This is Alan, as you can see from his attire, he was a keen fisherman. He loved the outdoor life. His other main hobby, up to a couple of years ago was going out for hours on end with his faithful Springer spaniel Beau. He trained him from a pup to become a first class working dog, they together won many trophies. In the last year, due to his breakdown and being unable to work, he latched on to his computer, and the internet. From there he set up his own webside and researched the history of the village we have lived in for the past 17years. He then went on to writing the history of a close friends great great grandfather, who was a Bare Knuckle Fighter. He then did his mothers family tree and traced back to the 1800's. He thrived for knowledge which was helping to cope with his breakdown. Time ran out for him, and the saddest thing of all was that he still had so much to do..
Alan was 46 years old, we had been together since I was 14 and he was 16years old. Thirty years together, 25 years married. We have two boys James, aged 22 and Adam, aged 12.
For 6 years now Alan had been having problems with headaches, eye pain, neck pain. Nothing was found. Always the same story, which in the end drove Alan to a breakdown back a year ago. He was convinced he had something wrong with him, but nobody else did. I didn't because the doctors always gave him the all clear. While back one year ago he was rushed to hospital with what was thought could be a heart attack. He had some tests, and then they said it could have been a blood clot which he was given blood thinners for this over the next 12 hours. He was sent home with a clean bill of health. The next two weeks he got more and more depressed and finally went to his doctors, who put him off work and put him on Amitriptyline. He was off work right up until his death on 27th March.
Back in November he was making some lead weights for my sons diving belt and was overcome by fumes. He was rushed to hospital and some blood tests were taken, and X rays then did mention that they might take a brain scan, but alas they didn't. He constantly complained of a severe pain behind his left eye, could hardly see. After seeing doctors, which we had no joy, we were advised to go to his optician which we did. He then wanted a second opinion and wrote a letter to his doctor to be passed to the hospital. That was in Novemeber 99, the hospital wrote back with a appointment for August 2000, even though his doctor wrote an urgent fax.
Alan persevered with the pain and discomfort for another month and just after Christmas he went back to the optician to get some new glasses. When he tried the glasses on his vision was still very blurred. He told the optician who then sent him to his larger branch who had more detailed equipment. They found something wrong so wrote another letter to his doctor to forward to the hospital. This time he had an immediate response. He went along a couple of days later for a fields test. That was on January 22nd, they then gave him a CT scan and he then had to wait a further 2 WEEKS for the results. That was the news that in a way he had always expected to get but a long time ago. They said he had a tumour on his optic nerve, he was then referred to a neurosurgical hospital.
He had to wait a further 2 weeks because his letter had got lost, so he chased up the hospital and had it faxed immediately to the neurosurgeon. A week later he went in for tests - after 4 days they did an angiogram and found that he had a giant carotid artery aneurysm.
They could not remove it because it was far too big. So they would look at the options. This was on the Friday. On the following Monday he was told that they would insert balloons to relive the pressure on the artery walls. They told him that they were so surprised it hadnt burst yet, and couldnt get over how large it was. They told him the procedure was life threatening etc. And guess what, they sent him home that night for 3 weeks. Saying that because it hadnt burst it was not a true emergency. He waited until Friday 24th March and went back in ready for the procedure on the Monday.
He was given the all clear to walk around the hospital and even visit the Boat Race on the Saturday, because he was no risk. Then on Sunday evening at approx 10.15 he was found downstairs in the toilets of the hospital where he had suffered an arachnoid haemorrhage. By the time they got him to theatre he had had a full bleed. When I arrived at 11.45 he was on a ventilator and basically I was told that he was brain dead. They took him off the ventilator at approximately 4am and I stayed with him watching him basically suffocate for a further 3 hours and there was absolutely nothing I could do for him.
I never understood what an aneurysm was, I never believed he would die, he wouldn't let me, he would joke about things. Yet I know he must have been terrified, and I believe that his stress helped in his death that night. If only the doctors had taken time to explain, had taken him seriously. If they had he would be here today and I would be with him. After all you don't tell someone that it is life threatening etc and then send them home for 3 weeks. That's why we never believed it was. You don't play with someones life like that do you?
Time and memories are all I have now, I am reading everything I can on aneurysms. I want to know everything to help me understand why they are taken so lightly and yet they can cause death so easily. My husband may have just been another statistic to the medical profession and yet he was a father, a son and most of all he was mine.
Update 29 May 2000
Took Adam my youngest to the eye hospital on Wednesday 24th for a second opinion on a problem he has had in his eye, just before Alan his father was diagonosed as having the aneurysm. They have now sat up and listened, Adam too has been telling them about his headaches, not in the same place as Alans, which originally they put down to - maybe it was school, maybe he was stressed about his father, but these started just before his father was diagonosed.
They have now made an urgent appointment with Great Ormond Street Hospital, London for a MRI scan tomorrow. I am trying to look at this is just a precaution, but the fear is there in my heart and head. I will keep you all updated on the findings.
Update 10 Jun 2000
Firstly thankyou to everyone who sent their best wishes for Adam and the concern you had for him. Today at 1pm I had a telephone call from his doctor at Great Ormond Street to say the his MRI was all clear. The relief and emotion all came to me at once. He will now be referred to a paediatrian to look into other areas of his problem.
Also through all the information you have all given me throughout the last weeks, I finally sent off my letters to the hospitals where my husband had his so called treatment. I have already had one letter back to say that an immediate investigation into the facts will go ahead.
These investigations will hopefully in the end make the people concerned in this matter realise what they did not do. Eventually as I know this will be a long process, it will bring to light, that when an aneurysm is found that no chances with that person should be taken so lightly. You see how I think is that nobody has the same aneurysm, sometimes the symptoms are similar, but everybody is different. Everyone with an aneurysm should be treated as an individual and not as a statistic. I will as time goes on let you all know how everything goes, because without the help and compassion I have had from everybody in the group, I don't think I would have come this far since I lost Alan.
Update 28 Aug 2000
Its been a time since I updated my narrative, many things have been going on in my life since. I recently had a hysterectomy and am still at this time convalescing. I want to thank all of you that have helped me through these last 5 months. I have made many friends who are very special to me and without them I feel that I would not have made it this far.
Adam is doing fine, he still has headaches but not as much, it downs to stress now. He still cannot talk to me about his feelings in respect to the loss of his dad. Nor can James who even at nearly 23 years can't talk to me, there are so many things I want to ask and say to both of them but none of us are ready yet. This doesn't help me at this time, but as I have realised they must deal with it in their own way, soon they will be able to come to me and open up their hearts and then I can to them.
I read like you all do the narratives and updates, sometimes I cant associate with any because my situation is different, and although I want to give advice I feel that if they know my situation it will not help them at all.Then all of a sudden there will be someone saying how SCARED they are, and they cant talk to their family. This rings an alarm bell with me, because that's what happened with Alan and me.Its then that I feel I must speak to them, and hopefully my words are a comfort to them, because I really feel attached to them at that time.
I still feel that if Alan could have said to me on that day Sharon I am so scared, stay with me, things may have be different, maybe not. That's one of my nightmares among many. The guilt is still there, the IF ONLY'S are still there. This I know must happen with everyone that loses a loved one, because I feel that everyone in some way ponders on those words.
Every minute of the day when I see, hear and do things memories flood back. I try to go to bed but my head doesn't let me relax, it keeps talking to me all the time.I don't watch television anymore because anything I see I associate with Alan. I know time will heal and then all my memories will be warm ones, this I wait for.
I say to everyone that we all need someone to talk to, if it isn't your loved one, or family then even a stranger because its the talking that keeps you going, and helps you cope with whatever your situation.
To everyone that has shared their experiences and most of all their compassion with me I thank you most sincerely.
Update 29 Jun 2001
It has been a long time since I updated my narrative. Well it has now been 15months since I lost Alan, the bitterness is still with me everyday, and why this had to happen to him. Time heals eventually so people say, but I know I am a long way off from that yet.
My main reason for updating is that on Tuesday I went along with my nephew who just over about a month ago passed out and we think fitted, but he was unconscious for well over half an hour. He actually was in a hospital visiting someone when this happened, so he was in the right place at the right time. When he came round he remembered nothing, didn't even remember coming to the hospital or the people around him, this didn't last that long. The hospital took blood tests immediately as I think they were looking to some kind of virus. Nothing was found , but they were very concerned and told him that they would refer him to a neurologist ASAP.
The appointment as I say was on Tuesday and along I went. Scott my nephew is 21 so he is not a child, but an adult so with me going with him I explained that I needed to ensure that he was listened to and not just pushed through the normal regime in hospitals. I sat and listened to the neurologist asking Scott questions and really homing in on the fact that Scott had not had any more episodes after this one. Then I heard those famous words "Well I don't think you have anything to worry about", these words as you have read in my narrative were the sort of words that Alan had listened to for many years. I then put forward not just mine, but his mothers (who is Alans sister), his grand parents and of course myself and the truama we had all been through . Of course he then started to educate me (but of course this didn't work this time). My education has come from all of you and what I have read over these last 15months on this site. He was telling me that Aneurysms are not hereditary, not associated with fits or headaches...
Well I couldn't believe what he had said and my thoughts then were that whilst our Neurosurgeons are still looking at I would say old statistics on Aneurysms more people in this world everyday will be joining this website and trying to understand what went wrong and why didn't someone in the medical profession pick up the warning signals. My last comment to the neurologist was telling him that whilst I did not think that Scott needed an emergency MRI scan like Adam needed I did wonder why our NHS service of which we pay into could not offer at least a Brain Scan... His closing words were maybe it would be a good idea to have a Brain scan and also measure his Brainwaves...
This Scott will have done on the 12th July....and this is something that I didn't demand for Alan and its because of that that I know that I will now be listened to and not just believe in the medical profession's general advice. Scott is OK now and I hope that from these tests everything proves to be fine and that his seizure was just a one of. If he does have any further seizures or blackouts then naturally I will fight the medical profession again and again.
Thank you all for listening to me and just to say keep telling your doctors, consultants what you are experiencing, MAKE THEM LISTEN TO YOU, because you know your body better than anyone, as Alan did.
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