Neurosurgery from the Patients Perspective

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"Neurosurgery from the Patients Perspective"
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I was 18 years old and enjoying those carefree months between high school and college when my life changed forever, and it all happened while eating a Rice Krispie Treat.

I was in the car, heading across state with my sister and some friends for a concert, when I started to eat a Rice Krispie Treat that my mom had made and packed for our trip. All of a sudden, my head snapped back, so fast that I thought I had been shot, and I had severe, sharp pains in my left cheek, eye, and mouth.

The pain continued for four days, never deviating from the left side of my face, and with such sudden and sharp bursts, that I was barely able to talk. Everyone figured that my wisdom teeth had started to come in, so when I got back home, my mom took me to an oral surgeon.

After a set of x-rays that revealed my wisdom teeth were starting to appear, he decided to pull all four of them at the same, despite telling me that they shouldn't be causing me the amount of pain that I was in. It turns out, it was because he had failed to diagnose a serious, rare, and incurable neurological disease, called Trigeminal Neuralgia.

Trigeminal Neuralgia is a disease of the fifth cranial nerve. The "tri" comes from the fact that that the nerve has three branches, controlling all sensation to the face. I was in excruciating pain for months after having my teeth pulled, and finally a MRI showed that I had a blood vessel that was wrapped around the Trigeminal nerve, and with every heartbeat was pressing against it.

Now, this is not that uncommon, and can occur without causing any problems. However, a genetic defect in my nerve caused the protective sheathing to deteriorate, and the blood vessel was compressing an open nerve; causing sudden, severe, and constant "bolts of lightning" to hit my eye, temple, cheek, gums, lips, nose, and jawline.

Trigeminal Neuralgia is often referred to as the "suicide disease" because the pain is unbearable and can be brought on by such simple and every day tasks as putting on makeup, brushing your teeth, drinking and eating, and even having a slight breeze against it.

While the disease is not fatal, it is also not curable. There are several medications and surgical options available to help alleviate the symptoms, but they all carry serious side-effects and risks, and none have been proven to be long-lasting.

After four years of moving from drug to drug due to allergies and bad reactions, I decided with the blessing of my doctor to have brain surgery. My neurosurgeon decided that the Microvascular Decompression would be the best approach, even though it was the most invasive procedure. My young age (21) meant that I had an excellent chance of coming through the surgery and having a complete recovery; as opposed to the majority of his patients who are elderly, as Trigeminal Neuralgia usually affects those over 55.

I checked into the hospital a week before Christmas, as I wanted to be able to be back at school after Winter break, and the surgery began at 6am. The procedure took seven hours, and consisted of an incision behind my left ear, having my brain lifted up, and a piece of Teflon placed in between the nerve and the offending blood vessel.

The surgery took 7 hours, and when I woke up, I was in the worst pain I could ever have imagined. It honestly felt like I had a hole drilled in my head, which is exactly what happened. The one thing I noticed instantly was that although my face was sore, for the first time in four years, I had no pain in my face.

I was in the ICU for a day, and then moved into a private room on the Neurological floor. Because the central nausea center is at the base of your brain, I was extremely ill and threw up at least 5 times an hour, which does not feel great with a hole in your head.

After three days, they took me off of the pain pump and moved me onto oral pain medication, in preparation for my trip home. They had me up and walking in the hallway, and finally took the bandage off my head. I finally saw that I had no hair on the left side of my head, and a 7-inch scar and about 50 stitches; they also had to cut through all of the muscles in my neck in order to manipulate my head during the surgery, so I had knots on my neck, where those muscles were attempting to fuse together.

After being discharged from the hospital, I was still sick and vomiting every hour. I was sent home on OxyContin for the pain, a medication to help with the nausea, muscle relaxers for my neck, and salt pills to help avoid dehydration. I had a few moments where I tried to do too much, and got extremely dizzy, but I began to feel better every day.

I had the stitches removed about 2 weeks after the surgery, and was back to school 4 weeks later. I still have a large hole in the back of my skull; the skin has grown over it but it is still a large soft spot. I have no feeling on the left side of my head, which doesn't bother me, unless I'm trying to brush my hair, and I need to look in the mirror to see if I'm even touching my head.

I was lucky- I managed to escape without any nerve damage to my face, which I was worried about. I was pain free for four years, and the pain began to come back. It turns out that the blood vessel is too smart for modern medicine and has grown over the piece of Teflon and is again rubbing against the nerve.

While the pain is not as bad as it was before the surgery, the chances are that I will likely need to have surgery again, especially as I'm only 27. The good news is that next time I may be able to have the much-less invasive procedure known as the Gamma Knife, which I will write about it that happens!

While I'm disappointed the procedure did not last as long as I would have liked, I am very grateful for the four years of pain-free life that I had and I would go through it again in a heartbeat!

More about this author: Rachel Rooks

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