After the mid-face advancement was finished Melissa was sent for a MRI to investigate this shadow.
The results were that Melissa had a chiari malformation and a pocket of fluid in her spine called a syrinx. The chiari malformation is where the brain is growing down into the spinal column blocking off the flow of the cerebrospinal fluid.
Melissa was referred to a neurologist at the Mater to be assessed.
The neurologist examined Melissa and said that she had quick refluxes which meant the chiari malformation and syrinx was impacting on her functions. The neurologist decided that she would monitor Melissa and if her symptoms worsened then she would be referred to the neurosurgeon.
Over time Melissa began to notice more symptoms - she would get tingling in her hands and she would have 'drop attacks' where her legs would hurt and fall out from beaneath her, with her landing on the ground. She also began to have headaches.
As we were told would happen, the neurologist referred Melissa to her neurosurgeon.
The neurosurgeon requested a MRI with dye x 2 so he could see exactly what was happening.
Surgery was planned and a date set.
Initially the neurosurgeon told us that he would be performing two surgeries:
1) a revision of Melissa's vp shunt
2) the repair of the chiari malformation
I had heard of 'chiari malformation' on the yahoo email group I was on. I also googled it to learn more. What I googled was thankfully the same as what the neurosurgeon told us he was going to do.
He was going to shave off part of the inside of the top vertebrae and if need be apply a duraplasty to the brain in the gap. If need be he would also put in a shunt to drain the syrinx.
Melissa was admitted after having her MRI which we did not know was happening. I had to have a friend take Nick and I to the hospital after school. The plan was to have the shunt revision the next morning.
Melissa fasted from 2am. The next morning the at 9.45am the neurosurgeon arrived in the ward and told me that he would not be operating until the eye clinic had examined her eyes. They were supposed to have seen her earlier in the morning but no one was available. Melissa ended up having her eyes checked at 2pm - she was still fasting and crying from hunger.
It was after 3pm when we heard that the op had been cancelled because there was no pressure in her eyes. She could finally eat.
We then could not leave the hospital. We had to wait for the physio to come and assess her and for ENT to come and assess her. They arrived the next day.
The neurologist also came and documented Melissa's new symptoms.
The next day we were about to go home when we were told not to go home...that the neurosurgeon wanted to come and see us the next day.
So we waited and waited and waited. Eventually we were told that the neurosurgeon would not be coming to see us and to go home. I did find this frustrating but I've been coming to the hospital long enough to know that things happen and doctors can not always come when they say they are going to.
The operation went ahead. It took about 4 hours and she went to PICU afterwards.
The neurosurgeon took part of the inside of the top neck vertebrae and a 2cm x 3cm piece of the lower skullbone. He then had to patch the exposed spinal cord with a duraplasty. The decision was made to not put a shunt in the syrinx (pocket of fluid) - to let the body readjust on its own.
Melissa had a lot of pain with this surgery and a very stiff neck afterwards. We were told that the pain was mainly due to the muscles etc. being moved more than the removal of the bone.
She continued to have some symptoms post-op.
Another MRI was performed and it showed that the syrinx was still there but it was smaller. Time would tell whether more surgery would be needed.
© 2012 by Jenny Woolsey
No part of this blog may be reproduced without prior permission