Her story
My story started in 2011. I had developed loss of hearing and tinnitus in my left ear. It was not too bad, and I could have put up with it, except that I was teaching 16+ students who mumbled.
My GP arranged a hearing test and an MRI (just in case, as it is unusual to develop unilateral hearing loss). No problems were detected on the MRI, and my hearing loss was judged to be borderline, but I started to wear a hearing aid on the left, it helped.
Fast forward to 2016, when I developed phantosmia – the GP again sent me for an MRI. This time, they detected SS; it was there in the 2011 MRI, just not looked for.
I was referred to a neurologist and had a full head and spine MRI plus a 4D CT angiogram (no lumbar puncture). These showed extensive hemosiderin throughout my brain and spinal cord, but no bleeds were detected, nor were there any abnormalities seen that could be the cause of the SS. At the time, the only injury that I could think of was a fall that I had had in about 1990 that resulted in extreme flexion of my neck – it was excruciating and followed by numbness for a while. X-rays showed only muscle damage (I had to wear a collar for a while). Mr Silver thinks that this could be the cause. I have had no further scans. The only other thing that I can remember that may have caused the bleeding was a fall that I had in 1983 when I slipped on ice and landed on my coccyx – the pain was unbearable, but I just got on with things. I have not mentioned this to the Neurologist, but I did ask Dr Levy, and he thought it was a possible cause.
I have asked about Ferriprox and follow-up scans. Mr Silver has discussed my case with other specialists and ruled out both.
My symptoms:
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Hearing loss on both sides – much worse on the left.
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Tinnitus – mainly on the left side.
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Bowel and bladder dysfunction.
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Anosmia.
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Occasional phantosmia.
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Reduced sense of taste.
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Hyperhidrosis.
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Unilateral pseudo sciatica (left side).
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Neuropathy pain in my back left arm and left side.
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Myoclonus.
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Fatigue.
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Mild ataxia.
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Intermittent headaches.
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Occasional cognitive impairment.
There may be others which I have not been clinically tested for.
Current age 65 and fortunately (mostly) retired. I still do a small amount of tutoring (GSCE and A Level Biology).
Patricia Hardman