*Note, this story discusses a rare surgical outcome resulting in loss of life. We recognize this may be difficult for some readers. Please take care while reading. 

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"On February 17th, 2015, my wife Simona and I had just left the movie theater when she started to feel strange; saying she had a headache and vertigo.  The morning after, the symptoms persisted and worsened day after day. At that time, she also experienced dizziness, problems with balance, swallowing, and visual sensitivities. 

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We went to the Emergency Department at our local hospital, and she was diagnosed with labyrinthitis.

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However, Simona’s symptoms continued and though we consulted with a few physicians, who considered various diagnoses, she did not improve.

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After about a month, gratefully, Simona saw a very knowledgeable and experienced neurosurgeon and was diagnosed with multiple cavernous malformations. The neurosurgeon shared that the one causing her symptoms was in the brainstem, specifically the left paramedial pontine.  He also shared that it had hemorrhaged. To monitor the hemorrhage, she was admitted. The worries and fears started to grow as Simona didn't know what to expect. I was also terrified since I felt stuck and powerless.

 

Shortly thereafter, the neurosurgeon told us that things had improved and were stable, enabling Simona to go home. The treatment approach at that time was to watch and monitor the cavernous malformation.

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At that time and over the next years, Simona learned to live with her diagnosis. She realized that she had to incorporate rest throughout her day and manage her energy levels. Occasionally, she experienced extreme fatigue with dizziness and vertigo.

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Simona felt that the cavernous malformations didn't stop her. She always told everyone that the disease became her best ally as she embraced it.  It pushed her to live life to the fullest. She was able to graduate college with honors, she travelled and she even started a career as a medical office assistant.

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For several years, the cavernous malformations were monitored and things remained stable.

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In 2021 we moved from Canada to Luxembourg, to be closer to our family.  Simona continued annual MRI imaging and the cavernous malformations remained stable.

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Things changed in July 2024 when Simona experienced significant dizziness, vertigo, and balance issues, that remained persistent. This impacted her quality of life as she was no longer able to go out and do basic things like going to the supermarket, due to the symptoms she was experiencing. Simple steps in her daily routine became almost impossible and her care needs increased.

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We experienced challenges in finding knowledgeable care providers for Simona.  Finally, we discovered a hospital in Milan, Italy and were able to meet with an expert neurosurgeon. He gave us an opinion that surgery would be the best option for Simona after it was determined that the cavernous malformation (CM) in the brainstem was causing her symptoms.  Shortly thereafter we moved to Milan to prepare.

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Soon Simona’s diagnosis was further clarified, with the information that she had an inherited form of cavernous malformation, CCM1. The neurosurgeon estimated about 40 cavernous malformations in her brain.

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As we waited for surgery, Simona had two intralesional hemorrhages in the pontine brainstem CM, that further impacted her abilities. This led to a finalized date for surgery. The neurosurgeon shared that it was a complex surgery with a high chance of negative effects.  However, he felt there was no option as the cavernous malformation would continue to hemorrhage, at further risk to Simona. Simona felt lost, though at the same time was so hopeful that finally it could be taken care of. That she would feel an ease to the physical and psychological suffering she was experiencing. It was a fearful time.

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September 16th, 2025, was our wedding anniversary, and the day of Simona’s brain surgery. After a 10-hour surgery, Simona spent 10 days in the ICU recovering. Due to swallowing challenges, she had a feeding tube placed and required a tracheostomy. For about 2 weeks she couldn’t speak, though she was determined to recover and not let the disease win. We often used hand signals to communicate with each other. Seeing my beloved wife stuck in a bed was the worst nightmare of my life, but she never gave up!

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On October 1, she moved to an inpatient rehab center and after 20 days of hard work and endless efforts, my unbeatable hero started to regain her functions. With the help of physiotherapists, she started to walk again. Most importantly she started to regain her ability to speak and to swallow. Slowly, she improved and was close to eating solid food and the removal of the tracheostomy.

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In her eyes, I could see the pain she was experiencing. She had always been a strong and independent woman. However, now, she was depending on others for help to do everything. Once again, her life was challenging.

 

Near the end of October, after experiencing some new symptoms, Simona was moved back to the neurosurgical floor at the hospital to have some imaging and assessment.

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That night we looked in each others’ eyes, and we repeated how much we loved each other. As I departed, I assured her that I would be back the next day to sit with her, like always. 

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Heartbreakingly, in the early morning hours of October 31st, 2025, I received a call that no one wants to get in their life. It was the hospital informing me that beautiful Simona suffered cardiac arrest and that at only 33 years of age, passed away. 

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Though there remain some unanswered questions, I want people to know how strong and brave Simona was. She taught me a huge lesson- never give up no matter what happens. Her motto was always: "if there is a hope there is a chance but moreover in love and life everything is possible!". If she was here today, she would always say to other CM patients to never lose hope, keep fighting hard and never give up!

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It is my hope that by sharing Simona's story I can spread awareness about cavernous malformation and rare disease. I hope to convince even one person to support cavernous malformation research and rare disease organizations like Cavernous Malformation Canada.

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I made a promise to her, and to myself that I would do anything to keep her memory alive through the support of cavernous malformation patients."

 

Simona’s loving husband, Christian.