Blog 108 - Op #10 Nick's Headaches and ICP Monitoring

Nick complained about having persistent headaches at our annual craniofacial clinic appointment in January. He said that they had been going on for a while but he hadn't said anything - he'd just been putting up with them. As he hadn't mentioned them before, the plastic surgeon noted them in his clinic notes, but nothing else was done.

Once we got home I questioned Nick about them and asked him to monitor when they were so we could try and work out what was going on. His summary was they would often start around 10.30 and be quick or last for a long time; they would sometimes start in the afternoon; he wasn't hungry or thirsty; and he wasn't anxious or stressed. He would get the headaches when he was relaxing and doing fun activities like art. He said they were usually a 4 or 5 out of 10 but were sometimes 8-9. The ophthalmologist also examined Nick's eyes and no changes were noted, so his eyesight was ruled out as a cause. The ophthalmologist contacted neurosurgery and explained the situation. They were to ring me to discuss things but I did not receive a call. We had Melissa's annual check up with the neurosurgeon a month or so later, and she was doing fine, so I used the time to speak about Nick. By this stage it had been five months since Nick had raised his concerns.

The neurosurgeon asked me some questions and came to the conclusion that it would be worth doing intracranial pressure monitoring (ICP) to see if there was raised or low pressure in his brain caused by too much or not enough cerebrospinal fluid. (If too much it could mean a shunt blockage or not enough could mean the shunt is siphoning too much csf). We knew what this was as Nick had this procedure done as a baby. This is recorded in Blog 25.
http://crouzonsdownsandme.blogspot.com/2012/08/blog-25-two-more-ops-for-nick.html

(The ICP monitoring involves the neurosurgeon drilling a small hole in the skull, and placing the probe which is a long thin wire into the brain tissue. It is attached on the outside to a monitor which records the pressure in way of numbers. These numbers are recorded once every hour, and if headaches are evident, the activity at the time and the number are recorded.)
https://www.hopkinsmedicine.org/neurology_neurosurgery/centers_clinics/cerebral-fluid/procedures/icp-monitoring-direct.html

We received Nick's surgical appointment in the mail, but the first two were cancelled due to emergency cases. We weren't too worried about this, as it had happened often at the Mater Children's Hospital. It was just good to know for awareness, that it also happened at Lady Cilento. Nick was more upset than I was. His comment was, 'Don't they care about my headaches?'

On the third attempt, which was on Tuesday of last week, the 3rd of July, Nick fasted, we arrived at the hospital, went through the usual admission procedures and then he waited to go into theatre.

When we got into the room outside the operating theatre, the anaesthetists tried to talk to Nick to distract him while one put the IV in. It didn't work as Nick answered with one-word responses. He was nervous and brave. When Nick was lying on the bed in the operating theatire, I kissed his forehead and told him I'd see him on the other side. I watched his eyes flutter as he breathed in the gas through the mask, and the 'jungle juice' as the anaesthetist called it, pulsed through his body, putting him to sleep.



I sat through the wait on my own. My husband was at home with my other two children. I had brought a book to read, and my laptop, but my head could not concentrate. A new addition to the hospital were boards which showed where the patient was. If they were in the waiting room, they were in preop, then theatre, then discharged. Nick was number 4148.

I was told the surgery would take half an hour, so after an hour I started to get antsy. At an hour and a half, my eyes were glued to the board. I prayed that everything was going okay and that I was worried for no reason.

Finally it was time to see him. I rang the button outside of the recovery room and waited for the nurse to pick up. The doors opened and I was waved over to Nick. A nurse met me excitedly and said hello. She had cared for Nick as a youngster over at the Mater Children's so she was so happy to see him again, and she revelled over how old he was. (By the time we were discharged, we had been reunited with four nurses who were from 7 South.)

Nick lay on the bed, with a dressing on his head and was groggy. Once back in the neurosurgery ward, 11A, Nick woke up and ate. He wanted sushi, so I went in search of some, which I found. His throat was sore but apart from that, he was feeling fine.

We then had the two night stay to fill in. I spent a lot of time watching the numbers on the green monitor. I knew that normal pressure was 7-15 and over 20 was a problem. I didn't know what the outcome would be.

Nick and I filled in the time by watching TV, playing Uno, napping, walking the ward, and on our mobiles. I again couldn't concentrate and gave up trying to write. Flashbacks of former surgeries would flick through my mind. Fortunately Nick had no conscious memory of any of them.

The time was pretty noneventful. Nick had two minor headaches which were quick. His pressure fluctuated from -9 through to 28. The neurosurgeon said this was fine due to his previous skull expansion surgeries, and the fact that he wasn't having high or low pressures which were prolonged in time, and with headaches. Those numbers were just Nick. (When I reread my Blog 25, I saw his ICP numbers were in the 50s when his shunt blocked as a baby.)

We enjoyed a visit from the clown doctors (#clowndoctorsaustralia). Nick didn't say a lot as he doesn't like attention, but they made me laugh which was really nice. They are well worth supporting as a chuckle is a great thing when you're in a place of stress and facing the unknown.

The outcome of the stay was that Nick did not have intracranial pressure, which was good. If he had, it would have required a further skull surgery or a shunt revision. But we did not have an answer for the headaches. It was decided that the next step would be that Nick would have a MRI to see if that showed anything. So we are now waiting for that appointment.

When the bandage came off we saw that a lot of his head had been shaved. This upset Nick as he has been growing his hair since his Lefort III when he had his mid-face advancement done in 2012. He always said it was a rebellion for having his hair shaved on multiple occasions growing up. Now it was shaved again.

Of course it is only hair, and it will grow back. But Nick was worried about teasing when he goes back to school next week. We bought him a beanie and made an appointment with our hairdresser so she could work her magic. Nick's stitches will be taken out Wednesday 11 July.

The top scar is from previous craniofacial surgeries.

After stitches were removed.