Helpline 07939 046 030
Freephone 0300 102 17 22*

Stuart’s Schwannoma Story Part Two

08 February 2022

Part one of Stuart's story: https://nervetumours.org.uk/news/stuarts-schwannoma-story

…So here I am Schwannoma free or at least I hope I am.  

On 15th November having completed pre-op tests and Covid test a few days prior to the operation, Tina my wife dropped me off at Leeds General Infirmary.  I had my wheelie cabin bag for a few nights stay and a nervous feeling as if I was going in to a job interview, it was 7am so fair to say I was still half asleep.  I wasn’t dreading the next few days because I knew I would be in capable hands but nevertheless it was a daunting prospect.  A long walk down several corridors in to the old Victorian part of the hospital and I arrived at the surgical reception ward. It is a long room with a high ceiling with beds either side stretching off into the distance, it reminded me of hospital wards in old black and white films.

A few more tests, change into a hospital gown, a ball point cross on the back of my neck and a couple of forms signed and I was ready to go.  I walked with one of the theater nurses back in to the newer part of the hospital where I was greeted by the anesthetist and her team.  They were all very jolly and cracking jokes and before I knew it I was counting backwards.

I awoke from the operation in the recovery suite and as I came round a nurse was there to greet me, she explained that everything had gone well and she was just waiting for a bed to become available.  In fact I was in the recovery suite for a couple of hours which was quite interesting in the bits where I was awake.

The ward was busy and I was well looked after although I didn’t sleep too well having been asleep for most of the day. But in the morning I had a visit from the registrar who confirmed that the operation had been successful. The tumour had managed to get in between a couple of vertebrae (Should have gone to the GP sooner) but they had managed to sort that out and he was confident that the tumour was all gone. To my surprise he said that I could go home later that day! So a couple of hours later, visits from two physio’s and several other nursing staff I was discharged with a box of paracetamol and found myself wheeling my suitcase back through the corridors of the Infirmary.  A very strange feeling 24 hours after I had undergone surgery.

Back at home it took a couple of weeks of rest and recuperation as well as regular paracetamol before I felt as though things were starting to improve.  It was hard to find a comfortable position to sleep in and to move around freely during the day. I didn’t realise how many day to day activities involve using the top of your neck and the bit where your head joins to it to the top of your spine.  I suppose until there is a problem we take these things for granted.  

Within 3 weeks I was at the GP surgery to have the clips removed, this was a big turning point because it freed up my movement and made me happier that the surgery site was healing well. By week 4 I was back to my desk and picking up where I left off, I could also use an exercise bike and could walk the dog so all these things, relatively soon after the operation helped my recovery.    

The biggest milestone was going for my first run on 18th December. It was a slow 5k but I made it in one piece.

It made me realise that I could slowly return to normal life and that the Manchester marathon in April is an achievable goal.

I am well in to training now and up to 12 miles, so a way to go but 8 weeks to do it in (at the time of writing).

I have recently had a follow up MRI scan to check that the tumour hasn’t returned.  There is no physical evidence to suggest it has in that my sense of touch has improved and whilst not completely healed all symptoms have subsided.  I am currently waiting to speak with the consultant. I haven’t spoken to him since the morning of the operation.  Although I had reported to a nurse who phoned that everything seemed to be okay and the wound was healing nicely, so I suppose there is no point having a discussion until they know that everything is back to how it should be.

So, it has been quite an experience from start to end and around 8 months since I initially went to the GP. It sounds like a long time but the actual operation to recovery was less than 8 weeks.  I am pleased that it is over now and I can get back to my activities. I hope I have a few more marathons ahead of me!

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

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

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

Masterclasses in NF - Neurofibromatosis Type 1: Cutaneous Neurofibromas

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

BPNA Keynote Lecture - Prof Rosalie Ferner - Neurofibromatosis 1 in the 21st Century

‘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