Dawny Posted February 25, 2021 Share Posted February 25, 2021 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. 3 Quote Link to comment Share on other sites More sharing options...
Dawny Posted March 30, 2021 Author Share Posted March 30, 2021 On 25/02/2021 at 20:39, Dawny said: . 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. Hi again, I thought I would try again to see if I could perhaps get one reply. It was my first time posting and took a lot of courage for me to do so. I know that this is a friendly and welcoming place from what I have read in the past and in response to other posters so hope someone will be able to respond in some way. I have received a letter for a telephone appointment next month so hopefully I will know more then as well. Thank you for reading and hopefully replying! 4 Quote Link to comment Share on other sites More sharing options...
Super Mario Posted March 30, 2021 Share Posted March 30, 2021 Welcome to BTG, sorry that no one has replied to you. We do have members who have been recoiled so hopefully someone will pick this up and reply. 1 1 Quote Link to comment Share on other sites More sharing options...
jess Posted March 31, 2021 Share Posted March 31, 2021 Hi welcome to btg I was clipped so cannot really offer any advice on coiling hope it all goes ok xxx 1 1 Quote Link to comment Share on other sites More sharing options...
ClareM Posted March 31, 2021 Share Posted March 31, 2021 Hi and sorry you didn’t get any reply to your first posting. I think you hit the nail on the head when you say He also said if it was urgent they would not have let me out of the room. No doctor likes to take risks with their patients, it not only affects the patient but their reputation too. I am sure if it was that urgent you would have had the surgery already. I work in the NHS and know Covid has delayed a lot but I am also aware that if a procedure is important it goes ahead. Also from what I understand, (though I’m not medically trained) a coiling when the aneurysm has not yet ruptured is usually a simpler procedure than when it has. You have an appointment in April so get lots of questions written down ready to ask. Hopefully you will get some answers then. In the meantime try not to stress ( hard I am sure) and relax in the knowledge that if your life was at risk they would have acted faster- Covid or not. Many people have had bleeds during this time and all been treated despite the virus. Good luck, keep us posted. Clare xx 2 Quote Link to comment Share on other sites More sharing options...
Tina Posted March 31, 2021 Share Posted March 31, 2021 Hi Dawny A very warm welcome to BTG So very sorry no one replied to your first post, i know how much courage it took me to post first time. Big hugs xx Again so very sorry xx I am pleased to read that you are going to have a telephone appointment next month and hopefully you will know more about what they plan for the next step. Must be awful for you, all the waiting! Agree with Clare, make sure you write down all your questions so you dont forget anything you want to ask. Sarah, Poppy and Lorraine have had a re coiling and have shared their experiences in the link below: Hope this may help. Click on the link below and scroll down the thread xx https://web.behindthegray.net/topic/3294-more-surgery-after-initial-endovascular-coiling/?tab=comments#comment-46184 Please keep us updated. Take care Tina xx 1 1 Quote Link to comment Share on other sites More sharing options...
kempse Posted March 31, 2021 Share Posted March 31, 2021 Hi Dawny, A warm welcome to Behind the Gray and I'm sorry that your original post was missed and not replied to. I remember that hesitation about posting for the first time so can understand that it can take some courage to do. Hopefully your trust in posting has now been restored by the responses you have received Much of your post resonates with me although my experience was long before covid was ever heard of. I had a SAH in Nov 2008 and following my first check up they wrote to me telling me they wanted to recoil the aneurysm and they were looking at doing this within the next 3 weeks. I took this time frame to mean it must be fairly urgent and my emotions went into overdrive! This 3 weeks actually turned into approximately 8 months before I had the recoiling done. During that time I had dates for the procedure booked twice and both times they were cancelled - one on the morning I was due to go in. Since then I have been monitored annually as my aneurysm has a wide neck and I also have a 3mm aneurysm which they check at the same time. Over these 12 years they have twice called me in to discuss treating the aneurysm for a third time although this has never taken place. In 2019 they incidentally found a DAVF in my brain, but to date this has not been treated either. What I have learnt over the years, having gone through what I have, is not to panic like I did in those early days and be grateful that I am still being monitored. I hope you're not waiting too much longer - I also know the feeling of relief after the procedure is immense. Wishing you all the best, Sarah x 1 1 Quote Link to comment Share on other sites More sharing options...
Louise Posted March 31, 2021 Share Posted March 31, 2021 Hi there warm welcome, so sorry we seemed to have missed this post - we are friendly... Take care, stay-safe.. 2 Quote Link to comment Share on other sites More sharing options...
Dawny Posted March 31, 2021 Author Share Posted March 31, 2021 Hi everyone, just to say thank you all so much for the lovely and helpful replies. It really means so much and has made me feel much better and reassured. I will go through each one again in detail (still takes me a while to retain information!) but just wanted to say how grateful I am to read all your responses and for the lovely welcome. 😊 7 Quote Link to comment Share on other sites More sharing options...
Daffodil Posted March 31, 2021 Share Posted March 31, 2021 Hi Dawny, I am hoping you feel somewhat reassured that how you are feeling is entirely normal but that yes members have come through who have required similar treatment of additional coils being placed. It sounds like they are saying the impaction of the coils could do with some topping up, so not a threatening issue but one that would benefit from that extra coiling. The view Clare shares is so true in that coiling in a non emergency situation is dramatically different and carry’s a different risk to when we are coiled to stop a bleed and that should be a little comfort. But keep talking to the doctors and also come talk to us when you get news, we promise not to miss you again. I have a neck on my coiled Annie too and get it checked regularly, in fact I go up to my treating hospital next week for a MRI visit, so know this could also be a possibility every time they scan. Take care and keep us posted, we will try and help you through this part of the story, 1 Quote Link to comment Share on other sites More sharing options...
Dawny Posted June 18, 2021 Author Share Posted June 18, 2021 Hi again everyone. Just a quick update. So after the telephone appointment in April the consultant said they would chase up with the team as they realise I needed a date but that a realistic timeframe may be the Autumn. Soon after I got a telephone appointment slot with the surgeon for yesterday. He said I needed to have the coiling with a stent and what were my commitments in the coming weeks?! I was a bit taken aback as wasn’t expecting so soon and just in the midst of moving house. So in the end they suggested August. I hope I’ve done the right thing. He said I have waited this long so one more month shouldn’t make a difference. I just need to mentally prepare myself as I couldn’t go straight from moving to hospital without a break in between. So relieved and terrified in equal measure. He said the stent would be more secure and would divert the blood away but I would need to take medication. 1 Quote Link to comment Share on other sites More sharing options...
Dawny Posted June 18, 2021 Author Share Posted June 18, 2021 On 31/03/2021 at 23:06, Daffodil said: Hi Dawny, I am hoping you feel somewhat reassured that how you are feeling is entirely normal but that yes members have come through who have required similar treatment of additional coils being placed. It sounds like they are saying the impaction of the coils could do with some topping up, so not a threatening issue but one that would benefit from that extra coiling. The view Clare shares is so true in that coiling in a non emergency situation is dramatically different and carry’s a different risk to when we are coiled to stop a bleed and that should be a little comfort. But keep talking to the doctors and also come talk to us when you get news, we promise not to miss you again. I have a neck on my coiled Annie too and get it checked regularly, in fact I go up to my treating hospital next week for a MRI visit, so know this could also be a possibility every time they scan. Take care and keep us posted, we will try and help you through this part of the story, Thank you Daffodil, that has been a great comfort. It must be very different as I only need to stay in for one night! I hope your check up went okay. I know how you feel about the scans although it’s good they are being so thorough and monitoring. 1 Quote Link to comment Share on other sites More sharing options...
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