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Lindsay’s Story: Cavernomas in the Brain and Spine, & CCM1

Hi I’m Lindsay. I am a wife and mother to two incredible children.

In 2011 I had a bleed from a Spinal Cavernoma. At the time I had never heard of this rare disease. I had never had any health problems. My symptoms started with a tingly feeling down my left leg. I also went for a bath and my left leg didn’t feel the temperature. I went to my GP who thought I maybe B12 deficient. 2 weeks after these symptoms started I had a car accident. I had my children in the car so was more concerned about them. We went to the hospital and they said that I had whip lash. I had a pain in my back. 9 days after my car accident I came home from work and when I got into bed I had the most excruciating pain going through my chest and radiating around my back. The next morning my left leg was dragging and I was unable to go to the toilet. I went to hospital and they did a blood test and urine test on me and said that I could be discharged. The next day both of my legs were dragging and I was still unable to go to the toilet. Due to it being a weekend I thought it would be better to see my GP. My GP sent me immediately to hospital and within hours of being there I lost all sensation from T6. It took a week to diagnose me due to the bleed covering the Cavernoma. . I was diagnosed with 1 Cavernoma in my spinal cord and 3 small Cavernoma’s in my brain. I spent 7 months in hospital learning to become as independent as possible I am now a T6 Complete Paraplegic.

Due to having multiple Cavernoma’s I was referred to the genetic clinic. I had the genetic test done and had the devastating news that my Cavernoma’s were the familial gene CCM1 which meant that my children have a 50% chance of inheriting the disease. ⁣

Over Christmas 2021 my 14 year old son had an excruciating headache and was sick, I took him to the hospital and insisted on an MRI. MRI’s are the most reliable scan to diagnose a Cavernoma. My son was diagnosed with multiple Cavernoma’s in his brain. He has one large Cavernoma deep in the thalamus that bled. He had left side weakness that has almost fully recovered. He is still suffering with neurological fatigue. We have been told that it is too dangerous to operate and due to his amazing recovery it would be far better to not operate. He is an amazing young boy. He is back at school and is doing really well.⁣ He needs to take breaks due to fatigue but his school have been excellent.

I am obviously devastated that one of my children has inherited this condition but all I can do is look after him to the best of my ability, educate him to take care of his health and to keep up with the latest research.

There is research that emulsifier free diet can help prevent bleeds and more Cavernoma’s forming. The gut microbiome is so important. As a family we are looking after our gut to help prevent any further bleeds. ⁣This is something we can control with this disease.

I have always believed that one day there will be a cure but whilst there isn’t, I try to keep myself and my family as healthy as possible to prevent our health deteriorating.

Sometimes our bodies don’t fully recover….life moves on, everyone is different and life can be good if you try to look at the positives.