Living with Noonan Syndrome has meant navigating a complex medical journey, marked by both minor and major surgical interventions. While I know this path is ongoing, I’ve learned to face each step with resilience and a realistic mindset.
Surgical History
- At just 18 months old, I underwent my first open-heart surgery, marking the beginning of my medical journey.
- Around the age of 14–15, I had my first attempt at draining a chylothorax (fluid build-up) in my right lung. Unfortunately, this procedure was unsuccessful.
- At 17, I had a long-awaited lung surgery, during which my thoracic duct was tied to prevent further fluid accumulation. Thankfully, this procedure has been successful to date.
- During my recovery at the Royal Brompton Hospital, I also had a developmental issue addressed and repaired.
- In my mid-20s, I underwent surgery to drain fluid from my fallopian tubes—though the exact cause of this build-up remains unknown.
- Then in 2019, I had my second open-heart surgery.
While surgery is a daunting concept for many, my experiences have made it feel like a normal part of life. I’ve learned to manage the process with a mix of acceptance and strength.
Complications and Neurological Effects
Following my second open-heart surgery, I began to experience unusual symptoms that were initially quite unsettling. I would frequently feel lightheaded and as though I were being pulled or leaning to the right—almost as if my body’s weight had shifted entirely to that side. Lying down only made these sensations worse, often causing me to become physically sick.
Although these symptoms have gradually lessened over time, they still occasionally return. Thankfully, I have never lost balance or consciousness. After extensive review, it was confirmed that these neurological effects were a complication from my second heart surgery.
Prolonged time under anaesthesia and the use of a cardiopulmonary bypass machine—which temporarily takes over the functions of the heart and lungs during surgery which allows surgeons to perform procedures on a stopped heart —can sometimes lead to lasting cognitive and neurological changes. In my case, the procedure lasted over nine hours, which likely contributed to these side effects.
Migraines and Neurological Assessments
For years, I lived with daily headaches, often brushing them off with over-the-counter pain relief. Eventually, the frequency and severity became impossible to ignore. After consulting my GP, I was referred to a neurologist for further investigation.
This process involved a consultation, an EEG (electroencephalogram) to measure brain activity, and a brain scan. While these tests didn’t reveal any major concerns, a few minor vascular anomalies were noted—described as “dots” on the scan, which they believe are just blood vessels. I now have annual follow-ups to monitor them.
The diagnosis was chronic migraines, and I began treatment with Amitriptyline. Since starting this medication, my migraines have significantly improved, allowing me to get back to a more stable and manageable daily life.
https://www.noonansyndrome.org.uk/faqs/neurology
Final Thoughts
Living with Noonan Syndrome means facing medical challenges head-on, often without clear answers. But through each setback, I’ve found strength and learned to advocate for my own health. If you’re facing something similar, know that you’re not alone—and that there is support, progress, and hope at every step.
