Another day of school missed, and I start to get angry at this unseen being called Migraine who preys upon my daughter. After years of attempting different methods to combat Migraine, I feel as though I’m failing miserably. The school of thought among many neurologists is to treat each person the same. I’m aware of this school of thought. I know this textbook of trial and error where all persons from a group are lumped into a combined pain society where all are treated the same.
I understand chronic pain. I know about having to follow a list of methods to combat issues. She has a rare kind of migraine, and she tries each method, always hoping that ONE will work. Yet, just when she thinks it might, it all tumbles down with nothing but a foggy memory, lack of recall, and another losing battle.
In this day and age, researching alternatives seems so easy, yet, there I was, one more day, as a mother watching her daughter suffer, I have tears stream down my face in a combination of frustration, defeat, and feeling like there must be SOMETHING I can do. I want the medications gone. They do no good. I want her to know what it can be like to live the life of a normal teenager, but she’s had these migraines for so long, since childhood, that she doesn’t know what it’s like to live without the pain.
I also don’t know how this brilliant girl will make it through college. How can a person have 20 migraines a month and attend college? Suggestions of online college are thrown at me. A girl with a genius IQ who deserves to have opportunities like others….a girl who could be the person who finds a cure, she won’t get the chance because her body is working against her.
I am told by some that their children grew out of it. My daughter, however, seems to be getting worse. Every day is either getting a migraine or trying to recover from exhaustion from the migraine. Episodes have ranged from 72 hours to THREE WEEKS. This can’t continue. It has to stop.
I start picturing Migraine as a being. I will win this war with Migraine. Migraine may cause a breakdown, but losing is not an option. I think back to the days where doctors thought blood letting was a cure. They were so positive of this, yet, it didn’t help the patient. Imagine being ill and losing blood at the same time and becoming weaker from it. Perhaps, we don’t have it all together in modern society. Perhaps, there are other ways.
My frustration was getting the better of me. I start to search online. I start with trying to find a migraine center near me. Maybe there is one with different methods. She needs someone who KNOWS migraines and not just a pediatric neurologist who is going by the book. She is chronic. Appointments every three months with no success for years has done nothing.
For some reason, I go back to Google once again. I type in, “migraine surgery” expecting nothing to return. I start reading about a procedure being performed. I find videos on youtube of young girls talking about how they knew they couldn’t go to college due to Migraine. Their parents went through what I went through. Migraine is evil. Chronic Migraine must be stopped. Migraine takes the joy out of life, and I think how many parents have no idea how good they have it. They’re just worried about how their child performs on a test. They don’t have the school nurse’s phone number memorized and feel their heart rate jump when the school nurse calls. They haven’t had to follow an ambulance when their child loses the ability to walk and speak and see a tear roll down her face when she can’t communicate after being put on a gurney. They aren’t on call every moment their child is in school. They don’t see signs that they know they’ll be hauling off to the school to pick up their child in a wheelchair.
I worry that my child will have a migraine on AP exam day. Oh, but that already happened. She went into an AP exam with a severe migraine because there are no make up days. AP doesn’t care about a disabling condition. The test must be taken on AP exam day. Having a physical fault is NO EXCEPTION. If there IS an exception, our school doesn’t seem to know about it as I’ve asked several times, “What if she has a migraine?” Why should anyone with a disabling condition be given a chance despite a 504? You either have the physical fortitude to take that test or you don’t take it. End of story. Who cares how intelligent you are or what you could accomplish if you are 100%? The test MUST be taken on THAT day.
Despite all of this, I see her in Honors and AP classes, and I think to myself how she would fly without an issue. Already, she is capable of teaching herself at home and maintaining despite it all. The world would be hers without Migraine. She could be the next person to become the neurologist with the answers…if only….if only…Migraine wasn’t so set on plaguing her. Migraine is a really bad, toxic relationship. Migraine doesn’t just need divorce papers. Migraine needs to be exiled.
Then, I see a surgeon on a show excerpt of The Doctors discussing migraine surgery. Really? A surgery for migraines? He’s discussing the surgery. I’m going back and forth to catch the name of the doctor. I look him up. He’s in New York City. I’m an hour and a half from Manhattan. I’ve already called the migraine centers and discovered my daughter is too young for their programs. Despite the fact that she’s fully grown, almost 17, and is plagued, she is too young. Guess what? Migraine didn’t think she was too young when it struck at the age of six and pushed onward until she was sixteen….TEN YEARS, MIGRAINE DIDN’T CARE.
I read more and more about the surgery called nerve decompression. What strikes me is the nerves they are discussing. My own daughter had come to realize she could push onto certain nerves to stop the migraine. When she would release her finger from the point, the migraine continued. She actually had this pinpoint on her head as she was constantly trying to evaluate her own migraines. Something struck me about the nerve decompression and my own daughter. I’m not one for advocating surgery, that’s for sure. With my own life, I had a surgeon screw up royally that changed my life. That is not something I want to risk for my daughter, but the nerve decompression made so much sense to me. What if…what if….what if….
I go back to look up this doctor from the TV show who is part of a migraine center in New York City after I get several NO’S as responses to my inquiries regarding my daughter being treated at migraine centers near me. All the NO’S are based on her age. I call the office, “Before I begin, this is for my daughter. She is sixteen and will be seventeen in January. Will you take her?”
“What’s wrong with her?” the receptionist asks.
“She’s had migraines since she was six years old. They have accelerated to a point where she can’t live like a normal person. I can’t even see her being able to attend college, and she has a genius level IQ. This is killing me, but, worse, she’s in pain.”
“We’ll take her!”
“We’ll take her!” I’m given an appointment within two weeks. I’m stunned. She is not seeing the doctor that I saw on the TV show, she is being seen by a neurosurgeon who works with him.
I look up this neurosurgeon for reviews. She is called an angel. Could she be our angel? Oh, how we need an angel.
The day of the appointment arrives. We trek into New York City. My daughter and I forge ahead while her father finds parking.
She’s called into the room after we fill out paperwork. The angel arrives, dressed in her white attire, minus the wings. She is Russian, but what one would expect with stereotypes might be a woman who may be harsh. Instead, she is the exact opposite. My child spoke, and she listened with the same respect as speaking to a peer, but, with the love of a mama bear. She was, by all standards, a mother, and I could see the Russian men who were waiting for her in the waiting room saw her that way as well. They looked at her with the eyes of adoring sons, and not with the annoyance one may see from a waiting room. It was unusual to me to see the respect and know that they knew she was worth the wait. Whether it was cultural or not was a passing thought as I witnessed her in action and understood why they looked at her this way.
She starts writing while my daughter speaks. She asks me about medications, and I hand her the bottles, “Good! This is the best way to actually SEE what the prescription is!” I hand her the paperwork from her neurologist. I present a disk with her MRI of the brain with contrast. She grabs it with excitement. This is her thing – she likes the battle with Migraine. She has Migraine figured out. My daughter tells her one more thing after being questioned, and she drops the paperwork and suddenly looks up. She stands and walks around her desk. She puts her hand on my daughter’s head, “Does it hurt here?”
“How about…HERE?” my daughter’s eyes pop open as though there is a new revelation about points in her head.
“And…what about HERE?” my daughter squeals out in pain, “Well, I guess that’s a yes too!”
She confidently sits back down in her chair. She says, “I know what’s wrong with her.” She goes on to tell us the exact nerves and issues.
“Will she grow out of it?” I ask.
“No,” she bluntly says. I needed that bluntness and direct answers. Enough of wishy washy guesses. Enough of appointments that go nowhere.
“She’s a candidate for the surgery. In fact, I know the surgery will work. I’m positive about it, but this is what I can do right now. I can use a nerve block on her to test. If it works, I am right. Well, I know I’m right, but this will show you.”
We all agree that she should try it. There’s nothing to lose anymore with Migraine. She has no fear of Migraine. She’s beaten it before. She knows Migraine’s every move. She didn’t wait for another week or two or have us come back. Despite her full waiting room, she took her to the room and had her put on a hospital gown while she injected Lidocaine shots in the areas. It was difficult to witness, but I knew she knew what she was doing. Despite that, I had watched an episode of Lore regarding lobotomies, and I started feeling my eyes rolling to the back of my head with one of the shots. I have seen a lot of injections during my day, but never had this happen. I caught myself starting to pass out, and snapped out of it. My daughter is willing to endure the pain of this…anything to kick Migraine’s behind.
The procedure is done. She gives me her cell phone number and email address to write. Who does this? Even more so, who does this in New York City?
I tell her, “If this works, it will be a miracle.”
She says, “Oh, it’s not a miracle. It’s science.”
My husband says, “It’s science to you, and a miracle to us.”
She nods her head in understanding with a smile.
“Don’t hesitate to call. I really want to know how she’s doing. Write to me. Let me know. Come back in two weeks.”
My daughter went to school today. Her head hurts, but not from Migraine. Her head hurts from injections. She prefers that over Migraine, but she is happy today because Migraine was kicked out for the time being. Migraine was never a welcomed guest, but one that needed to be put on the curb. The battlefield has new warriors in it. Migraine has no one to fight for the stay.