Experiencing a Central Spinal Fluid Leak (CSF) - Reeve Foundation

By guest blogger Zack Collie

Ten years ago, I broke my neck, diving into a wave at the beach, hitting a sandbar headfirst. I was diagnosed as a C-4 incomplete quadriplegic. Ever since my accident happened, I remember dealing with spasms. A spasm is the uncontrolled movement of muscles in the body while they are firing. Spasms are very similar to cramps but without the pain. My legs will start shaking and kick out off my footplate and spasm uncontrollably, causing everything in my lap to fall on the ground. At night, my spams are so intense that I have to use motorcycle tie-downs to hold them down from kicking up at night. These spasms have been a big part of my life for the past ten years.

On the one hand, even though I can't control them, they have kept a lot of the muscles in my body from atrophying. Although I can't control them, they are still causing my muscles to fire and work. However, they are also very annoying and frustrating at times. I am on the highest dose of oral baclofen and have been using this drug to help with my spasms since my accident happened. Over the years, I have noticed my body develops a tolerance, and baclofen no longer helps with my spams like it used to. I have tried new muscle relaxing medications, and nothing works. My last option is to look into a baclofen pump. A baclofen pump is a device the size of a hockey puck that is put underneath the stomach's skin and has a catheter that connects to the spinal sack. Every hour a small amount of liquid baclofen is released and administered directly to the spinal sack and is much more effective than oral baclofen. Before a person can get the surgery for a pump, they have to do a trial and see how their body reacts to the medication. The trial is an epidural filled with liquid baclofen and injected into the spinal sack. Earlier this month, I went in to get the trial done on myself. I was rolled into the operating room, transferred onto an operating table face down, my lower back was numbed, and I experienced my first epidural.

Everything went great, the procedure was quick and easy, and my body responded positively to the medication. When I was released and sent home, I started getting these really bad headaches. I figured it was because of the epidural and medication, so I tried to push through the pain. The next morning when I got up, the headaches came back so bad I started throwing up. I couldn't sit up without having the worst headache of my life and feeling nauseous. I tried drinking water to stay hydrated, and within minutes it came back up. By the end of the day, I had thrown up almost a dozen times and had no water or food in me, and still had a pounding headache. My body was dehydrated, and I ended up having to go to the ER two times.

The first time they gave me an IV and sent me home with pain meds, which didn't help. The second time they concluded that I had a spinal fluid leak. A spinal fluid leak is very common from epidurals. When the epidural punctures the spinal sack, it can cause a leak. Spinal fluid from the sack leaks out into the body. The fluid normally surrounds the brain and proves cushion, but when the leak occurs, the fluid runs out, causing the brain to have no cushion and sag down. The pressure from the brain sagging is what causes horrible headaches. In order to fix this problem, there is a procedure called a blood patch. A blood patch is when the doctor injects blood from the patient through an epidural into the spinal sack. As the blood clots, it forms a patch that seals the hole and stops the leak. I had never experienced a central spinal fluid leak before, and it was not a pleasant experience. Although I had a bad side effect from the epidural, the medication still worked, and the next step is to talk to the surgeon and schedule a surgery date. I still want to move forward with the pump and see if it helps with my spams. After I get the pump, I plan to write about my experience and if it has helped me or not.

Zack Collie is living with quadriplegia and was paralyzed in 2010 diving under a wave at Newport Beach breaking his C-4 vertebrae. Zack started a YouTube channel to spread awareness about spinal cord injuries and his life living as one. His mother, Amber Collie, is also a regular blogger for the Reeve Foundation.