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Stuart’s Schwannoma Story Part One

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."

Masterclasses in NF: Constitutional Mismatch Repair Deficiency Syndrome as Differential Diagnosis to NF1/Legius Syndrome - Prof. Dr. Katharina Wimmer

Constitutional Mismatch Repair Deficiency Syndrome as Differential Diagnosis to NF1/Legius Syndrome

Prof. Dr. Katharina Wimmer, Medical University of Innsbruck

Masterclasses in NF: Rare NF1-Associated Tumors in Adults - Eric Legius & Prof. Ellen Denayer

Masterclasses in NF: Rare NF1-Associated Tumors in Adults

Eric Legius, MD, PhD, University Hospital Leuven

Prof. Ellen Denayer, University Hospital Leuven

Masterclasses in NF: Optimising Hearing Outcomes in NF2-Related Schwannomatosis - Simon Freeman

Masterclasses in NF: Optimising Hearing Outcomes in NF2-Related Schwannomatosis

Simon Freeman, MPhil FRCS, Manchester Royal Infirmary and Salford Royal Hospital

Masterclasses in NF: NF1 Dermatological Manifestations - Pierre Wolkenstein, Laura Fertitta & Sirkku Peltonen

Masterclasses in NF: NF1 Dermatological Manifestations

Pierre Wolkenstein, MD, PhD, Hopital Henri-Mondor, Paris, France

Laura Fertitta, MD, Hôpital Universitaire Henri Mondor

Sirkku Peltonen, MD, PhD, University of Gothenberg, Sweden

Masterclasses in NF: Breast Cancer in NF1 - Gareth Evans

Masterclasses in NF: Breast Cancer in NF1

Gareth Evans, MD, University of Manchester, UK

Masterclasses in NF: Pain in Non-NF2-Related Schwannomatosis - David Pang

Masterclasses in NF: Pain in Non-NF2-Related Schwannomatosis

David Pang, MD, ChB. Guys and St Thomas' Hospital NHS Trust, London

Masterclasses in NF: Distinguishing Non-NF2-Related from NF2-Related Schwannomatosis - Clinical and Genetic Approaches - Said Farschtschi

Masterclasses in NF: Distinguishing Non-NF2-Related from NF2-Related Schwannomatosis - Clinical and Genetic Approaches

Said Farschtschi, MD, University Medical Center, Hamburg-Eppendorf, Germany

Masterclasses in NF: NF1 Pre-Implantation Genetic Diagnosis - Eric Legius & Prof. Ellen Denayer

Masterclasses in NF: NF1 Pre-Implantation Genetic Diagnosis

Eric Legius, MD, PHD, University Hospital of Leuven, Belgium

Prof. Ellen Denayer, University Hospital of Leuven, Belgium

NF2 Working Together: from a tentative diagnosis and beyond

Understanding the impact that a tentative diagnosis has on a parent. Information and access to the existing NTUK and Specialist Nerve Tumours medical and non medical care network.

NF1 Working Together Part 2: from a tentative diagnosis and beyond

Understanding the impact that a tentative diagnosis has on a parent. Information and access to the existing NTUK and Specialist Nerve Tumours medical and non medical care network.

NF1 Working Together Part 1: from a tentative diagnosis and beyond

Understanding  the impact that a tentative diagnosis has on a parent. Information and access to the existing NTUK and Specialist Nerve Tumours medical and non medical care network.

Masterclasses in NF: Surgery in NF2 - Michel Kalamarides & Andrew King

Masterclasses in NF: Surgery in NF2

Michel Kalamarides, MD, PhD, Hôpital Pitié-Salpêtrière, Paris, France

Prof Andrew King, MBBS FRCS FRCS(SN), Salford Royal Hospital, Manchester, United Kingdom. Member of the MAB of Nerve Tumours UK

Masterclasses in NF: Cognition and Behaviour in NF1: Phenotype and Treatment Approaches - Shruti Garg, Andre Rietman

Masterclasses in NF: Cognition and Behaviour in NF1: Phenotype and Treatment Approaches

Dr Shruti Garg, MBBS, MRCPsych, MMedSci, PhD, Royal Manchester Children’s Hospital, United Kingdom. Member of the MAB of Nerve Tumours UK

Andre Rietman, PhD, Erasmus University Medical Center, Rotterdam, Netherlands

Masterclasses in NF: Emotional Challenges in NF1, NF2 and Schwannomatosis - Susie Henley, Thomas Pletschko & Verena Rosenmayr

Masterclasses in NF: Emotional Challenges in NF1, NF2 and Schwannomatosis

Susie Henley, DClinPsy, PhD, Guy’s and St Thomas’ NHS Foundation Trust, London UK

Thomas Pletschko, PhD, Medical University of Vienna, Austria

Verena Rosenmayr, Clinical Psychologist, Medical University of Vienna, Austria

Masterclasses in NF: NF1 Pediatric Management - Rianne Oostenbrink

Masterclasses in NF: NF1 Pediatric Management

Rianne Oostenbrink, MD, PhD, Erasmus University Medical Center, Rotterdam, Netherlands

Masterclasses in NF: Associated Glioma in Children - the Optic Pathway and Beyond - Amedeo Azizi

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Amedeo Azizi, MD, PhD, Head of the Paediatric Neurofibromatosis Program and Paediatric Neuro-Oncology Program, Medical University of Vienna, Austria

Masterclasses in NF: NF1 Orthopedic Manifestations - Eric Legius and Christophe Glorion

Masterclasses in NF: NF1 Orthopedic Manifestations

Eric Legius, MD, PhD. Head of Clinical Genetics Department of the University Hospital Leuven, Belgium

Christophe Glorion, MD, PhD, Department of Paediatric Orthopedic and Traumatologic Surgery, Hopital Necker-Enfants Malades, Paris, France. 

Masterclasses in NF: NF1 Malignant Peripheral Nerve Sheath Tumours - Rosalie Ferner and Viktor-Felix Mautner

Masterclasses in NF: NF1 Malignant Peripheral Nerve Sheath Tumours

Prof Rosalie Ferner, Consultant Neurologist and Lead Clinician for Neurofibromatosis, Guy's and St. Thomas' NHS Foundation Trust, London. Member of the MAB of Nerve Tumours UK and Trustee of Nerve Tumours UK

Viktor-Felix Mautner, MD, PhD. University Medical Centre in Hamburg-Eppendorf, Germany. Head of NF Outpatient Department

Masterclasses in NF - Neurofibromatosis Type 1: Cutaneous Neurofibromas - Pierre Wolkenstein and Sirkku Peltonen

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Pierre Wolkenstein, MD, PhD. Hopital Henri-Mondor, Paris, France. Head of the Department of Dermatology

Sirkku Peltonen MD, PhD. University of Gothenberg, Sweden. Professor of Dermatology

INFER (International NF Educational Resources) is a series of online educational lectures for medical professionals by leading neurofibromatosis experts. The Masterclasses take place online approximately once a month, each on a different topic, and include real-time interaction between the expert presenter and the participants. The presentations are conducted in English, with real-time audio interpretation available in 6 additional languages: French, German, Italian, Portuguese, Russian, and Spanish. A recording of each INFER masterclass is then be made available online in each language for those who could not attend an event. INFER is an initiative of Children’s Tumor Foundation Europe, supported by an educational grant from AstraZeneca. https://ctfeurope.org/research/masterclasses-in-nf

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‘Neurofibromatosis 1 in the 21st Century’

Keynote Lecture at the 48th British Paediatric Neurology Association Annual Scientific Meeting on 21st January 2022

Prof Rosalie Ferner, Consultant Neurologist and Lead Clinician for Neurofibromatosis, Guy's and St. Thomas' NHS Foundation Trust, London. Member of the MAB of Nerve Tumours UK and Trustee of Nerve Tumours UK