Two weeks after a six-level spinal fusion

Hello,

My name is Toby, and I had a six-level spinal fusion last week.  What a journey so far!  Before my surgery, I read this site daily and it helped me prepare myself for this “adventure”, so I wanted to pay-it-forward and hopefully help other people along the way!  I want to update this weekly, so you will be able to follow along with my recovery week by week.  The most important thing to me is that I am able to help anyone who is terrified right now.  I am happy to answer any questions that you have, so please feel free to post comments or privately message me; I am happy to even call or text if that would help you get ready for the beginning of the next incredible phase of your life  []

-Toby

Background:

Hello!  I have been meaning to introduce myself...I wrote a long email to a new friend on this site earlier, so I thought I could use it as an introduction to who I am.  I would love to meet new people who can provide me with some support!  I would be happy to provide some in return!

I was born with a disease called schwannomatosis which causes benign (so far thankfully) tumors to grow on my spinal canal (inside the canal itself).  In high school I began to have unreal leg pain – the worst pain I ever imagined in my life.  After finally having an MRI, the tumor was immediately discovered and I was rushed into surgery.  I had a laminectomy (or two, I don’t remember), and my back was mostly fine with minimal pain after the surgery.  

Fast forward about seven years, and I began to have horrible spasms that were causing me to have issues sleeping.  I went for another MRI and I had three new tumors (so the official schwannomatosis diagnosis was made then).  I had those removed, and T11-L2 was a total laminectomy, and above/below was partial.  I was Mostly fine after that, but the pain has gotten to be absolutely unbearable over the last two-three years.  I hurt all of the time… I’m on pain meds that put, at best, a dent in my pain.  

In July I met with a new neurosurgeon who didn’t dismiss as just a hypochondriac, and he saw that I do still have small tumors in my spinal canal (not priorities at this time), I have DDS, facet joint disease/osteoarthritis, and failed laminectomy syndrome; being that I’m 33, this is quite a bit to deal with I guess.  When I had my last big surgery in 2008, the neurosurgeon should have done a fusion at the time, but he was worried about swelling and he thought I would eventually need a fusion for support.  Next month, I am having a fusion from T10-L3; the bottom level will be an inter-body fusion (that’s the plan at least).  I have been terrified for this surgery, but I know that I need it and I can’t live another year with this pain… It has affected my career, my marriage, my mental health, and everything in between.  I used to be a fun person that skips around and has fun doing everything!  But that has all changed… Now, I can’t ride in a car for more than 20 minutes, by the end of work I am sweating because the pain is so bad, when I wake up I can hardly walk…. This surgery will help me to have a normal life again… it just has to…

The MOST important thing I have learned is that you do NOT take the advice of just one doctor.  Because of jerks that abuse pain medicine, many doctors dismiss serious back pain sufferers as just junkies, and it is heartbreaking to say the very least.  I saw three other neurosurgeons (THREE) that refused to give me help… they said “Oh, try yoga – it’s great!,” “you need to exercise more; you’ll feel better!”.  Granted, my symptoms weren’t as bad back then, but they made me feel crazy… I was depressed and I can’t tell you how bad it is to feel like you’re losing your mind and imagining pain.  Once I found my new neurosurgeon, he took one look in my eyes and he knew.  We did diagnostic tests (MANY injections into my joints) to isolate the issues (remember not all pain can be diagnosed through an MRI or CT scan) and we have agreed to do the surgery after a great deal of discussion.  In fact, my case was just presented at a group of neurosurgeons and the decision for the fusion was unanimous, and an additional specialist wants to come in and assist as my case is unique (see? I’m Not crazy).  

Sincerely,

Toby

12 Hours to go Before Surgery:

It’s almost here.  Twelve hours from now I will be brought back into the operating room with lights, tables, machines, masked assistants and surgeons, and hardware… the new hardware that will be with me for the rest of my life: titanium rods, screws, bridge plates, and all other types of things that are almost science fiction.  I can’t eat after midnight, so I am scarfing down some of the healthiest food I can imagine: stuffed crust pizza from Pizza Hut (pepperoni with garlic/butter crust - this is Exactly what doctors must imagine their patients eat the night before a major operation).  

I am a basket case, but I know that tomorrow is going to be amazing, and my life is going to start fresh… I will have light at the end of the tunnel, even though I won’t sleep a wink tonight.  (I ended up sleeping about four hours… more than during many other nights over the past couple of years.)

1. Now, here we are…. The big event…. The whole enchilada… 4/14/2017: Surgery Day

As soon as I woke up, I knew exactly what day it was; it was like I didn’t Really fall asleep at all (I actually dreamed about the surgery).  My wife and I showered and scrubbed my back with hibiclens so that I will at least start the disinfecting process (I had to do this last night as well).  I said goodbye to our three pets, and we hopped into the car hospital bound.  

When we arrived, we met my mom and in-laws, so I at least had family that could support my incredible wife during the surgery.  Once I went back to my pre-operation room, the nurse was horrible; she was criticizing the computers and other technology in the room (hello, woman, this equipment will be part of what keeps me alive), she made an inappropriate joke, and she was disrespectful to the other nurse (great start inside the hospital, I thought!).  Once my first surgeon came in, things really started to change for the better.

The neurosurgeon introduced himself and explained some of the things that I needed clarification on regarding my pain.  He asked me when I last went to work, and this triggered my first near-crying meltdown as I had answered, “The day before yesterday”; he thought I was joking!  He couldn’t believe the dedication that I had for my career because he was able to tell how much pain I have been in from my scans.  He explained that he is a spinal abnormality specialist, so I knew that he was perfect for my quirky spine surgery.

Now things are getting serious.  The anesthesiologist came in, and I told him immediately that I wanted to sign the consent to help me relax.  I had feared for weeks that I would just freak out and run out of the hospital, so I Really wanted to be relaxed!  He obliged, and I started to calm down.  My doctor came in along with the surgery team, and I could tell that I had a rock-star team!  I was so excited to see such kind and experienced people.  I had built this moment up in my mind for a year, and I couldn’t have pictured it better.

After hugging and kissing my wife goodbye, I was wheeled down the hall.  When I entered the room, I couldn’t believe how much equipment was all around!  I felt as though I just stepped aboard the Enterprise.  I was asked to countdown once the bed was in place: 10, 9, 8.., 7…, 6…., 5……, 4……………………..

“Are you awake?”  “It’s time to wake up.”  “Open your eyes, everything is over and you are okay… the surgery was successful.”  The.  Surgery.  Was.  Successful.  This was the statement that made me open my eyes.  I think that says a lot…

The first thing I noticed was that the initial pain was not nearly as bad as people had described it to me (probably because they were telling me about their first back surgery, while I have been through two large back surgeries before).  Once I was awake, my incredible wife came in, and I was so excited to see her.  She held my hand, told me she loved me, and I knew everything was going to be okay.  After I was somewhat lucid, she began to tell me about the operation, and she tried to show me some pictures.  I was in the “recovery area” for quite a while before finally getting to my humble room to recover.

Back at the room, I was able to comprehend a little better.  My surgeons found a significant pars fracture along with a missing facet joint (although the MRIs and CT scans observed some of this, I think the severity was still surprising).  The most surprising observation, though, was that my spine had an “astounding” rate of excess motion; as I was being placed on the table, my spine was filled with excessive and atypical movement.  When my doctor spoke to my family, he said that he could now absolutely see why I was previously in so much pain.  In addition, my right side had so little bone to fuse together that a third rod was placed into the fusion, so I have three rods that run the entire length of my fusion site.  Last, an interbody fusion was also added at L2-L3 to provide additional stability as I have had so many issues there with tumors, herniations, etc.; also, we are hoping that by strengthening the bottom of the fusion, we can reduce the likelihood of having to have additional fusions in the future.  

Back to the recovery story for week one.  From Friday the 14th until Tuesday the 18th, I was in my hospital room every minute except for my occasional walks around the halls.  The hospital staff came in CONSTANTLY to give medication, to check on me, to give me communion, to check my vitals; I was Exhausted… All I wanted was peace and sleep, but they didn’t give it to me for a second.  If I felt for an instant that I was going to nod off, I would hear the door knock, and someone would come in.  

The hardest part physically was, of course, to learn to stand up again.  It hurt incredibly bad initially, but the pain softened over the coming days.  It was almost remarkable how fast I Felt myself getting stronger.  I felt myself getting steady.  I felt myself feeling “new” pain instead of “old” pain (BIG difference for me).  Once I was able to stand up, I was actually doing pretty good!  I felt like I had just learned how to walk, and man was I loving it!  Even though it hurt, I loved the pain so much because it wasn’t “old” pain.  I hoped that I would feel new pain, and I had hoped that I would get stronger in the hospital, but how far my expectations were exceeded.  The PT nurses came in multiple times to get me to walk, do the stairs, and learn to sit down and stand up without a walker (I Nailed all of these!).  All the while, I was almost waiting for something bad to happen!  I asked myself, “What could Possibly go wrong?”.  Something did.

The instant pain medication pump to help me get through the initial sharp and aching pain was pretty great!  It was incredibly useful and it kept me sane!  However, it came with a cost.  The nursing staff simply said “Use this when it hurts.  You can use it every ten minutes as needed.”  Well, to someone who is in pain… that sounds pretty amazing.  And trust me, some of those ten-minute gaps felt like ten hours (and that is no joke).  Sure enough (some of you probably saw this coming), my stomach Stopped.  I don’t mean that my stomach slowed down, I mean it Stopped.  I knew I needed to take care of normal bodily digestive processes, and that just wasn’t happening.  I was getting food and prescriptions to get things moving, but nothing did.  I have never wanted to get things moving so bad, and they were frozen.  When they told me that it was the liquid pain pump that caused it (thanks for telling me!), I immediately stopped using it; cold turkey.  Even when I hurt, I knew that I couldn’t be okay until I had my stomach squared away.  Finally, I was prescribed a liquid bottle to drink (I can’t remember what it was called), and that Really got the party started.  (I have never been so happy to have my digestive system working).  

I took my first chair-bench shower on the 17th, and it was awfully cold and it wasn’t exactly what I was really looking forward to.  That final night, I begged the staff to leave me alone so that I could just sleep (I really couldn’t sleep, but I wanted so hard to try).  However, that didn’t last… At midnight, I paged the nurse needing my meds, and I needed them again at 4:00am.  

The morning of the 18th, I was able to meet with my doctor, and we began the discharge process.  I was incredibly excited to be home to spend time with my wife and our pets, so I couldn’t wait to get home.  After a very short time (only about 15 minutes), I was ready to leave.  I was given my last meds, and I got into the car and came home.  

After arriving home, I felt more tired than sore.  I felt more confused than in pain.  I wanted to just enjoy being home!  

Since I arrived home, I have been working very hard to get stronger.  Some days or times are easier, and some are more difficult.  I tripped on my shorts while I was feeling a little stressed, landed on my knees, and felt what true pain felt like.  That has been the major setback that I have had, but that is just part of the healing process it seems.  The one thing that has truly kept me sane is the ability to take short and shallow baths.  Although I know I am supposed to be using a shower bench, I look forward all day to those times I can feel clean and to soften the pain for a while.  I am extremely careful, and I always have my wife on standby to help me out.

The nights really are long, the pain is constant, and I am learning how to live all over again, but do you want to know something?  All of this… all of this pain, all of the limitations, all of the struggles and challenges…. I wouldn’t trade any of what I’m going through for just five minutes of my “old” pain that I had before the surgery.  I know that I have a very long road ahead, and I know that my back will never have the flexibility that it had (from T10-L3), but the “old” pain was a thief… the old pain stole my life, it stole my dignity, it stole my confidence, and it stole my sanity.  I broke down on so many times because I thought I couldn’t handle it anymore.  I broke down because other doctors told me to do yoga and everything would be okay.  But enough of that… Now is the “new” pain that makes me think that I am going to be okay.  Now is the “new” pain that shows me that there Is light at the end of the tunnel.  

This is only week one, so I will be through so many twists and turns before the end of this, but there will be an end; I haven’t felt like there would ever be an end for a long while now.  Too long.  I will keep updating my progress because I want to help others.  I met an amazing woman from Australia on this forum that was diagnosed with a spinal tumor (that really hit home); she and I actually spoke on the phone about the surgery, and it was so amazing just to relate to someone.  I hope that I am able to at least inform those of you facing similar surgeries in the future.  I will not yet make a “recommendation” about spinal fusions, but I have a lot to say in the near future.  The one thing that I can’t help but reflect on is that many of the doctors/ medical “experts” that are so outspoken against fusions have never had back pain that you would be willing to sell your soul to cure.

Thank you for taking the time to read about my surgery; it felt great to get that out of my system!

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