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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
Background (This was my first introduction):
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 specialists wants to come in and assist as my case is unique (see? I’m Not crazy).
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.)