Patient Stories

Their lived experiences of cavernoma

"One day you will tell your story of how you've overcome what you are going through now and it will become part of someone else's survival guide"

Jean's Story

Where Jean’s story begins

My name is Jean, I’m from Dublin and I’m 53 years old. Ten years ago, I experienced weird symptoms where my hearing went funny; I could hear noise but couldn’t decipher the sound. My GP sent me for a scan and they diagnosed a cavernoma (a cluster of abnormal blood vessels) which had bled. My balance became very bad and I couldn’t stand if I closed my eyes. I was admitted to hospital and stayed for a week. Life continued on with symptoms returning to normality and I forgot I even had a brain condition, except for the regular MRI scans twice a year.

In October 2022, walking became difficult, so I went to A&E and was taken in with a much more severe hemorrhage. I initially felt okay and was shocked when the neurosurgeon spoke of an operation, but as the days passed it dawned on me how critical my situation was. After l was fasted for surgery, their plan changed, and they put me on strong steroids, before sending me home one week later.

Experiencing complications

They told me about brain fatigue but I’m not sure I understood at the time what that even meant. In my mind it didn’t sound too bad, but the reality was that it was terrible. After a day of being home from hospital, I began to understand. It felt like I only had 2% battery left; I slept so much on the sofa and everything took supreme effort, even small things like boiling the kettle. I also fell asleep mid conversation when friends and family called to see me.

After a week at home, I was re-admitted to hospital by ambulance - all my vital signs were bad. I started to get hallucinations from the steroids. One memorable one was when an eagle flew across the ceiling. The other horrible thing that happened was that after two weeks on steroids I was unrecognisable. Even my Face ID on my phone didn’t recognise me. They call this ‘moon face’. I stayed in the hospital for another week and when I came home, I spent two months on the sofa. Slowly, very slowly, my brain started returning to normal. It was decided that an operation would be too risky for me, as the cavernoma is in my thalamus region and close to my brain stem. The alternative treatment that was decided was radiation. I was very frightened of undergoing radiation, but I had the treatment in February 2023. My brain felt woolly and my perception was skewed; it was like my world view had tilted and everything was running down to the left. The scariest thing was at night-time. I didn’t think I would wake up in the morning, so I wrote letters to my children and family.

Reflecting on my mental health

Ultimately, I found being sick with my brain a very isolating experience. I struggled to explain how I felt as it was all new to me. I didn’t want to tell my family how scared I was, and I tried very hard to put on a brave face. My daughter’s 21st birthday was during this time I was taking the steroids. We had been so excited for it-a party had been organized at a venue. I was so sick that I couldn’t attend. I cried my heart out as pictures came in on my phone of the evening.

I also experienced a loss in confidence. I was afraid I could fall easily, and I was worried that my right hand would shake or that I would look weird walking, so I found myself pulling away from people. Throughout it all, my children were amazing: I could talk openly and honestly with them, and I also had great friends who built up my confidence and listened to me.

Ongoing struggles

Since the radiation, my walking has only slightly improved. It’s mainly my right foot that won’t perform: I drag it a lot. Before all of this, I was very fit during COVID-19. Back then, I ran 5k a day, and now I struggle to walk my dog. I also loved fashion and shoes, but since my walking issues I can only wear running trainers. It’s frustrating and I get mad at myself a lot, but I’m told there’s still some swelling from radiation.

What has helped me move forward

I retained my sense of humour as I had to wear a mask during radiation. This was specifically made for my face and head to keep me still during radiation. Afterwards, I turned it into a plant holder, and it takes pride of place on my wall in my back garden. I’ve been told by the doctors that I’m lucky to be alive and honestly this has changed my perspective on living. I love life and I’m truly delighted to be alive. I have the best family, such good girlfriends, and a wonderful boyfriend who I had only met just before all of this happened.

I am still me

My journey through this was frightening and sometimes lonely. I often felt I had lost who I was and would never be the same again. I realized that I am the same, but with a wealth of knowledge and an understanding of how strong I truly am. Some days were just putting one foot in front of the other, but slowly I came back to me.

Jac's Story

My name is Jac Sinnott and I am 41.

My cavernoma was located near my thalamus. I was diagnosed in July 2021 after hospitalisation following a bleed.

I presented myself to hospital with persistent symptoms which a couple of different GP practices said were migraines.

Initially, my local hospital didn't know what was causing my symptoms and it took a long time to get answers, especially as we were still in lockdown due to the pandemic.

My most recent symptoms appeared in late June 2021 and they presented as pins and needles down my left side as well as weakness and numbness on that side. I also had visual disturbances. Each episode would last for 30 minutes to an hour. In retrospect I then started to realise there were other events in previous years which could be put down to the cavernoma.

As far back as 2009, I had a few instances of vision loss for up to an hour, fainting episodes and blurred vision at the time these were all classed as ocular migraines and no problems could be found with my vision. No neurological investigations ever happened until 2021.

I attended 2 different hospitals before I was eventually seen by Professor Javadpour in Beaumont Hospital. Prof was the one to diagnose cavernoma and prescribed Keppra right away.

It was decided that they would adopt a watch and wait approach and at the time I was happy
with this given the risks of surgery (complete disability of my left side and blindness). However I was again hospitalised in November 2021 following another bleed. This time, it was decided that I would be transferred to Beaumont by ambulance as soon as a bed was available.

Again, the health system was in crisis due to covid and as I sat waiting for a further 10 days, I discharged myself to go home to my family. The ward I was on now had covid in it and Beaumont had the highest number of cases in Ireland at that time.

I really wanted the surgery to happen at this point as it was clear my symptoms were worsening and the cavernoma was wreaking havoc on my day to day life.

At 4.5cm x 3cm, it was sizeable and it was resting on my optic nerve and also causing motor sensory issues. During that hospital stay my eyesight deteriorated further which is what prompted me to decide to have the surgery. The damage was done but I wanted to limit any further damage.

Once I had discharged myself I then had to be an advocate for my health. I spent months and months chasing the hospital to follow up on my care and to commit to a date for my surgery. Many times I was advised that there were patients worse off than me who were on waiting lists for up to 2 years. It was incredibly difficult to be in this fight or fight stage waiting for another episode to happen or indeed a catastrophic event to take place. All of this whilst still making daily phone calls effectively begging for a
place on the waiting list. My medication dosage had been increased twice without ever having seen my team in person.

Almost exactly a year after my first hospitalisation, I had a brief loss of consciousness while driving and totalled my car. Again my medication was increased as the consultant suspected the loss was an absence seizure. Again my symptoms were worsening and increasing with still no date for surgery decided.
I told my story on local and national radio and a couple of weeks later my surgery was booked for November 2022.

It had taken me so long and I had practically fought for the surgery to happen, I had never even given any real thought to the surgery itself. I went into Beaumont the evening before surgery and was expecting to be brought to theatre around midday the next day. Prof came around early the next morning and informed me I would be first up, within the hour. This was a blessing as I had no time to be scared or nervous about the
impending brain surgery!

My team were all incredibly nice and I was looked after so well. I was given every reassurance beforehand and as they were prepping me, that this was the best decision for me and Prof was confident he could get the whole raspberry out. They explained a little bit about where the incision would be - just to the front of my ear and along the top right they would peel my scalp forward to access the area. It was quite deep. The surgery I believe took around 6 hours.

I remember nothing of the hours after surgery but I have been told I was making jokes in the recovery room.

I was in the high dependency unit for around 12 hours and then moved to a ward. I was quite groggy and sleepy but found it difficult to sleep with the incision and also the catheter was very irritating. Pain was manageable by staying on top of the meds. My face and eyes were quite swollen and tender for at least a week or 2.

The recovery process for me is still ongoing. I had my surgery in winter which really allowed me to stay Home and get a lot of rest. The fatigue is absolutely the hardest part of a brain condition and surgery. It is unrelenting in the initial recovery days and very hard to predict. It was very hard to be around more than a couple of people at a time. I was, and still am, prone to sensory overload and being over stimulated if there is too much competing noise. This is something that I manage now with ear plugs and taking myself to a quiet place if I need space. I still regularly need a nap in the afternoon or else my body and brain go into complete shut down. I am used to do this now but it was quite hard to accept not being able to do the same things I once was. Now I don't try to accept it, rather I acknowledge it and how I'm feeling too.

When preparing for cavernoma surgery try to get yourself and your loved ones prepared for the realities of the days after surgery. If you have children, mine were 8 and 5 when I had surgery, talk to them about what is happening. Explain that you won't be available to be with them as much as you usually are and how important it is for you to rest. Delegate as much as possible like school run etc

and make sure there is always someone looking after you once you get home. Bringing meals and meds and being there as someone to cry on.

I was completely unprepared for the hugely emotional upheaval of the surgery. And probably from being in the state of limbo for 2 years. I cried a lot, with gratitude for the surgery having gone well and for the miracle that I was alive and healthy after it. But also because it was a hugely traumatising couple of years for me and my family. I am still working my way through that.

Unfortunately i have been left with permanent deficits from my symptomatic cavernoma. I have dysesthesia along my left side from the nerve damage sustained and also I have a profound visual impairment and am legally blind.

Nothing could have prepared me for the change this has made to my life but I do wish the health system offered some guidance on rehabilitation beyond the physical. Again this is something I looked into myself in the last few months and engaged the help of the Vision Ireland, who provided me with therapy related to my visual impairment and in processing the events of the last couple of years.

Be prepared to cope with a lot of emotional healing as well as physical. Don't push yourself too hard and try to be extra gentle on yourself as you recover. Recovery is not linear, I've been in a cycle of 1 step forward, 2 steps back since my surgery and knowing this is completely normal had reassured me enormously.

In my hospital bag I packed nutritious snacks, comfortable tops that buttoned open so as not to hurt the
incision. Maybe some books/audiobooks/something to watch but don't be surprised if you can only just manage to stare into space whilst in hospital.

I've learned that I am my best advocate and to listen to My body. I knew for a long time that something wasn't right and I knew my body better than anyone else. I learned to keep asking questions and always get a 2nd opinion.

I have learned my limits and how to really slow down and do things that bring joy. Being happy with
your loved ones, and being grateful for tiny pockets of happiness is the greatest gift you can give yourself. Gratitude can really help with recovery too

I'm doing really well now. I train regularly at home

to improve my strength and I'm quite active generally.

I get bouts of fatigue but I think that may be just general life tiredness.

Charlotte's Story

A cavernoma is a capillary that is particularly bad at doing its job, and it looks like a raspberry or popcorn on an MRI scan. It can leak blood into the surrounding tissue and can occur throughout the body usually with very little issues. Even when they occur in your brain they often cause little trouble, with many people having a ‘raspberry’ in there that behaves itself for their entire life.

There is a genetic version that is the rare disease and people with the genetic mutation often have multiple, even hundreds of cavernomas throughout their brain and spinal cord.

It is extremely rare for cavernomas to bleed. However, I have had the luck/joy of having my brainstem cavernoma bleed 3 times. I had my first symptoms of numbness in the left side of my face at the end of 2018. A month of this and I eventually see my GP who sends me off to A&E. After the CT showed nothing obvious, I went on my month-long trip to the US. I came back to an MRI and my first neurology appointment.

When the neurologist told me there was a reason for the symptoms I was delighted. I wasn’t crazy or imaging things up because of stress! I was told they weren’t exactly sure what it was but it was likely a venous malformation. Another scan was organised, and a referral sent to the neurosurgeon.

I met my neurologist again in March and told to not worry, it was probably a cavernoma, but the surgeon could answer more questions in May.

However before I could get to that appointment in April, I began to feel dizzy, nauseous and had trouble walking straight. I had the worst headache I had ever had and I ended up back in A&E. Eventually a scan was done that showed I was having a bleed. I spent a miserable Easter weekend curled up in bed, sleeping and trying not to puke. I was eventually started on steroids and slowly got better. I spent a total of 4 weeks there before being moved to a rehabilitation hospital for 5 weeks of learning my balance again, readjusting to my constant nausea and recovering.

I met my surgeon who told me that because my cavernoma was on my brainstem he would only ever consider surgery to remove it if I had had multiple bleeds in a year that had left me pretty badly off. I managed to sit my final exams over the summer and graduated college with my friends in September. I went back to work and had multiple check ups and just got back to life.

Shortly after Christmas I began to feel unwell again and I went to my GP. The GP managed to get in contact with my neurologist. I was sent up to hospital to get a scan and it showed I was having another bleed. It was only 8 months after the previous one. This time I was moved up to the neurosurgical hospital in Dublin where after multiple scans and tests, it was confirmed that I had a cavernoma and that now would be the best time remove it, as the next bleed may be much more severe and 3 bleeds in a year was a lot.

Surgery was not an easy decision as I could have been left with severe side effects such as losing the ability to swallow. I had surgery January 30th 2020, I was kept in a medical coma overnight and I began to wake up the next day. I then spent the next 4 days in the ICU and even took my first steps again there.

I had an incredible surgeon who managed to remove my entire cavernoma. I was able to swallow and move my facial muscles after surgery but I was left with nerve pain on the whole right side of my body, double vision, weakness and a loss of fine motor skills on my right side and having to learn to balance all over again. I was moved back to my original hospital and spent 3 weeks there recovering before going to the rehab hospital.

There I spent 3 more weeks improving my balance, practising fine motor skills and strengthening my right side. I then got to go home early, courtesy of Covid and I spent the rest of the summer recovering!

My double vision gradually went away and most of my symptoms improved hugely. I got back horse riding, swimming, hiking and was accepted and began my dream masters degree in September.

I don’t regret choosing to have surgery, although if things had worked out differently who’s to say I would feel the same. As unfortunate as the whole situation was, it was amazing to get to know so many different people, including the incredible people who looked after me at the different hospitals.

I learnt how lucky I am to have as many friends and family who visited me while I was in the hospital and their visits made each stay that much more bearable. It was also brilliant to be able to talk to others who had cavernomas and discover a whole community!

I got to meet people both in person at a Cavernoma Ireland meetup in December 2019 and virtually with CAUK since the pandemic began.

These virtual meetups have been an absolute joy to attend, whether they discussed the science behind cavernomas, patient experiences or were just a tea and chat. The entire community is a wonderful support to have, to be able to chat to them, ask questions if you’re worried and find out all about cavernomas.

Thank you so much for reading about my journey with cavernomas!

Aisling's Story

Sandra's Story

The past 19 year’s and counting.
The first symptoms I had, was on the right side of face, pain radiating from my teeth up to my eye, pressure around and at back of the eye. I went to the dentist, who could not see anything wrong with my teeth. But gave me antibiotics just in case.

A few days later no improvement, and had now got double vision. I went to the GP, who advised me of how high my blood pressure was, 200/110. He gave a prescription for medication and sent me out to the local hospital for an ultra sound on my kidneys (due to family history of kidney disease.) The GP was aware of the antibiotics I was already taking, from prescription the Dentist had gave me.

Over the weekend I got worse. We got a letter from the GP to go to A&E.

So, with blood pressure of 200/110, double vision, pain radiating from my teeth up my eye, pressure around and back of eye, weakness in my right arm, and a cracking headache – went to the A&E in Beaumont Hospital.

The doctor at the hospital said that “the concoction of medication alone” the GP had given me, “was enough to have him struck off”.

I had a CT scan. The A&E doctor told me nothing was found on the scan, to go back to my GP for treatment of blood pressure. That high blood pressure can
cause double vision.

The next morning, I got a phone call from Beaumont Hospital’s Neurology team. They had reviewed scans from the night before. They had found something on my scan, and wanted me to go back to the hospital straight away for admission.

As there were no beds available on a ward, I had to sleep that night in A&E. The doctor who had discharged me the night before, walked past my bed. “I sent you home last night”. The look of shock on his face as he read my chart. He apologised saying that he had not seen the scan himself, and was only going by what the radiologist had said.

My symptoms started to increase over the following days, weakness on my right-side leg and arm, the worse cracking severe exploding headache pressure ever. It felt like my head was in a vice. No pain medication could relieve it.

While in hospital I had physiotherapy. My glasses was fitted with prisms to help correct the double vision.

An ultrasound on my kidneys showed I had polycystic kidneys.
This left the doctors uncertain if the blood pressure was caused by my kidneys before the haemorrhage, or if the haemorrhage was causing my blood pressure to be so high.
Having polycystic kidneys, reduces the medications list available for doctors to choose from to give me, to considerably less. As most medication would have an impact on my kidney function.

After a bit of improvement, and no sign of any further bleeding from brainstem cavernoma, I was sent home from hospital with No information, No support, just the name ‘Cavernoma’.

I had to become my own expert in the disease. As it is rare not many medical professionals will know much about it or even heard of it. “Cav what?”

Doctors and nurses would not know what it is like, that yes the symptoms are because of cavernoma. I am living with it every day. I know when something has changed.

In 2006 – Eight months after my first haemorrhage, I started to get some symptoms that was similar to my first haemorrhage. I knew something was just not quite right, and my arm was starting to feel odd. I went to my GP (a different one, had changed GP’s).
I explained, that I felt I was having another bleed. He disregarded my concerns.
Took my blood pressure, said it was fine and sent me home.

A few days later I was attending Beaumont Hospital for a renal clinic appointment.
My arm had gotten worse. I was starting to have to hold it up. Before going to the renal clinic, I went to my neurosurgeon’s private office. With the hope of asking the secretary if there was any way I could see the surgeon or at least a member of his team.
As I was just about to knock on the door, my surgeon opened it.
He saw that I was holding my arm, and seen me straight away.

That evening (Thursday) I had an MRI. Went back for the results on the Monday.
By this time, I now had double vision.

The MRI showed that I had had another haemorrhage, from the same cavernoma in brainstem. Was at high risk of further haemorrhage’s, but surgery was not an option because of location of the cavernoma. Only treatment available was Gamma knife radiosurgery.

I had that done in Sheffield England, a few months after that haemorrhage. In 2006.

In 2007 – I had brain surgery to remove two cavernomas and a meningioma in the frontal-temporal lobe. The meningioma was increasing in size. (The gene CCM3 also causes meningioma tumours to develop). The neurosurgeon said that there was evidence of previous bleeding from the cavernomas he removed.

In 2020 – I had brain surgery to remove another meningioma. This time it was in the left extra-axial.
The tumour had grown in half its size since the previous MRI scan in 2017.

In 2024 I had brain surgery to remove another meningioma, in the right frontal lobe.

My MRI scan in November 2024 report, says I have between 40 to 50 cavernomas.

I am not just living with the risk of a further haemorrhage, from any of my cavernoma.

Who have squatter’s rights!
I am also living with a range of invisible symptoms, including chronic pain, migraine, neuro-fatigue, tinnitus and many more.
An acquired brain injury.

It is vital to be connected to others that have the same condition.
I have been supported by Cavernoma Alliance UK and their members.

Together myself and Kay McGrath, started ‘Cavernoma Ireland’ in November 2018.
To support people living on the Island of Ireland who are affected by cavernoma, including their families, friends and carers.

Now a registered community group (with 3 people on management team), Cavernoma Ireland help to connect members with each other, give support and information.

“Knowing you are not alone, on this path. We stand together, supporting, and searching for a cure.”

Thank you for reading my story.