Waiting For The Professor in Holland
31 October 2005
I have been diagnosed with a aneurysm to the brain about 2 months ago and I was told that it was about 3mm but after being admitted to the Queen Elizabeth and on a neurology ward everything had happened very quickly on the Monday 19th September 2005 blood was taken from me for tests, Tuesday 20/9/05 I had a cat scan and on Wednesday I had an Angiogram.
It wasnt until Friday 23/9/05 that I actually saw a Consultant or Neurosurgeon who told me that the x-rays would be sent to a professor in Holland and that he would have to apply for funding for if or when surgery would be done and I was told not to worry and that he had no idea how long all this was going to take. This now put a lot of strain on my life as not only was I worried about whether or not funding would come through l also had to intense anxiety of having to be told that neither would come through as the neurosurgeon said that he had never performed a bypass he had assisted the professor but had done the proceedure on an animal hence him having to contact this proffessor.
Anyway I had to adopt a brave outlook on everything, I did not know anything about aneurysms but can remember a good friend having an aortic and then stomach aneurysm and having to have an operation she however made a very good recovery but bearing in mind that the brain was much more complex. I am incidently 44 yrs old and I work as a Claims Advisor for a very busy motor insurance department. I recall feeling extremely tired at the end of most days and constantly carried a supply of paracetamol to control headaches but I had put this down to stress and thought about leaving my job and finding something less stressful. I can remember feeling so run down that I used to think somewhere in the back of my mind that I was going to die what of I did not know all I knew was that it was just not explainable why I felt like this.
It took about three weeks since leaving hospital to do my own research about brain aneurysm and it was only then I realised the seriousness of this disease, words now fail me as I typing up this e-mail nothing could ever have prepared me for what I was to research. Doctors told me to carry on as normal but I can only describe that phrase as an insult as very little was explained to me about this illness although I remember one doctor on the ward describe this thing as a time bomb in my head.
Any how trying to tell my family about this was ok at first but then I found my self not sure of anything anymore only getting more and more depressed as I had not been contacted by any of the doctors this included a consultant at the City Eye Hospital as I was sent for an MRI scan as over the yrs my eyesight in the left eye had got worse and I was going to a local hospital to where I lived on the advice of an Optician who was obviously worried about my deteriating sight.
I had asked to go to City Eye Hospital as I was not happy about the amount of times I was sent to my local hospital for eye tests and no MRI scan was done and they kept saying that they could not find anything wrong with my left eye but if they had investigated further they would have discovered that there is an aneurysm and this was lying on the optical nerve of the left eye.
I am truly fortunate that my aneurrysm has finally been discovered unruptured but my difficulty is struggling to get an update on how far things are progressing on the part of the neurosurgeons I have written a letter and made several phone calls to the Neurosurgeons Secretary I have not received any phone calls or received a letter from them only that the Secretary says the letter has been received and that once again I would receive a phone call in the afternoon once she had spoken to the doctor and as usual no phone call was ever made even though I was not able to speak to the neurosurgeon just out of politeness they could have written to me as I since told the doctor at the Eye hospital patients had a right to be informed of what was happening if only to give an update and when I was sent home after tests any Angiogram my letter stated that I would receive an appointment to see the doctor in 1 month this did not happen instead I am chasing by phone and writing letters to add to my distress.
The doctor at the eye hospital listened to me as I told him about the difficultys I was having trying to obtain a follow up appointment with the Neurologist and he himself called his Secretary and then virtually demanded to speak to the neuro doctor as he was not getting anywhere with her and he then relayed back to me that funding was not a problem just that they were still waiting to hear from this Professor in Holland and told in somewhat terms that the operation may be too difficult to perform and that it could still take a long time before the Proffessor contacted the Neuro doctor.
Where did that leave me obviously feeling no better off as again I was told to carry on as normal as they both did not think the aneurysm was going to rupture for now and no one in my family understands this either least of all my four grown children who ages range from 23 - 19 they are old enough to take on board everything. As for my work colleagues they all want to know what is going to be done. I am now unable to lead a normal working life I do not know what the future holds, and can only go to the hospital support group as this may help me come to terms with whats happening, my feelings which I can only describe as depressed as if I had Cancer I would have been told exactly what was going to happen and what treatment I would receive. I can only say how let down I feel and as much of a fighter I am I will not just give in I will fight this as long as I am alive and why should anyone else suffer unnecesarily.
Discussion, comments, or questions: Janet Jones
© Copyright 2005 Janet
Jones
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