Supporting the

Neuroendocrine Cancer Community

PURSUING A PARAGANGLIOMA

Looking back now, all the pieces fit together. However, at the time it was entirely a different story.

Initially, I noticed a distinct whooshing sound in my left ear. But I hadn’t had any previous ear problems before so wasn’t overly worried.

But I did have an anxiety issue and this was accompanied by facial and neck flushing.

My symptoms continued for a couple of months and initial thoughts were a possible cold or congestion so I just let it play out. But when this continued I decided to visit my GP Surgery. They assured me it was just a build up of wax and I should have my ears syringed, which they arranged. And they said facial flushing due to anxiety was common amongst many people.

Although the syringing improved my hearing, the whooshing noise continued albeit at a slightly lower frequency – with the wax build up potentially causing the whooshing to appear louder.

And the flushing continued. I repeatedly sought medical advice via my GP on numerous occasions, to be told the same thing time and time again. But after several months my partner convinced me that I should request a transfer to another GP Surgery, which I did. And I booked an appointment almost straight away to get a second opinion on the noises and sensations in my ear.

After discussing my situation, the new GP referred me to a specialist at my local hospital. I had an examination and discussed my symptoms, and although the doctor wasn’t concerned he had picked up on my anxiety and facial flushing issue which I was displaying.

He offered me an MRI to rule anything sinister out and in his words: to “put my mind at ease.”  But he also mentioned a particular word which I wasn’t familiar with. It sounded like he’d said  “shwanna-oma.”

Obviously I was curious and anxious so did what many of us do, some online investigating!

I wanted to be prepared for anything that could be confirmed as I mentioned I have suffered from anxiety from a young age and I just had a gut feeling that something was being overlooked.

I had an MRI in December which came back inconclusive. They then repeated the scan in late January. A week or so later, I received an appointment with an ENT specialist.

This for me was a red flag. I knew something had been found and I prepared myself by researching everything I had experienced and words I had heard along the way.

The ENT specialist confirmed that a ‘Paraganglioma’ had been identified in my neck skull/base area on the left side. By now, I was already pretty tooled-up with knowledge! In fact, the doctor was slightly taken a back at how I knew what a Paraganglioma was.

At the time I felt both relief and distress, it was a very strange concoction of emotions. I left the appointment feeling overwhelmed and frightened as to what this meant from every aspect of my life going forward and after telling my family, I felt very alone. I’ve got lots of friends but this was something I couldn’t discuss with them as my diagnosis is so rare and unheard of.

I felt like I couldn’t be the only person with a “Paraganglioma” so I decided to try to find a support groups and reach out to find some help.

I also asked my hospital team if there were any groups or support services and they provided me with a leaflet. This enabled me to seek some counselling services and it was from this I learnt about online communities, forums and social media pages.

I’m quite savvy with technology but I’d not been on Facebook due to personal reasons. I decided that in order to access the support group, I need to set myself up with an account and get talking about my experience and diagnosis to seek ongoing support.

It was from this that I found Neuroendocrine Cancer UK’s Facebook page and I applied to become a member. I was accepted and instantly felt a rush of relief, I had found a place where I could talk openly.

Since then, I have chatted with people from all backgrounds with various different stories to mine which are both interesting and helpful. This was what I needed: a space to freely discuss symptoms, feelings and worries without having the anxiety attached to seeing people face-to-face.

Neuroendocrine Cancer UK’s support group is an incredible source of advice and sense of belonging to me. I am extremely grateful that this was available at a time where I felt at lost with my place in the world.

Christina