Claudette Posted March 15, 2016 Share Posted March 15, 2016 Hi All I'm feeling a bit low at the moment. Right now I'm waiting to hear from the Neuro team that administered my 6 month angiogram after my Subarachnoid Haemorrhage. I've been told that they've looked at the results, and it's possible that I'm going to need to have another brain operation - I assume this is because the coils have 'settled' in the aneurysm and so will need more coils inserted, but I'm not actually sure what's happening. And I'm frightened. They are going to make a decision today and, hopefully, inform me properly of what's going on. Has this happened to anyone else? If I am given a choice, what should I choose? Have re-coiling or leave well alone? Quote Link to comment Share on other sites More sharing options...
Super Mario Posted March 15, 2016 Share Posted March 15, 2016 Claudette, please do not try to worry, we have members who have had coils added and all have been fine. I know you are assuming but until they tell you what is what you are totally in the dark. I think it was a bit naughty of the to mention anything to you until a decision was made on further treatment, then they could have given you the full picture not half of one causing this worry. It is only natural to be frightened, anyone would be. As to a decision, only you can make that after discussion with the medics. 2 Quote Link to comment Share on other sites More sharing options...
kempse Posted March 15, 2016 Share Posted March 15, 2016 Hi Claudette Sorry to hear you are feeling a bit low at the moment. I'm sure the uncertainty won't be helping, hopefully some clarification would help you a little. My sah was in Nov 2008 and when I had my first angiogram following the bleed it was discovered that I needed more coiling. I was terrified too, but to be honest it wasn't as bad as I had feared. I do understand the anxiety of it all, in fact it looks like I've got to have mine coiled for a third time in the not too distant future, so my anxiety levles are rising once again! Despite not looking forward to it, it is my belief that it is a lot better for me to have it done than not to have it done and live with the risk of it rupturing in the future. I'm planning on discussing it all with the neuro team beforehand - to get some reassurance at least - I hope you can do the same. Best wishes, Sarah 2 Quote Link to comment Share on other sites More sharing options...
Claudette Posted March 15, 2016 Author Share Posted March 15, 2016 Thank you both. I've just spoken to the Clinical Nurse in the Neuro team. I have three aneurysms; two of which were coiled and one, the smaller one, left untreated. Apparently there is a remnant space in my larger aneurysm, which they said is stable, but they have decided to call me in for a talk to see how I feel about leaving it as it is or recoiling. They said that the smaller unprotected aneurysm poses little risk, but that that risk is slightly increased due to the fact that I've already had a haemorrhage. So the Neuro team want to meet with me to discuss the options available. It's all just so awful. The thought of my aneurysms rupturing again sends shivvers down my spine, but Sarah, you're right: I think I'd rather have the little brute coiled than have a time bomb in my head waiting to explode. Thank you both again for your comments. It really is reassuring speaking to people who have already been there and done that, so thank you. Claudette xx 2 Quote Link to comment Share on other sites More sharing options...
Winb143 Posted March 15, 2016 Share Posted March 15, 2016 Claudette, I also would be scared but someone put it this way "They do not have to drain blood away as no bleed to contend with" and that makes it easier for the Surgeon. I would like to say something happy to you but you are worried so I wont, but try and not Stress as it is bad for you. I would be stressed also but look at Karen she has one they are keeping eye on, so you know they are doing there job. Keep Well and Good luck xx Win xxxx Oh Well that's sorted then lol phew !! just read your reply to others xx 1 Quote Link to comment Share on other sites More sharing options...
weedrea Posted March 15, 2016 Share Posted March 15, 2016 Claudette I've just had my 6 month scan but I'm in a different position to you. I've got 2 aneurysms. One was coiled after a bleed and the other is too small and difficult to get to for coiling. When I was in hospital the lovely nurse did tell me my op was "fairly sucessful"....lol very encouraging but like you the problem was a little neck that could do with an extra coil. When I saw my surgeon before I was discharged he showed me my scans and suggested that they'd probably consider more surgery in 6 months and sensed they'd like to do it quite quickly. Now at 6 months my scans are stable....so I'd love them to offer me more coils but there's not enough room so hoping in the next 6 months my coils settle appropriately! 1 Quote Link to comment Share on other sites More sharing options...
Winb143 Posted March 16, 2016 Share Posted March 16, 2016 Why cant someone invent a Coil Stretcher or Closer that can be used by a magnet or something similar to shunt and it encloses the anni or opens it a little and we wouldn't have to keep having ops to recoil ...well in Wins world it makes sense lol xx Good luck Claudette XX Be of Good Cheer when possible XX 1 Quote Link to comment Share on other sites More sharing options...
Chris G Posted March 16, 2016 Share Posted March 16, 2016 I don't know much about the coiling process as I didn't have it. But I will say a prayer for you and wish you the best. I am sure the doctors know what they are doing and all will be fine. 2 Quote Link to comment Share on other sites More sharing options...
Claudette Posted March 16, 2016 Author Share Posted March 16, 2016 Thank you everyone! I'm certainly feeling a lot better about it all today. All I can do is put my trust in the doctors and surround myself with a lot of positivity. But I have to admit, I didn't realise that the coils 'settle'. I assumed that once they were in, they were in, with nothing more to be done. I mean, how many times do we have to go back to the hospital for recoiling? I'm still unsure of what I want them to do. I don't really want to have another brain operation, but I also don't want the worry of thinking that I'm going to have another haemorrhage. Well, I'm seeing the consultant next week, so we'll see how that goes. I'll let you all know how that goes. xxx 1 Quote Link to comment Share on other sites More sharing options...
kempse Posted March 16, 2016 Share Posted March 16, 2016 Hi again Claudette, I'm exactly the same with not wanting another brain op, but not wanting the alternative either - the possibilty of another haemorrhage - such a choice - not! I quite thought that once I'd had the second coiling that would be it. I was told at that point that the reason more coils were required was that they had not filled the aneurysm with as many coils as they would have liked after the bleed because I had bad vasospasm (constriction of blood vessels) and they had not wanted to risk one popping out and causing me to have a stroke. The reason this time is because it has grown slightly, although I'm not entirely sure if it's the aneurysm or the wide neck on it that has grown. I didn't take it all in at my appointment because my husband was in intensive care following open heart surgery at the time. They agreed to postpone it all for six months and that six months is up in April, hence I have another MRI on 16th and there was talk of an angiogram some time after that with presumably coiling after that. So to answer your question about how many times do you have to go for recoiling, for the majority of people I think it's once, for me it's too many!! Good luck when you see your consultant next week Sarah 1 Quote Link to comment Share on other sites More sharing options...
Claudette Posted March 17, 2016 Author Share Posted March 17, 2016 Thanks Sarah. And I hope everything goes alright for you too. What larks, eh?! xx Quote Link to comment Share on other sites More sharing options...
Daffodil Posted March 18, 2016 Share Posted March 18, 2016 Hey claudette. Sorry to hear of your worry. Keep positive and I'm sure it will be fine. Like some others here I have a widened neck on my coiled anneurism and another which is small so just monitored. I have regular follow ups as they check for compacting of coils and explained this can sometimes occur because of pressure of the passing blood flow pressing and shifting the coils settling down in their location. Fortunately mine have not compacted but the neck remains because if they had coiled it fully then it would risk blocking another artery as it on an an artery intersection, I have been told I would need stenting before any additional recoiling. A useful video I watched which visually shows how it works and made me see how those tiny coils could squeeze down. https://m.youtube.com/watch?v=15J5s9fwSEE 2 Quote Link to comment Share on other sites More sharing options...
Macca Posted March 18, 2016 Share Posted March 18, 2016 Hi Claudette, The good news is that they can do something about it - so look on the bright side, your glass is half full, not half empty! Yes it is perhaps a little worrying but what is that price against the rest of your life. Like paying 5 pence for a season ticket to Wembley! Listen to your doctors and try to be positive! There is every reason to be so. Then do what you think is right once you have taken everything into account. Only you can take that decision. Good luck! Macca 4 Quote Link to comment Share on other sites More sharing options...
Claudette Posted March 28, 2016 Author Share Posted March 28, 2016 Hi All Thanks again for the advice. Daffodil, I've just been looking at the You Tube video you suggested. Really good information there. I'm kicking myself that I never thought to look on You Tube! And I'm meant to be a teacher! Thanks for that. I've only just seen it though. Wish I had taken a look before my appointment with the consultant. Well, I've had the appointment and I've decided to not have surgery. I was already thinking in terms of that, but made up my mind when the consultant told me what he would have to do. Nope. Didn't want that, so, as he said it was stable and that I was unlikely to have another haemorrhage (possibly, but unlikely), I've chosen to leave things as they are but just get them to monitor it when they do the next angiogram. Believe it or not, I actually feel a little relieved. I felt in limbo before, what with not knowing what to do. Now that I've made up my mind, I feel that I can finally start getting on with my life. So Macca, I'm going to try to be a 'glass is half full' type of gal from now on. Hard for me, what with being a Wednesday's child, but I'm going to give it a good try. Onwards and upwards! xxx 4 Quote Link to comment Share on other sites More sharing options...
weedrea Posted March 29, 2016 Share Posted March 29, 2016 Good you've got clarity on the way forward. Were they offering you more coils or something more? Mine are stable but they may want to do *something* at some point. 2 Quote Link to comment Share on other sites More sharing options...
Macca Posted March 30, 2016 Share Posted March 30, 2016 Well done Claudette - now get on with your life and enjoy all that it brings. I wish you the very best of luck and good fortune! Macca 2 Quote Link to comment Share on other sites More sharing options...
Claudette Posted April 2, 2016 Author Share Posted April 2, 2016 Thank you Macca and Weedrea. And to answer your question, Weedrea, they wanted to coil the 2mm unruptured aneurysm they had previously left untreated, adding a stent as well. But whereas with my initial operation, they reached my brain through my artery, because of the position of this aneurysm - right in the centre of my head - they wanted to gain access to it by cutting open my skull. I've progressed a lot since I had the haemorrhage, but it's taken me 7 months to get to this stage. It kind of felt like I'd be going backwards if I had the op, in terms of my progress, and although the consultant wouldn't advise me of what I should do (as he wanted it to be completely my choice), I got the impression that he felt it would be better to just leave it alone with the option of operating on it at a later date if I change my mind. So that's what I've gone for. Now for my next challenge - getting back to work! xx 1 Quote Link to comment Share on other sites More sharing options...
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