IanM Posted June 7, 2011 Share Posted June 7, 2011 Hi Everyone, My name is Ian, I'm 49, and live in South Wales. Although I haven't had a SAH, I currently have an untreated aneurysm. I collapsed in April 2008, and was referred by my GP to a neurologist, after I explained I'd always get a severe pain at the back of my head when I laughed or coughed a lot (I grew up with this). After MRI & CAT scans, I had my results in March '09. He told me they'd found three things: a brain condition called Arnold Chiari Malformation, a 7mm aneurysm (anterior communicating artery), and 2.5cm arachnoid cyst (right temporal lobe). They weren't that concerned about the cyst - but referred me on to a neuro-radiologist, for the aneurysm, and a neurosurgeon for the chiari. A few months later, I had my appt for the aneursym. He explained the risks etc, and said I could be monitored or I could have it coiled - but wait for the outcome for my other appointment before making a decision. When I saw the neurosurgeon, he told me I needed surgery - or face the risk of being paralysed if I collapsed again (decision made, for that one!). I elected to have the aneursym coiled, before the bigger operation on the back of my skull. But, when I was in recovery after the coiling, I was told my aneurysm was the wrong shape to hold the coils - they couldn't tell beforehand. Two months or so later, I had decompression surgery for the chiari in December '09. Had another CAT scan in June last year, and was told in November that the aneurysm was still the same size, and I would be scanned every two years. This March, I saw a different neurosurgeon - who said he'd taken over the care of my aneurysm, and went on to explain how it could be clipped....(suggesting, in a way, that this is what he needs to do). I knew that this is the only way it can be dealt with. Since then, after talking it through with my wife, family, friends & colleagues, I've decided to go ahead with it, when I see him again next month. I think my age, and general good health is in my favour, if I have this done now, rather than wait a few years. Have been reading posts one here for some time, and would really appreciate any advice etc you can offer ? Thanks for reading.... Ian Quote Link to comment Share on other sites More sharing options...
sallym25 Posted June 7, 2011 Share Posted June 7, 2011 Hello Ian, Welcome to the forum. I did have a clipping op, but it was after my aneurysm ruptured. I would hope that when these operations are planned, the immediate aftermath would be much less stressful than when they are done in an emergency situation. I have heard some say this is the case after their coiling procedures. There are members here who have had elective clipping too and I'm sure they will advise you of their experiences when they call on. I can't imagine how it must feel to have to choose whether or not to go for surgery. I hope all goes well for you and you come through this knowing you made the right choice. The site is wonderful for support and reassurance. Someone will always show up with answers to our queries. Good luck with your treatment, and I hope you will keep us updated with your progress. Take care Sally x Quote Link to comment Share on other sites More sharing options...
Skippy Posted June 7, 2011 Share Posted June 7, 2011 Hello Ian Welcome to the site. What a very difficult decision you have to make. In any of these situations I always say you need to weigh up the pros and cons regarding having or not having surgery. You need to talk through everything with your consultant/neurosurgeon and see which is the best route. Personally, I would have any surgery to prevent an SAH but thats only because I've gone through the rupture and the aftermath - but if the odds were stacked in favour of the op then I'd go for it - if nothing more than for literally peace of mind. Quote Link to comment Share on other sites More sharing options...
Bill B Posted June 7, 2011 Share Posted June 7, 2011 Hi Ian, welcome to BTG. I only joined last month. That was a good decision. Your decision is much more difficult. I was coiled, so have no relevant advice on clipping , but you could look at Celia's thread,(Clip vs Coil) under the heading ...Untreated/unruptured cerebal aneurysms.... on the forum page. I hope this will help. Good luck. Bill. Quote Link to comment Share on other sites More sharing options...
donnamarie Posted June 8, 2011 Share Posted June 8, 2011 Hi Ian and welcome to behind the grey. I have only had the coiling done but gill had a planned clipped op and im sure she will be along shortly i have tried to find a recent post about this maybe someone will bump it up for you. look forward to hearing for you donna Quote Link to comment Share on other sites More sharing options...
Gill C Posted June 8, 2011 Share Posted June 8, 2011 Hi ian & welcome to BTG I'm one of the few that have had an elective clipping. My anni was unruptured & undiagnosed for 6 weeks until it was found despite me being in lots of pain & having a ful 3rd nerve palsy by the time the MRI was done I was given the option of coiling or clipping but chose clipping mainly because once it's done it shouldn't need to be done again & there are no 6 monthly angios to go through. That & the fact I would have to wait an extra day for the coiling surgeon & might have found it wasn't suitable to coil anyway. In the end I had less than 24 hours to decide what to do but went with the clipping. I was in surgery for around 6 hours & remember waking up in recovery & asking i've been done & being told yes. I went back to the ward & had something to eat & some oramorph. I was then sick & transferred to HDU with vasospasms. My scar healed really well & my hair grew back quite quickly, I did have some discomfort along the scar line which made me itch. The sorest bit of the scar was by my jawline & ear. If you have any questions please just ask. Gill x Quote Link to comment Share on other sites More sharing options...
kempse Posted June 8, 2011 Share Posted June 8, 2011 Hi Ian, Welcome to the forum. Whilst I am the same age as you, I am not, at present, faced with the same decision that you are. I do have an unruptured aneursym that is being monitorer annually and dread the day if I do have to start making these type of decisions. However, I have also had a ruptured aneursym so I guess the prevention option is definitely more favourable. I can't give any advice on clipping as I had coiling done when it ruptured and more coils added a year later. It sounds like you have good support from family/friends and if I were you I would start a list of questions to ask when you see your neurosurgeon next month and hopefully the clarity of any concerns/queries will make your decision that little bit easier. I wish you all the best, Sarah Quote Link to comment Share on other sites More sharing options...
Sandi K Posted June 8, 2011 Share Posted June 8, 2011 Hi Ian, welcome to BTG! You will get lots of support here. Sandi K. Quote Link to comment Share on other sites More sharing options...
Lin-lin Posted June 8, 2011 Share Posted June 8, 2011 Hi, Whereabouts in South Wales are you? I live in Skewen, near Neath. Welcome to BTG! I haven’t heard of Arnold Chiari Malformation before, but I googled it and so know a little bit more about it now. I am sorry to learn that you have been through the mill. Unlike you and unlike some other members here, I have had no difficult decisions to make regarding my health. I was simply told when I regained consciousness at Heath Hospital that I had suffered a brain haemorrhage and that I had undergone a coiling operation. Speaking personally, I am glad that it happened like this and so I am always touched by stories where people have had to make decisions about whether to undergo procedures or not. I am pleased to learn that you have reached a decision and that you have a clear understanding of how you are going to progress. I would imagine that the task of weighing up the pros and cons is an exhausting one and I hope you have gained some inner peace in arriving at a decision. You highlight the advantages in addressing the issue now rather than later, i.e your age and good health. What you say makes sense. I am sorry that I cannot offer you specific advice because our circumstances are not identical, but I thought I would send my best wishes anyway. Chat soon, Lynne Quote Link to comment Share on other sites More sharing options...
IanM Posted June 8, 2011 Author Share Posted June 8, 2011 Hi All, Thank you for the warm welcome & messages of support. Lynne, I live near Pontypridd, and had my ops in the Heath Hospital as well. Will list more questions to ask, when I next see the neurosurgeon (with my wife, Sam, this time). When I had the appointment in March, I wasn't expecting the discussion I had, so it was a lot to take in - given that only a couple of months before, I was just going to be monitored... He explained the all the risks of the op, as my aneurysm is above the hypothalmus gland. All being well, I'd be in hospital about 5 days, and off work about 3 months (similar to the decompression surgery I had - luckily, I recovered well from that). Thanks again. Ian Quote Link to comment Share on other sites More sharing options...
jess Posted June 9, 2011 Share Posted June 9, 2011 Hi welcome to btg. I had two clipping ops one on the one that ruptured and one on the other that hadn't. The one that hadn't ruptured was easier I went in on the Thursday op on Friday and was sleeping in my own bed the following Thursday. Hope it goes well. Look forward to chatting sometime. Jess.xxx Quote Link to comment Share on other sites More sharing options...
goldfish.girl Posted June 9, 2011 Share Posted June 9, 2011 Hi Ian, I have had 3 aneurysms coiled (2 emergency & 1 elective surgery). I can't help with elective clipping issues. My son had a sub arachnoid cyst (right frontal lobe) operated on in Jan this year. I was told these are always left alone until or IF they become dangerous to the the patient. You have such a lot to deal with and have had to make decisions none of us want to but having had a burst aneurysm I also think prevention is better than cure. I'm sure your doctors have explained the risks with any op and that the risks with a bleed are far less favourable. Very best wishes and would love to hear how you get on. Michelle x Quote Link to comment Share on other sites More sharing options...
Louise Posted June 10, 2011 Share Posted June 10, 2011 Hi there Warm welcome to the site. Thought I'd already said hello obviously not.... Lynne, think I've seen that word Arnold Chiari Malformation on the BSF website... Quote Link to comment Share on other sites More sharing options...
Nessie Posted June 20, 2011 Share Posted June 20, 2011 *waves and doesn't know what to say, as usual since my sah..* But Welcome! Quote Link to comment Share on other sites More sharing options...
RB-R Posted June 20, 2011 Share Posted June 20, 2011 Hello and welcome to the site Ian , i'm from North Wales and now live in Perth Australia, but i do miss my motherland now and again Take care Rhiann Quote Link to comment Share on other sites More sharing options...
IanM Posted June 27, 2011 Author Share Posted June 27, 2011 Hi everyone, thanks again for your messages. Michelle, I think you're right about the cyst - I was told they'd only need to deal with mine if & when it grows... Gill, Jess, I would welcome a chat sometime, if that's ok ? Only a couple of weeks now, to my appointment, have started to write a list of questions. Bye for now, Ian Quote Link to comment Share on other sites More sharing options...
cathmat Posted September 19, 2012 Share Posted September 19, 2012 Hi All,Thank you for the warm welcome & messages of support. Lynne, I live near Pontypridd, and had my ops in the Heath Hospital as well. Will list more questions to ask, when I next see the neurosurgeon (with my wife, Sam, this time). When I had the appointment in March, I wasn't expecting the discussion I had, so it was a lot to take in - given that only a couple of months before, I was just going to be monitored... He explained the all the risks of the op, as my aneurysm is above the hypothalmus gland. All being well, I'd be in hospital about 5 days, and off work about 3 months (similar to the decompression surgery I had - luckily, I recovered well from that). Thanks again. Ian Hi Ian hi im cath i live in beddau so just up the road. I Had a ruptured anurism and sah in november last year and went on to have emergency coiling .Ive only just read your post which was a while ago how are things , have you heard from your surgeon? Im under Mr goetz . Hope you are well . Quote Link to comment Share on other sites More sharing options...
Winb143 Posted September 19, 2012 Share Posted September 19, 2012 Whatever you decide, I wish you Well Ian, I had coiling, no say in what went on as I was in cuckooland. Good luck and don't forget your list of questions lol Best Wishes WinB143 Quote Link to comment Share on other sites More sharing options...
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