I was diagnosed with a grade 2 meningioma in 2006. This was after a couple of years of experiencing progressive and increasingly severe symptoms. Getting my GP to recognise that what I was describing needed further investigation was a significant frustration. I had not been a frequent visitor to the GP, yet I must have organised ten appointments in short succession. This did not appear to raise alarm bells with the GP. While I appreciate that GPs are under time constraints and increasing workloads, in my opinion, being offered the chance to attend a pain clinic without attempting to find out what might be causing the pain, is not good practice. Suggesting I might be depressed, also didn’t help!
The first sign for me was a very painful neck which initially meant I could not watch TV from the sofa or comfortably view a play at the theatre. The failure of my GP to manage the situation appropriately lead me to seek out treatment from reflexology, osteopathy, acupuncture etc, for the significant discomfort, but to no avail. The pain became unbearable and much worse at night, so we changed our mattress and pillows, and I was popping pain killers. I would wake in the night, eventually every night, because of the pain. It got so bad that even the touch of a sheet hurt. During the day, if I bent down (to open a drawer in the fridge, for example) I was in such pain I couldn’t get up and had to use the breathing techniques learnt for giving birth!
Eventually I just had to pay for an appointment with a neurologist at which point I couldn’t walk in a straight line, felt ‘sea sick’ all the time, appeared drunk, could not sleep because of the headaches. He agreed that an MRI was a good idea to rule anything out, which I also self-funded! On the day of my appointment for my scan results I asked my father to accompany me as I felt I was not being taken seriously. The neurologist went quiet, and then offered me an apology when it revealed that I had a large meningioma (turned out to be grade 2) in the posterior fossa. I had cerebral oedema to such an extent that I had to take steroids immediately to reduce the swelling before they could operate to debulk the tumour.
My GP subsequently wrote a letter to me (not quite an apology) explaining that she had never be presented with the symptoms of a brain tumour which explained why she had failed in her diagnosis!
I was admitted immediately to the National Hospital for Neurology and Neurosurgery where Mr Neil Kitchen operated to debulk the tumour. The whole tumour could not be removed as it would have caused permanent brain damage and had infiltrated too deeply. It was thought that I had had the tumour for ten years before it was diagnosed (they could tell by the size and shape).
When I awoke from the operation I was in Intensive Care, completely paralysed down the left-hand side of my body. Consequently, this meant I was in hospital from the start of October until the end of December 2006.
I was lucky to have in-hospital rehabilitation in a special unit at the National Hospital, and was given extensive physiotherapy, speech therapy and occupational therapy, as well as psychological support, to start to recover any movement and ability to walk, talk, swallow or move any part of my left hand side. I could not eat so had to be tube fed, I couldn’t swallow my own saliva and I had (and still have) no sensation of hot or cold, wet or dry on the left side of my body—a condition known as Wallenberg’s Syndrome and my left eye had a nystagmus which made it hard to see clearly or focus. My left eyelid also drooped.
Complete lack of community rehabilitation/aftercare
Since leaving hospital I have experienced a complete lack of support and joined up care. Despite the much appreciated care at the National Hospital, I had to request every 3, 6, annual and now bi-annual follow up scans and blood tests. They failed to put a regular recall system in place! Thankfully I managed to obtain my Consultant’s secretary’s email address and she and I remain in regular contact… She sent me every blood test form when I requested then, I arranged for blood tests to be carried out by my GP after which I could book an MRI scan at the National.
The year following my operation I had Gamma knife treatment on the remaining tumour (and subsequent scans have shown that the residual tumour has not grown). This was conducted by my National Hospital Consultant but at a private hospital (funded on the NHS).
One of my vocal cords was paralysed so I had a medialisation operation (at an NHS hospital in Brighton) which allowed me to speak again. But sadly I then had two or three speech therapy sessions at a local hospital, that were unproductive.
After that, no care package was put in place and I was on my own. I am very fortunate to be educated, articulate and capable of seeking out the necessary rehabilitation—so goodness knows what someone without the capacity or skills (or money) would do?
In the twelve years since my original diagnosis and operation I have developed a plan of recovery. It has been very largely successful:
I found a physiotherapist who specialised in neurological disorders and organised 6 months of private, one to one sessions with her. I soon realised that I would need to do more than this. So for 12 years I have done and still do a private Pilates session every week to build up my core strength and balance to such an extent that I can now function really well. I still have some balance issues, find it hard to walk downstairs or down hills without holding on, can’t walk over rough ground/cobbles, run or dance. I have periodic physio sessions when my left hand side lop-sidedness affects my back which has on two occasions gone into complete spasm. I also have a static exercise bike and cycle for 20 minutes a day.
I have ptosis of my left eyelid after my paralysis, and I have had two privately funded non-surgical facial aesthetic treatments to address these; a Plexr (plasma technology) treatment and a non-surgical thread lift. Neither were particularly successful and any effects were short-lived.
In the subsequent years the effects of my medialisation began to wane and was having to strain to speak, especially in loud places, on the phone or in meetings, and had to raise it to make myself heard. As a result, I would lose my voice. Late last year I had a procedure at a private hospital to inject a special dermal filler into my atrophied vocal cord and this was followed by intensive (private, again!) speech therapy to relearn how to project. The latter has been very successful and I am now able to speak with greater ease and without sounding like I have permanent laryngitis.
I run my own business, work full-time and am, I hope, an example of what can be achieved with a positive attitude and bloody mindedness to get a diagnosis and recover and then not be labelled a victim or a sufferer! It has taken time and energy to develop my own care package, navigate to find the right specialist services and fund it all myself. I have had to learn to accept a new me, but continue to work hard on my rehabilitation to this day.
In hospital rehabilitation—the start of my return. How a team of ‘ists’ helped me reach a new normal
My rehabilitation started as soon as I was out of ITU and on a general ward at The National Hospital. Partially paralysed, voiceless and without the ability to swallow, I was visited daily by a speech therapist who gave me a series of blowing and mouth shaping exercises to start with. I had to blow through my lips or through a straw; I had to whisper s and p, and l sounds to move my mouth and my deviated tongue into the right position several times a day. My parents who visited me daily became my voice coaches and encouraged me to persevere. I sounded like a wheezy pensioner with laryngitis, but I persevered!
My physical mobilisation started at that stage too. I was so dizzy that any motion made me feel sick, so to ‘help’ remedy this I was guided by a physiotherapist on the ward to swing my head from side to side—it felt counterintuitive but it was supposed to help. It didn’t, it just made me feel motion sick and to this day fast head movements continue to have the same effect! I was also given a zimmer frame and encouraged to shuffle to the toilet rather than using a bed pan, so I dragged my half paralysed self to the loo—it was quite a struggle and at that stage I hadn’t discovered my teeth gritting determination needed to achieve recovery.
This bedside activity continued daily until I was moved to the National’s specialist residential rehabilitation centre on the same hospital site at around six weeks after my debulking operation. Then the work to ‘rebuild’ me began in earnest. I had a daily time-table of activities with a teams of ‘ists: a speech therapist, occupational therapist, physiotherapist and a psychologist. Every day I would visit the treatment rooms of each of the ists in turn and was expected to carry out their ‘homework’ in between sessions. I would push my zimmer frame off to see Luke my speech therapist to incrementally build on the whispering and wheezing until I could approximate speech, and move my tongue out of the way to allow me to form words.
Luke also taught me to swallow again and gave me back my dignity. Until that point I had to carry around a sick bowl into which I could spit saliva which I couldn’t swallow! Luke took me to the imaging suite and showed me on a large screen the muscles involved with swallowing and encouraged me to practice turning my head to one side (the left) to allow the easier passage of my saliva. He also gradually introduced a graded system of liquids I had to learn to swallow; from the most glutinous jelly, through a range of ‘drinks’ until I could manage fruit juice and eventually water without choking. I was still being fed through a peg line into my stomach so this was the first real food I had ingested for weeks and it was like ambrosial nectar—and also signalled the start of feeling more human.
Once I had mastered the art of swallowing, I was offered liquid food at meal times but trying to swallow mashed potato with gravy was the most demoralising experience, so my family started bringing in pureed foods and soups into the ward for me instead. It has to be said that the dietitian’s idea of rehab food left a great deal to be desired—although I appreciate that stretched food budgets were probably to blame. However, while on the rehab ward I hatched the idea of writing a menu of pureed foods, and went as a far as requesting a meeting to discuss this with the dieticians. I must have been feeling better!
Luke also made me feel like a ‘real person’ and not a patient. As my speech began to improve we talked about ‘real subjects’ and it helped me start to put my situation into perspective. He treated me as the person I had been before; a woman with a successful career and he even asked me for advice about furthering his own career. I felt respected. It helped me more than any other therapy I had.
The physio team had a gym in which to work, and there were two lines of therapy couches along each long side of the long room. Next to each was a series of Swiss balls and hand weights of varying sizes which we used during the daily mobilisation sessions. There was also a rank of exercise bikes on which I was expected to sit and pedal to mobilise my reluctant left leg—and to get the blood pumping round my couch potato of a body. For others who were more immobile than me there were up-righting planks onto which they were strapped, and hoists to swing them from wheelchairs onto the couches for massage and flexing sessions.
There was a painted line down the length of the gym and every day I had to walk along the line to see how much more accurate my walking was becoming as my muscles and core were able to hold me straight. Even at the end I couldn’t walk along it without straying… and to be honest I still can’t! I looked like a drunk at the start of the sessions however, wavering and weaving from side to side, and now, when I pull in my core I can control that! But it has taken years of Pilates to achieve that.
I decided at that stage to ditch my zimmer frame and try and walk from the sessional rooms, and the ward which was all on one level. My frame resembled a bat wing/roll up umbrella and had a little pocket at the front into which I put my spit bowl, a tissue to wipe up my dribbles and my daily timetable! So I stuffed these into a hand bag, and must have looked quite a sight trying to walk in straight line, in my track suit with a hand bag slung over my shoulder pulling me off balance. But the fact is I was trying to regain some semblance of looking like a ‘person’ rather than a patient.
It was at this stage that I started to put on makeup every day again—and my family organised for my regular hairdresser to come into the hospital to wash and blow dry my hair—it was a wonderful gesture on his part as he refused payment and it humanised me in the most emotionally satiating way imaginable! I also had sessions with the ocular team to try and address my nystagmus and my continuing dizziness but this proved less easy to resolve.
Towards the end of my time on the rehab ward I started attending more occupational and physiological sessions to prepare me for life as a new me when I returned to the real world. I had to increase the dexterity and fine motor skills of my left hand during these sessions. My physio took me up and down the concrete stairs between floors at the hospital and when it was deemed safe enough, we walked to the nearby Brunswick centre for a trip around Waitrose! Life beyond the safe walls of the National rehab unit was beckoning.
My mental dexterity was also addressed as adapting to a ‘new me’ was a challenge at times. There were a few occasions when I was left weeping into my lap when I struggled to accept that I was going to struggle… but in time I learned to rail against the struggle, to dig in, to be determined and to grit my teeth to ‘prove’ that I was able, not disabled by the paralysis. However, it took time to reach that level.
After three months in the hospital and on the rehab ward I left the National and it was only at that stage, when I started to try and piece together an outpatient rehab programme for myself that I really appreciated the amazing support system which had been gifted to me during my stay. I have recently read a book by Melanie Reid, the Times journalist who was paralysed in a riding accident. In her Spinal Column in the Times and in her subsequent book, ‘The World I Fell Out Of’, she charts her rehabilitation in a hospital spinal unit and there were so many parallels and incidents I recognised in my own rehab, that it made me laugh out loud in recognition. The ‘ists’ who worked as a team to help me, and Melanie, and people like us were so instrumental in helping me to recover every aspect of myself, and without them I would not be able to work full time, function so successfully and not be a burden on anyone… the healthcare system, my family or the wider community.