I was happy to get home from hospital on Thursday 15th November but unfortunately on Friday night I was disappointed when I could feel the headache starting to come back again.My heart sank that it had come back so quickly. On Tuesday 20th of November we went into hospital to get the shunt setting changed from 80 to 100 to see if that would have any effect on the headache but a few days later it got worse.On the 29th November we went in again to try setting it at 60 to see if a lower pressure setting was the answer. Unfortunately, very quickly I started to feel worse and very nauseous so on Saturday we went back in and the specialist nurseset it back to 80 to see if that would help. None of the changes helped and the headache just kept getting worse. That weekend we decided to put the Christmas-decorations up early to help cheer us up!

We went into hospital for a meeting with my surgeon to look at what to do next. It was late on Tuesday afternoon of 4th December – we had to wait a while in the hospital and my head was pounding (it feels like something is constantly crushing my head). I just wanted to lie down so the lovely nurses let me into the interview room where there was a couch so I could lie down and close my eyes. We had a really long chat with the surgeon and he explained that sometimes children who have had a lot of shunt revision operations develop headaches and they don’t always know why or how to get rid of them. This was not good news – I could bestuck with a headache that made me feel horrible all the time!

We agreed that thenext step would be to insert a Telemetric ICP monitor in my head which can moreeasily monitor pressure. The op was scheduled for Thursday but I had to go backin on Wednesday afternoon so I could get all the pre-op checks done. At leastthere was a plan!

Pictures of the Telemetric monitor

I had the operationon Thursday morning and they left me for a day to recover. On Friday night theybandaged the reader to my head and did overnight pressure monitoring while theshunt was set at 80. I. t wasn’t comfortable at all – my head was hot and itchyunder all the bandages. Then on Saturday I went home on a pass for a few daysrest and scheduled to go back in on Tuesday. I was glad to get home for a fewdays. The hospital is quite noisy at night and the nurses come in to do my obsevery 4 hours so I don’t get a great sleep.

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On Tuesday afternoon I went back in to hospital and the surgeons set the shunt to the top setting of 200 and put the monitor on. At 2:30am I woke up crying with an even worse headache. I was very destressed and upset. My mum quickly went to tell the nurses and they called the on-call neuro surgeon. When she arrived mum told her what was going on and she decided that the best thing to do set the shunt back to 80 to let me get a good sleep and then see what my surgeon thought in the morning. I managed to get back to sleep and by the morning it had all settled down again to the previous level (which was bad enough – I couldn’t believe it was even possible that it could have got worse!). The next morning they decided to let me have a day to catch up on some sleep and leave me alone.

The next day theyset the shunt to the lowest setting 30. If the top setting didn’t work maybegoing down to the other extreme would work, at least that was the theory. Thiswas worse! I started to feel very nauseous and I couldn’t sit up or stand up.Any time I did, I was wretching into a sick bowl soon after (lovely!). I wasfeeling absolutely awful at this point. I thought it couldn’t get any worse butit did! I just wanted to go back to normal, headache free. On Friday afternoonthey put the shunt setting back to 80. On Saturday (my mum’s birthday)  I gradually started to feel less nauseous.The nurses (they are so lovely) had brought in balloons, flowers and chocolatesfor my mum and later dad came in with birthday cake and balloons and presents.It wasn’t exactly the birthday celebration we had planned for her but we madethe most of the day and shared the cake with the nurses. Unfortunately I wasn’twell enough for visitors so it was just the three of us. My sister was workingall weekend so we didn’t see her either 😦

On Monday theydecided not to do any more before Christmas so I went home with what I classedas a 10/10 headache. I didn’t feel very well over the Christmas period, theheadache was wearing me down and I was crying a lot. Even on Christmas Day. Wedid our best to make the most of it but I couldn’t go out and enjoy thefestivities like all my friends were doing. I had to go in for a check up onthe 27th of December to make a plan for the new year. The journey into thehospital was tough, I had to take pillows into the car to rest my head on andlie down during the journey.  Thesurgeons decided to change the setting to 70 and let me go home for the newyear as they didn’t think the change from 80 to 70 would make a big difference.They were wrong! I was very sick over new year. I couldn’t stop wretching andhad to lie down all the time. I celebrated the New Year in bed or on thecouch.  On Thursday 3rd I went back tohospital for more monitoring at 70 . The following morning they changed thesetting to 90 and its been at that setting ever since. I am not as nauseous butunfortunately it has made no difference to the headache .

At the moment mysurgeon is not sure what to do. He is reluctant to do any more shunt revisionsat the moment.  He is going to askanother surgeon in the team to look at my case in detail for a second opinion.A fresh pair of eyes might come up with a different perspective. Meantime I amleft with a very disabling headache. If you were to look at me you would neverknow how bad I feel. I look perfectly normal and healthy. Inside my head it’s adifferent story. I am struggling to concentrate and live a normal life likeother fourteen year olds. I really want to get back to school and that’s what Iam aiming for – at the moment I don’t know if I can manage to do that. I can’tmanage to get out of the house for long before the headache overwhelms me. I’llkeep trying and I’ll let you know how it goes. Fingers crossed that things willsomehow get better soon!