OK ok, so, I have decided to write a wee report about my time in London for brain surgery … a lot of you knew i was away and thank you for your support … some of you didn’t. To cut a long story short, I had to have a procedure called DBS (Deep Brain Stimulation) to treat a rare condition I have called Tardive Dystonia. This is a movement disorder causing involuntary muscle contractions caused primarily by reactions to particular prescription drugs, in my case anti-psycotics. It started in 2010 very gradually with a slight twitch of my head and progressed to the point where I could hardly walk unaided. It was like someone was pushing my hips forward and my head back and I couldn’t rectify it. When I walked it was really noticeable. People would think I was really wasted, pregnant or even having a seisure. It was getting to the point where, if it got worse, I would really needed a wheelchair. I was avoiding going partying as I would feel people were looking at me and I couldn’t dance which made me sad :-(
Anyway, after trying all other options including medication and botox injections in my neck, the movement disorder specialist in Belfast decided it was best I was referred to the Hospital of Neurology and Neuroscience. After a few days of intensive tests, both mental and physical back in February, they gave the good news that I was a suitable candidate for DBS and the operation could go ahead. The date was set for the 6th of May and here is what happened…
To find out more about the operation itself see HERE!
Sunday 4th May – Arrived in London okay and found the ward. Greeted by a very fat priest proclaiming that all the staff were angels, it was not the 5* accommodation I was hoping for. There were bays of 6 beds and bay 1, bed 2 would be my home for the next 8 days. The woman beside me looked like Mr Bump which was a bit worrying. We went out for a Franco’s Pizza and felt a little tipsy. Upon returning to the ward a doctor was awaiting to do some balancing and co-ordination exercises. I did not tell him I had been on the vino…bad nights kip. Some man was shouting ‘ I can’t sleep! Why, why, why delilah?!’ … this would have been quite funny if I wasn’t so tired,
Monday 5th May – The day before the operation. One of the surgeons, Jonathan, came to see me during the day and I asked if I could have a wee drink with my tea that night. He said ‘no’ in case I fell down and jeopardised the operation…unsatisfied with this answer, the professor an head of department came to see me to get me to sign a consent form.I asked him about the drikies and he said it would be okay to have a wee one! This made me happy. I also had to meet the anaesthetist who was hilarious!!
I met Ju (who was kindly staying all week), Dave, Rebecca and Mike for a wee Pizza Express … I was probably being quite quiet as the realisation of the big op ahead was sinking in. The last supper…
Tuesday 6th May – Operation time. I was wakened at about 6am to get washed in hibiscrub. I had to use this stinking stuff every day coming up to the op. It is a disinfect the skin of people who are having surgery and prevents MRSA. I had to put on my oh so attractive plastic pants, surgical stockings and gown thing. I got taken down to theatre about 7.45am and mum and dad came too. There was a slight drama over my gel nails which should have been taken off but with out the proper remover, these bad boys were going no where! The prof asked how my outing last night was making drinking motions with his hand which lightened the mood! The last thing I remember was Mr Zriinzo, the chief surgeon winking at me and being injected into my ankle. I had though the aesthetic would take effect gradually but no – black out.
The next thing remember was waking up in recovery thinking they had not even done the operation yet. Then someone who I can’t remember came to say that it had been a great success. I was shaking really badly and I remember thinking ‘oh no, it hasn’t worked!’ but they said it was a common side effect. I was allowed visitors, family only, 2 at a time so mum, dad and my sister came in which I don’t remember at all. I was kept in recovery longer that expected due to high blood pressure and eventually got back on the ward about 8pm demanding a tuna sandwich which I also do not recall!
Wednesday 7th – This day is quite blurred…I remember being awakened quite early and given really strong morphine like pain killers. I was quite bruised where the battery had been put in and it was sore to move. I decided to try walking and it had improved loads even though my battery had not even been been turned on. Ju came to visit with her lovely new haircut and we were amazed (at the walking and the hair)! I felt totally exhausted so we decided to leave the power turn on until the next day.
Thursday 8th – Ju came to visit again as did my mad London Aunt! My walking was still great though EPIC FAIL! My bag had been stolen, most likely when I was in surgery. Another woman opposite me had hers stolen as well even though hers was in the security box. It did say in my itinerary not to have valuables on the ward but I didn’t think anyone would steal from a hospital..i mean really? It must have been a member of staff. The rotters. Got my battery pack turned on. Power up! 53K of technology built into my body.
Friday 9th – Juju came early to say goodbye and hid snuck me in some cider. I decided to practise my walking and went all the way to Starbucks across the Square. I was pretty knackered at this stage. On the ward they woke us up at 6am to do blood pressure, breakfast at 8am and it was also really noisy at night. I was not adjusting to this routine :-/
Saturday 10th – My aunt Mairead from Leeds came down to visit me for the day and well as my friend, Pip and her Mammy Mayo from Lincoln!. They brought me a fab owl door stop and a new owl bag from my friends Mel & Chris to replace the stolen one. It was brilliant. I went to the pub with the mayos who were also amazed that my walking was so good. After that we said goodbye to them and went to a delicious Peruvian restaurant in Soho. Mum found the cider in the drawer and I got told off.
Sunday 11th – A flirtatious police man came to take a statement about the missing bag. I drew a picture of what it looked like but he wasn’t very optimistic about getting it back. Apparently hospital thefts are quite common these days. He was very friendly but had a big beard. No hairy kisses for me! My Aunt came over from Ballymena to see me today and brought some creative cards my sister’s class had made (she is a primary school teacher). They were very funny. Back in Soho for a nice italian. Yes, I had done well at avoiding the hospital food!
Monday 12th – Yesssss got discharged today to the Cotton Room. This is a hotel own by the NHS. 4* and only built in 2012 it is really nice. It is mainly for Cancer patients. No more 6am starts – whoop. Mum and my Aunt went to visit my Uncle. At this stage there was an absolute head melter opposite me in the bay– a 17yr old girl who would not stop complaining and going ‘awwoooo’ every so often. I was very glad to get away though I did meet some nice people there. That night we went to a good old fish and chips restaurant.
Tuesday 13th – Mum and my Aunt went shopping to Portobello while Dad and I checked in to the hospital to getting my battery adjusted again. A lot of people wonder if I can feel anything when they change it but I can’t. Back at the lovely Francos tonight again with my Aunt who is off to a play with mum. Met up with Mike for a quick drink at the pub on the corner but couldn’t stay long as he was working.
Wednesday 14th – My Aunt went home today and mum and dad walked her to the station in the morning time. My walking is still going strong and we go for a wee Cafe Neros. That night we went to a Dim Sum restaurant called Ping Pong. It was delicious and the cocktails were amazing … I always said the Lockside Lounge did the best Mojitos but these were close competition. I could quite happily have drank my way through the whole menu!
Thursday 15th – My last day in London. Checked in at the hospital again to get my stitches out and learned how to turn the power up on my battery myself. We rush across the city just in time to catch Billy Elliot the Musical. I had seen it before but it is still one of my faves. Very funny! Met up with Dave, Rebecca and Ivanka for another Francos and a good old natter. Rebecca said she couldn’t stop starting at me, the change was so dramatic and this made me happy!
Friday 16th – Checked out of the Cotton Rooms at 11am and set off home…what an experience!
So that is a rough guide to my brain surgery experience. Looking back I did FAR too much and not enough resting. When I came home I felt thoroughly exhausted and a bit depressed – A combination of tiredness and the come down from the anaesthetic which hit me really hard. I would say it took me a good 2 weeks to feel normal. I had a bit of a relapse where my movement came back a bit … apparently this is due to the swelling going down in the brain which can help stop the dystonia. To counteract it, my power had to be turned up more to try and balance it out. They say I am very lucky to see results so soon as for some people it can take months. I have stated physio to try and straighten me out a bit. I know that after over 3 years of walking incorrectly it won’t happen over night. I find that it is better walking in heels, when I am tired or with my hands in my pockets it helps! I am so happy I can go out without people starting and even doing simple things like going round the shops. DBS team, London, I can’t thank you enough! You have given me my life back!