Karen Posted February 6, 2008 Share Posted February 6, 2008 We have quite a few people on this website, that are living with an aneurysm/s that haven't been surgically "fixed" or totally occluded .....like myself, I still have a neck left on mine and it's taken me a great deal of time to come to terms with that fact... please use this forum to air your frustrations, anxiety or anything else...... looking forward to hearing from you and listening to your experiences..... anything that you can add to this forum, will help tremendously.....as, I'm sure that that there will be many people that are going through the same... If you have an untreated aneurysm or an aneurysm that hasn't been totally occluded or where the coils have settled..... please share your experience/thoughts and feelings... I'm sure that they'll be gratefully received....xx Quote Link to comment Share on other sites More sharing options...
Guest pam Posted February 15, 2008 Share Posted February 15, 2008 Thanks Karen for staring this section on the forum. I feel sure there are quite a few of us in this category pam Quote Link to comment Share on other sites More sharing options...
rampmama Posted February 17, 2008 Share Posted February 17, 2008 Thank you Karen. I too have a "remnant" of my annie. It is only 2 mm, but considering how my 6mm rupture almost killed me, I do get a little nervous. But my nuerosurgeon says that I will be fine. That having 2 mm is just like having an opening from getting coils. Those of us that have been coiled will always have the opening where the coils went in. ANd for some of us, the just couldn't get that last little coil in. Mine kept backing out so they din't jam it as full as they wanted. Quote Link to comment Share on other sites More sharing options...
Guest crystal0616 Posted April 6, 2008 Share Posted April 6, 2008 Hello Karen..I noticed you mentione you had a warning bleed?? I am wondering if this is something my mother in law had? Here's her story...My mother in law was recently visiting my husband and I in Hawaii and had a ruptured aneurysm. It's been about 8 days and she is hanging in there and at least able to talk to us. She had stroke caused by the angiogram (they told us only 1% of people get a stroke from the angio; luck wasn't been on her side). So far the vasospasms (?) have not hit her. The tests they have done so far a not very conclusive about about the aneurysm; in fact they can't confirm with 100% certainty that it's even an aneurysm. It is most likely a wide neck aneurysm and its at the base of her neck by the brain stem so it's a very risky area to treat. They want to do another angio in a few days, but we are very hesitant since the first one already gave her a stroke. Evem if they do confirm it's an aneurysm from the 2nd angio they may not even be able to do anything about it b/c of the location and type of aneurysm it is. My question: is there anyone out there living with a ruptured aneurysm (no treatments like coiling, etc.. being done)? From what I read the chances of rebleeding are high; but I am just wondering how this has affected anyone's life first hand and if there is anyone in a similar situation to my mother in law. Does this sound similar to your situation Karen? Thanks for any thoughts! Quote Link to comment Share on other sites More sharing options...
Karen Posted April 6, 2008 Author Share Posted April 6, 2008 Hi Crystal, Basically, the Sentinel bleed or warning leak that I probably had 4 years earlier, went undiagnosed, as by the time I was sent for a MRI scan (which isn't the best type of scan to show up the blood vessels) it was 8 weeks after the event. I was still experiencing occasional double vision for many weeks or months after and eventually another Doc decided that I should have a MRI scan and told me to stop driving .... It was a bit of a farce and a catalogue of misdiagnosis, being told that I was suffering from a stiff neck or a repetitive strain type injury and I should make sure that when I was working on a computer, that I change the screen position.....stress or needed a simple eye test etc etc..... I eventually did give up my job, as for many months after this event, I didn't feel fit enough to work, but nobody could give me a conclusive answer. I knew at the time that it was more than just a simple neck ache ...... when it happened, I really thought that I was going to die......just breathing in and out caused horrendous pain in my head......so I googled my symptoms and it came up with haemorrhagic stroke......I had all the classic symptoms. I asked the Doc if it was a possibility that I could have had a stroke and I was told yes, probably a mild one. 8 weeks later, I had the MRI scan and saw the Consultant straight after the scan......I was told that the results were inconclusive and I might or might not have had a warning bleed/leak. If only I had the knowledge then, that I have now, as I would have insisted on further tests. It looks as though the leak healed, but went on to leave the artery weakened. When I was admitted with the next SAH in 2005, the Neuro Consultant was disgusted that 4 years earlier, the hospital hadn't given me a lumbar puncture to make sure that there wasn't anything going on. Blood can show up in the spinal fluid for many months after a brain haemorrhage. Anyway, it took me a year to feel fairly back to normal and get life back on track.....backwards and forwards to the Docs etc... but my eyesight still wasn't right and mentally, I was still plagued with thoughts of whether this would happen again and unfortunately it did, 4 years later ..... If you have a look at my angio photos in the photo album of the website, then you can see that my aneurysm is butterfly shaped and I'm wondering if that's because the artery has bulged out on 2 occasions, 1st bulge from the warning bleed or leak, which healed over, but left the artery weakened and the 2nd time from the latest SAH. If I'm right with my conclusions, then all I can say, is that I was very lucky. Here's some info on this link re: warning leaks/sentinel bleeds http://www.uic.edu/com/ferne/pdf/acep_0 ... inelha.pdf Crystal, how old is your Mother in law? I would imagine that the medics would want to know how large the aneurysm is and hence the 2nd angio ..... I would presume that the size of the aneurysm would also be a major consideration and that they would weigh up all the risks of treating it surgically, up against those of non-intervention......I would suppose that they would also take into account your Mum in law's general health at the minute and the fact that she's also just had a stroke. However, if I remember rightly, we have had people on this message board that have suffered a stroke due to the angio, but have had further angios or surgery, which have been successful, with no further complications..... they are definetly the minority..... the majority of us have thankfully had no complications. Hope that makes sense.....but, as you know, none of us are medical professionals on this website, so it's something that you need to ask the medics that are treating her. Good luck to you all and I hope that you'll keep in contact with us and let us know how your Mum in law is progressing. Quote Link to comment Share on other sites More sharing options...
Guest zip2me23 Posted June 7, 2008 Share Posted June 7, 2008 This is my first time posting on the board, I just found it! I had an aneurysm rupture in May of 2007, it was coiled. It still has a residual neck, 2mm. I do feel panic quite often over it. Other than my husband I really don't have much support or anyone to talk to which helps with the panic! I just had my second follow up MRA six weeks ago and hoped the neck would be healed over by now but it isn't. I have another one in October. Thanks. Quote Link to comment Share on other sites More sharing options...
jess Posted June 7, 2008 Share Posted June 7, 2008 Welcome to the group. Jess.xxx Quote Link to comment Share on other sites More sharing options...
Karen Posted June 7, 2008 Author Share Posted June 7, 2008 Hi and welcome! Knowing that you're aneurysm isn't 100% occluded isn't easy to come to terms with after having a SAH. It looks as though the hospital will be keeping an eye on you though. As you've probably read, my aneurysm still has a neck left on it and it literally took quite a while to get my head around it all and the knowledge has been an extra burden, but I think that I've come to terms with it now..... I'm back for a scan in 2010, but if I felt particularly unwell with my head at any point, then I would go and see the Doc or go to A & E. All I can say is, that I'm nearly 3 years post SAH and I'm still here ..... I had a MRA scan last year as well and that showed that the neck hadn't increased in size. Quote Link to comment Share on other sites More sharing options...
Skippy Posted June 9, 2008 Share Posted June 9, 2008 Hey there Welcome to the family. You'll find lots of support here - this has been a godsend for so many of us. Anything you want to ask or to sound off about - or even laugh about - we're here. Take care Sami xxx Quote Link to comment Share on other sites More sharing options...
Guest zip2me23 Posted June 9, 2008 Share Posted June 9, 2008 Hi! I would like to ask a question, I have been thinking about this, and felt better after reading this thread and finding out that there are others that have aneurysms with residual necks, my doctor isn't one to answer questions so I thought maybe I would get an answer by posting the question here. I am just wondering if maybe it is more common than I think for coiled aneurysms to be left with a small residual neck. I know total occlusion is what they aim for. My thanks to anyone who responds, I just got wondering about it! Dorothy Quote Link to comment Share on other sites More sharing options...
Karen Posted June 9, 2008 Author Share Posted June 9, 2008 Hi Dorothy, The coiling procedure still seems to be in it's infancy and the long term affects/outcome aren't known..... for an aneurysm to be treated successfully it needs to be totally occluded.....well, that's what I've read.... however, it does seem to be fairly common that either coils have settled or the aneurysm hasn't been totally occluded. In one sense, I still feel like a bit of a guinea pig and only time will tell..... most of the long term survivors that I know of, have been clipped... Quote Link to comment Share on other sites More sharing options...
rince Posted June 9, 2008 Share Posted June 9, 2008 If the neck of the annie is more than what your neurologist considers to be "safe" or if you have an un-ruptured annie then the risks involved with treatment although still not small or insignificant are considerably less than in the aftermath of a SAH. There is a balancing act between either leaving alone or taking action with treatment that in itself may cause serious consequences and that will vary from neurologist to neurologist. Whether or not you have treatment will be down in the end to you, but you have to take into account expert advice. That expert advice should come from your neurologist rather than anywhere else, we may all consider ourselves to be experts but our knowledge does have serious holes (not as bad as you average GP tho!). The success of coiling has some unexpected consequences as well. As embolisation now accounts for upto 80% of SAH treatment rather than clipping it means that the art of placing a clip has gone into decline. Neuro-Surgeons who gained experience from treating SAH are now sidelined in favour of the seemingly safer route of coiling which is done by a Radiologist, which means that the "easy" way of gaining surgical experience has been taken away from the people who now only have to perform this art on the more "difficult" cases or those in which coiling has failed. Personally I'm glad that I didn't have to have "open brain surgery" but I am half worried about the long term effects of coiling, there may of been issues about certain makes of clips in the 70s/80s but it's never nice to be a guinea pig! Scott Quote Link to comment Share on other sites More sharing options...
Karen Posted June 10, 2008 Author Share Posted June 10, 2008 Hi Scott, I agree with all of your comments.... I think that the problem that I have, is knowing that my aneurysm hasn't been totally occluded and living with the uncertainty that this could happen again.....I have come to terms with that fact to a certain degree and I don't let it hold me back..... I do still feel like a guinea pig as regards to coiling, but also know that where I had my annie on the post right comm artery, that it's not an easy place to clip, so I'm lucky to be here and having a 3rd chance, so I'm making the most of it ..... Quote Link to comment Share on other sites More sharing options...
Guest zip2me23 Posted June 20, 2008 Share Posted June 20, 2008 Hi. I have been thinking about my aneurysm still having the residual neck and I was wondering if anyone has had a coiled aneurysm that was left with a residual neck and with time had it occlude itself. Thanks! Zip Quote Link to comment Share on other sites More sharing options...
Karen Posted June 20, 2008 Author Share Posted June 20, 2008 Hi Zip, Well, as you know my annie still has a neck ..... I've kind of come too terms with it to a degree, but would still prefer it obviously not to be there. I'm due back for a scan in 2010 and I would imagine that they'll be looking to see if the neck has grown ..... are you being monitored? Quote Link to comment Share on other sites More sharing options...
Guest zip2me23 Posted June 20, 2008 Share Posted June 20, 2008 Hi Karen, Yes they are checking it every six months right now, I was just curious if anyone has had one that did take a while to occlude but finally did! Let's hope we both get good news next time they check. Zip Quote Link to comment Share on other sites More sharing options...
Karen Posted June 20, 2008 Author Share Posted June 20, 2008 Yes, fingers crossed ..... xx Quote Link to comment Share on other sites More sharing options...
Guest yasmin Posted June 21, 2008 Share Posted June 21, 2008 my Annie also has a neck or spur ? I have to be check yearly I'm told, of late I have had the horrible headaches back and they really do stop me from getting on the thing I most want to do, I have so much work at the moment and I'm hoping they are just stress headaches I have woken up for the last two weeks with this headache and sickness driving me mad and this morning I had that horrible taste in my throat the same as when I had my annie bit like blood Yuk been to docs he told me to call my consultant which I did, he called me back and said he did'nt really want me to have any more scans yet due to the radiation, and he did'nt think it was at all related to my Annie he says he is 99% sure that Annies do not re bleed from the neck(good news) I intend to have a week off next week to see if it improves and hopfully the headaches turn out to be exhaustion and stress Yasmin Quote Link to comment Share on other sites More sharing options...
Guest libby926 Posted June 22, 2008 Share Posted June 22, 2008 I had my SAH in July 2005. I too have a residual neck of about 2mm which remains untreated. Also, I have an additional small aneurysm which apparently they are keeping an eye on but although I am due for another follow-up MRI in August 2008, I am told that if that is clear I will be discharged. I do feel as thought I am walking around with a time-bomb in my head and would much prefer if they just did an annual scan rather than discharging me. I just feel that another rupture may well occur in future when prevention would be obviously be a better option given the possibilities! I must admit to feeling very scared about the prospect of being discharged, having this "thing" going on in my head over which I have absolutely no control. I feel very scared, on a daily basis, that something else will happen. Do other people feel like this or is it just me? I am not usually a nervous or self-obsessed person; however, I think it's knowing that I came so close to death a few years ago that worries me so much now. It's good to know that there are others out there in similar situations and that they are willing to share their experiences, thoughts and fears as well. Quote Link to comment Share on other sites More sharing options...
Guest zip2me23 Posted June 22, 2008 Share Posted June 22, 2008 I also live each day with a certain amount of fear, I think it is normal and hard not to feel that way especially when you have been through a rupture. I have lasting effects of the rupture that are a constant reminder for me as do many who have gone through this. I find great comfort and assurance from people who are willing to share their stories. I am taking comfort at the moment in knowing that there are others who have not had their aneurysms fully occlude! It is a blessing to have others to share with. All that to say "I understand what you are going through". Zip Quote Link to comment Share on other sites More sharing options...
Guest yasmin Posted June 22, 2008 Share Posted June 22, 2008 I too feel like a ticking time bomb and don't feel as safe like I used to feel, I never had any health problems before my annie and its made me quite insecure in some ways. The pains i've had in my head the last few weeks have put me back to square one just as I thought I was getting near the top of my hill I seem to have slide right down again. Its very reassuring to know I'm not alone in my fears and talking to others helps so much. On a happy note though my friend had her two annies both clipped and that was 25 years ago today so we will all be around for a bit longer yet Yasmin Quote Link to comment Share on other sites More sharing options...
myratas Posted July 29, 2008 Share Posted July 29, 2008 Morning everyone, I had an appointment yesterday at the hospital i was told i needed to see the neurovascular doctors regarding the aneurysm that i still have. This doctor feels that it should be coiled but others feel it should be left alone at the moment but he is going through my medical records and feel it would be safe to have that rather than leaving it alone. I requested a copy of my scans and will take it with me to show the neurosurgeons appointment that i have on the 7th August in Germany. I am confused and worried about this, I think that with my previous medical problems i am concerned. I had other major surgeries before my SAH. I just feel that when doctors are confused as to what to do that does not help either. Myra xx Quote Link to comment Share on other sites More sharing options...
Karen Posted July 29, 2008 Author Share Posted July 29, 2008 Hi Myra, There's nothing worse than conflicting advice ..... I suppose that they have to weigh up all of the risks involved, as whether to treat it or not. I know that if I was found to have another aneurysm or if my treated annie has enlarged, then I would want it fixed. For me, it's also dealing with the mental side of knowing that it's there and thinking that every twinge is going to lead to another SAH.....I'm not sure if I could handle it, as this SAH has left me with enough problems to deal with. I really feel for you and I hope that you're able to have your mind put at rest soon.....it's bad enough having a SAH, without this hanging over you too. xx Quote Link to comment Share on other sites More sharing options...
myratas Posted September 8, 2008 Share Posted September 8, 2008 I received a letter today from the hospital that they want me to see the neurointervention team on the 24th September. I am so worried about this, i keep thinking bad thoughts. I know that i am having some health problems at the moment, some related to SAH and some of the previous medical problems but this is really not helping me i am so stressed and i cannot talk to anyone about this because i do not want them to worry. I am so frustrated and feel that i have to cope with emotional problems on my own. I am in tears, it's not easy at the moment, i wish i did go to Frankfurt to visit my husband. Sorry to rant on with my problems. Myra xx Quote Link to comment Share on other sites More sharing options...
Tina Posted September 8, 2008 Share Posted September 8, 2008 Oh Myra, Bless you.....try not to stress about it...i know it is so easy to say, i do feel for you. It must be so hard not being with your husband......i think you are amazing, dealing with this on your own. Try and keep your mind occupied, maybe making the jewellery that you love to make....24th Sept will soon come round and hopefully you will have some peace of mind. We are here for you hun .Take care...lots of love and hugs to you...love Tinaxx Quote Link to comment Share on other sites More sharing options...
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