19 April 2004
Hi, my name is Stella and my much loved partner's name is Richard. I had never heard of an AVM before 7 April 2004.
Myself and Richard had woken up at around 9.00 (both being on holiday from work) when he suddenly had a splitting headache. I went to get him some tablets but he was by then screaming with pain and his speech had started to slur. I phoned an ambulance as I believed he may be having a stroke and the paramedics arrived 10 minutes later saying that he was probably suffering from a stroke - they asked him to squeeze their hand and he could only manage a squeeze on the right side and his eyes were not focusing.
We got to the hospital and they took him into resus and then for a CT scan and angiography. The doctors then came and told me that he had suffered a massive brain haemorrhage due to a collection of AVMS in his brain and that he had a tremendous amount of blood in his brain and it was critical and he could die.
He was then operated on to reduce the pressure on the brain and then had another brain surgery to evacuate the blood clot. A third brain surgery was done to put in a drain to stop more blood in the brain. He was in ITU where he was on a ventilator but they decided to see if he could breathe for himself and he could. After a week he was transferred to a neurological ward where his breathing and heart rate were stable. They stopped his sedation so that they could see what the damage was but he has not regained consciousness and has now been in a coma for 2 weeks. He has suffered a setback in that he has now developed a chest infection and has been put on antibiotics and has been given help with his breathing (CCAP) and this is where we are at the moment.
Before all this happened Richard didn't suffer from much ill health apart from the odd headache but he was very clumsy, always dropping things and his eyesight was very bad. I am just wondering whether this could be a symptom of the AVMS.
I am absolutely stunned by what has happened in the past 2 weeks and am just starting to come out of a daze and face the reality of the situation.
I found this website and wonder if there is anyone out there that has suffered a similar fate that have survived and recovered. The doctors are not very hopeful of him making a recovery and have told me to prepare for the worst because of the extent of the bleeding, although there is some slight movement in his face and mouth and sometimes with his reflexes. They cannot assess the brain damage because he is still unconscious and have said that he could re-bleed and deteriorate.
I would welcome any thoughts and suggestions.
Update: 1 August 2004
Richard has gone through so much in the past 4 months since his AVM Bleed that it is hard to recall everything. He has had countless bouts of pneumonia, MRSA, bleeding from the Lung, having an operation to have his feeding tube put into his stomach (peg), a blocked catheter and still he is hanging on.
I've since found out that he had a 1cm AVM located in his brain stem. He is now opening and closing his eyes, opens then when you call his name or when he is moved and has some movement in his legs when touched but I think this is reflex more than controlled movement but that is about all the response that he shows. He has lost so much weight and muscle that even if he wanted to move them I don't think he would have the strength to. However, I am trying to think positive and my man is such a fighter that I know he will not give in to this if it is in his power to do so.
My question to the family is how do you know when a person is no longer in a coma. The reason I ask is that Rich cannot move his limbs by himself but if you touch him he will move his legs in a jerking fashion. He also opens and closes his eyes in a sort of sleep cycle and will open them when spoken to, which I presume is a response so is he out of his coma?. I have recently taken in a portable telly and he does look like he is watching it as his pupils move in line with the movements on the screen. He is unable to talk because he has a trachy but does not mouth any words. He shows pain and irritation on his face when he is about to cough so he is anticipating but I really do not know if he is in a coma still or in a PVS.
We are waiting for him to go to a rehab unit but they will not take him until he is off antibiotics and oxygen and his temperature is normal (they are weaning him off both at the moment). However, he has very unstable temperature which he has had right from the beginning and I am wondering if this is due to his brain damage rather than infection. His AVM was in the brain stem which is near the area that controls body temperature.
Has anyone had any experience with being in a comatose state for this long (4+ months) and still coming out of it with good results?
Update: 27 August 2004
It is with the utmost saddness that this update is the final chapter in Richard's fight. After nearly 5 months Richard started getting very low blood pressure and problems with his breathing. He held on in there for 4 days but his poor body could finally fight no more and he died on Tuesday 24 August at 8.10am. His young life (36) was ended prematurely by this horrible condition that I had never heard of until April this year. The main cause of death was that the cerebellum finally 'died' and his body could not sustain life without it.
I miss him so much already but am talking to him all the time and am getting comfort from the fact that had he survived he would not have been able to move at all and could not communicate in anyway and that, I am certain, would have been much worse for him to live with.
Please remember him in your prayers.
© Copyright 2004 Stella Parsons
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