Hi! My name is Sara and I’m 23 years old, from Spain. I would like to share my cavernoma story.
I’ve had ‘punctures’ in my chest for 7 years and, until last year (January 2021), doctors were unable to determine what the issue was. They put it down to chronic anxiety and nothing else. No one gave me any medical tests, just an X-ray.
I was tired of being in so much pain and tired of nobody being willing to help me – I didn’t want to see anymore doctors. My mother, however, didn’t give up and took me to Barcelona where doctors finally agreed to give me lots of tests. From an MRI, they found something in my spinal cord – a cavernoma.
I was diagnosed with a cavernoma (T7-T8) that causes bleeding in my spinal cord. The truth is that I was very scared; I had been told in January (2021) by a neurosurgeon that there was a 30% risk of losing mobility from surgery. In February (2021) I had a big bleed which caused the loss of feeling in my legs, and doctors then told me that there was now a 60% chance of losing mobility from surgery.
After several months of trying, I finally found a neurosurgeon who agreed to remove my cavernoma. I was terrified. I finally had the operation on 22nd September. I understood the risks involved in the surgery, but I didn’t want to live with the fear that the cavernoma could cause another big bleed in my spinal cord. After the operation I lost my balance, the muscular strength in my legs and a lot of sensitivity, but after almost 6 months and a lot of hard work I am recovering well. I have a lot of strength back in my legs and I’ve recovered almost all balance and sensitivity. I still can’t do everything I did before as I get tired very quicky when walking. But, in time, I know I’ll get there.
Mentally and emotionally I have struggled a lot but I try to keep my mind occupied so as not to think too much about what has happened to me. The most important people in my life have helped me get to where I am today.
If there is anyone reading who has just discovered they have a cavernoma and is terrified, speak up. Talk to someone; a family member, friend or psychologist. I know they will not know first hand what you are going through but they will listen to you and help you. You can even look to connect with others who are in the same situation – this has helped me a lot.
Through my experience, I have learned to see life differently. Things that I thought were important, aren’t as important anymore. I’ve learned to be VERY patient with myself because I can’t do things at the same pace as before, and that’s OK!