Helpline 07939 046 030

Stuart’s Schwannoma story

19 October 2021

Over the past few years, I have been more active than at any time since my late teens.

I am married with three grown up children and so I have found more time for my two main hobbies, running and beekeeping. I have run a couple of marathons and several half marathons in the past few years, most notably the Chicago marathon in 2019. I look after several colonies of honeybees and I have been doing this for around 6 years. At the age of 59, I am employed by a company which produces power generating equipment, so along with family life I am kept quite busy.

About two years ago I developed a sore neck. I found it uncomfortable to sleep, I couldn't find a suitable position and I also felt odd sensations when driving and looking over my shoulder. Soon after this, my fingers began to feel numb and I found it difficult to do up shirt buttons, or pick up small items. I did a little research and I put the numbness down to age related trapped nerves, and neck stiffness down to driving and running for long periods of time.

It was only really during the pandemic that I thought that maybe I should get checked out by the doctor. Although my neck had stopped hurting, I now had a hoarse voice, so I thought that if I went to the GP, I could get two things sorted out and it would be good to at least discuss the symptoms, even though I wasn't particularly concerned.

In June this year, I saw the GP (in person) and she referred me to the ENT department at our local hospital to get the throat looked at, and because the tingling fingers didn't match the diagnosis for other complaints, such as Carpal tunnel syndrome, she arranged an MRI scan to see if there was anything visibly causing the finger issue.

The ENT appointment came around quickly and I had an endoscope examination which suggested I might have acid reflux but there wasn't anything sinister lurking.

The MRI scan took a little longer to arrange but I had the scan and pretty much forgot about it, until 4 or 5 weeks later there was a call from a doctor at the GP surgery. The doctor asked if I was home and with someone. I was actually sat in the garden with my wife. He went on to say that at the very edge of the scan, on my top vertebrae C1, where the head joins on to the neck, they had spotted a tumour. There wasn't much detail because it was very much on the edge of the scan.

So I was referred back to ENT and they arranged for a more detailed scan MRI and CT. The detailed MRI scan took a little while, probably 40 minutes, they used some dye to improve the contrast in the image. I didn't have the CT scan because the Radiologist contacted me to say that from the MRI image, that I did indeed have a tumour but that it was most likely benign. I would be referred to the area's neurosurgical department for an urgent assessment.

There was a bit of a wait to see the consultant, about six weeks. This was frustrating, but I knew that my condition was only developing slowly (I noticed a slight weakness in my left leg and I could feel some stiffness again in the back of my neck) and I didn't have any symptoms to suggest that the tumour was anything other than benign. Time went quite slowly, waiting for this appointment, but it duly arrived and I found myself sitting in a corridor at Leeds General Infirmary, waiting for my name to be called.

The consultant showed the detailed images to me and explained that indeed I did have a nerve sheath tumour called a Schwannoma and he explained how these things develop and that in fact I had two options. Firstly, watch and wait, he would arrange regular scans and we would monitor the growth and changes, or secondly, surgery. Both options have up sides and down sides, but the more he spoke about it, the more I decided that surgery would be the best course of action for me (especially whilst I am still on the right side of 60)!

To my surprise the consultant said that he would check his diary and within 5 minutes I was booked in for surgery in November, just 4 weeks away.

 

A great result but a little scary, I think it will be after Christmas before I put on my running shoes and fortunately the bees do not require a lot of attention at this time of year.

I do have a few things to consider, due to the nature of surgery and the potential for things to go wrong, so I am looking at putting in place an *Enduring Power of Attorney as well as making sure a few things are in place for continuity of work and other responsibilities. I am booked in for the Manchester Marathon in April, so I have a target for when I can start training again.

*[Editor's note: Enduring powers of attorney (EPAs) were replaced by lasting powers of attorney (LPAs) from October 2007. EPAs made before that are still valid.]

Part two of this story will cover the operation (whilst I am awake of course), recovery and starting to get fit again - I am looking forward to being Schwannoma free!

"I am pleased to help raise awareness of nerve tumours and the charity because to those unaffected they are not a well-known complaint. I feel lucky that I am relatively well compared to many but there will be others out there who should get checked out sooner than perhaps I did. The NHS have handled the process very well so far and I am very grateful to my diligent GP for setting me off on this journey."