Wil has been scheduled for more brain surgery, which will be on February 24. This will be his third brain surgery in less than 11 months. It’s amazing that he has come through 2 brain surgeries and is so normal. Well, as normal as he ever was! Brain surgery sounds so serious, complicated, and scary. Of course, that’s because it is. But, round 3 is less scary than round one.
For the people who don’t know, here is Wil’s story, as succinctly as possible:
About 3 years ago now, Wil began to have pain in his jaw. He thought it was a dental problem. The dentist found the tiniest crack in a molar. This molar had previously had a root canal, so the dentist decided it needed to go. He pulled the tooth and told Wil that, after it healed, they would discuss options for replacing the tooth.
Unfortunately, the pain persisted. The dentist gave him a clean bill of dental health, so Wil sought answers with his doctor. Around the same time, he noticed that parts of his face were numb. The pain was getting worse, spreading from his jaw to other parts of the left side of his face. Wil was finally diagnosed with trigeminal neuralgia.
Trigeminal neuralgia is a fairly rare condition caused by something irritating the fifth cranial nerve, also known as the trigeminal nerve, because it splits into 3 branches that go to the forehead, cheek, and jaw. The pain caused by trigeminal neuralgia hits at random, unpredictable times and is severe. In fact, before there were treatments for it, trigeminal neuralgia was known as the “suicide disease,” because many people found the extreme pain unbearable and took their own lives rather than suffer that level of pain.
Wil was prescribed some meds for nerve pain, which was actually just a higher dose of meds he already took for nerve damage to his arm (from his time in the Air Force). He was referred to a pain management doctor and told to “grin and bear it.” It was difficult to watch the bouts of pain that came and went. It got to the point that Wil could not stand for anything to touch his lower lip or the left side of his face, and he had to be careful what he tried to chew.
Over the course of two years, the pain progressed and became even more severe. That finally made Wil a candidate for surgery. Usually what causes trigeminal neuralgia is an artery pulsing too close to the fifth cranial nerve. The surgery to separate the nerve from the artery and put a cushion in between is done through a 1-inch or so hole through the skull behind the ear.
The neurosurgeon prescribed some different meds while Wil underwent tests to determine exactly where and how the artery and the nerve were interacting. However, the last CT scan revealed a surprise. Just 2 weeks before his scheduled surgery, it was discovered that Wil had no artery irritating his fifth cranial nerve, but rather a rare type of cyst growing around his fifth cranial nerve and crushing it.
The doctor was surprised and postponed the surgery until he could have a longer time in the operating room. The surgery became much more complicated. While this long-practicing neurosurgeon (over 20 years in practice) did 4 or 5 regular surgeries for trigeminal neuralgia every year, this would be only the 4th epidermoid cyst removal of his career.
Epidermoid cysts are rare and interesting. They form in utero when cells that were supposed to be skin get trapped inside other places, like the brain. It takes decades for them to grow large enough to cause problems. They are not easy cysts to find because they are clear and filled with clear fluid. The fluid is caustic to the brain, so surgery to remove them must be delicate so as not to allow any of the cyst’s fluid to leak into the brain and cause chemical meningitis.
The surgery was rescheduled for a longer window on April 1, 2019. It required a crainiotomy, the opening of the skull. Over the course of 4-5 hours, the doctor cut a u-shaped incision from the front of Wil’s ear way up and over to the rear of his ear, about 8-9 inches. As this flap of skull was held back, the doctor carefully peeled the cyst off the fifth cranial nerve and found that it had also adhered to the third cranial nerve. It was also very close to the seventh cranial nerve. Those details were very important to Wil’s recovery. The doctor was able to remove it all.
Though the surgery was a resounding success, Wil’s recovery was hampered by his third cranial nerve having the cyst peeled away. The third cranial nerve controls how your eyes and brain perceive and justify your position in space and your motion to the motion of things around you. When we left the hospital after 4 days, Wil had to use a walker to maintain balance. Trying to move while others moved around him made him weak and dizzy. Over the course of the next two weeks, he slowly got better. Most importantly, the pain from the trigeminal neuralgia was completely and instantly gone after surgery.
Two weeks post surgery, we had a setback when Wil developed Bell’s Palsy. The entire left side of his face drooped. He could not smile on that side or raise his eyebrow. A call to the doc sent us to the ER. Because Wil was only 2 weeks post-surgery, the ER doc was reluctant to diagnose Bell’s Palsy and send us home. Plus, a CT scan revealed spaces in Wil’s mastoid bone that should not have been there and could be a sign of infection. We ended up spending 8 more days in the hospital over Easter, while Wil received massive doses of antibiotics and steroids. The Bell’s Palsy was probably because the surgery had irritated the seventh cranial nerve that controls facial muscles.
But, he improved and exactly six weeks after surgery, Wil returned to work and seemed as good as new. That wonderful time lasted about a month. Then Wil began to leak cerebrospinal fluid (CSF). Eventually, it was discovered that CSF was leaking though the spaces in his mastoid bone, into his inner ear, and making its way down to his nose. Every time he leaned forward or did anything to cause pressure (physical extertion, sneezing, coughing), CSF dripped from his nose—embarrassing and concerning!
A second craniotomy was scheduled for July 31, 2019. The neurosurgeon reopened his skull in exactly the same place and discovered two things. First, the bone wax used to seal off the spaces in his mastoid bone had not adhered and had become “chunky.” Second, there was a lot more fluid in Wil’s brain than there should have been. The doc sealed up the mastoid spaces with Duragen (a synthetic collagen) and some of Wil’s own fat taken from his abdomen. He also installed a lumbar drain to monitor CSF levels.
Over the next three days in ICU (because of the lumbar drain) Wil did great and there was no excess fluid. On the fourth day, the lumbar drain began to fill quickly with fluid. I learned that the ventricles in the brain that filter and drain CSF can stop working well after any brain surgery. The human body produces about a pint of new CSF fluid every day! So, the ventricles must filter and drain that much or one can develop hydrocephalus. However, despite the fluid, the doc decided to remove the drain, send Wil home, and hope the issue resolved (as it sometimes does).
This time, Wil was good for 4 months. The recovery was much easier, since no cranial nerves were touched. Wil was back to work as good as new only 2 weeks after surgery. Life was good right up through Thanksgiving. However, in early December, while lifting heavy boxes after Christmas decorating, Wil began to leak CSF. He also developed a massive headache. Though the headache went away, the leak did not. January 2020 tests revealed that excess CSF had blown out the Duragen and fat patches in the mastoid bone.
So, a third surgery has been scheduled for February 24, 2020. Yes, a third crainiotomy in less than 11 months. The plan is to reopen the skull, repatch the mastoid bone, and install a shunt with a pressure valve to permanently solve the excess CSF problem. The shunt is entirely internal and unseen. The valve opens anytime CSF pressure reaches a certain level. The fluid is drained down a tube that goes all the way to the abdominal cavity were the body reabsorbs it.
I am so hopeful that this surgery will be the last! Recovery should be easy again, because no cranial nerves will be disturbed. I am planning to take off one week of school. Wil should only be in the hospital 2-3 days this time. Then I will have a few days home with him to monitor his recovery. He should be back to work in 2 weeks. It won't be long before things are back to normal...fingers crossed!
