The CaverChat facility of our website will be closing from today, 17th September 2018, due mainly to lack of use. The majority of our members have chosen to use the facebook groups to communicate and so we highly recommend people visit those groups instead.
We are delighted to announce the appointment of Helen Evans as our new Chief Executive. Helen brings a wealth of relevant skills and experience that we are confident will take CAUK through to its third phase of development, building on the success of our Big Lottery funded Big Step project. Until recently Helen was Chief Executive of Getting Heard, an Oxfordshire based advocacy charity. Under her leadership the charity was awarded the prestigious Quality Performance Mark, secured multi-year Big Lottery funding and was one of the first providers of Care Act advocacy in the UK.
Before working in the UK charity sector Helen was Head of Safeguarding for a global aid agency, having transitioned from an earlier 10 year career in international Human Resources. Helen is also an alum of the Jo Cox Women in Leadership Programme and former select committee expert witness. Helen will start on the 17th September 2018 and will be home-based, travelling as needed, working from 9.30am to 2.30pm every day except Monday.
You can view Helen’s introduction video by clicking here
Helen Evans, new Chief Executive says:
“I am delighted to be joining CAUK and to have the opportunity to take CAUK forward in its third phase of development, building on the success of the Big Lottery funded Big Step project. The work that CAUK leads is critical to meeting the needs of those impacted by cavernoma, and I very much appreciate the opportunity to be a part of this.
On starting at CAUK I anticipate my priorities being twofold: to meet, listen and respond to the needs of the CaverCommunity; and to also lead fundraising efforts ensuring the continuation of activities funded until September 2018 by the Big Lottery. Whilst I don’t have personal experience of cavernoma, I do know what it’s like living in a family impacted by long-term ill-health. I will be coming to this role with the passion of someone who knows first-hand what a difference a charity like CAUK can make, and will be drawing on my experience as a former Chief Executive to ensure CAUK continues building on its successes to date.
May I take this opportunity to acknowledge and thank your Chair of Trustees, Dr David White, who will shortly be taking a well-deserved step back from his role as Chair. I am also thankful to CAUK’s founder, Dr Ian Stuart, without whom this charity would not have been established and who will continue to be our Co-Ordinator. I am very excited to have the opportunity to work for CAUK and look forward to getting to know you all come mid-September”.
Dr David White, Chair of Trustees says:
I am thrilled with the appointment of Helen as the first Chief Executive of Cavernoma Alliance UK. Helen’s experience in the charity sector, both large and small, provides a wonderful background for us as we move into a new phase in our existence.
Dr Ian Stuart, Founder and Co-Ordinator says:
I am very excited at Helen’s appointment, and I looking forward immensely to working with her. She will enable us to move forward with confidence at an exciting time for supporting our greatly increasing membership and the development of new forms of therapy.
The Board of Trustees will be overseeing Helen’s induction and will ensure she has as many opportunities as possible to meet with cavernoma members, within the 18 hours per week her role permits. As discussed at our Annual General Meeting our Big Lottery funding ends this September, meaning one of Helen’s key priorities will be securing alternative funding as well as getting to meet CAUK members. If anyone has any questions or comments about Helen’s appointment please do not hesitate to get in touch.
You are cordially invited to
THE CAVERNOMA ALLIANCE UK SUMMER PARTY
Saturday 28th July: 6-9 pm
Hurcott Hall, Worcestershire, DY10 3PH
We know you’ve all been requesting a CAUK informal members get-together/celebration, and we’ve listened! We’d like to invite you to CAUK’s first Summer Party! There will be food, drink, music, and plenty of opportunity to meet with other members and talk.
We have limited placed available, so please get your RSVP in quickly.
We do have a small welfare fund available for those of you who may be struggling with finances, so you can apply for help with your travel should you need it. We will also have discounted hotel rooms locally, should anyone want to stay the night and not travel back late. Do get in touch if you’re in need of a hotel and we’ll let you know the price. We hope you’re as excited as we are! We look forward to hopefully seeing you there!
Please let us know any dietary requirements.
The Trustees of Cavernoma Alliance UK (CAUK) are pleased to invite you to attend the 12th Annual International Forum to be held at the Nowgen Centre, Manchester on Saturday 2 June 2018, 9.15am to 5pm. This year we are particularly honoured to be working in partnership with the CAUK CaverFamilies and the Royal Manchester Children’s Hospital.
As always the Forum on Saturday will be free to all registered participants. The day begins at 9.15 with registration followed by a welcome from Ian Stuart, Founder Member and Co-ordinator. This year’s speakers will be Dr Ronan Burke, neuro-psychologist from The National Hospital for Neurology and Neurosurgery and Dr Ed Smith, The R. Michael Scott Chair in Neurosurgery, Co-Director, Cerebrovascular Surgery and Interventions Centre, Director, Paediatric Cerebrovascular Surgery, Department of Neurosurgery/Vascular Biology Program, Children’s Hospital Boston/Harvard Medical School who will speak about advances in cavernoma treatment. Following their talks will be an AGM and recognition of Dr David White’s retirement as chair of the trustees. Lunch will be served after which there will be a panel presentation by amongst others Drs Grace Vassallo, Dipak Ram, (neurologists), Stewart Rust (neuro-psychologist), Emma Dewhurst (Trainee Advanced Paediatric Nurse Practitioner for Neurosciences), Rebecca Keeping (holistic care in the community), Sofia Douzgou (geneticist) and Emma Tait (member).
A new format for 2018 will follow as the speaker’s break into a series of informal pods at specific locations throughout the Nowgen Centre in which members will be able to participate in.Tea and coffee stations will be available at each of these pods.The day will finish at 5pm.
Cavernoma Alliance UK’s “Landscape of the Mind” art sale, bringing together the work of international artists of all disciplines, has been running since 12 March 2018 to coincide with Brain Awareness Week 2018. It looks to raise awareness of cavernoma, as well as funds to support members of the charity. All art work is being sold anonymously, and at a fixed price of £75 – making art affordable for everyone!
To view pieces on sale, please visit; https://art.cavernoma.org.uk/
We’re happy to announce that Ailsa Crowe will be joining the CAUK team as our new Northern Community Worker.
In her own words, a brief biography
Hi all! I’m Ailsa
I’m 27 years old from Glasgow and your new Northern Community Worker! Two years ago in October I was diagnosed with a right thalamic Cavernoma after suffering a bleed whilst living and working abroad. I moved back to the U.K. to get the help and support I needed and have spent the time adjusting to my new normal. I have found CAUK to be an incredible source of information and support since day one and am delighted to have the chance to contribute to something that means so much to so many of us!
A little bit about me… I have a Masters degree in Logistics, I have lived and worked in 6 different countries and speak fluent Spanish! I love to travel and to read, and sport (especially tennis) has been a huge part of my life. I’m hoping to get back on the court one day soon! I’m an outgoing, sociable person and I’m looking forward to meeting and/or speaking with all of you ‘Northerners’ soon!
I’m sure you’ll all join us in welcome Ailsa to the team – if you’d like to contact Ailsa, you can contact her via her email address firstname.lastname@example.org
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
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.
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.
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.
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
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.
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.