I wonder how many people reading this article have sleep-related problems, or know of someone with such problems. I’m not talking about the ‘normal’ struggles with disruptive sleep patterns or sleep apnoea and its associated problems. You see, my wife of nearly 18 years developed problems with her sleep 2 years after we got together. She was finding it difficult to go to bed and sleep through until morning. The usual pattern was for her to wake 3 or 4 times a night, obviously leading to tiredness the following morning, and on really bad days throughout the whole of the next day.
Some of her symptoms were listlessness, lethargy and an inability to apply herself to even the most menial of tasks. This particularly bothered her when it came to her job, which she had always been so dedicated to and exceedingly competent at for 16 years. It was this lapse that led to the first concerns.
Ann had struggled to rid herself of a chest infection just after Christmas 2007, and it was first suggested that she may be suffering from post-viral fatigue. As the days became weeks, and there was no real change in her condition, further visits to our local GP seemed to indicate that Ann may have developed depression. I will state categorically here and now that I do not have any issues with nor do I lay blame at the feet of any member of the medical profession. Indeed I applaud them for their persistence in trying to deduce the problem. It was quite a natural assumption because Ann’s condition was quite symptomatic of a patient with depression.
However, Ann's employer expressed deep concern for the rapid way in which my wife’s abilities had been affected, and so instigated a process of investigation to discover the root of her symptoms. By now Ann and I had also done our own research, via the internet and through discussion with our GP, into the possibility of Ann having Chronic Fatigue Syndrome. Thus began a year of almost constant hospital outpatient visits, MRI scans, CT scans, ECGs, blood tests, X-rays – in fact, you name the test and my dear wife probably went through it.
Let me give you a little background on Ann’s condition. Around 1990, Ann started to complain that her ‘migraine’ headaches seemed to be almost constant, and there was some tiredness associated with them. She had tried various medications from the doctor, all to no avail. She was referred to the Neurology department at the Royal Hallamshire Hospital and underwent an MRI scan. It was discovered by the neurosurgical consultant that Ann actually had a birth defect, causing pressure on her spinal cord. The prognosis was as bad as it could be, and a decompression operation was suggested, which involved removing a small section of bone from the occipital plate and also from 2 of the cervical vertebrae. The consultant told us that the suggested operation only gave a 50/50 chance of survival, and even if the operation proved to be successful, there was still no guarantee that there would be no deterioration in the future. So given this original prognosis, I consider myself blessed to have had 18 wonderful years with Ann, and I know that the strong faith we both had will carry me through this time.
Back to the present, and we were to discover that every single test that Ann underwent, came back clear or positive or as nothing untoward. It became very frustrating, because Ann’s condition seemed to be worsening but there was absolutely no apparent reason for it. Over the past 6 months, we saw quite a drastic deterioration, and in addition to everything else, when Ann was at her lowest, her speech slurred occasionally, and she did lose her balance once or twice. She also began to forget some of the simple things such as where she had left her purse, or where we were supposed to be going that day. Our fears of Alzheimer’s were quickly put to rest by our GP, and in the fullness of time, Ann was discharged from 2 of the hospital departments she had been attending.
It was now felt that Chronic Fatigue Syndrome could be ruled out, and appointments were being made to visit the sleep study clinic to test for sleep apnoea. She had already had two oximetry tests, which had proved inconclusive. Around 3 weeks ago, towards the end of February, Ann began to accept that depression could be playing a part in her worst symptoms, she was given some low-dose antidepressants which did start to help, although we knew it would be a long-term thing. At around the same time, her condition took a drastic nosedive, and her memory problems became worse, and she would start making random statements or asking random questions. She also started to stumble and fall a lot, sometimes when out shopping by herself, and a neighbour or someone else would come to the house to tell me she had fallen, and I would go and help her home. The last incident occurred just a week before she passed away, and staff at the local shop had called for an ambulance. She had a full check-up in the ambulance, where they discovered that her blood sugar was low and her blood pressure was a little high, but she said she did not want to go to the hospital, and so they brought her home.
On Monday, March 9th, Ann had a slight tumble in the kitchen, but fell forward onto some clothes without hurting herself. Then she tried to do a little work upstairs but felt exhausted, so she came and rested. After lunch, she seemed to improve and got quite bright and chirpy. She went into the kitchen to make a cup of tea and never came out under her own strength again. I heard a fall and went in, and Ann was on the floor, looking very confused and upset. She thought she had hit her head but couldn’t understand how. I held her and she didn’t want me to phone for an ambulance, but being extremely concerned I rushed to get the phone, and called them immediately, as I held onto her. She lapsed quickly into unconsciousness as I spoke on the phone. Her body had become quite rigid, and she was in some kind of seizure. I managed to open her mouth and she vomited, and she then fell into a very deep sleep, with breathing becoming difficult with loud snoring sounds.
The paramedics were there within minutes and although they couldn’t intubate her because she resisted, they managed to place an oxygen mask over her mouth. We rushed to the Northern General Hospital and straight into the emergency department. As they started to examine her, I was taken into the relatives’ room to wait. As time went on, the doctor came out and told me that they had to sedate Ann to intubate her to assist with her breathing. I had some family with me by now, and on returning from a brain scan, I was told that they had discovered a small subdural haematoma. The team then consulted with Ann’s neurosurgeon from the Royal Hallamshire Hospital and it was decided that the haematoma was so small it could not have caused the comatose state she was now in. Operating to drain the blood would not have woken her at that stage.
We were then informed that she would be taken to the Intensive Care Unit, and an hour later we went to see her. By now she had been sedated and paralysed to try to reduce the pressure on her brain, and also her blood pressure. That evening, we went home at the end of visiting time, leaving Ann in the care of the ICU team. The next day we went back to the hospital at 2pm, to be told the sedative had been withdrawn at around 11am to allow her to wake naturally.
Later that evening, the consultant took us to a relative’s room and informed us that the prognosis was not good, and it was almost certain that Ann would never wake up, nor recover. They did go into some technical detail and explained the reason for her comatose state. At about 10pm, we had a consultation with the organ donor coordinators, who told us that there had been a decision made earlier in the day to remove life support. We were in a state of shock but accepted the inevitable and discussed the details of organ donation. At around 1:30am on the morning of Wednesday, 11th March, life support was withdrawn, and within 5 minutes, my beautiful and precious wife Ann slipped away from me, surrounded by loved ones.
The following day I had a call from the coroner, who explained to me that Ann had not actually banged her head and fallen, but that the condition which had necessitated the original operation had been the cause of death. What had in fact happened was that Ann’s brain had moved by 3 centimetres, trapping her brain stem and causing brain death. It could actually have been this that caused the haematoma, which caused Ann to think she had banged her head.
The official cause of death recorded on the death certificate is Arnold-Chiari Malformation.
Now I am not qualified to go into the full details of this condition, but in effect, it is a congenital birth defect which initially caused Ann’s brain to press on the spinal cord. I have been told by the consultants that the result was inevitable and not preventable or reversible. The way it was explained was that the brain had moved over the 18 years since the operation, causing stretching and strain on the mid-stem, and eventually leading to the 3cm movement downwards towards the spine and the brain stem. There is a lot of information about this malformation on the internet, and I have found it a great help to look over some of this. I would not have wanted my wife to have suffered, and the effects of the condition could have been pretty horrific and distressing, had she lived.
So what is my purpose in writing this blog?
It is not
• to lay any blame whatsoever at the door of any person connected with Ann’s case,
• to illicit sympathy, or
• to scare people.
It is
• to highlight this awful condition which I had certainly never heard of before, and which had so many of the medical profession confounded during the investigations.
If, by Ann’s sad and premature death, one person says to their GP, “Do you think it could be …?” or if one consultant or GP stops for one second and thinks, “Wait a minute …”, then maybe Ann’s legacy in death might be life.
God bless you all.
Take care
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