Heather H., Dallas, TX
In 2008 our daughter Christa suffered from a series of migraines and eventually a seizure. Her pediatrician ordered an MRI and a large pineal cyst was discovered. The doctors dismissed the cyst and attributed the seizure and headaches to a virus. For the next two years, Christa suffered from headaches, dizziness, mood disorders and on-going vision problems. Finally, in August of 2010, the issues escalated to a point we could no longer ignore. Christa suddenly lost almost all of the vision in her left eye and her vision was quickly degrading in her right eye. In October of 2010, she was hospitalized for several weeks in severe pain and blinded by a mysterious condition that could not be diagnosed. The doctors attributed her condition to everything from a reaction to a vaccination to MS to aluminum poisoning. Her symptoms continued to worsen and in December of 2010 she was again hospitalized but this time for severe paresthesia, peuripheral neuritis, continued vision problems and severe head and spinal pain. She was seen by teams of Neurologists, Neurosurgeons, Rheumatologists, Dermatologists, Psychiatrists, Infectious Disease Specialists and Pain Management Doctors. No one could diagnose her condition yet they continued to monitor her cyst.
Through our own online search we found and contacted Dr. Shahinian’s office. We immediately explained that she had been diagnosed with a large Pineal Lesion and was experiencing a variety of mysterious and supposedly disconnected symptoms. We overnighted the records to Dr. Shahinian’s office and he skyped with us the very next day. We were so relieved to find a doctor that was familiar with these types of lesions and open to the possibility that it could be causing all if not most of Christa’s issues. He was very concerned with Christa’s lesion and suggested to get her symptoms under control and do a follow up MRI to watch the progress of the lesion.
Over the course of the next few months, Christa’s symptoms progressed. She was unable to hold a pen, be touched on her right side, see clearly with her left eye. She suffered severe clumsiness and disorientation, dizziness, mood issues, headaches, a lack of appetite and the inability to control her body temperature.
When we did the follow up MRI in May of 2011, I dropped the DVD into an envelope, overnighted it to Dr. Shahnian’s office without a note or message of any sort. The next day, my phone rang several times from his office and I received a message to call the doctor must speak to me immediately. Dr. Shahinian had reviewed Christa’s MRI and was concerned. We spoke and he was clear that the time had come for Christa’s now Tumor, no longer a cyst or lesion to be removed. He definitively believed it was causing her neurological issues and had the procedure to remove the tumor.
As parents faced with the decision to have a relatively new and experimental brain surgery performed on our daughter, we sought the counsel of our pediatrican. He recommended that we speak with a well known Oncologist in Dallas. The Oncologist was clear. “if that was my daughter, I would have the tumor out next week.” We were terrified. We wanted opinions from “the experts.”
We literally traveled the country and got second opinions from the major medical hospitals and pediatric neuroseurgeons in the nation. We pulled in favors from friends and family to get appointments as with anyone and everyone we could find. Every opinion we got was the same. If you operate on this region of the brain, you are crazy. You will make your daughter worse. Just wait.
Our response was this… wait for what? She was going to sleep and not waking up. We were in the emergency room once a week, at doctor’s offices every other day. She was slipping away before our eyes. Wasting away with no appetite or thirst, unable to hold a pencil. Nothing. We took the plunge and went to LA to meet with Dr. Shahinian to confirm what we already believed. We had to try something to help this child get her life back!
Dr. S. spoke to Christa and answered her questions with great respect. He believed her about her symptoms and explained what was going on in her body. He made no promises about the short term results but committed that long term she would feel so much better than she did with the tumor. He told us that he would let his daughter have the surgery and we believed him.
We arrived at Thousand Oaks a few weeks later. We were not nervous. We had no choice but to move forward with this procedure. The team and staff were amazing. Every move was meticulous and perfect. These people understand that they are saving lives and changing lives with everything they do. They were especially sensitive to Christa’s concerns as a young teen girl becoming in an overwhelmingly adult environment. They were sensitive to the needs of our family, joked when we needed a laugh. Hugged when we needed support. Brought a sandwich when we needed food. But most of all took the issue at hand as serious as it was. Hey, this IS brain surgery.
Christa went in for surgery in the middle of the day. The doctor’s team called us every 45 minutes with updates like: She’s prepped, He’s in, He can see the tumor, it’s out, He’s closing.
The news after the surgery was mixed. Poor Christa had been suffering terribly. Her tumor was much larger and more invasive than anyone had realized. Parts of her brain had to be removed that we did not expect, her entire pineal gland was devastated and had to be removed. We had no idea what to expect.
To our great joy, Christa woke up and felt wonderful. Within hours of the surgery, the vast majority of her symptoms were gone! She could see the clock, and even the second hand moving. The next morning she was eating breakfast and slowly walking down the hall. Two days later she was doing the “electric slide” with her physical therapist in the hallway and on day three we were out of the hospital. On the flight home, she was writing thank you notes. She has never taken anything stronger than a Tylenol since the surgery. Prior to surgery she had been in so much pain she was on morphine, methadone, and a variety of nerve medications, anti-anxiety medication and many others. Today, she only takes Melatonin to accommodate for her missing Pineal Gland. Two weeks after the surgery, she started eighth grade with all of her classmates. She told her friends that she had a ‘little surgery in LA to fix her eyes.’ Five weeks after the surgery, she sailed in a regatta and cheered at a football game. She dreams of becoming a Marine Biologist and sailing in America’s Cup.
Thanks to Dr. Shahinian and his truly innovative procedure, our daughter has gained her life back. She laughs again, is able to be active again, go out in the sun and enjoy the world. Thank you Skull Base Institute because in the words of Christa “that brain tumor is just so yesterday.”
Heather H.
Dallas, TX
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