The story of Sandra
The past 16 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 benign 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 benign 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.
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.
We help to connect 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.