CAUK Forum 2017 : Art Auction

At the CAUK Forum 2017, we will be holding an Art Auction with paintings by Carolyn Nicholls.

Without further ado, the paintings and auction in her own words;

I can’t run. I don’t fancy jumping out of a plane and cycling makes me dizzy. But I can paint. Painting was my lifeline after my 3rd bleed and consequent brain surgery. My cavernoma was on my speech and language centre (left occipital- just above your ear!) and after my surgery I could hardly read, so I put my nascent novel on hold and sketched, drew and painted to help my somewhat battered brain to heal.

Like many of you, I got so much wonderful help, information and support from the Cavernoma Alliance UK that I wanted to give something back. So I painted four works that could be turned into art cards to raise funds. You will be able to buy them for £2.50 each at local Cavernoma Alliance events and at the York forum in June. All the profit goes to further the work. I have also donated the original paintings to be auctioned to raise more funds and you can put in a silent bid online below. You can own one of these painting to hang on your very own wall or you can form a small group to bid and donate the painting to brighten a venue dear to your heart, perhaps a hospital or doctors surgery.

Please bid generously, bidding is open to friends, family and anyone who is good for the money! Bidding will be via email up until the LIVE auction at the CAUK 2017 forum and closed on that day with the winner being notified if not in the room. If you are not at the forum the painting will be well wrapped and can be sent to you by a courier.

For more information, to view the lovely pictures or to place a bid, see here

Katy, Surrey

The Adventures of Clive the Cavernoma

I’m going to take you on an adventure. A brain adventure. As that is what our little cavernomas have decided to take us on. My adventure started when I moved to the Southern Hemisphere, to experience working as a doctor in a slightly less stressful health system, with sunshine on tap and in the land of the all day brunch that is Australia. What I didn’t have in mind was getting to know the Australian Health Care System rather too well.

I am proof that doctors make the worse patients. After ignoring intermittent right sided pain and weakness for the best part of 2 months, my body decided to give me a wake-up call. Suddenly, after finishing a ward round, I had a wave of vertigo, which was swiftly followed by loss of feeling of my right arm. I really was in the right place at the right time when it happened. I was suddenly the “stroke call”, which is the alarm that goes out on doctors pagers, telling them that there’s a patient that needs urgent review with a potential stroke. This alarm always causes my heart to race, but this time my heart was racing even faster as I was the patient.

Pre-Op Clive

The scans showed a bleed in my left parietal lobe from a cavernoma in the sensory cortex.
I named him Clive.

The next 9 months of the adventure brought me to have close encounters with hospital food and 4am blood pressure checks. You see Clive was not a happy Cavernoma and he enjoyed throwing the odd tantrum. I had five bleeds in total during this period and the deposits left over from the breakdown of the bleeds caused partial seizure epilepsy, which refused to be kept in check with medication. During this time I learnt to appreciate the invention of the pill box, which kept me organised as I titrated up and down multiple drugs regularly.

With the growing side effects of the medication that weren’t controlling the seizures, episodes of drug toxicity and a constant “cotton wool brain” from the “oozing” of Clive, a decision was finally made. I had awake brain surgery to remove Clive the Cavernoma and the deposits from the bleeds.

Firstly AWAKE brain surgery was the funniest experience I’ve ever had. I said some embarrassing things in that operation (which I had asked to be recorded), and it still feels very surreal. On a serious note though, the thought of it is definitely scarier than the experience. I was woken up, slightly disorientated, but very comfortable and with a slight feeling of pressure around the head. Easy.

Learning to walk again

Clive, Post Op

Clive, Post Op

Post-op was the hard part. I woke up unable to feel or move my entire right leg. I still remember the feeling when I stood for the first time, in the huge forearm support frame, looking at my right leg with distrust. It was as if my leg had turned into a feather and I was asking it to support my entire body weight. A goal chart was essential at this point to get myself through the next few weeks in hospital. After practicing all weekend with my physiotherapist brother I was able to surprise the medical team and physiotherapists when I finally walked down the corridor unassisted and subsequently out of the front door with my discharge papers. Freedom!

The final adventure Clive was going to take me on was that of rehabilitation. A time of naps, exhaustion after walking 100 metres, the return of the “cotton wool brain” and the need for intense concentration in order to put a sentence together. Any increase in pressure led to a “headquake” feeling, as if the bones were like tectonic plates grating together, making sneezing an undesirable activity. The frustrations of not being able to do what I used to do such as running and reading were difficult. Neuro recovery seems to take you forward for a few days and then backwards in huge steps the next. However with time, patience, perseverance and kindness, I have passed milestones in these last 6 months of rehabilitation and every day feeling a little step closer to my old (now Clive less) self.

This has been the easy part, telling you my story. What I really want to talk about are the lessons that I’ve learnt, in the hope that any one of them may be useful for both Cavernoma patients and relatives.

  • Lesson 1: ‘Clive the Cavernoma’. Naming it sounds like an odd thing to do but it worked wonders as a coping mechanism. It’s an odd feeling knowing that there’s something there in your brain that you have no control over, but giving that thing a name, something that you can refer to or express emotions at, made acceptance that much easier.

  • Lesson 2: My stroke…The hidden injury. Post Op I remember getting onto a crowded bus and thinking how on earth do I get a seat? To strangers I looked pretty normal. When really even balancing for a few seconds was exhausting. Unlike broken bones, brain injury is hidden from sight, secretly causing mischief to the way the body functions. Reminding yourself and everyone else around you is a key step to recovery and how you get that seat on a bus.

  • Lesson 3: That epic goal chart. Post injury or post-op…goals are the way to keep yourself looking forward. From showering independently to running that 10km 9 months later, each goal is no less greater than the other.

  • Lesson 4: Feel the sand beneath your toes and swim the ocean blue. After ending up with right leg sensory loss, I found that contact with sand and water was a great way to send feedback to the brain. Walking on sand is perfect for testing your balance too whilst water helps to awaken those lazy muscles and rejuvenate those lost neuro-connections. Shallow end first!

  • Lesson 5: Rehabilitate…’Pilates is gaining the mastery of your mind over the complete control of your body’ Joseph Pilates. With weekly Pilates sessions, I re-gained coordination, proprioception and strength that I had lost from having brain surgery.

  • Lesson 6: Sleepyhead. Brains need naps post injury. Others areas of the brain are now having to take over the job of the area that’s injured, an exhausting business. Fatigue has been my greatest nemesis and I find that when I overdo it, the neurological deficits get worse. Listening to your body is essential for recovery and the all-important little nana naps throughout the day will help the brain re-charge.

  • Lesson 7: Love your brain. Care for it, feed it, listen to it; don’t let it trick you into thinking you can undertake a multiple of tasks…oh whilst learning how to walk again. Time, rest, gentle exercise and a good diet is what the brain needs to recover and keep it healthy. The best advice I was given was this…”Don’t forget, the brain takes longer than a broken leg to heal”.

  • Lesson 8: I have a hole in my brain…The greatness of neuroplasticity. Some other wonderful neurons in my brain are now doing some weight lifting and have taken on jobs that the injured part can no longer do. 6 months post-op, I can walk, run (sort of) and almost balance on one leg. Neuro rehab is not an easy path and as a patient you take your friends and family along this rocky path with you. With all injuries and illnesses it’s mentally and emotionally exhausting for everyone involved, but the most important thing I’ve learned is to share the experience. Which helps, when you can’t quite function on those brain exhaustion days, to know that your people are right here with you. Don’t be hard on yourself, push yourself, but not too much and as always #loveyourbrain.

Katy on a boat, 2017

Austen, Kent

I was a busy school teacher, not long in a new job, marking test papers one evening in May 2014, when my left arm grew weak. I was sat down at home and put it down to muscle tiredness so simply took myself off to bed. The following morning I could not use my left hand at all to button a shirt for work, so walked myself to the nearest A&E. I think the receptionist had a good idea of my symptoms, because within minutes I had my first ever brain scan and was lying on a hospital trolley to be told that I had suffered a stroke. The words were unimaginable to me; I was a keen runner and cyclist with good diet and tea-total lifestyle. Utter shock and disbelief rushed at me in equal measure as I considered letting everyone down at my school that day.

The doctors began studying my right parietal intracerebral haemorrhage, but it was only after being ambulanced to King’s College in London that the cavernoma was suspected. I had never heard of this word before, like most sufferers. There were a few days of debating, then discharge home, before an MRI in July showed a cavernoma to be the cause. Situated in an eloquent location of the brain (pre-central gurus adjacent to motor hand area) this explained my first symptoms of left arm weakness. 2 seizures in hospital saw the prescription of Keppra, again a drug I had never heard of but one I have been taking ever since. I recovered after weeks of rolling playdough and learning how to place a cup on a target with my left hand, then let go again. Falling just before the summer break, I was back at work the next September, business as usual with all the strains of 30 seven year olds in a classroom, slightly adjusted in confidence but with every good intention of getting on with my life again.

The year went well until 10th July 2015 when I experienced a slight loss of sensation over a few days but in my left leg this time , that caused me to slightly lack balance on my bike ride to work but was nothing like my first bleed the year before. So here I was back in hospital, faced again with the return of my symptomatic cavernoma.

Two years ago, the thought of brain surgery would make me panic, and the location of my cavernoma in an eloquent brain area made the decision harder, but I decided to face the storm instead of living life fearing its return. Therefore, after much discussion with my fantastic consultant and team at King’s, (2 bleeds within 18 months made the decision for surgery easier because risk of further bleeds earlier on in the life of a symptomatic cavernoma is significant) I made up my mind for surgical excision. There followed other scans for intra-operative guidance, one being passing small electric charges through my brain to make my left side move so that the surgeon could plan his road map in and out, then on the 9th November I had attempted removal surgery. However, after approximately 6 hours, the surgery was unsuccessful due to position and potential effect of paralysis upon my left side, so I was awoken with this news and left feeling very confused. However, I had faced a fear and done all I could to live life without a cavernoma.

So where does this leave me today? I must recommend Caver Buddies; I made a wonderful friend in Scotland (via the Facebook group) who explained the process of surgery to me and really helped me through my questions over the phone. I have also attended some amazing lectures at the annual forum in London, meeting new members of the Alliance and sharing my story. As I write, I am back at work and have lived symptom free for over a year now. Also, having run marathons previously, the doctors advised me not to try one just yet (avoid dehydration) but I trained for a half marathon in October this year and ran my fastest time ever! Well, they did advise me to get on with my life! I believe that running is so good for getting my blood pumping around my brain, giving me an excuse to really work my left-sided limbs and has helped me forget about the cavernoma for a while
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So the dilemma remains – do you wait for another bleed and never do things you love doing, allowing the cavernoma to define you, or take the doctor’s advice and grab each day, live it healthily and to the full because the cavernoma may never reveal itself again? I have chosen the latter, but would not have got to this point without my friends and advisors in the Cavernoma Alliance, for whom I and my family are so grateful. One day, I will run a marathon for them.

11th International Cavernoma Alliance UK Forum (2017)

CAUK Members at lunchtime, Annual CAUK Forum, London, 2016

CAUK Members at lunchtime, Annual CAUK Forum, London, 2016

Please forgive this early announcement but CAUK will be trying something new next year. Our 11th International Cavernoma Alliance UK Forum is to be held for the first time away from London and in the north of England at the University of York. This will be an opportunity to especially benefit members in the north. For those who wish to attend from the south, fast trains from London to York take less than 2 hours.

Everyone is welcome, and as always, this event is free of charge – including lunch – and we would like you all to save the date, Saturday 24 June 2017.

The Forum will be held at the University’s prestigious Ron Cooke Hub (Lakeside Room) and will include Dr Connie Lee, President, Angioma Alliance USA, Dr Jenny Thomson geneticist, Chapel Allerton Hospital, Leeds and Mr Nitin Mukerji, neurosurgeon, James Cook University Hospital, Middlesbrough.

Campus accommodation will be available at Franklin House, on a first-come-first-served basis. This is a bed and breakfast service; both single and double rooms are en-suite and we have arranged a CAUK supper on Friday evening for those who arrive in York on Friday.

Accommodation can also be booked for the Saturday evening, 24 June 2017, so members can attend the CaverMorning which takes place at the Priory Street Centre in the middle of York, Sunday 25 June 9.30-1.30pm. This will be an informal time with a few fun workshops including one on drumming. There will be ample time for participants to attend the Jorvik Centre, the Minster, the Railway Museum etc.

Whilst the days are free, accommodation and an evening meal the night before (Friday 23 June 2017), are chargeable as is the accommodation for Saturday night. Accommodation rates include breakfast and VAT: £52.80 single; £90 double. (£20 per person for the Friday evening meal). The university has limited availability so visit the payment page and reserve with your credit card as soon as possible. Please note there is abundant parking (free after 6pm and all day at the weekends) and a free regular campus bus service to the venue from Franklin House.

When the accommodation becomes full at Franklin House, members can stay at either at the nearby Travelodge, Hull Road, York, or in the city centre a short bus journey away where accommodation can also be found at the Premier Inn, Blossom Street and at the Bar Convent both of which are just five minutes walk from the train station. (Please go to their websites for pricing and availability.) At this point, flexible rates (which allow for amendments/refunds) are extremely reasonable. As the event gets closer, accommodation will command a higher price if it’s available at all.

You can now book a place at the CAUK 2017 Forum here, and the CaverMorning.

Team Squalo, Crossing the Sicilian Channel

Team Squalo

Team Squalo

In July 2016, Team Squalo, undertook the amazing feat of swimming the Sicilian channel raising an incredible £2000 for CAUK, completely smashing the original £800 target! Team members consisted of Florent, Marco, Maurizio, Marc, Clement, and Federico.  Congratulations and a big thank you to Team Squalo. 

 

Annabel, Hertfordshire

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Jasper’s symptoms began in late 2008.  Initially we were completely unaware of what we were dealing with, despite his younger cousin having had emergency surgery to save his life from a brain-stem bleed.  At the time, we were not aware of the familial form of cavernomas, and Jasper’s symptoms were vague to begin with – a ‘tingly eye’, and a ‘weird feeling’ in his throat.  As his symptoms grew we managed to video an episode and my GP swiftly referred us to the John Radcliffe hospital.  Jasper was scheduled for an MRI in March 2009, and we were given the results immediately, confirming that Jasper had several cavernomas, in particular a 4.5cm one in his right temporal lobe, which they suspected was causing his seizures.  His seizures continued to worsen, culminating in a trip to A&E after a prolonged episode of vomiting and facial palsy.  He was transferred to the Radcliffe and monitored, at which point we decided surgery was our best option.img_7622

Jasper had surgery in September 2009 at the Radcliffe.  Within a week he was discharged and after a short spell of home-schooling, was back at school after the October half term.  He had a few seizure episodes in the first few weeks after his operation, but these decreased significantly within a few months.  He continued with his medication (Keppra) for about a year.img_7621

Next weekend marks 7 years since Jasper’s surgery. Now he is studying for his GCSE’s and will be heading to Borneo next summer to take part in a 3 week World Challenge.  He remains seizure-free and medication-free.  He has decided himself that he doesn’t wish to have regular scans, and we see the neurosurgeon every 2 years.  He is a bright, thoughtful, inquisitive young man who hopes to work in the film industry and apart from his scar, mostly hidden by his hair, it would be impossible to tell that he has had any health issues, let alone brain surgery.

Meanwhile, his 12 year old sister is currently on the waiting list at GOSH for surgery to remove a cavernoma from her left temporal lobe.

CaverFamilies 4th Residential Weekend

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With thanks to a grant from Children in Need, CAUK were able to provide ten families a weekend at a tipi and yurt farm in Hereford. On Friday 22 July 52 members, children and volunteers arrived at Woodlands tipis and yurts for the 4th CaverFamilies Residential Weekend. The weekend was jam packed with various activities for the children, design a Christmas Card, magic show, pottery painting, pizza making, design a t-shirt, farm trip, football, a pamper evening, and everyone enjoyed toasting marshmallows and plenty of outdoor playtime! Parents were able to relax and enjoy watching their children play in a safe and fun environment while sharing a mutual understanding of having a child/ren with cavernoma. On Saturday afternoon parents were invited to a mindfulness session, which many found useful, while the children were entertained. On Monday morning breakfast was served and goodbyes were made, many thanking CAUK for the fantastic experience. One child said that “this was his best holiday EVER”. The children were each given a CaverBear and craft tube, the parents were given a CAUK stress brain. Every family returned a feedback sheet with many positive comments. Thank you to everyone who came and hope to see you all next year, plus some new families!

Special thanks to those that volunteered their time to make this weekend a success, Simona Stankovska, Steve Seymour, Ellie Stankovska, Laura Seymour and Lucy Yeomans. Your help and support was invaluable.

For a full report on the weekend click here.

Lisa’s story

Lisa, from Accrington

Lisa, Accrington

I was first diagnosed with a Pontine Cavernoma, May Bank Holiday weekend back in 2008 (aged 23).

Previous to the diagnosis, I had been very stressed and had just completed my degree, I was also working three jobs.

I had experienced symptoms for around five days or so prior to my diagnosis, ranging from fatigue, dizziness, back ache, numbness in my left side of the body and right side of the face.  My temperature perception had changed also.
I had been to see my GP who said I may have Labrynthitis?  I then went to the A&E at Royal Blackburn Hospital the following day as my symptoms were becoming more prominent.  I was told that I may have an inner ear infection and to put olive oil in my ear and take paracetamol?  The next day, I went back to A&E again and was almost sent home – yet again.  My eye and mouth had drooped to one sider and was admitted for an MRI scan which later found the cause of the problems.  I was in the Royal Preston hospital for around 2 weeks and it took me a further 12 week to recover.

I was referred to Sheffield Hallam (Sept 2008) to see if I was a suitable candidate for Gamma Knife Surgery.  I was, but declined any treatment and stuck by the wait and see approach.  I continued to have annual MRI scans for the next four years.

Following my annual MRI scans, my lesion had increased in size and I was then re-referred back to Sheffield for the GK treatment.  I also found out that I have had a couple of smaller bleeds too between my last scan which i was unaware of?  I had the GK treatment in October 2012 at the BMI Thornbury Hospital.

Having Gamma Knife Treatment

January 2013, just as I was about to take a secondment to a different team within the NHS, I had another big bleed – right-side cerebellar peduncle bleed in the Pons.  This bleed was the worst and I was off work until the end of April.  I had a lot more symptoms this time too and it took over two years to feel somewhat ‘normal’.

I still have some numbness/altered sensation in my left leg but everything else has pretty much recovered physically.  I do suffer with health anxiety but try and manage this the best I can.  I work full time and drive too which I am grateful for and glad that wasn’t taken away from me.

I changed neurosurgeon in 2013 to Mr. Neil Kitchen at Queen Square due to him being ‘the best’ with regards to understanding and management of my condition.  I was discharged from him January 2015 and no longer need any more scans unless I have any symptoms again – hopefully not 🙂

In April 2010, I participated in a New Beetle rally, driving from Lands End to John O’Groats over 5 days, raising around £800 for CAUK.

New beetle Rally - Lands End to John O'Groats.