A1 / A2 right Aneurysm.: About four years ago, I... - Headway

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A1 / A2 right Aneurysm.

Beanosean profile image
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About four years ago, I started having a lot of pressure headaches around my right eye, accompanied with severe neck pain. After describing symptoms to my mother. She said "that sounds like the pain I was getting with my Aneurysm" . Off to doctors I went , when I asked Doc if aneurysm's were hereditary he laughed and said no. Prescribed cocodamol for pain. Over next two years visited him several times where he would shine his little light in my eyes and tell me I had no aneurism. I then thought maybe I should see someone else. Called the Doc's in the Oct and made an appointment to see a stand in doctor who was there that day. She sent me for a ct scan in the November. On New year's Eve I had a Tel call from my doctor saying he had some bad news and the scan showed I have a 2.5mm aneurysm and I would have to see a neurologist in Cardiff.

An appointment came through quite quickly to see a neurologist in Jan 2016. He told me the aneurysm was two inches behind my right eye and gave me the pro's and con's of clipping and coiling etc. Or the option of monitoring it for a few years. He also said that the pain wasn't the aneurysm which I find really odd as the aneurysm is behind my right eye and the pain is also, and in the right side of my neck. We decided to go for the coiling. However after going home and thinking things through I decided I would like to lose some weight and get fit so I would be as healthy as possible if surgery was needed. About a week after the appointment I called the neurologist and spoke to his secretary, advising that I would like to monitor the aneurysm for a year or so if that was ok? She replied yes no problem and would arrange a follow up scan for the June.

June and July came and went with no appointment. I called Cardiff to be told that the neurologist had left and they would get my details to the new one asap and have another appointment and they would get back to me that week. August went by heared nothing. Called in Sept and was told the new neurologist had also left and they would do the same again. I asked shall I arrange for an MRI scan with my own Doc in the meantime, so when my appt came through they would have an updated scan. Was told yes ok. Oct and Nov still no appointment so called Cardiff again. This time they couldn't find any details or record of me and would get someone to call me that week. During this time I arranged for an MRI in early Jan 2017. Heared nothing for another two weeks. Called Cardiff again. Again no record of me could be found but they would get someone to call me back that day. Two days later the neurology nurse in charge called to basically see what I wanted, what had been done so far etc. Explained all the above. She said ok as I am going for an MRI in beginning of January she would make an appointment with Neurosurgeon for the end of January. MRI went ahead as planned and week later appointment came through for end of January with Neurosurgeon. Drove to Cardiff for appointment to be met by nurse in charge saying that the neurologist had left and there was a new neurologist now but she wouldn't be looking at my scan until the following Wed. (Total waste of time). She advised that she would call me on the Wed or Thursday to advise what's happening. February came and went with a lot of calling and promises of call backs to no avail. End of March I managed to get the nurse in charge to call me back who asked for all my info again and what had happened so far. She promised to get back to me the following week as they still hadn't discussed my case. April came and went and for some reason I had a letter saying my angiogram ??? Had been cancelled. Managed to get nurses email address from another nurse and e-mailed her. She called and said they have discussed my case and the neurologist had written that week for another scan in June. The week after , the neurologist secretary rang asking me what's happening as they haven't had my scan results yet. June came and went . Emailed Nurse asking begging almost to please sort something out, or were they waiting for me to die before giving me a new scan. Was promised that when she chased it up . The neurologist had again written for an appointment for an MRI in July. Since then I have received an appointment to see the neurologist again in August. I have had another call from the secretary asking what's happening as still no scan results. I have also received a cancellation of appointment letter and another appointment date. It's coming to the end of July. Still had no scan appointment, guessing I'm going to have to cancel neurologist appt as they won't have up to date scan and will again waste my time. Somewhere amongst all these talks the nurse in charge said the reason they are having problems is because there's a shortage of radiologists in Cardiff so the scans I will have in Swansea will be sent to the neurologist in Cardiff to read then back to Swansea for the radiologist to read and agree with findings.

Im sitting writing this , with extreme pain behind my right eye , severe pain in my neck. I have also started having bouts of extreme tiredness where the only thing I can do is lie down really suffer neck pain , sleep for 20 mins and wake up with only slight pain in my neck and eye. Please please please can someone help sort things out. Please.

Cheers Sean Evans

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Beanosean profile image
Beanosean
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4 Replies
Alibongo60 profile image
Alibongo60

Hi Sean, contact your local PALS service, they are attached to every hospital and deal with complaints and enquiries. My appointment when my first aneurysm was discovered was delayed and I contacted them and shortly after my appointment came through, hope you have some success love Alice xx

Beppybutton12 profile image
Beppybutton12

Keep pushing for help your in the right don't give up go and sit in neurology and don't move till they see u a bit basic I know but you need help now and not later !!!!

malalatete profile image
malalatete

A severe pain in your eye socket over the side of your head and inot your neck where it meets the base of the skull sounds like it might be occipital neuralgia. That is caused by your eye nerves getting crunched ata the base of the skull where they come in from the spinal cord. It is debilitating pain, you will need heavy dose pain killers and something like tricyclic antidepressants may help to calm the nervous system down, as will ice packs to the back of the head.

2.5mm is a very small aneurysm - many doctors won't recommend that you clip/coil something of that size as the risks of surgery outweigh the risk of the annie. It might cause symptoms if it was right up against the eye nerve - but otherwise they will probably tell you it is an 'incidental' finding and to wait and watch.

That said your neurology team obviously need a rocket up their backsides....get in touch with PALS as suggested above and complain.

Celtic27 profile image
Celtic27

Hi shane please make a nuisance of your self its your life dont let them play god with your life ! I had a brain haemorrhage 4 years ago i had headaches but nothing to ring alarm bells and was only found when i collapsed at work and spent a total of 5 weeks in hospital ! I feel for you as you know you have a haemorage so dont give up and ask for a referal to a different doctor all the best and get well soon david

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