June 2014, not long after I got back from my treatment in Jacksonville, Florida I got another headache and ended up back in hospital. Turned out the catheter had become detached from the shunt valve. It is quite unusual. Lucky me! So that meant another operation.

March 2015 I got a headache and I had to go back in for another operation because my shunt got blocked again.

January 2016 I started to get headaches, we went into the hospital through Accident and Emergency to get it checked out. This time there was nothing obvious that the doctors could see so after a couple of days in hospital I was sent home. The headache didn’t go away. We went back another twice and I was put on to a pressure monitor for a few days. The doctors could not work out why I had a headache. They said it might be a migraine. Meanwhile I was going insane with a, constant headache 24/7. It never went away. It was there when I woke up and when I went to bed. It was 10/10 on my pain threshold. It was unbearable and no painkillers made it any better. I couldn’t stand any noise so I stayed in bed a lot. They put me on two different medicines, Amitriptyline and Topiramate which are migraine medicines. They didn’t work at all. I also had extra appointments with headache doctors and psychiatrists to see if they could help. I was convinced it was my shunt but unfortunately the doctors were not. I was so miserable I just can’t tell you. Anyway in May after 5 months of misery the surgeons agreed to take my word for it and said if I wanted them to operate to check my shunt they would do it. I said I wanted surgery. I was so desperate and I really felt that it was my shunt even if the normal signs of malfunction weren’t there. I was very nervous for this operation. The thought of it not working and still having the headache after it was very scary. When I woke up after the surgery I knew right away it had worked. I had no headache. I was so relieved. I had forgotten what it was like not to have a headache. It was good to hear the surgeons tell me that I was right and it turned out that my shunt was working but not very well. It was getting stuck and causing a low pressure headache rather than the usual high pressure headache and that was more difficult to detect. The specialist nurse told the surgeons that they needed to listen to me next time. I know best how my head feels!!

January 2017 I started to get a headache. I felt terrible again with another 24/7 headache. We went into accident and emergency to get it checked out. I hate going there! I am always trying to move on but I never seem to be able to. Whenever I move two steps forward I then go three steps back. They did some tests and decided to keep me in over night just to be on the safe side. The test results came back and showed that I had a flu virus and they suspected thats what was giving me the headache and they said that the headache would go away after a few days but it didn’t so I was back in hospital two weeks later with the same headache. The surgeons decided to operate to see what was going on. After the operation we got told that the shunt was blocked and they had to replace it again but after the operation I felt so much better. The headache was gone.

That brings us to this year. March 2018 I started to get a headache and it slowly got worse so back to the hospital we went. By this time the surgeons and nurse knew not to question what type of headache I had. They did a few tests but that didn’t really tell them anything but I was sure it was the shunt again so they went with what I was saying and another operation was carried out. A few days later I got out and I was better.

On 11th April exactly 3 weeks later, I started to get headaches again and we thought the shunt might have become infected after the last operation. That wasn’t the problem. This time the ventricle had collapsed so the shunt had to come out completely and a new one put in the right ventricle instead. Much bigger operation and twice as many scars 🤕🤕.

They had to reopen the previous head scar, cut open the other side of my head, place the shunt in and move it down into my stomach make another two cuts on the way in. One on my neck and one on the right side of my stomach so I was in a lot of pain after that operation. I recovered very well in hospital and got out after a few days. 🎉🎉I am please to report that I am now on the mend again and feeling better than I have in a long time. Fingers crossed that’s the last operation I’ll ever have to mention 🤞🏻👍

That is you up to speed with all the operations and we can now move onto somethingnew!