Tash tells her story of discovering a cavernoma bleed, during lockdown, just months after surgery for an unrelated spinal condition. She discusses her difficult journey to diagnosis, lack of communication from her doctors and how she managed telling her friend and family about her diagnosis.
Gosh where do I start?
28th August 2020 (Lockdown)
I ended up in hospital with what’s called Cauda Equina Syndrome (occurs when there is dysfunction of multiple lumbar and sacral nerve roots). I was eventually blue lighted to another hospital to have an emergency discectomy (surgery to remove part of a disc in the spine) after having an MRI scan. I was paralysed waist down with bladder issues. This was a scary part of the first chapter of my body breaking down. I was home within 48 hours and thankfully I could weight bare, and go to the toilet. I was thankful and on the road of recovery working from home…
28th November 2020
I kept getting what felt like electric shocks running down the right side of my body, and my body felt like I was paralysed waist up. One day I got a headache so severe that I felt my brain was going to explode! This was worrying but I spent 7 days at home scared of what the hospital would say. Day 7 was a Friday – a colleague of mine said that if I didn’t call the doctors she would march me down to A&E herself. I headed to my local doctor’s surgery where the doctor startled me by saying “I think you need to get straight to A&E and say that you were sent here by your GP”.
As a mum with two young boys, I was really scared of what could happen. I was back to what felt like A&E again, alone during lockdown and facing the unknown. COVID-19 was at a high again, and doctors where walking around with hazmat suits on; some even looked like Darth Vader! After what felt like hours, a CT scan and another MRI scan, I was admitted into the hospital again, where I was to stay all weekend without much information at all.
Monday morning came, and more scans where done. When the first lot of doctors came I had 5-6 of them gathered around my bed, but it was still unknown what was happening to me. The curtains remained open. I was still finding it difficult to dress, sit up and was getting bouts of paralysis.
Day 5
Day 5 came and the physio said he couldn’t see me because “you are the one that has a bleed on your brain?!” I actually thought she had got the wrong patient, boy was I wrong! This was day 5 and nobody had told me anything!
Doctors rounds came again, and 5/6 people gathered once more – this time they closed the curtain. I immediately felt a lump in my throat – the seriousness of their faces all looking at me. I tried to paint on a smile but really my eyes looked like a deer in headlights! I looked up and waited to hear what was happening…… “You have what’s called a cavernoma Mrs Ritchie-Loan. It’s a small bleed on your brain. It’s like a small raspberry that has bled inside your brain on your left cerebellum. This part of the brain that controls the muscles on the opposite side of your body and this is why you have had symptoms, such as paralysis on your right side. We are hopeful that you will not need surgery and once the symptoms have stopped you will be allowed home.”
Me, deer in headlights; sorry what?! A bleed on the brain that was still bleeding at the point of entry to the hospital. Is this serious? Could I die? The doctors walked away! I was left to google cavernoma and read that it’s reportable to DVLA! I ask my doctors to see scans of my brain (see photos).
After the doctors left, I knew I had to inform my family and friends who were waiting for updates from me. This was really hard for me, and I eventually got on the phone after I’d already had a huge cry with my “hospital family”, three other ladies on my ward who I will cherish forever.
I called my mum first and she said “Oh well you will be ok don’t worry. You are in the right place.” She said she would call my dad and my siblings and told me she loved me. Ok, I thought, that wasn’t too bad, I think I can do this!
Emboldened , I called my husband who had been looking after the kids alone for a number of days.
“Oh what doesn’t that mean? Are you going to be ok? Is there an operation?!”
“No no I am fine don’t panic I will be home soon! Kiss the boys for me.”
At this point it weirdly felt like I was kind of enjoying my Covid holiday! I was very peaceful and chilled. One of the last calls to was a friend I met when I was 11 years old. As I soon as I told her she burst into tears and cried like a baby thinking I was going to die. I was having to calm her right down. At least I know I am loved I went straight to sleep after the exhausting phone calls!
Day 8
On day 8 I was allowed to go home to my family, still slightly broken but I was slowly getting back to feeling my normal self. I was also diagnosed with bilateral stenosis of the neck C4-C7.
May 2021
Fast forward to May 2021 I was involved in a car accident with a drunk driver, just four days being checked over in hospital again. In December 2021 I got Covid and it triggered my brain to have further electric shocks and was diagnosed With Covid meningitis which meant four more days in hospital. I have had a number of check- ups since and although my cavernoma remains, I wear my glasses more often and I take it easy when I get headaches.
In January 2022, I was shocked when my consultant told me that the Cavernoma was actually classed as a stroke. I have a number of tests and day surgeries to support me. I was diagnosed with PTSD in the summer and received cognitive therapy which thankfully has been a great success. I live each day as it comes, and try to find the positive in everything.
I am hopeful for the future and I tell my story so that others take matters seriously when something in your body tells you something is wrong. Listen to your body I promise you it knows what’s best.