pete the fish Posted September 24, 2012 Share Posted September 24, 2012 Hi, I haven't been on for while, because I have been doing my best to place my SAH a very long way from my memory. Unfortunately, like for most of us it will never go away. A constant reminder for me is the insomnia and broken sleep patterns. I had my second angiography back in April and there was what they call a remnant neck which has appeared since my first angiography. The hospital is monitoring the situation but it constantly worries me that it will happen again. I want to move forward without this demon shadowing me, but recently have found it very difficult. Pete Quote Link to comment Share on other sites More sharing options...
Karen Posted September 25, 2012 Share Posted September 25, 2012 Hi Pete, I can totally understand your concerns, as I have the same. I have a neck left on my aneurysm as well, but still alive and kicking after 7 years post SAH. My next brain scan is in 2015. I've spent so much time worrying about what may happen and not enough time enjoying life and moving forward. Do I still worry? Well, yes I do and I think that's a natural response after a SAH, but not as much as I did in the earlier years, as I feel as though I've wasted too much time about what may or may not happen. I would have so loved to have been told that the aneurysm was fixed and discharged, as I think that it would have made life a lot easier to be able to move forward. If you're able to, then ask the hospital a couple of questions for reassurance, as to how large the neck is and the chances of it rupturing. I wish that I had the knowledge that I had now, to ask the same, but didn't know anything back then! I'm imagining that they weigh up the odds of operating and the risks (like all operations, irrespective of being in the brain) up against the size of the neck and the likelihood of future rupture. I wish you well and also wish you some peace. xxx Quote Link to comment Share on other sites More sharing options...
goldfish.girl Posted September 25, 2012 Share Posted September 25, 2012 Hi Pete & Karen, Can I ask a questions about 'necks' left on annis here please? I am very lucky that all of mine were fully occluded (I think that's the right word) so I really don't know much about necks being left. Can they not be re-coiled in the same way as an unruptured anni would be when possible? I would find this news very worrying too Pete, so have sympathy with everyone who is in this position. I would love to think I would deal with it as positively as you have Karen but I'm not sure I would be as brave as you if I was faced with this. Your positive attitude to it is inspiring. I hope you can ask the doctors some questions Pete & find some reassurance in the answers you get. Michelle x Quote Link to comment Share on other sites More sharing options...
Karen Posted September 25, 2012 Share Posted September 25, 2012 Michelle, I have a fairly unusual shaped aneurysm. It's what I would describe as a butterfly shape on a stalk (neck of the aneurysm) The stalk or neck is pretty slim in comparison to the rest of the aneurysm. I was told by the SAH support nurse that the coils had compacted and therefore a neck remained uncoiled, not something that I wanted to hear and put the fear of God up me again, so I can understand how Pete's feeling! I decided to purchase a copy of all of my scans, angiograms and the coiling procedure itself. From what I could see from the coiling CD that actually, there weren't any coils put into the neck. I can only presume that because the neck was so skinny, that maybe putting coils into the neck might have posed more of a risk to me at that time or maybe they thought that the coils might interfere with the main artery and perhaps cause a stroke. I know that I was in surgery for quite a long time. To be honest, I really don't know the answers about my own case history and have never had the opportunity to speak to my Consultant post op. I did go to one of the Wessex Neuro Support meets a few months back where one of the speakers was a Neuro Consultant, so I posed the question as to the level of risk from a bleed from an aneurysm neck and he said that the odds of rupture were extremely low. I guess what I'm trying to say, is that when they carry out the coiling procedure, each case history will be different, each aneurysm will probably be different to tackle, plus how poorly the patient is during the op itself. I would imagine that there must be many things to actually weigh up in order to get the best outcome at the time for the patient and I suppose that's initially surviving the haemorrhage itself and patching us up as well as they are able to without causing any extra disability along the way. I would really not want their job! I had a MRA scan to check the neck a few years ago and there hadn't been any major changes or should I say enough to justify re-coiling and that the aneurysm remained stable and secure. Again, I presume that they compare the neck or any changes with my previous scan. My next scan will be in 2015, however if I have any head problems my GP is pretty good and he will normally refer me to hospital for an MRA and that's always comforting to know. Who knows, it may remain stable for the rest of my life or if it does grow larger and pose a rupture risk later on and I have the opportunity to have it coiled, then I obviously will. I don't know that I'm brave and I certainly experienced some bad times after hearing the news, but have realised over time that I can't do anything to change the situation and to be honest, it was either accepting it, getting on with life, enjoying it or losing my sanity with the worry and not being able to function at all. xx Quote Link to comment Share on other sites More sharing options...
goldfish.girl Posted September 25, 2012 Share Posted September 25, 2012 Karen, thank you for explaining it to me. I imagine that the doctors are on a non stop learning curve when it comes to dealing with all the SAH cases as each one is so unique - I wouldn't want a job with the kind of pressure they face each time either!! It's encouraging to know the rupture risk is small & hopefully there will never be any changes to the neck in the future but I can imagine having that news at all would take quite some time to deal with. Well done for how you have put that knowledge into perspective and kept your sanity Michelle xx Quote Link to comment Share on other sites More sharing options...
Super Mario Posted September 25, 2012 Share Posted September 25, 2012 I have a neck left on my aneurysm and when I asked about it I was told that is was of no concern because my burst was at the top of the berry. I have had no follow-up scans or anything other than the first angio check. Only very rarely do I think about it and certainly never worry, life is too short for that. Quote Link to comment Share on other sites More sharing options...
Winb143 Posted September 25, 2012 Share Posted September 25, 2012 After my op we had a clinical nurse to liase with. My Husband said he was very helpful. Pete does your surgeon have a Clinical Nurse you can liase with? Regards WinB143 Quote Link to comment Share on other sites More sharing options...
pete the fish Posted September 26, 2012 Author Share Posted September 26, 2012 I am waiting for my nuero nurse to get back to me, she is currently on holiday but should be back very soon. I am sure she will put my mind at rest. Thanks for the kind words and encouragement. Pete Quote Link to comment Share on other sites More sharing options...
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