Hydrocephalus

Hydrocephalus patientEllery

Dr. Mazzola, Dr. Post and staff are a god send. I consulted Dr. Mazzola after I had a 20 week ultrasound which detected cerebral spinal fluid in my baby’s brain. When all doctors only talked about terminating Dr. Mazzola looked at MRI’s and gave us a better understanding of what she could do to help us. Each time I went for ultrasound and doctors again would focus on the negative, Dr. Mazzola and staff would take my calls with concerns and put me and my family at ease. Not only does Dr. Mazzola and staff have a wonderful bedside manner but they are very down to earth, explain everything in a manner you will understand and overall love, love, love their patients. On 5/5/16 at 2 days old, Dr. Mazzola performed surgery on my baby girl. My daughter has been followed up by Dr. Mazzola and staff with incredible attentiveness. We can’t say enough about this amazing lady!! We just love this amazing doctor and her entire staff. We highly recommend Dr. Mazzola.

Hydrocephalus patientDr. Mazzola, Dr. Post and staff are a god send. I consulted Dr. Mazzola after I had a 20 week ultrasound which detected cerebral spinal fluid in my baby’s brain. When all doctors only talked about terminating Dr. Mazzola looked at MRI’s and gave us a better understanding of what she could do to help us. Each time I went for ultrasound and doctors again would focus on the negative, Dr. Mazzola and staff would take my calls with concerns and put me and my family at ease. Not only does Dr. Mazzola and staff have a wonderful bedside manner but they are very down to earth, explain everything in a manner you will understand and overall love, love, love their patients. On 5/5/16 at 2 days old, Dr. Mazzola performed surgery on my baby girl. My daughter has been followed up by Dr. Mazzola and staff with incredible attentiveness. We can’t say enough about this amazing lady!! We just love this amazing doctor and her entire staff. We highly recommend Dr. Mazzola.

Storm

Hydrocephalus patientOur son Storm was born September 2005, premature at 35 weeks but, a happy healthy boy. He was in such great shape that the nursery nurses didn’t believe my husband when he told them Storm was a preemie. Also, it was not necessary for him to be in the NICU which is standard for all preemies.

He seemed to be progressing as a baby should. Then at 2 months we noticed the plagiocephaly, a flat spot on the rear right side of his head. We took him to the pediatrician and were given advice on alternating sides when changing, feeding and sleeping. We had been informed about getting him a helmet but wanted to avoid that if possible. At four months there was no improvement in the plagiocephaly and a new problem had arisen. Storm was only turning his head to the right. If he wanted to see something to his left he would turn completely around to his right to see what he was looking for. Again, we went to the pediatrician and were referred to Pediatric Orthopedic. Storm was diagnosed with torticolis, got some PT and the problem was corrected. At this time his head size was still in the acceptable range for a child his age.

At six months Storm’s head size exceeded the 98th%. He was not turning over on his own. The pediatrician was not concerned and suggested more tummy time. He did finally begin to turn over at 8 months. At 9 months I was referred to a plastic surgeon (should have been referred to a neurosurgeon) about Storm’s plagiocephaly. The doctor was very rude and nasty when I questioned him and I decided not to get the helmet for Storm.

At each ped. visit his head continued to grow. I assumed that if there was a problem or concern, the doctors would tell me, but since they did not I thought there was nothing to be worried about. I’ve know several people whose children have had flat spots or larger than average heads, and they were fine.

Everything seemed to be progressing normally, but then at about 22 months, Storm began to regress. He was using less words and not as active as he had been. We began early intervention services when he was two years old. He had regressed to the point where he was considered non verbal and low muscle tone. The pediatrician referred me to a Neurologist who ordered an MRI and 2 day EEG. After barely examining, observing or interacting with him, she rudely told me that Storm was PDD and prescribed 20 hours of ABA Therapy a week for him. I knew there was a problem, but having worked with children who are PDD I knew that was the wrong diagnosis and treatment for my son.

We went ahead with the MRI and EEG and it was discovered that Storm has Hydrocephalus and Aqueductal Stenosis. The Neurologist said it was not a problem but referred me to Dr. Mazzola, a well respected neurosurgeon. Dr. Mazzola looked at the MRI, felt there was a serious issue, surgery would probably be necessary, and ordered a more extensive MRI. After the second MRI we got a second opinion from another well respected Neurosurgeon. He was in agreement with Dr. Mazzola and said Storm should have a programmable shunt. When I spoke to the neurologist about this she disagreed and tried to send me to another neurosurgeon.

Needless to say, we stopped seeing that neurologist and had the surgery done by Dr. Mazzola at Morristown Hospital.

We noticed a change in him almost immediately. Five days later, when the early intervention therapist began to see him again they were shocked by the change. My husband explained it best, in the animated movie, How The Grinch Stole Christmas, when the Grinch’s heart grew and he was so happy and had that big smile on his face, that is what Storm was like, extremely happy with a great big smile all the time. He was no longer in pain and back to the happy little boy he was before.

He wasn’t immediately perfect, but he was well on his way. He continues with special ed services through pre-school, PT, OT, and speech. He tested out of special ed at the end of Pre-school. In Kindergarten, 1st and 2nd grades he continues to receive PT and OT. Storm is now going into 3rd grade and only needs PT. He has a 504 with extra time on tests and preferential seating in class but is doing well and on grade level in all subjects. No one knows there was ever an issue unless I tell them about it. Our son is capable of anything he puts his mind to, just like every other 7 year old.

One piece of advice I would give to all parent is: question everything and research your doctors. Don’t assume they know everything and will tell you everything. Get the correct diagnosis no matter how many doctors you need to see, it makes all the difference. We learned the hard way that not all doctors are forthcoming with information and some really don’t seem to care.

We were fortunate to meet Dr. Mazzola. She has shown she cares a great deal for my son. She has been very patient and given us all the time we needed to answer our questions and aide in the care of our child. The support of family, friends and good doctors helped us to make the decision for our child. Surgery was the right option for Storm, we wish you well in making your decision.