Meet our lovely friend, Ian. In his blog post, Ian writes about his ataxia journey.
Younger days: For as long as I can remember, I’ve always been nervous about speaking publicly, even though I have been confident (sometimes over) in my own abilities, and generally, I have been above average in regard to practical tasks.
Family history: My mother, aunty (my mother’s sister) and my older sister Mary had speech problems. My father and his side of the family had no difficulties, as did my elder brother Anthony.
My speech problems: As I said, I have always been nervous about speaking publicly. But I had many occasions in my Civil Service career to brief staff and management. In general, because I knew my subject, I managed okay. My Essential Tremor manifested itself in my fifties. My right hand started to tremble, and my voice nervousness became more noticeable.
General health: Has been good up to being about 70. I have always played sports being an above-average footballer, badminton and squash player. At 70, I started experiencing hip pain, but because of the Covid pandemic, I had problems getting a doctor’s appointment. I eventually got a referral from my GP in February 2022. However, by that time, the pain was unbearable, and the waiting list for treatment in the UK was getting longer and longer, so I decided to seek treatment PRIVATE. I got some financial support from Benenden Healthcare, who pay for some diagnostic analysis. It is now February 2023, and I’ve still heard nothing from Salford Royal, to whom I was referred.
I visited Spire Hospital and was examined. They conducted some movement tests on my hips, sent me for an MRI scan and determined slight arthritis in my hips, but the real problem was Spinal Stenosis. I was referred me a consultant in Spinal surgery, who in turn sent me for normal x-rays. I was told I would need a decompression and fusion, which would be costly (£20 – £25,000), but first (because of my Essential Tremor), he would need to get the all-clear to operate from a Consultant Neurologist, so he referred me to a professor at Ortho Centre attached to the Spire hospital. The professor sent me for an MR scan of the brain, and although this did not show any abnormality, there were clear signs (speech and balance), leading to a diagnosis of Cerebellar Ataxia. The professor confirmed there should be no problem operating to relieve the Spinal Stenosis.
I went to see the surgeon again (this time with my wife, Sue). He left us both with the impression that, although he would operate, the cost would be very expensive, he would need assistance from another spinal surgeon, and there was a distinct feeling of reluctance in his demeanour. We both came away unhappy and with the sense that we needed a second opinion.
At about that time, a friend was having a decompression operation at the Spire carried out by another consultant surgeon. I paid for a consultation with him, he was far more positive and said he would carry out the decompression but didn’t think Fusion was necessary. In order to check, he sent me for a bent posture x-ray. Seeing that, he confirmed that Fusion was not required. The consultation was in mid-August 2022; I was emailed details of the procedure and price (£10,140). The operation was carried out on 14 September 2022. The pain relief in my hips and down the back of my legs was instant following the operation, although I did have back pain for some months and still experience discomfort at night, causing sleep problems. Overall, I am happy with the outcome and need to be patient regarding recovery. After saying that, since the operation, my Ataxia condition seems to have accelerated.
The Ataxia continues to present problems, especially in terms of speech. And I am still experiencing a dropped right foot caused by Stenosis, but the NHS has stepped up, and I am now having speech therapy, Physio for my foot, and six monthly checks for my Ataxia.