every 2 hours. 

It was during those high pain dry heave stricken moments that I questioned why I was there.  Thinking that maybe I should’ve waited until the Chiari symptoms were more serious.  Just like every delivery with each of my 8 kids it was too late to chicken out.  I went back to the many times I had spent with the Lord asking His will for me and I knew HE had me there. 

Rather than focus on the pain I did what I knew to do, get in my zone.  ‘My zone’ came about when I was pregnant with baby #4 and knowing I could block out all but the worst of the pain by thinking about something else.  So I got in my zone by using those moments to pray for others.  I have no idea how complete those prayers were due to the drugs and pain.  I do know there were a few people who God consistently impressed upon my heart who are facing more difficult trials that I managed to ask God to help.

I would end up falling asleep during those prayers and would wake up with the pain only to complete the cycle.  Even though I had family and dear friends there in my room their company wasn’t enough.  At times it was more painful because I had to think to answer their questions.  Or their voices in the room were more than I could bear with my extra sensitive hearing.  They always entered a dark room because I had severe photofobia.  I look back at these snapshots in my mind and it seems like it was just a few hours, or so. 

There is something profoundly more painful having to lie flat on your back for 48 hours.  Not only did that cramp my side sleeping preference but it put all the pressure on my incision.  Which means the staples in the back of my newly enlarged head were constantly being pressed.  My neck was too stiff and painful to turn it to the side to relieve the pain.  Nor could I use a pillow to alleviate some of the pressure.  Thankfully, the bed was brand new and fairly comfortable or I would have been telling them I was a 15 or 20.

I struggled wth the nausea for all of 2 1/2 days and I was incredibly hungry and in withdrawal from the nightly meds I took at home.  I couldn’t tolerate swallowing anything, even small pieces of ice, pills were out of the question.  So had the dry heaves been resolved I still had issues from a very parched and swollen mouth and throat.  All of that began to resolve on Thursday late morning after I was able to eat, and keep down, a fresh fruit cup.  That afternoon I was up walking the ‘block’ around the unit.

Wednesday morning they started raising the head of my bed by 10 degrees every hour.  That was hard to handle.  Not only did the nausea hit but it also increased the pressure to the back of my head. 

That afternoon they had me moved out of ICU and into a regular room.  But they forgot to lift the bed…and I didn’t remind them.  My nurse that night then tried to play catch-up by telling me I needed to order some food to eat.  The idea of food was appealing but all I could stomach was broth.  Thankfully my NS checked on me before my food got there and he gave me the order to stay put in bed.  I was a bit too excited and might as well have said, “nana,nana, boo boo” to my nurse when she told me I needed to sit in a chair to eat.

On Thursday the NS assistant/resident (not sure what he’s called) saw me that afternoon and about choked on his surprise.  I was looking pretty bad Wednesday morning so he was pleased to see such great improvement.  Discharge papers were signed and waiting on Friday morning.  Since I was feeling so good and our insurance expired that day I felt it was time to head home.  (And definitely a blessing from God that I could!) 

I took a shower.  Did my best to cover my ‘zipper’.  Took my pain meds and headed out with Jay.  She stayed with us for a week and took care of the kids, and me.  They had a blast going to Build-A-Bear and Albanese Candy Factory with their Grandma Jay.  And she is having withdrawals from a lack of hugs and kisses.

So, that’s about all I remember other than the 9 seconds it took me to fall asleep under the anesthesia. 

Oh, and waking up to the tube being pulled from my throat.  And in recovery when they kept calling my name – Debra (that’s my official I’m in trouble get my attention name, woke me up *every* time).  I remember telling the nurses (and my family, I think) “I’m alive, praise God.”

That’s my experience in a pretty big nutshell.  Sorry for the long post.  If anyone has questions feel free to ask away here or email me if you prefer.  I will do my best to answer.

Before I close this post I would like for everyone reading to know that God answers prayer.  I have no doubts about that.  And I really have my prayer warriors to thank for lifting my name before the throne of God.  I’m ever so thankful for all of you who prayed!  And I’m thankful to the Lord Who was with me every moment!!!



One thought on “My surgery story…

  1. […] When you are only 40 (I know it sounds old, trust me, it’s young. Very young.) you will be faced with something that will require a great deal of courage and faith. You will be told you have Chiari malformation. After weeks of research you will have to decide if you are willing to continue to degenerate physically, and neurologically, or take a huge risk with an open dura Posterior Fossa Brain decompression surgery. […]

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