Jennifer Smith, Austin's Mother, Knew That His Pain was not "all in his head" or "a migraine". Her determination got Austin the help he needed to remove a cyst from his brain.
Steering her car into the neighborhood, Jennifer Smith smiled with maternal glee at the unexpected display of “Welcome Home, Austin” signs adorning her front lawn. Peering over at her teen son in the passenger seat, her mind recounted their trip to California, the risk they took to pursue Austin’s controversial brain surgery, and now, the two of them arriving home safe and sound, tumor-free and alive to tell the miraculous tale. Her friends, his friends, and the people of their small town would all want to hear the story but it would have to wait until the morning. For tonight, she was still soaking in the reality that they made it. They were home. Both of them. They made it and now the healing could begin.
Several years earlier, in March 2007, Jennifer took Austin for a second trip to the doctor for a sinus infection that refused to clear up. The pediatrician ordered a precautionary CT scan upon hearing about his headaches and nausea, just to make sure that she was dealing with blocked sinuses and nothing else.
“Yes, he has a sinus infection. He also has an arachnoid cyst and he will need to have it removed.” The doctor’s voice was grave.
Floored at the words, Jennifer took the referral for the pediatric neurosurgeon. As a baby, Austin was diagnosed with excessive cranial growth rate and a head larger than most kids, but no tests showed a cyst. It might have been growing slowly this whole time.
Jennifer and Austin went home. They talked about it, cried and he asked, “Am I going to die?” Quick to answer “No, absolutely not. It will be fine,” Jennifer’s mind was already racing to the next step.
“Do not look on the Internet. It will scare you. Do not do it,” advised Jennifer’s sister, who did a little preliminary research herself.
Steering clear of online sources, Jennifer took Austin and his current MRIs to the neurosurgeon for answers. The man, believed to be one of the best in the state, told them that basically Austin had a migraine and needed to be treated for it and nothing else.
Uncomfortable with his answers, Jennifer then began to do her own research. Finding multiple related symptoms, Jennifer finally understood the unusual growing pains in Austin’s joints and muscles along with the persistent nausea and increasing headaches. The cyst was pressing on vital nerves and affecting Austin’s whole body system.
“Originally scheduled the day before his 13th birthday, Austin’s ‘birthday present’ of getting the cyst out would have to wait.”
Doctors continued to tell Jennifer that Austin suffered from migraines and that every migraine was different but Jennifer already knew that a cyst was inside Austin’s head and that it was growing. Migraine sufferers she knew weren’t going through the extremes swings she was dealing with in her son. Something was seriously wrong. Why were they telling her different?
Jennifer began calling anyone she could find online, anyone who had treated an arachnoid cyst. One common option included popping the cyst and draining it but it could regrow. Another option included a shunt that would constantly drain it. Then she came to the option to have a resection which was a complete and total removal of the cyst.
“In my mind, out of those three, the resection is what I am going for because you get one chance. You go in there, you get it done and you are done. You aren’t going in there every two years or four years or ten years. It’s my son, he’s my responsibility. I wanted him taken care of to the best of anyone’s ability because that’s what I do. That’s what I expect others to do,” shares Jennifer.
Finding no one able to do a resection in the state, Jennifer broadened her search. Finally, Dr. Hrayr Shahinian called back from the Skull Base Institute in Los Angeles. He knew how to do it.
“We talked and he talked to Austin. It was like he was in our home,” says Jennifer who shares that Austin wasn’t one to talk about his pain. Some people at school knew he was suffering since he missed days, but otherwise, he tried to hide it. Nausea and pain prevented him from being able to read. He missed thirty-five days of fifth grade while doctors prescribed different migraine medicines.
As Austin’s symptoms worsened with facial twitching, nausea, deafness, imbalance and other symptoms, Jennifer continued the agony of taking him to neurologists and a neurosurgeon in their home state of Illinois where none of the doctors she saw had done a resection or saw its value in Austin’s case. As a mom, she knew it was the only thing she could do to help her son. Doubting the California doctor’s expertise, the local neurosurgeon would not give her the letter calling for surgery to go out of state, a required step by the California institute and her insurance. Her frustrations as a parent to a very sick child mounted exponentially. An answer was at their fingertips.
Finally, a break-through came when Jennifer asked if their pediatrician could recommend the surgery, based on seeing the growth on the MRIs. To Jennifer’s overwhelming relief, the doctor agreed wholeheartedly. By now, Austin was twelve.
Securing the vital letter of recommendation, Jennifer and Austin hit another roadblock. Dr. Shahinian was moving locations and his current one wasn’t certified for surgeries on anyone under age 14.
Originally scheduled the day before his 13th birthday, Austin’s “birthday present” of getting the cyst out would have to wait. Worried, Jennifer had read that over twelve, certain disabilities created lasting effects into adulthood. She knew this needed to be done for him soon, both for short term relief and to prevent long-term damage. In her own research, she learned that arachnoid cysts are predominantly in males, that 4% of the population has them, 1% need treated and that they do grow in spurts. Austin’s cyst was lying against key nerves and could grow larger at any moment.
Once again, so close, Jennifer looked for alternatives and answers. She knew she had the right doctor, the person who could help her son. Various confirmations and personal testimony cropped up in the most unlikely places along the way but now they needed a way to see him.
Working through the details took time, which turned out to be just enough time for Austin to turn 14 and meet the requirement for surgery to be done. Entering Austin’s brain through a one-centimeter craniotomy, Dr. Shahinian stripped away the cyst and with it many of the complications hampering Austin’s ability to function normally.
As Austin recovered from surgery at the hospital, Jennifer was finally able to sleep with the peace of knowing that her fight had been worth every frustrating, fist-beating moment. It was over and mother and son could start fresh on a new journey of wellness and praise to God for answered prayers.
BIO: Jennifer Smith and her son, Austin Tweedie, live in Illinois where Austin is recovering at an amazing pace. They are still working through several minor healing processes but the absence of the cyst has proved itself a valid necessity to Austin’s life. Jennifer continues to be grateful for the support of her community and church in this ongoing ordeal. A film crew from The Doctors captured the whole process on film which will be aired in Fall 2009.
Thank you Jennifer, for sharing your (& Austin's) Story with us.
Our Stories and pictures are the sole copyright of their Authors and may not be reprinted or used without their permission.© 2009 by Sarah Peppel and Story of My Life®