July 6th 2019 I will be taking part in the 3 peaks in 24 hrs challenge, I will be walking 36km, climbing over 3000m (and back down) and driving over 450 miles. I am fund-raising for the robotic digital microscope (to benefit neurosurgery) at Southmead Hospital for the amazing work that they have done for me and many other people.
Back in February 2016, I was taking part in a course and had the usual daily headache, went to meet some friends for the evening and when parking the car I suddenly felt sick (but wasn’t) and came across freezing cold….still to this day I have no idea of how the ladies I was meant to be meeting found me, all I remember is i couldn't really see and not making any sense. They called an ambulance, I was trying to say that it was just food poisoning from my lunch, apparently I said I had eaten Zebra!!(Not sure where that came from). When being moved from the car to the ambulance the entire right hand side of my body was no longer functioning. I was taken to the BRI where scans were done and then transferred to Southmead, L2 Gate 6B - Neurosurgery (I had no idea of this), on arrival I passed out and was non the wiser of what had happened.
I was informed 5 days later that I had an Subarachnoid Hemorrhage which had been caused by an Artiovenous Malformation (AVM), a condition that I would have had since birth. An AVM is a tangle of abnormal blood vessels connecting arteries and veins in the brain, like a big knot. It is a rare condition with less than 1% of the population having them.
I had many issues from the Hemorrhage, where the blood is sat on your brain and what I was suffering from were weakness, paralysis, severe headaches/migraines, trouble with language (writing, speaking and understanding), confusion and loss of short term memory (hence my nickname of Dori), swelling on the brain and seizures.
I was in a bed bound state in hospital, every time a seizure hit, when I came round I would be asked to blink and move my toes, not always something that was possible until some time had passed. Kept in hospital whilst getting used to seizure medication and allowing the swelling to go down on my brain, a combination of at least 38 tablets a day, the final bit was to start walking again, the first day was standing up with my zimmer frame before getting back in bed and having a seizure, the next day,managed one step before getting back in bed for a seizure, this took up some time but eventually got to a stable enough state (still 15-20 seizures a day) where I could go to my parents house for further rest and wait for the next step!
The next visit, a few weeks later, I met Mr Richard Nelson, my Neurosurgeon, he gave 3 options of what were available, which would you choose?
1. Manage this conservatively and do nothing about it. Patients in 40s, 50s and 60s may take this route, especially if it is trivial symptoms. This option was not one recommend for me.
2.Radio-surgery, a Gamma Knife using Gamma rays sent directly to the AVM in one session, it is designed to thicken up the blood vessels and clot, therefore blocking off the AVM, making it into a scare. It takes 2-3 years to show the blood vessels have shrunk and been blocked off, during this time potential for further hemorrhage, further upsets. The suggestion after this time was that the AVM would have blocked off by 60-80%, a 1/3 of the AVM may still be remaining. You would then be in a position of leaving further treatment or having surgery to remove it completely.
3. Craniotomy. 10 hour surgery, able to remove the AVM but risks included are bleeding, damage to brain tissue and stroke. Given the area, memory loss, aspects of speech function, cognitive and thought process difficulties are probable following the surgery. Surgery could trigger seizures, remain seizure free for 2 years and able to come off of the seizure medication.
July 13th 2016, 6am, Mr Nelson came and confirmed everything before heading in for surgery. 10 hours later I arrived back in the ward (ICU got fully booked in that time), laid out with blood draining from my head using a pipe into a bottle and 44 staples in my head. As I came round speaking and writing was an issue but was re-assured by Mr Nelson that this would be down to the swelling in my brain. A week later, I walked out of Southmead with my parents, huge smiles and my speech was improving. The following scans showed the AVM removed and the aneurysms were also cleared.
The following 2 years I have been able to slowly come away from the seizure medication and remain seizure free, one of the hardest things I have had to do, that is some serious medication and was not in a good place whilst going through the come down! I have just had a surgery in February, a Cranioplasty, plastic surgery and the Neurosurgeons have spent the last year designing a 3D silicon implant for the side of my head from where the muscle did not recover.
I am due my last appointment in August to have the complete sign off and could not be happier with all the work that Southmead Hospital have done. The nurses on L2 Gate 6B were absolutely amazing throughout, the Neurosurgeon team, Mr Richard Nelson is officially an absolute LEGEND. Will never be able to thank them enough. NHS rules!
It is a part of my life that I am still trying to get my head round, forever thankful for the all the amazing friends and family that have been involved along this road. Doing this event is going to be a big challenge for me, but having never done a sponsored event I can not wish to raise money for a better case.
The neurosurgery team are launching a new project for an advance robotic digital microscope. This will allow surgeons to examine the brain in much more detail in order to remove tumors and working on major trauma injuries. They are looking to raise £750,000, if successful this will be the first one in Europe. https://www.synaptivemedical.com/products/modus-v/
Thank you in advance for your generosity, it means a lot!