I heard about the FDA approving a treatment for SMA as soon as it was announced. The easy name for it is Spinraza. It was labeled as a maintenance drug meaning I would retain my current physical strength and possibly increase just a little bit. I was/am willing to do anything I could to improve my future so I jumped on the opportunity.

The process of receiving the drug is about as hardcore as it comes. A lumbar puncture needle is used to inject it into the spinal column after removing an equivalent amount of spinal fluid. This would be done indefinitely every six months after a ramp up period of more frequent injections. Even with it almost sounding like torture I was willing. After insurance approved the incredible expense of the medicine, I went in for my first attempt.

I was led into an imaging room and held upright and forward so my spine was opened up. The doctor attempted to inject my spine a few times but only hit bone. I got one minor nerve hit but overall it was rather painless. She then used imaging to check out my spine. I have an old style spinal fusion and it apparently protects my spine so well to the point where very few gaps are accessible between vertebrae. The doctor took a look at the structure and told me that the injection was not possible as is.

I ignored the roadblock and opted for surgery to create a better gap for injection spot. I was put under and my spinal fusion scar was reopened in a section. A little bone was removed and four image guiding screws were placed. I healed well and there were no complications. When the staples were removed, I felt no pain whatsoever. All of the doctors associated with that surgery were super professional and talented.

On to round two.

I went in for another injection attempt. Live imaging was used and I was had to roll over onto my side and almost onto my stomach. Again I was poked several times and I had my first major nerve hit. Pain hotter than white hot raced down my left leg. I cried out and the doctor backed out the needle almost immediately. The next try went in. I successfully got my first dose.

I was ecstatic.

I finally felt like my future was more secure. It felt like I was in the clear and all the pain had been worth it. Trials had been passed and smooth sailing would be ahead.

Unfortunately, the feeling wouldn’t last and my prediction for the future would be wrong.

I went in for the second injection high on the victory from the previous success but also nervous from the previous pain. Things were off right off the bat. I had a different administering doctor. In fact this guy was just a technician. This guy was a lower level but my previous doctor was busy and late. I was also informed that the window they put in my back was and had been unused. They could not see it on imaging for whatever reason. They had threaded the needle through my hip socket previously and that was what they were going to try to do again.

What happened next I can’t report in detail. My brain has compartmentalized the exact experience. What I can say is I got both nerves and bone hit by the needle for over two hours. The worst type of pain streaked down my legs frequently and at random intervals. I kept praying for it to be over but was too scared to call it off. I wanted to be treated didn’t I? I told myself I’d do anything for it right? The moment I gave up felt like the moment it would go in. My desperation mixed with being overwhelmed with pain left me unable to call it off. I screamed and cried until I was no longer properly oxygenated. Tears and saliva pooled around my face. I turned purple and my mom noticed and called it off for me. I am forever grateful she did.

I was sat up and begun a different kind of cry. Grief and loss. I sobbed all the way home and that marked the beginning of my experience with medical PTSD. This post is long enough though so I will cover it some other time.

In retrospect God had placed roadblocks in front of me on purpose. It was not going to go well from the start. Funny enough though I’m glad I at least tried. Otherwise I would have been chased by “what if” scenarios the rest of my life. I am content with knowing I did my best.

As sad as this situation was, there would be future opportunities. It was the first available medicine but certainly not the last. I had to to wait but the quest wasn’t over. Just a single episode.