hi, my name is vincent coonen.

& this is my story

Hello fellow Troopers, my name is Vincent Coonen and live, with my wife Gunilla and our daughter Sanna, in Almere, the Netherlands.

I fought a tough physical battle with paraganglioma which I have won. Mentally there were some down moments but I’ve come out even stronger, resilience pays off! I hope my story will be of support to you.

The character of a man is seen in the most difficult moments, when he has to fight for his life and for his loved ones. The difficulties can be overcome, no matter how difficult it may seem, no one should ever throw in the towel or sit down and cry. Taking the difficulties face to face shows courage, and in the end almost everything can be overcome!

In October of 2010, I went to my primary care physician with complaints of constant headaches and feeling my heart beating in my right ear. At first the diagnosis was an ear infection but the prescribed medication did not help and as a new complaint I started to experience hearing loss. A CT scan made at the local hospital showed something in my middle ear which they could not identify so I was send on to a University hospital in Amsterdam.

In January of 2011, I was diagnosed with a jugulotympanic glomus tumor. They told me this was a benign tumor and that they would follow up with more scans and tests as they still could not explain my headaches. I called this tumor “my little friend” unaware of the long road which was still ahead of me.

Through my own research on the internet I discovered that these tumors are not always benign and can be hereditary, something I was not informed about. As this hospital was not specialized in these tumors I was send on to the University hospital in Leiden. In October of 2011, they attempted to remove the tumor without causing any collateral damage but sadly they had to leave some behind. After this surgery my headaches were gone and to celebrate that victory we went for a short trip to friends in Luxembourg (on the picture above you still can see the tiredness)!

With the help of a hearing aid I fully recovered, the genetic tests came back negative (so I am considered sporadic) and scans luckily did not show any other tumors.

In April 2012 I started to experience hearing loss again and scans showed the remainder of my tumor had started growing again and with a vengeance. Another operation in the Netherlands was ruled out so my wife and I went for a 2nd opinion to Switzerland. In the end I decided to go for Gamma Knife radiation here in the Netherlands. I received this one time only, albeit long, therapy in January 2013 and it was successful and a full recovery again!

These past years I’ve learned a lot, about paraganglioma and about myself. Meeting many of you online and the unconditional support I received from all over the world during the difficult moments still feels like a warm bath. We so often take things for granted, but since my disease even a glass of water tastes differently, not to mention a walk or feeling the warmth of the sun on my skin.

Now the time for me has come to give back wherever I can, online as well as by being a board member of the Dutch patient association.

I want to conclude saying thank you, especially to my wife and daughter but also to my family and friends for standing by my side. Without your support my fight would definitely have been much harder.