Having ICP Monitoring

Last Friday I went into the national hospital to have an ICP monitor put into my head. This was the first operation I have ever had so as you can imagine I was pretty terrified and being thrown in the deep end that is, brain surgery. If you have Arnold Chiari Malformation and are yet to see your surgeon, he or she may suggest that you have an ICP monitor in order to determine what would benefit you most; a shunt or a decompression. This is a really accurate way of reading the pressure inside your head every minute of the day. As mentioned in my previous post, this all depends on wether your surgeon believes a shunt could be an alternative to the decompression as this is such a big and invasive operation if it can be avoided, it will be. 
The ICP monitoring procedure sounds rather daunting. I have to admit that I was so anxious about it! It involves your surgeon drilling a small hole into the top of your skull and inserting a small wire and bolt into the tissue area surrounding your brain. This is then secured with a second bolt outside your head to make sure it doesn't get pulled or come out during the monitoring time. The remaining wire on the outside is left so that it can be plugged into a laptop which monitors the pressure of your CSF over 24 hours or more if the surgeon needs to collect more data. 

What the procedure feels like... awake!  

I arrived at hospital at 7.30am and luckily got told that I would be first in theatre with Mr Thorne, so I didn't have long to let my nerves get the better of me. Most people having this operation are given the option of having a general anaesthetic or a local with lots of sedation. I obviously opted for a general as I'm sure like most people, the thought of having a hole drilled through my skull whilst awake was just unimaginable. Within half an hour of being at the hospital I was called down to theatre and greeted by Mr Thorne and my lovely anesthetist who made me feel so relaxed and reassured that I was in the best hands. Then she gave me the news I did not expect to hear... I was going to be AWAKE during the operation! Although I had opted out of being awake Mr Thorne decided that it was too high risk to be asleep throughout the procedure. The main reason for this being that they wanted to talk to me throughout the operation to make sure they had not aggravated my brain or damaged anything as some (very few) patients might experience a seizure during the op - a risk that I did not want to take. So off I went, walking in what felt like a weirdly calm bubble into the operating theatre. Waving goodbye to my teary eyed mum was definitely the hardest part. When I got into the operating theatre I was asked to lay down on the bed and place my head onto what I can only describe as a small hollow cushion in the shape of a toilet seat - weird I know but that is literally the only way I can think of describing it. One thing I must say to anyone having this done awake... DO NOT look around the room! Look at the floor until you are lying down. I very regrettably looked at a trolly that reminded me of something from a SAW film, really not a good move! So anyway, after I got over that little blip the lovely anaesthetist got me a heated blanket and put my cannula in. Everyone was talking to me not that I remember any of the conversations as the after effect of being sedated is luckily memory loss of most of the experience. When they put the sedative in it feels cold and odd for a few seconds and then you feel absolutely wonderful. I'm not joking. I felt like I was floating on cotton wool and didn't have a worry in the world. I don't remember much after that until the drilling begun when I remember my head shaking a lot and somebody had to hold my head still because it was so aggressive. That makes it sound awful but honestly, you are so highly sedated you hardly remember anything and don't really batter an eyelid when it is happening. After 45 minutes from drilling time I was ready to go to recovery and rest up for half an hour until my drugs had worn off. I do remember this part quite well as I remember asking the nurses what they were gossiping about and then told a lady that she had great skin... I was still pretty much completely off my face but they seemed to like telling me all the nurse gossip...I think! Shortly after my lovely chat I was wheeled back to my ward and left to sleep for half an hour. Then my mum, sister and boyfriend came up which was the most delightful sight! 
Here is a picture of me looking my best with my new head accessory a few hours after the op...

The orange/ pink bit around the bolt is just bandage covered in Povidon-iodine (surgical anti bacterial solution) and the wire is connected to the computer as you can see here...

Once the monitor is plugged in you can sit up and unplug yourself to go to the toilet and you can even go for a short walk to stretch your legs. Unfortunately my Chiari related dizziness was at it's all time worst for most of 4 days in total so I was unable to get up unassisted and to be honest, just the thought of walking around made me feel nauseous. Apart from that, having the bolt/ wire wasn't as bad as it seems. I have been so unwell recently that laying in a bed for most of the weekend wasn't such a bad thing. Also, having great family and friends around to visit made it much more bearable along with plenty of magazines and a trusty i-pad for catching up on 'American Horror Story' - a miserable choice I know, but I am addicted to it at the moment and anything to put my mind off the fact I was attached to a computer by my head was worth a try! 

Having the bolt removed... with no pain killers...

After 24 hours of being monitored the doctors had collected enough data for me to have the bolt and wire removed. I think I was dreading this part more than the putting it in part as I was aware I would be without pain killers. The reason for this is that it is too dangerous to inject anaesthetic into your head with an open wound as I think from what the doctor said, it can make you brain dead and also cause seizure. So, the doctor wheeled his little trolly over to my bed and moved my bed so that I was lying flat. I then got my trusty neck pillow, grabbed my mums hand and calmly breathed as the doctor unwound my bandage. I have to say that this was really sore. It stung a lot, so much so that I ended up with my neck pillow in my mouth. Then comes the unscrewing of the outside bolt which was also very painful and uncomfortable but it is also over before you have time for it to get unbearable. Then the worst and almost final part is taking out the inside bolt... I'm not going to lie, I found this part absolute agony. My head was pounding, the wound was stinging like mad and I could hear the bolt squeaking and grinding through my skull. My boyfriend had to hold my legs still because they were flapping everywhere as I was trying so hard not to make any noise. After that little nightmare is over you are stitched up. Luckily the stitch is already in and all the doctor has to do is tighten it, unfortunately mine was not tight enough so the doctor took it out and put in two new stitches, which were the icing on top of the cake of pain. This just stings like a bitch. After the ordeal I was given lots of morphine and left to lay flat for two hours, which was good because I was still so dizzy and exhausted. Here is a lovely picture of me around four hours after having it taken out, looking erm... great... 

After this I stayed in bed for another day and night until I was ready to get some not so fresh London air and try out my new set of wheels... 

Getting the results... I'm having more brain surgery! 

A week later, now out of hospital I was going back in with my mum to meet with Mr Thorne to get my results. We drove into London this time as my dizziness means it is almost impossible for me to go on the tube and I am still a little nervous about the use of a stick or wheel chair on London Underground (I must read up about that!). Long story short Mr Thorne explained that they found the data very useful and that it was a successful outcome. He then went on to say that my CSF was of a normal pressure and that because of this, a shunt would do nothing for me. So the only outcome is to relieve pressure from around my brain stem in order for it to ease the pressure it is putting on my spinal cord, causing my debilitating symptoms. Mr Thorne then reminded me that this operation will not cure my condition, it will most likely alleviate my symptom progression and mean that I can have a better quality of life to how I'm living now. The operation is called 'a posterior fossa decompression' for anyone who was wondering. You can find details of it here: http://chiaricare.com/chiari-1-malformation/treatment/traditional-decompression-surgery.aspx

Harriet, my sister, has had this surgery and will be posting all about her experience sometime this week for anyone who is due to have it or just curious. 

Stay positive and strong and have a great week everyone! 

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