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Found 9 results

  1. Hi everyone Firstly, I want to thank everyone for sharing their experiences and personal stories. I have many a time taken comfort and hope from reading posts on here but have never felt brave enough to post before. Apologies in advance if my first attempt is too long! I had a SAH caused by a small 2mm ruptured aneurysm in 2013. Thanks to the amazing medical team and surgeon who performed the coiling I survived. It has been a long journey and my life is completely different now but I have adapted as best I can. I have been regularly monitored with scans yearly or bi-yearly with minor neck residual fill detected and monitored, until a larger change in size/fill coil compaction was detected in 2019. After an angiogram to look more closely in November 2019 my consultant decided that I should have a recoiling due to be scheduled for March/April 2020. He said at the time there would be less risk doing the procedure than not. He also said if it was urgent they would not have let me out of the room. Then obviously it has been delayed due to COVID, which I fully understand. It is classed as elective surgery so therefore I assume not ‘urgent’. Although a telephone consultation with a neurologist I have never met (standing in for my usual) said it should be done within months not years. I have been trying not to worry and have had a call with the nurse who though it may be rescheduled in Sept/Oct 2020 until this third wave, which I know has hit the hospitals really badly, especially my hospital. It’s so strange, originally I was terrified by the prospect of another recoiling and was thinking I didn’t know if I could go through with it but now I can’t have it I feel very differently! I manage fine most of the time but then get a wave of panic wondering how much at risk I actually am now, at what stage does it become urgent, and what I would do if it happened again. I assumed that would be it and I would be unlikely to survive a second bleed but have read other experiences where thankfully this was not the case. I would be so grateful to hear of anyone’s experiences, opinions or replies in any capacity. I understand every situation is different and how long is a piece of string etc... Thank you for reading and thanks in advance for any replies.
  2. I am in the unenviable position of having to make a decision about whether or not to have my aneurysm treated for the third time. Unfortunately, decision making is not my forte😨 Background is that in November 2008 I had a subarachnoid haemorrhage caused by the rupture of an aneurysm situated at the apex of the basilar artery in the brain stem. This was coiled 11 days later and again a year later. Since then, I have had this aneurysm, which has a wide neck, plus another unruptured one, monitored annually. Yesterday I finally had a meeting with the consultant neuroradiologist following the MRI which I had 5 months ago and also had to chase it up twice. What he suggested was to have more coils put in the base of the aneurysm where there is a gap and at the same time insert a flow diverter which, as the name suggests, diverts the blood away from the aneurysm eliminating risk of rupture which currently stands at a risk of 1% per year. All this appears to be a sensible idea but to achieve this I would need to put myself through a procedure which fills me with fear. I was also told there was a 5% chance of having a stroke during the procedure. Although I've turned this round to a 95% chance of not having a stroke it's not made my decision any easier. The other option is doing nothing now and continue being monitored on an annual basis which presumably is just delaying the decision. Anyway I came away from the meeting having agreed to an angiogram being arranged so he can get a more detailed picture of what he's working with. He also said he would get a second opinion from some consultant in Birmingham before going ahead with any procedure because of it's complexity. I have asked for another meeting with him after the angiogram before I try and make a final decision. Sarah
  3. Hello all, I had my follow-up with my Neurosurgeon yesterday and left a bit uneasy. A shortened background: I had an aneurysm Dec. 10, 2010 and it was coiled. The same aneurysm ruptured again July 17, 2020 and was coiled again. The previous coils were still intact but a new aneurysm branched out off the old one. This is very rare to happen. Prior to my coiling there were talks of putting a stent as well. This was not done. My husband and I were told by two of the Neurosurgeons that it is needed as an added protection to not have another rupture. I was discharged after the mandatory 14 days and never heard about the stent again. This has caused me lots of anxiety. I told my husband that we have to be ready to fight (not physical lol) and advocate for myself and so we did. Doc said there is some remnant which is not uncommon. He showed us the CT scan and where my aneurysm is located is quite tricky. His words were, "There are no right or wrong answer. It's not black and white. It's gray." He also said that for every procedure there are always risks and that if we do the stent I will be on blood thinners forever. He probably saw the look of dismay on our faces. I was on the verge of tears. My husband said well we have to do something, anything. Everybody said a rerupture was unlikely but it did happen. Thankfully, Doc said we'll let the coils settle in and do an MRI in three months and go from there. Got to take the small wins. My question is: For you who had stents put in, how was the procedure? Are you on blood thinners? How has it affected your life? Thanks in advance!
  4. This is my first proper post. I have read comments on this amazing site for a couple of months now. My Partner, Donna set me up and used it for help and advise to best support me once I was out of hospital. I suffered a cat one bleed on 7th September 2019 whilst out on a park run. I lost the feeling in my right leg and arm (from what I can recall). I was conscious throughout. After a scan I was found to have two aneurysm’s one of which had burst. It’s worth noting that I am one of three Brothers. My younger brother suffered a SAH 15 years ago. My older brother suffered a stroke this Christmas Eve. Subsequent scans have revealed he too has an aneurysm and is awaiting a date for his coiling. My coils were fitted on the following Monday and I was discharged 18th September. Throughout my time in ICU and ever since, I have always struggled to accept what has happened to me. I felt like a fraud, like I was wasting the time of the Drs and nurses who helped me. When I read the posts on this forum it seems to enforce my feelings. I only had a cat one bleed, only had 2 coils fitted, only spent 12 days in hospital. I often think I should reply to some of the posts with my experience but then tell myself that I haven’t had the same experience, so how can I? Prior to this event in my life I was running a lot, 5 half marathons and the Edinburgh marathon. So I was fit and very active. Now 6 month post SAH I find myself struggling to walk more than a mile. That said I know I am very fortunate to be able to walk that distance. I started my re-integration to work 8 weeks after the SAH, an hour per day for a couple of weeks. I am currently working 5 hours per day. It has been a major benefit having a very supportive employer. Again I find myself struggling with what I am typing. I have it easy compared to a lot of others! I struggle with my employer telling me to take it easy and that I should slow down. I feel like I am taking advantage of my situation. My scars are not visible to me so I can’t see why I should be treated any different. The only time I realise I can’t do what I want is when I hit the wall. (Running terminology). I recently had 2 days off work after increasing my hours from 4 to 5 per day. Too many meetings and too many issues to deal with at once wiped me out. So why am I writing this post? Not sure really, other than to tell my story in hope that it will help me come to terms with what has / is happening to me? There may also be others that feel the same as I do, frightened to speak out?
  5. Hello, everyone, I am grateful to be part of this site! My 3-aneuryism SAH recovery is going well and I hope it will be so for all of you reading this. My chief complaint is an unexplained (to me) feeling that my head is full of water or jellow - my voice echoes, I feel unsteady and have trouble forming my words. I can't tie the occurrences to any particular situation, nor can I do so when it resolves. The occurrences only happen when I am awake and can last anywhere from an hour to all day. Has anyone else experienced this? Due to the pandemic, I can't get to my doctor and this issue is becoming more and more concerning. Thank you in advance to anyone who has a similar experience or comment!
  6. Hi Everyone I had a ruptured aneurysm 6 weeks ago which was coiled but am at home now. I have fatigue, tiredness and feel weak but that's expected. I have continuous headaches above my right eye and am trying to manage the pain. Has anyone experienced headaches and for how long. Any advice welcome
  7. Hi- I had an 8 mm cerebral aneurysm in my left ICA that had a small leak and then was repaired on Monday. I had a stent and coiling performed. I had a vasospasm in my ICA during the procedure and had excellent packing (37%). I am incredibly grateful for how well it went but I don't feel like I was prepared for the recovery. The headache behind my left eye has been awful. The (mild) confusion and exhaustion was more than I bargained for and today I tried to sign my name and couldn't. I had a minor leak/bleed before the surgery so I don't know what's going on. The emotions were overwhelming this morning. I focused so much on preparing for the surgery that I guess I didn't prepare enough for the recovery. I'd love to hear how other folks recovered from a basically unruptured aneurysm repair? Thanks.
  8. On Nov. 8th my mom suffered a brain aneurysm rupture. Which lead to her having a hemorrhagic stroke, which then in turn led to a subarachnoid hemorrhage.She had surgery to clip the brain aneurysm but they found another one and an AVM in the CT scan. All of this was an entanglement on the top left side of her brain. They took care of the aneurysm’s and the removed the AVM. She had major brain surgery on the 9th for all of that, and is now recovering.She can’t move the right side of her body too strongly but she does. She opens her eyes and moves around but it’s like she’s not fully awake. The doctor told us he doesn’t know how far she will go from here and only time will tell. She might stay this way or get stronger and make a partial recovery.We’re working on getting her trach off next week if she can pass a certain amount of tests. All of this has been very overwhelming, and I can’t imagine how it is for my mom. I read all these stories of people who wake up and are coherent right after surgery and it makes me worried. Should I be worried? Can someone tell me a few stories to help my anxiety. Thank you.
  9. Hi everyone I felt the need to come back on here after receiving some news this week from the hospital I was coiled at 4.5 years ago. I had a follow up MRA on 8th March this year and then had a follow up appointment with a Neuro consultant 19th March. I have been waiting since then to hear when they might repeat the MRA. In my mind, as there has been no change to my coiled PCOM aneurysm I had assumed I might get scanned again in about 3 to 5 years time... When I was at my appointment on 19th March I happened to notice an email on the consultants PC that was about me (attention to detail or just nosey...) and it mentioned that the "ICA is less conspicuous now"... I naturally asked what that related to and the consultant calmly advised that it was nothing to worry about, it is just a very small 'blister' in my brain that they have been keeping an eye on (what the hell???) and that it cannot cause another SAH so it is nothing to worry about. I left feeling a little unsure about this explanation, as in my mind a 'blister' could also mean an aneurysm!? But I tried to trust the consultants judgement. On Weds this week (08/07/14) I finally received a follow up letter from my appointment in March! (It has never taken this long before...). It reads, and I quote; 1. "In Decemeber 2009 she suffered grade 1 subarachnoid hemorrhage and underwent coiling of a right PCOM. She is also known with a small cavernous ICA aneurysm" 2. "the patient has been well and has stopped smoking" 1. The spelling and grammar is atrocious! Also they are now telling me that this ICA is in fact an aneurysm!! I specifically asked at the appointment what that meant and he specifically called it a 'blister'. He could have actually explained then that it is another aneurysm. I would possibly not be quite so stressed about it now! 2. That sounds like I have recently been smoking but have recently given up. Fact is I have not smoked since January 2007, which is actually 3 years before I even had my SAH in December 2009! I have called the Neuro dept today and spoken to a secretary who was going to email my specific Neuro consultant (not the guy I saw in March as I tend to see whoever is available, I have seen my Neuro consultant once, 3 yrs ago). The secretary was really good and completely understood my concerns and she hoped to get an answer today for me but I did not hear anything so I am hoping to get an answer on Monday now. The letter does state that following their review they have decided to scan me again in 2 years, so I guess this 'small cavernous ICA aneurysm' is not a problem then... But I do need to have some questions answered. Like; how long have I had it? How small is it? What could it cause if it gets bigger, if not a SAH? Questions I now need answered! It's not devastating but it's not great is it?! Kel x
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