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 also for individual workshops (Session 1 or Session 2) 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.

Kate, Hertfordshire

My Story

I wanted to share my story to hopefully give some comfort to others who have recently been diagnosed with cavernoma, I vividly remember the fear and confusion in the weeks and months after my diagnosis.

My first symptoms began in May 2015, at the time I was 5 months pregnant with twins.  I had a constant tingling in my right hand which was very slowly getting worse, but had been going on for a few weeks. The doctor thought it was probably carpal tunnel syndrome as this is a fairly common pregnancy side effect. Within another week the tingling had got stronger and my right cheek was now burning and my tongue felt strange.  Again, the doctors and midwives thought it may just be pregnancy related, there are more side effects with twins and my son was sitting very low on the right hand (affected side) so we thought maybe he was pressing on a nerve.

The next event was that I started very slightly losing balance to the right, it was all very subtle but it had happened a few times. My mum always worries (thankfully!) so when I told her I was now off balance too she insisted we went to A & E. My doctor had referred me to a neurologist but that appointment wasn’t until September!

I had a fantastic A & E doctor examine me that day and he wasn’t giving up until he found the cause. After hours of examinations and tests he sent me for an MRI. This was very worrying as I had a large bump at this point and was concerned about side effects for the babies.

After waiting several hours waiting for the results the doctor came back and pulled the curtains around the bed, I thought then that this must be serious… He explained that I had a brainstem cavernoma, had likely been there all my life, and had recently had a medium/ large bleed.

It is difficult to say that my pregnancy definitely led to the bleed, but to me it seems likely. I have always been slim and had suddenly gained a lot of weight, the blood flow increases greatly during pregnancy and to top it off I had been prescribed Aspirin to help prevent pre-eclampsia. I have also read that the changing hormones experienced during pregnancy can be a factor, although this is still debatable.

When you are first diagnosed it is tempting to compare your symptoms with others, what I have learned is that we are all very different and a bleed in the brainstem that is a fraction of a millimetre different from someone else’s can give very different symptoms.

The next decision was a very difficult one, should we go with an early delivery for the twins in case I had another bleed? But without the babies needing breathing (and other) support due to prematurity. It was eventually decided I should have a Caesarean at 34 weeks gestation. I had to have a general anaesthetic as the doctors were concerned that if I had an epidural it would change the pressure in my spinal column and possibly affect the cavernoma.

Kate, Hertfordshire

Kate, Hertfordshire

All went well with the delivery, although I was petrified going down for the general. The twins were born weighing 4.4lb and 4.8lb which is pretty good for 34 weeks. They only had to spend two weeks in The Special Care unit being monitored.

My symptoms got quite a bit worse in the months afterwards. My whole right side was affected from tip to toe. I had a very thick tongue which lead to slurred speech, tingling and burning in my cheek . I lost the use of my right hand so couldn’t use cutlery, write or even safely hold the babies. My right arm felt very heavy and weak at the same time, my right leg and foot was also heavy and I walked with a pronounced limp for many months.  My eyes were affected and would feel dizzy watching anything moving quickly on the TV or when in the car. The strange thing was throughout the whole thing I never had a headache which I believe is quite a common symptom.

I had MRI scans every three months initially, now they are yearly. The neurosurgeon didn’t think I’d had a further bleed and that it is often the case that symptoms get worse before they get better.

At the time with the fear and confusion it is easy to attribute everything to the bleed. One morning after a shower I started shaking violently and nearly collapsed. That turned out to be severe Anaemia due to blood loss after my caesarean.

Very slowly things start to improve. I walked for miles with the babies in the pushchair and the dog, I had physio which definitely helped although the neurosurgeons didn’t think it would be that beneficial, it definitely helped me.

Now, 16 months on, I am much improved. My remaining symptoms are; a slightly numb right hand that is slower than it used to be, I sometimes struggle with tasks that require dexterity. But, thankfully I can now write and do everything that I need to do which is a huge relief. My other symptoms come and go and occasionally I get a slightly heavy leg and numb feeling in the ball of my foot.

For me the hardest thing is coping with the worry, that constant assessment of my symptoms and wondering ‘is that a new or an old feeling’.

I have had acupuncture to ease the symptoms and relax me which helped with my sleeplessness. One of the most useful things I did was enrolling on a mindfulness course which helps you to live in the moment and not dwell on the past or worry about the future.

It was decided that due to the location of the cavernoma in the brainstem it is probably better to monitor it rather than operate. I went to Cavernoma Alliance’s UK’s CaverHub  with Dr Paul Jarman and concluded that I had made the right decision for now which is to ‘watch and wait’ rather than have intrusive surgery. All cases are of course different.

I wish you all the best of luck on this journey and thank the Cavernoma Alliance UK for all their work and support.

Kate

Editor’s Note

Prior to her diagnosis Kate was a commercial airline pilot. Kate is attempting to get her licence back.

 

 

Jill, Worcester

 

Jill, Worcester

Jill, Worcester

I was diagnosed with a cavernoma in October last year, after first displaying symptoms. Following a CT and MRI scan, it was eventually diagnosed as a small cavernoma. The consultant’s opinion was to monitor conservatively and have an MRI x 6 monthly. My most recent appointment in July showed some shrinkage of the cavernoma, which I understand is unusual. My consultant now thinks it may be a small AVM. It was explained to me that this may be possible to treat with radiotherapy/Gamma knife.

 

My consultant has recently had a meeting with his team to discuss a treatment plan, beginning with an angiogram to clarify the situation. I am currently waiting for further information.

 

 

 

 

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