A ticking “timebomb” in my head

Usually, Cavernoma are not considered as dangerous at all because blood flow and pressure in these lesions are relatively low. However, the blood vessels do have thin and leaky walls and about 30% of people with Cavernoma have severe symptoms (like epilepsy and neurological deficits). Moreover, when it comes to a so-called overt hemorrhage it’s often a very life-changing event after which the majority of patients find themselves defining a “new normal”. Once a cavernoma has caused an overt hemorrhage, it’s more likely to bleed again – especially in the first 3-5 years after the first bleed. Currently, the only treatment is neurosurgery. In my case, this was not at all an option because it would cause more harm than good. So, I keep walking around with this little demon raspberry in my head hoping that it will behave now. If it has taught me one thing, it’s the fact that I’m now more thankful than ever for every day to be alive.

Before my Cavernoma bled, I was climbing the career ladder while trying to balance family life. I had started my own coach/consultant business for electron microscopy and X-ray analysis and our family had basically just moved from Germany to Sweden. In our first winter here, on January 15^th 2017, our kids (5 and almost 3 years old) were quite confused when, all of a sudden, I needed to be taken to the hospital because I couldn’t lift my left arm and couldn’t walk properly without support.

At the hospital, the doctors couldn’t tell me whether I had a stroke or a tumor. It took a CT scan, 2 MRIs, several blood tests, a lumbar puncture and in total 3 weeks until the hypothesis was raised that this might be a cavernoma. After 4 days in the hospital, I spent 8 months at home trying to cope and recover – painting helped me a lot to process the trauma, but also walking more and more every day.

The online community of Cavernoma patients was the place where I found comfort and support, because they were able to actually understand what I had gone through. 

Now, after 3 years I would say that the trauma of having the diagnosis Cavernoma is much smaller than the trauma of “falling between the chairs” in the health care system. In the beginning, it was not clear which department should take care of me – the stroke unit or neurology.

The one phone number I got when I was sent home from the hospital belonged to a nurse who then told me that I have apparently the wrong number since this was the oncology unit. The different doctors I got to see didn’t realize that the lumbar puncture results were actually never communicated to me – so, no wonder I was surprised when I found out about an atypical finding through ordering and reading my hospital records. These lumbar puncture results caused some uncertainty so that I had to be examined with MRI another 3 times in the first year.

In August/September 2017, when I was “cleared” of not having a tumor, I finally got some more help from the wonderful team at the Brain-Rehabilitation in Danderyd and then I slowly started working again. In the beginning I was working with upcycling and trashArt, but then I became more and more involved in patient advocacy and was able to do a work training at Riksförbundet Sällsynta diagnoser. Together with several other patients and their families, we started a Swedish patient organization (Cavernöst Angiom Sverige – CASE). In June 2019, eight national Cavernoma patient organisations came together for the first time to form the European Cavernoma Alliance with the goal to stimulate more collaborations between researchers, patients and clinicians in order to help find a cure. 

Cavernoma are also called Cavernous Angioma or Cerebral Cavernous Malformation (CCM). If more than one cavernoma is present, a thorough examination is needed, also of family members, because then the chances are high that it’s one of the rare familial forms (CCM1, CCM2, CCM3).