Eleni’s Journey with Schwannomatosis - A Delayed Diagnosis
Age at diagnosis: 51
Current age: 57
Diagnosed with: Schwannomatosis
Looking back, my symptoms began in my early 30s, but like many others, I didn’t recognise them for what they were. At the time, I was a busy mum with two young children, constantly on my feet and working long hours. When pain or discomfort appeared, I simply chalked it up to the demands of everyday life.
The first tumour appeared after a leg injury in my early 30s, followed by another noticeable lump in my mid-40s. Still, I didn’t seek answers—until the pain could no longer be ignored.
Finally, Some Answers
In late 2018, after injuring my shoulder and experiencing increasing nerve pain, I decided it was time to get things checked. An MRI revealed a tumour in my armpit. That discovery set off a series of referrals and investigations.
Thankfully, I was referred to a neurosurgeon who, after reviewing a follow-up MRI, recognised the signs of Schwannomatosis right away. He initiated further testing, including a full-body MRI, PET scan, and a referral to a geneticist.
The results showed multiple tumours from my neck to my feet.I now undergo annual full-body MRIs and occasional PET scans to monitor my condition.
Living with Chronic Pain
In 2020, I had my first tumour removed from my spine. This July, I’ll undergo surgery to remove another tumour from my femoral nerve. The tumours cause constant, 24/7 pain—what changes is only the intensity. The lack of quality sleep is one of the hardest things to cope with.
Unfortunately, the side effects of strong pain medications often make daily functioning more difficult. I’ve chosen to stick with milder pain relief so I can still get through the day as best I can.
Staying Resilient
Schwannomatosis is an invisible condition. Just because we appear to carry on with our lives doesn’t mean we are not living with a disability. I’ve had to learn to listen to my body and accept my limits.
This condition has changed my perspective. I try not to let it define me, and I’ve made it a priority to enjoy life, tick things off my bucket list, and focus on what truly matters.
Hopes for the future
The most frustrating part of living with Schwannomatosis is the lack of answers. We still don’t know enough about the condition—why some people develop many tumours, others only a few, and some none at all.
My greatest hope is for a cure. Until then, I hope for treatments that can stop its progression, and for better pain relief options that allow people like me to live more comfortably.
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