Unruptured aneurysm: Pam's story

In the summer of 2004 I was feeling on top of the world. I enjoyed my work, my family were doing well, I had lost some weight and I was looking ahead to a positive future. On the 5th August the sun was shining and I had spent the afternoon gardening, when my GP rang and told me the MRI scan which was carried out to look for something (which fortunately did not exist) had revealed I had two aneurysms, possibly more.

Shock and disbelief were replaced by the need to find out everything about my condition. My medical team provided medical information, but what I needed most was the opportunity to communicate with people in a similar situation. I wanted to know how other people coped and had they come through it ok.

I did not know what an aneurysm was and my GP carefully explained that it was a balloon like swelling on an artery in the brain. The swellings are weak spots which can rupture and cause a brain haemorrhage. Despite his careful and reassuring explanation I was panic stricken, he said that the next step would be to see a neurosurgeon, which filled me with even more fear. I was totally shocked and distraught, so much so that I was unable to explain it to my husband.

Shock and disbelief were replaced by the need to find out everything about my condition. My medical team provided medical information, but what I needed most was the opportunity to communicate with people in a similar situation. I wanted to know how other people coped and if they had come through it ok. After extensive searching I found an international support group and some months later I was fortunate to find a support group at my local hospital, however, I realise not all hospitals offer this facility and it is frustrating there is not a national UK based group for aneurysm patients. I am delighted the Brain and Spine Foundation have asked me to submit my experiences for their new website and I hope my story will be of some help to others, their friends and relatives.

My story really starts 16 years ago, when I suffered an episode of Bells Palsy (temporary paralysis of the facial nerve) from which I made a full recovery, however, it would cause me some problems if I had a cold or dental treatment. In November 2003 I started to have some difficulties again with my facial nerve as well as pain and inflammation in my ear which wouldn’t go away. My GP referred me to and Ear Nose and Throat specialist but by the time my appointment arrived I was feeling better, however, because I was having recurring problems the specialist suggested it would be worth having a brain scan just to check things out. The MRI scan showed that my GP’s diagnosis of Bells Palsy 16 years ago and subsequent treatment was correct; however, quite by accident they had noticed two brain aneurysms which had no connection with my facial nerve problem.

My GP told me I was very lucky to find out, people don’t have brain scans as a routine and many people don’t know they have an aneurysm until it ruptures (sub-arachnoid haemorrhage). Despite this explanation of how lucky I was I did not feel it, in fact I did not want to accept this and over the next few weeks and months I went through every possible human emotion – anger, sadness, anxiety, fear. I questioned my lifestyle, I looked for a cause, someone, something to blame. My emotions were flying all over the place, I even felt angry with myself for feeling so emotional. I was terrified; I felt I had a time bomb ticking in my head with no idea when it would go off, I just wanted it dealt with there and then. I also found it hard to cope with the reactions of family and friends, some people wanted to talk about it and others wanted to try and forget it like nothing had changed. Looking back I can see my family provided me with such good emotional support, I would probably would not be where I am today without them. My family members were going through exactly the same emotions as me as well as fulfilling the role of emotional supporter.

I was referred to a neurosurgeon in September 2004 who again told me I was very lucky. He also told me that treatment options vary from patient to patient and each one is treated individually. I had already prepared a list of questions and found it useful to go through these with him. He explained he needed to get a more detailed picture of the aneurysms in order to decide on the best possible treatment, so in November 2004 I had a cerebral angiogram.

A week later I was told I had five aneurysms. Two were very small and only posed a very small risk of rupture, however, the three others were larger and would require treatment. My neuro-radiologist explained that they were suitable for coiling. Coiling is minimally invasive procedure where small platinum coils are inserted through an artery in the groin up into the brain aneurysm, the coils fill the aneurysm and prevent rupture. I was told of all the treatment possibilities and even though the doctors were advising coiling I wasn’t pushed into the decision and was allowed home to think it over and discuss it with my family, at last I felt in control again. There is no way of knowing if or when the aneurysms would rupture, therefore, I decided to have the coiling performed rather than leaving them be and seeing what happens.

It was explained to me that each aneurysm may have to be coiled at different times and as I waited for my first operation appointment to arrive I began to understand what my GP meant when he said I was lucky to find out about my condition, at least now I could do something about it. I began to feel positive again, I had been given a second chance I was one of the lucky ones. I was naturally nervous about the forthcoming operation but I kept telling myself that it was being carried out in controlled planned circumstances and my neuro-radiologist wanted the best for me. When I did start to worry I made myself feel better by visualising myself coming out of hospital after a successful procedure.

In February 2005 my operation day arrived. I was given a general anaesthetic, the next thing I remember was my neuro-radiologist waking me in theatre saying it had all gone smoothly and it had been a complete success. I came out of theatre having had brain surgery with nothing more than a dressing on my groin. I stayed in the high dependency unit overnight for routine monitoring and was even allowed a few visitors. I spent the next few days on the general neurosurgical ward and then went home to continue my recovery. Before I left hospital I was told that even after my treatments are completed I will have regular checks and this is reassuring to me. My next coiling is due soon, having gone through the procedure once I am far less apprehensive second time round.

Summer 2005 approaches and in the space of less than a year my attitude to life has completely changed and for the better. No longer do I stress over trivial issues and I appreciate the simpler things in life. I have a more relaxed attitude and I live for today. Sadness, disbelief and shock have been replaced by confidence in my future and I will never forget how lucky I am to have been given this second chance. I believe this experience which has brought about these lifestyle and attitude changes has already enhanced my life and look forward to something even better once my treatment is complete.

I hope my story helps others in my situation and I would like to say a special thank you to the helpline staff of the Brain and Spine Foundation who have helped me so much.

Update July 2005 I went back into hospital as planned in June 2005, The plan being that I would have a check angiogram on the procedure carried out in February,and if that did not require any extra coils adding, then the second aneurysm would be coiled and I would return later in the year for the third aneurysm to be coiled. When my doctor woke me after theatre he told me that the check angiogram had revealed everything was fine, he had then successfully occluded the second aneurysm and then decided to coil the third which had also gone well, never in my wildest dreams had I expected all the surgery to be finished that day. I spent three days in hospital and then was discharged home. I still have two very tiny aneurysms which for the time being are being monitored, I will have regular check ups and have been told that they may never change, but if the check ups do reveal any changes then they will be treated. One month on from the coiling I am doing very well. It is now almost a year since I was told I had multiple unruptured aneurysms, the memories of the day I found out have not faded, I can still feel the shock I felt that day almost a year ago. In the past year I have continued to work in between tests and procedures and have carried on my normal daily life, but it has been an emotional rollercoaster of a year for both me and my family, but I hope the positive outcome I now have will be an inspiration to others, especially those newly diagnosed.

Update June 2006 Today it is one year to the day since my last coiling procedure, two days ago I had an appointment with my neuoradiologist following an MRA scan two weeks ago which was a routine scan to check on the two surgeries carried out last year to coil three large aneurysms and also to monitor two small aneurysms which were not treated. The news was good; all three coiled aneurysms remain completely occluded. The two small aneurysms which we were not worried about at diagnosis remain unchanged (there has been no growth). I shall continue to have regular MRA scans to monitor the treated and untreated aneurysms which I find extremely reassuring. It is impossible to predict if the untreated aneurysms will ever change - they may never do so. If they do, then they can be identified through the monitoring programmed, and the right treatment can be carried out. I hope this little update is of help to anyone diagnosed with cerebral aneurysms.

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