Lisa T., Woodstock, IL
Our daughter Amanda was suffering from terrible headaches, extreme fatigue, daytime sleepiness, nausea, facial swelling, weight gain and slowed growth during her middle school years. She was 10 years old when all of these symptoms started. Her headaches were so debilitating requiring her to lie in the back seat of our car anytime we were driving. Our once happy, energetic daughter was now spending most afternoons sleeping instead of playing with her friends or doing the normal things that children do when they are in middle school.
Amanda’s headaches, fatigue and daytime sleepiness became so concerning that I decided to take her to a Pediatric Endocrinologist. She diagnosed Amanda with Constitutional Growth Delay and monitored her symptoms. She became increasingly concerned with Amanda’s headaches and ordered a brain MRI. The results indicated that Amanda had a partially cystic, solid mass in the pineal region and a pituitary microadenoma. The Endocrinologist referred us to another Pediatric Endocrinologist at the University of Chicago. He had the MRI results reviewed by their radiologists and we received a letter indicating that there was a strong possibility that Amanda had a malignant tumor in the pineal region. He referred us to a team of neurosurgeons who agreed that there was a partially cystic solid mass in the pineal region and confirmed the pituitary tumor as well. There were too many risks to perform surgery in this area of the brain and their final recommendation was to monitor the lesions by performing MRI’s every three months. In addition, they referred us to a Pediatric Neuro-Oncologist for a spinal tap to rule out malignant cells in her spinal fluid. The spinal tap did not reveal malignant cells; however her opening pressure was elevated resulting in a referral to a Pediatric Neurologist.
The Pediatric Neurologist reviewed Amanda’s case and diagnosed her with Idiopathic Intracranial Hypertension and performed a series of spinal taps to remove the excess fluid. After the spinal taps, Amanda’s energy would increase, headaches would decrease and her spirits lifted. Gradually her symptoms would return resulting in additional spinal taps, prescriptions for Diamox which did not control her symptoms, and finally a prescription for Lasix. Amanda was on long-term Lasix and continued to be monitored for the Constitutional growth delay and delayed puberty She was dismissed from seeing the Pediatric Endocrinologist at the age of 16. Her growth returned to a normal rate and puberty began to progress at 15-16 years of age.
She continued to see the Neurologist and her symptoms of headaches, facial swelling, and daytime sleepiness all continued and now in high school we began to notice weight gain and severe acne. Amanda spent most of her high school years sleeping in the afternoon and the things that she once loved to be a part of no longer interested her to due to how poorly she felt. She played the flute, volleyball and was an active teenager and we gradually noticed that she did not have the stamina to do any of these things. She only had enough energy to go to school and work and if she was home we would find her in bed sleeping.
Despite how poorly she felt, Amanda graduated from high school with a GPA of 3.5 and then attended a community college. Her symptoms of daytime sleepiness worsened during her college years and the weight gain, facial swelling and acne continued. Her current neurologist had no answers so we decided to seek the opinion of a sleep medicine doctor during her fourth year in college. This doctor at Northwestern was the first doctor to agree that Amanda’s symptoms were most likely the result of the pineal cyst/lesion and ordered a series of tests. She ordered a sleep study, melatonin levels and also referred us to a Neuro-oncologist at Northwestern for evaluation of the lesion. The melatonin levels were significantly increased during the day which indicated that the pineal gland was not functioning properly. The sleep medicine doctor prescribed Nuvigil to control the daytime sleepiness which significantly increased her acne resulting in a change of prescription. She then prescribed Adderall for Amanda to stay awake during the day. The Neuro-Oncologist did not believe that the pineal lesion was causing her symptoms and basically stated that he did not have enough evidence to consider removal of the lesion and that if he removed her lesion she would most likely suffer a stroke.
We did not accept this quality of life for our daughter as she was spending most of the day in bed sleeping and then would go to bed at 10:00 p.m. and sleep all night. She looked sick every day and we disagreed with the opinion of the Neuro-oncologist at Northwestern. We also now had data which proved that her melatonin levels were abnormal during the day. I had found the Skull Base Institute through an internet search about two years prior to her evaluation at Northwestern and after the appointment with the Neuro-oncologist, who again gave us no hope and no answers, decided it was time to call Dr. Shahinian.
I sent copies of all of Amanda’s medical records and every brain MRI she had since 8th grade. Dr. Shahinian reviewed all of her records and contacted us through Web Cam. At this point Amanda was pretty sure that she would never pursue surgical intervention because she was convinced that she would have a stroke after hearing the comments from the Neuro-oncologist at Northwestern. Our family met with Dr. Shahinian and he stated that he believed that all of Amanda’s symptoms were a result of this pineal lesion and ordered a brain MRI. He reviewed the brain MRI and contacted us immediately to recommend surgery at Thousand Oaks surgical center in October of 2011. Amanda was so confident about this recommendation and Dr. Shahinian made her feel so comfortable after one visit that she decided this was in her best interest to move forward.
We arrived in Los Angeles on Sunday, October 9th and had an office consultation with Dr. Shahinian on October 10th at this LA office. He was so reassuring and fully explained the surgical procedure and reviewed her brain MRI films with us in his office. Amanda finally felt as if someone could help her feel better and move forward with a better quality of life. We left his office and traveled to Thousand Oaks for pre-surgical testing. From the moment one walks in to this facility you are welcomed, treated with respect, caring and compassion. Amanda was ready and confident that this was the right decision for her health and her future and we felt the same way. We were able to spend the next day hiking at a beautiful state park in Thousand Oaks and then found the most beautiful place for lunch right on the beach in Malibu.
Amanda had surgery on October 12th, 2011 to remove the pineal cystic/solid mass. The nursing staff kept us updated throughout the entire procedure by calling us and then Dr. Shahinian came out of the OR to inform us that the surgery was a success. He explained that there was an engorged vein, tumor and cyst that were all pushing into the third ventricle of her brain. Amanda went into recovery without complications and then was transferred to her room. The nursing staff stayed in our room for the first 24 hours which was very re-assuring to all of us. Amanda did very well and was up and participating in physical therapy 24 hours after her surgery. She was discharged on Friday, October 14th and we traveled back to our hotel in Thousand Oaks where she spent the weekend recovering. The first thing we noticed was that despite the fact that she had just undergone brain surgery, she was not sleeping during the day. She felt so much better after the surgery. Dr. Shahinian evaluated her at his office in LA on October 17th and cleared her to fly home.
Amanda is now a healthy 24 year old young woman who is finally living a normal life. She graduated from College in May of 2012 with her degree in Special Education. She never sleeps during the day, has lost 40 pounds, her acne has cleared up, nausea is no longer an issue and the best part is that she is on no long-term medication. Prior to the surgery she had a pill box full of various medications to control her symptoms which were simply a band-aid to the true source of the problem which was the pineal cyst/lesion all along. We are so grateful to Dr. Shahinian, his office staff and the nurses, doctors, and staff members of Thousand Oaks Surgical Center for giving our daughter her life back.
Lisa T., Mother of patient: Amanda
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