I had my latest shunt revision operation on the 11th of April (operation number 11!). It started as usual with a headache that wouldn’t go away and after a few days it was getting worse so my mum contacted the hospital and they told us to come in to get it checked out. After a few tests they decided that it was likely that the operation they had carried out 3 weeks earlier (another shunt revision) had not been successful and I would need another operation 😩.

This has been a sore one! I have had a shunt in my left ventricle for 5 years but the ventricle had collapsed so the surgeons decided to completely remove it and put a new one in the right ventricle. This has meant that I have 2 wounds in my head, a wound in my neck, a wound in my abdomen and quite a bit of bruising. For the first few days I was very sore and couldn’t get comfortable.

It also takes a few days to get used to the changes in my head!

These last 2 operations have been a bit of a blow to say the least. I had been feeling quite optimistic about life as it had been 14 months since my last operation which was a bit of a record in the past 5 years. I was finally feeling better and had more energy because I was on the correct level of medication ( it had taken a long time to get that right). I was back at school for 3 periods each morning which is the most I had managed for ages. Up until then I had a lot going on. Let me explain:-

December 2012 – Tumour biopsy to check if cancerous or benign. Ventricular shunt fitted. The tumour was a benign pilocytic astrocytoma grade 1 in the hypothalamus gland.

January 2013 – I had a terrible headache and needed an emergency Craniotomy because shunt had over drained ventricle and caused a blood clot.

March/April 2013 – I had a headache because of a shunt infection. Operation to have shunt removed and an external drain fitted for 2 weeks while on antibiotics and then another operation to have the shunt put back in.

July 2013 – MRI showed that tumour had grown.

October 2013 – Tumour de-bulking operation to see how much of the tumour could be removed.

December 2013 – Surgeons decided best option for treatment was Proton Beam Treatment in Jacksonville, Florida.

January – April 2014 – Went to Jacksonville Florida for 3 months for 30 Proton Beam Treatments. The treatment made me very tired and my hair fell out at the top of my head and at the side where the beam went in. I had to wear a special mask during the treatment.

June 2014 (day before Strathaven Gala Day)- I had a bad headache for a few days and needed a shunt revision operation- Catheter from valve to abdomen had dislodged.

March 2015 – More headaches – Shunt revision operation- Blocked shunt.

January – May 2016 – Constant chronic headache. Numerous hospital visits to have shunt checked and pressure monitoring. I was very tired and miserable during this time because I woke up with a headache and went to bed with the same headache every day.

May 2016 – Headache – Shunt operation revealed shunt not letting enough fluid through.

January 2017 – Headache -Shunt revision operation- Blocked catheter and shunt valve.

So you can see why a break of 14 months was so precious!

Anyway I am so grateful to the clever surgeons who keep fixing my shunt and send me home again.

There is also some very good news as the Proton Beam Treatment has stopped my tumour from growing any bigger 👍😁