Jenny's Story: My Life with Crouzon Syndrome
Growing Up with Crouzon Syndrome
Being an Adult with Crouzon Syndrome
Being a Mother with Crouzon Syndrome
Dealing with Unexpected Crouzon Syndrome
Helping Your Child to Cope with Teasing
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Jenny's Inspirational Sayings II
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I
Operation 3 - February 2005
About 2 months after Nick's Frontal Orbital Advancement surgery we noticed that something was happening to his forehead and the shape of his head. We could feel a hole in the right side of his forehead where there should have been bone and we could feel his brain pulsating through it. It seemed to be getting bigger. We also noticed that Nick's forehead was becoming higher and more bulgy.
We were going to the hospital for an appointment with the Developmental Pediatrician so we sought his opinion whilst we were there. He said to get in to see the neurosurgeon as soon as possible. The next week we saw the neurosurgeon who was concerned about what he saw. He sent us to see the plastic surgeon the next day. He was also concerned. The next week Nick had a CT scan. Both doctors suspected hydrocephalus.
The CT scan showed that Nick's ventricles were enlarged which meant they had too much fluid in them. This had caused the brain to fill up the large space that the plastic surgeon had made when he did the Frontal Orbital Advancement. The excess of fluid was pushing the brain out and the pulsating of the brain was eroding the bone away. The CT scan showed a number of holes and thinning of the bone.
The next day we had a meeting with both the neurosurgeon and plastic surgeon to discuss what was going to happen. Two options were discussed. One was to re-model the back of Nick's head to allow more space for the brain to expand. The other was to put in a VP shunt. The re-modelling was ruled out as the concern was that it may not solve the problem and if the erosion of the bone continued then Nick would not have any skull bone in his forehead. The opthamologist also took a look at Nick. Hydrocephalus can put pressure on the optic nerve which left untreated can lead to blindness. Nick had significant pressure on his optic nerves. In total the assessment showed that action needed to taken urgently. So Nick was booked in to have the VP shunt inserted 4 days later.
The plastic surgeon said that in Nick's case the following were indicators of hydrocephalus:
 | Bulging of his head and the shape changing - it was becoming higher |
| Evidence of many purple veins on Nick's forehead |
| Pulsating of the brain and the wearing away of the skull bone |
| Pressure on his optic nerves |
Normal symptoms of hydrocephalus are headaches and vomiting. Nick did not have the vomiting but we think that he did have headaches as he would hold his head, pull his ears and cry. He also stopped a lot of his talking/babbling. These were the same symptoms that we saw before he had his Frontal Orbital Advancement.
We went in to hospital on the Monday for observation and blood work. Nick went into surgery on the Tuesday about 11:00 a.m. The operation took about 1 1/2 hours and all went well. The shunt is the same as Melissa's. It is a VP shunt which is placed in the ventricles of the brain and goes down into his stomach. It is in for life.
Nick had vomiting for 2 days afterwards. The neurosurgeon said that this was because of the draining of the fluid and the reduction in pressure. On the Wednesday it was Nick's first birthday. We decorated his cot and had a small party for him. He was not well but did manage to eat some chocolate cake. The neurosurgeon said on the Thursday that everything looked good and that the drama should now be over. We took Nick home on the Friday. He was in hospital for 5 days.
We noticed within a day the difference that the shunt made. Nick's forehead became flat again but we did notice that the bone structure of his forehead had changed from the pressure of the brain. So we have booked in to see the plastic surgeon about this.
Below are the before and after photos.
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Nicholas in December, after his Frontal Orbital Advancement |
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Nicholas in February showing Hydrocephalus |
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Nicholas five days after having the VP shunt inserted |
