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Brain aneurysm

Hi new to this group. I’m having a coil fitted in two weeks time to my brain aneurysm. I need to here off people please. Things like how did you feel after having this done. Is there things I can and can’t do after wards. They r going through a vein in my groin so scared right now. I can’t think straight. Thank you.

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Hi peppy and welcome.

Unfortunately not had a coil fitted. But suffered a bi through a rta.

Not much help I know ....But sit back and wait for someone to put your fears and worries to one side.

Oh and welcome once again.

Pax

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Thank you for responding x

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Hi Peppy. I had a titanium coil fitted intravenously 6 years ago after a burst anuerism. Because my brain was contaminated by the bleed, causing irritation and some lasting damage, I now have certain issues such as fatigue, balance problems & cognitive difficulties.

I gather that coiling as a preventitive measure has a very different outcome with fewer, if any, after effects although I guess that any procedure within the brain will need rest and recouperation afterwards.

I was hospitalised for 2 months whilst recovering from the haemorrhage but I know of people being discharged within days of coiling where bleeding hasn't occured.

Please try not to be fearful m'dear. Coiling is a straightforward procedure to a skilled neurosurgeon with sophisticated technology at hand. I wish my GP had listened to me when I suspected neuro symptoms ; maybe my bleed could have been avoided ?

I hope that, by preventing a more serious issue, this will eventually bring you peace of mind.

Come back to tell us how you get on won't you ?

All best wishes, Cat xx

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Thanks so much for replying to me with your experience! They only found mine because I had a car crash. So right now I’m dealing with post dramatic stress the doctors thinks as well as having coil in. But it’s good the heat that people were out of hospital in a few days. And yes I will let u no how it goes I go into hospital on the 12th feb. Xx

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I understand that it's more scary preparing for an op (especially as you're still traumatised by the crash). I knew nothing of the admission or op as the haemorrhage had rendered me unconscious, so I avoided any apprehension.

But once I was compos mentis and told I'd had a procedure on my brain, I automatically touched my head expecting a wound of some kind. When the consultant explained the method of access I actually told him to stop fooling around ! 😲

I'm expecting you back here before February's out to say all's good ! See you then m'dear......... 💐xx

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Hi there

I didn't have a coil either - my annie's base is too wide and the coils would just have fallen out into the artery and caused a stroke - but I did have an IV procedure like you are going to have, to insert a stent to try to repair the artery under the annie and 3ncourage it to deflate, and I guess it is quite similar.

You have probably already had a neuroangiogram to check the annie out. The procedure to insert the coils is identical, only they are pushing a catheter of coils around ahead of the catheter - and you will be under a general anaesthetic and be compmetely unaware of it all. Compared with angio the procedure itself is a walk in the park.

My op didn't go quite according to plan - I was under for 5 or 6 hours instead of the predicted 3, and almost immediately once I was out I had a migraine which lasted for over a week. Consequently I had to stay in hospital for about 5 days longer than predicted until the headpain became more bearable and they were sure it wasn't anything to do with the procedure.

Having said 'more bearable' I spent another two or three weeks of complete bedrest trying to get rid of the headache before I began to get up and about. I think I had about six weeks on the painkillers before I started to feel a bit more normal. But I am headache prone and always have been, plus I don't tolerate morphine very well so I was on lower strength painkillers.

It is hard to establish any after effects as I have other neuro conditions which have similar issues to those others report. I don't think there was any worsening in cognitive symptoms or fatigue from that which is 'normal' for me, once I had got past the first couple of months. But I have long had to pace myself and watch that I don't overdo things, which seems to be the main things that people report post surgery.

I hope all goes well and passes without incident for you. Most people report it as a relatively simple procedure with few after effects -hoping that will be your experience too.

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Thanks so much for replying. It seems every one has different experiences. The risk of stroke had been mentioned to me. Yet I’ve not read on here of anyone having one after surgery...which gives me hope. X

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Hello, Peppy2 and welcome to the group.

I've had two coiling procedures, the first was an emergency one, after a ruptured aneurysm, the second was elective, they found two other aneurysms in my brain when they were patching up the first one. I can give you details of my experience, but with the guidance that we're all different, this is one person's experience, not a 'universal absolute'.

I didn't know I'd had the first coiling procedure, because I was completely off my face on high-end pharmaceuticals due to the rupture, the hospital had opened my skull to drain off the blood and fluid, I was a little bit more concerned about all of the tubes and such poking out of various parts of me than I was about the steri-strip on my bikini line. (Seriously, I have bigger scars from shaving incidents than from the brain surgery...)

The second procedure is probably more relevant to you, I'm in the UK, so apologies if you're not, I'm happy to re-explain anything where I'm using UK-based terminology. There is 'some' NHS guidance to the procedure knocking about if you look for it, but, as is ever the way with the internet, you'll need your fact-checking facilities enabled. I'm assuming you've either just had, or are just about to have your pre-op check up? MRSA swabs, height and weight, heart and lung check, and the million questions they have to ask about previous medical history... I did find it a bit difficult not to get uppity with the doctor, they're the NHS, it shouldn't have been up to me to tell them my entire medical history, but, apparently, my medical records were 'on file' with the town hospital, not the city hospital where I was having the procedure...

I was admitted to the neuro-ward the day before my procedure was scheduled, that appears to be standard practice, to make sure you're properly fasted and rested. (The fasting worked, the 'resting' not so much.) 'My' Consultant Radiologist, and Anaesthetist came and spoke to me about the procedure on the pre-admission day, you can ask them any questions specific to your procedure, that's what they're there for. (Might be an idea to write them down? The Radiologist was a bit perplexed with my phrasing of "What does that bit of brain do?", I'm a control-freak, and wanted to know which of my top-to-toe check-overs would be the most 'important' to me when I roused from the anaesthetic.)

I was scheduled to be the first patient, there was some mumbling during the night, about waking me up for some toast at 2am, luckily, they didn't, because I hate toast almost as much as I hate being woken up. They did leave a bed-pan at the side of my bed, which is important if you're a female of child-bearing age, they WILL want you to provide a urine sample, no matter how much you argue that you're not pregnant, they still have to do it. (I DID argue... I'm sterilised, and hadn't been up to any of 'that' business for years, but they still wanted the sample.)

You'll be given your delightful outfit for the day, the hospital robe that fastens at the back (they decided to give me two, because I was just over 8st, so I was wrapped in two flappy-cloths, instead of one.) they will provide 'one size fits all' disposable pants, I panicked like hell when I roused from the anaesthetic, because the pants were GONE, then I remembered where the incision-site was, and that they can't get to your groin if you're wearing pants-as-big-as-a-tent. Compression-stockings complete the outfit, brain surgery is such a glamorous affair. You'll be given the special anti-microbial soap, and sent to shower before you have to faff about figuring out which way around the hole in the sock is meant to go. (Side-note, pretty much ALL I wanted after the surgery was hair conditioner, I'm strange.)

You'll be wheeled down to theatre on a trolley-bed, and your anaesthetist and surgeon will check you're OK before starting their work. A couple of needles went into the back of my left hand, and then the face-mask, "You'll start to feel slee..."

The next thing I remember is opening my eyes on the 'recovery bay', and starting my actually-pointless-but-still-important-to-me toe-to-top check of what still worked. Yes, I could wriggle my toes, yes, I could feel both my legs, oh GODS, where-are-my-pants etc. The recovery bay is very bright, so that the staff can see what they're doing, and it's quite noisy, because everyone is attached to massive great big space-age monitoring stations for blood pressure, heart-rate, blood-oxygen and such. You're assigned 1:1 care on the recovery bay, and, as soon as you 'come round' from the anaesthetic, your nurse will check in with you, before they start the monitoring processes. (The appropriate response to "How do you feel?" probably isn't "Like I've had brain surgery.", that's not an after-effect, but it did prove that my sarcasm was still intact.)

Glasgow Coma Scale testing starts, I think it was something like 20 minutes between cycles to start with, and then tapered off. Eyes/Verbal/Muscle, they'll check you can open your eyes, then shine a penlight in your eyes to check pupil dilation. The verbal test will likely be 'Do you know where you are?' or 'What day is it?', to check that you can understand a question, and process a response. The muscle-tests are 'Push against my hand' with either hands, or feet. (Your hands will probably resemble hedgehogs at this point, I had lines into and out of both hands, and the arterial line in my left wrist, some fascinating bruising from that one, but I'm a princess, I bruise like a peach.) It can get a bit more noisy, because all of the nurses are circulating, checking on their patients. Once you've had your first GCS and monitoring cycle, you'll probably be offered food/water/pain relief if you want it. I took the food, and then asked for ibuprofen, because I knew that the headache I had was an 'inflammation' one. It wasn't a terrible headache, it was just 'there', but that's entirely subjective, you can ask for 'something stronger' if you need it, don't try to be a martyr, I only stuck to the lower-end pain killers because I wanted to be out as quickly as possible. (I'm an idiot.)

You'll stay in the recovery bay until your bed is available on neuro-critical, there was a delay on my bed, because the ward had an emergency admission, I think I was in the recovery bay for about four hours. Neuro-critical is a bit difficult for 'elective' patients, depending on the number, and the condition of the other patients. Elective patients are generally lucid, and aware of their surroundings, some of the other patients might not be, they can be 'challenging', to put it politely. Be prepared for random shouting, and nurses who deserve medals the size of dustbin lids trying to keep everyone in bed. Brain-injured people don't mean to be difficult, but they're frequently very confused. The GCS and monitoring will continue for a minimum of 24 hours. (I updated my Facebook status about the staff on my mini-break all being lovely, again, sarcasm intact.) You'll be fed and watered (lots of water, there's a recommendation that you drink at least 3 litres of water a day... oh, and you'll probably still be hooked up to the monitoring station, so it's bed-pans, sorry.) your pain levels will be monitored, and you'll be offered pain-relief if you want it, I had two paracetamol after the evening meal, because the ward was bright-and-noisy, that's one of my personal issues, light and noise are uncomfortable, everyone's different.

What's supposed to happen next is that your consultant, or radiologist will assess you for discharge, that's the point where you will be able to ask about forward planning, and any restricted activities. My radiologist had noted 'home Friday, if well' on my records, and we hit a bit of a snag, because he'd already told me he was taking the whole of the Easter bank holiday weekend off, he wasn't going to be THERE to sign me out on Friday. (Back-tracking a bit, so that makes sense, I was admitted on the Tuesday, for surgery on the Wednesday, supposed-to-be discharged on the Friday.) I spoke to the ward-sister at shift change-over on the Thursday morning, and asked if I could have my various drips and tubes removed, so I could go to the toilet by myself, instead of bothering staff for bed-pans. She agreed, and I 'mismanaged' myself yet again (I have a history of it...) by getting myself dressed, and sitting on the end of my bed with my suitcase, like a crap version of Paddington Bear. (That's very 'me', because I'd had no control at all over the first surgery, I wanted this experience to be 'on my terms.') I didn't want to be in hospital any longer than I absolutely needed to, and the sister agreed that I absolutely didn't need to be occupying a bed on neuro-critical, so arranged for me to be transferred back up to neuro-general 'to await discharge.' That process took a few hours, and, in the meantime, the pharmacist came down to have a chat with me, 300mg of Aspirin after the surgery, and a daily dose, 150mg, I think, for 2 weeks after the surgery, to reduce the risk of clotting.

The staff on neuro-general will answer any questions you have. I was an idiot, my 'question' was 'can I go home now?', I was like the kid in the back seat of the car, asking 'are we nearly there yet?' They signed me out at 16.54 on the Thursday, I remember the time, because I'd overheard the ward staff saying they were supposed to keep me until 17.00, I don't think there's a word in the English language for how awkward I can be. I would not advise doing what I did AT ALL, because, yet again, I was discharged without a care-plan, that time it was entirely my own fault, I had some 'personal' issues at the time, and just wanted to be out of hospital, and home. (Another thing not-to-do is to try to go straight back to full-time work without any adjustments/adaptations 10 days after brain surgery. Yes, I am that idiot.) The staff are there to help, make use of that, and ask specific and relevant-to-you questions about what you should and shouldn't do after surgery, don't be a Muppet like I was.

What-to-expect-after-discharge will be entirely personal to the individual. The broad generalisations are that you will be tired, because of the disrupted sleep, and the natural anxiety prior to the surgery, your brain and body will take time to re-adjust, 'how long' is down to the individual. You probably will have a headache, there are now bits of metal sitting in your head, where there wasn't metal before. (Gods, 'brain splinter', that's a bloody awful way to think of it, but that's essentially what it is.) Human bodies object to having 'things' in them, the coils will cause local irritation inside the aneurysm/vessel, to encourage scar-tissue to form, and block-off the potentially leaky bit. You'll know yourself how much pain you can tolerate, seek medical attention if you can't manage it. With the incision being in the groin, you'd be advised to avoid straining/heavy lifting/doing the can-can for a couple of weeks, obviously keep it clean, and monitor for any redness/heat/swelling/discharge that could indicate an infection.

You know 'you', you know what your baseline is, we all experience the physical and emotional recovery differently. I could write a book about all the weird after-effects I had (I did, but nobody wants to publish it...) but each individual will have a different experience. Without panicking at every shadow, know yourself, and seek medical advice about anything that causes concern, you'll have the phone number of the hospital, there's Headway, and you can always report to your GP with any issues.

There's no absolute-rigid timeline with any of us, speak to your medical teams about concerns specific-to-you, and, for the love of all that's pure, don't do what I did, and pretend to be 'better' straight away, to avoid upsetting other people.

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A lot of your answer struck a massive cord with me. Made me chuckle lots! I was not intentionally awkward too but I think it's just my personality. I was like you on the Monday when I was discharged, bag packed, shoes on for the first time in 2 weeks haha. I had needlessly been there all weekend because there were no doctors who could clear me for home. I'd forgotten all about those muscle tests and questions about the date and prime minister. I really was grateful for everything they were doing but patience was not my strong point!

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Oh DEAR! I've just had a bit of a flashback to one of the REALLY inappropriate answers I gave to "Who is the prime minister?" after the first surgery. Safe to say it was one of the phrases we don't use in front of Grandma... I was a horror after the first surgery, really irritable, I kept snapping at the nurses that I didn't KNOW what day it was, because all of the days were the same. I repeat, they deserve medals the size of dustbin-lids. (That was also part of why I 'sneaked out early' after the second surgery, I didn't want to occupy resources that other patients needed more than I did.)

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Just would like to say thank you so much for tell me your story...now I have a picture in my head to what to expect which has been horrible and very scary to say the least. So you have put me at a lot more ease now!!!!! Thank you once again.

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I do tend to 'go on a bit', Peppy2 I know it's a bit of a problem for some people, reading my massive blocks of waffle, but I thought it might help you if I 'painted a picture' of my experience.

It is scary, there would be something REALLY wrong with you if you weren't concerned about the procedure. The procedure is well-established, and evidence based, the outcomes are really good, they have to include the stroke-warning, but it's generally a less-than-5% risk, which you have to weigh up against the much higher probability of stroke if the aneurysm is left untreated. Your medical team will go through the 'potential risks' again just before your surgery, and you'll have a disclaimer to sign, it's just legal-protocol, they don't do it to scare you. (In my previous job, I used to assist with immunisations in a school, I used to tell the panicky students "It's not a shopping list." when they started reading out the 'possible side effects' leaflet the nurses would give them.)

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Thank you so much for your detailed information even though I’m not due for surgery yet - this will prepare me and many people - many thanks again .

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Hiya Gaia_rising

Thanks for your post and it’s good to know all the ins and outs of this procedure. It’s hard to imagine that this procedure on such a delicate art of the body can be so straight forward and it’s easy to get carried away with scary stories... but it’s good to hear your descriptions that are so matter of fact, honest and down to earth.

Like it’s been said before everyone recovers differently but I think the real tester has been the rock and a hard place feeling that I’m fine going into hospital and maybe not so fine coming out but know that has to be weighed against a rupture and to do nothing when an anerysm has been detected is reckless.

My Mum and best friend had a fatal SAH which has made be extra scared though they were unaware they had them

Anyway hope you are all well now and thanks again for this valuable insight to help along the ones here who are approaching surgery and then can carry on with their lives

Regards Andrea

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You're more than welcome, Andrea.

(I'm more 'practical' than 'princess', and I remember how panicky-anxious I was just before I went in for the surgery, telling-it-as-it-is is pretty much all I can do to help people facing it.)

The other 'very me' thing I did was to fix myself into a mindset of "We're going with plan A." Plan A was that I would have the surgery on the Wednesday, that there would be no complications, and that I'd be home either Thursday or Friday. There wasn't a 'plan B', because I knew that if I started off down the rabbit-hole of 'what if...?', I'd never get out of it. I made sure I'd nominated my son as beneficiary to the death-in-service element of my pension, and asked my brother if I could list him as next-of-kin instead of my then-husband, until my son 'came of age.' (He was 16 when I had the initial haemorrhage, and 17 when I went in for the second surgery, and kicked his Dad out, that Phillip Larkin bloke was right...)

That outlook terrified people, as did my blase "I'll be back at work after the Easter break, it's only a bit of brain surgery!" I was terrified, but more terrified of 'showing weakness' than the surgery itself, so I masked my anxiety with bravado, to spare other people's feelings. The statistics for coiling are very good, it's evidenced that the risks are low, and the outcomes strong, but I still had a colossal panic attack just before I caught the first bus on the day of my admission, and REALLY wanted to jump on a bus going in the other direction, and just run away from all-of-the-everything. (Yes, I went on the bus, the soon-to-be-ex had gone to work, my brother had said his fiancee would drive me, but I've been in a car with her once before, I didn't want to have survived a catastrophic brain haemorrhage, and then die after she crashed us into the back of a bin-lorry or something.)

Coiling is a fascinating, marvellous technical advance, those of us who are viable for the EVC process are spared the invasive surgery involved in 'clipping', so the recovery period is much shorter, I genuinely was back at home the day after brain surgery, that's how routine/practiced the procedure is. Anecdotally, none of the other patients on the neuro-critical ward had any complications from elective surgery, the patients who did have complications were both haemorrhage/emergency cases, and the complications were with their draining procedure, not the coiling.

Absolutely nothing in life can ever be guaranteed risk-free, all any of us can ever do is weigh up the probable-outcomes. The medical teams, working in satellite around us do that, if the potential risk of a procedure outweighs the probable risks, they'll consider alternatives, they're the experts. (I can say that with absolute clarity, my 'first' aneurysm, undetected, ruptured, they located two more during the emergency surgery, the 'second' was viable, the third is in a 'risky' location on my choroidal artery, I have a head-pet sitting on my brain-stem, if that one has a growth-spurt, it's 'Goodnight Vienna.') The anxiety of walking around with a time-bomb in your head is something that a lot of us on here are familiar with, but we work within our parameters, without wrapping ourselves in cotton wool, what sort of a half-life would that be? The medical teams have to advise us of possible-risks, they'd be deemed negligent if they didn't, BUT, they're professionals, experts, and they wouldn't offer a procedure if the risks outweighed the benefits.

I'm an anomaly, I walked out of hospital, with my boots on the right feet (The 'wrong' boots, mind you, I married a gibbon, who brought a pair of boots I'd discarded because they gave me blisters, man couldn't find his own arse with both hands, and a map.) two weeks after a grade-4 brain haemorrhage. Having come through an event that 'should', statistically-speaking, have had more impact on me than it appeared to have done, I didn't feel it was fair just to leave the second aneurysm lurking, and wait for it to finish the job. I'm a fighter, a survivor, we all are, in one way or another, and, by electing to have some very clever people stick bits of equipment in our pants-region, and give us brain-piercings, we're hipper than the hippest of hipsters. We're a very special club, it's not all champagne and roses, but we're here for each other when it turns out to be tea-gone-cold, and some sort of mad weed that looks like it belongs in Little Shop of Horrors sprouting through the patio-paving.

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Hiya

You are truly an tonic for the terrified and your story is quite amazing😌🤗Im going to take a massive page out of your book of an inspirational life and yes I guess we’ve just got to deal with what we’re given

I’d just taken early retirement in 2014 and was looking forward to grabbing life when a routine MRI showed up those little horrors! Life has been quite strange since and though my newly acquired husband has been great and supportive it is nevertheless an isolating condition and I so know what you mean about a time bomb and not seeing the clock ticking. We’ve had discussions thstvno couple should have to talk about.

I’ve worked my way up and down the Country trying to find answers but finally found a vascular surgeon I trust and he also told it as it is about getting it occluded before rupture and as mine is not in a good place (posterior area of the brain) and my Mums history strongly advised on surgery.

I’m sick of myself and trying to cope with the anxiety of is today/night going to be my time and not wake up. So 15 March is my 2nd consultation and it’l be soon after that I think. I feel for you with the other one still there and having to live with it but admire you massively for your bravery. Have they offered a clipping. ?

I also feel there is not enough awareness about the causes of anerysms and preventions of rupture. A lot of people have them and don’t even know!!

Regards and hope your Sunday is going ok👍🏻

Andrea

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We all fall into this world of "You can only play with the hand you are dealt.", Andrea, other euphemisms are available, but this is a family-friendly site...

I'm not saying that my way of dealing with the emergency and then the elective surgery was 'right', it just worked for me at the time, and I'm still here, to take the proverbial out of the tale. Please don't anyone reading this think that my attempts to find humour in my own situation is in any way an attempt to diminish theirs. If I was a 'touchy' type, I'd hug you all.

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It’s nice to hear stories that you and others have ‘been there’ as the thought of what’s coming and never having done this before is daunting. It’s interesting how you and others deal with what’s happened.

Yes I agree it’s best to accept the hand that’s been dealt and sometimes that’s the hard bit.

Regards and thanks

Andrea

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Thank you so much for telling me your story and how it may be afterwards. I appreciate it a lot. I’ve just been put on the sick until the operation is done as last night was just to much... stress levels were at there highest. Once again thank you

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Hey don't worry I had one a year ago you don't feel a thing , you might feel tired for a while after but wake up and live life to the full x good luck hope it all goes well xx

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Hi Welcome and all the best for your procedure. I had a coiling after one aneurysm ruptured causing a SAH back in December 2017. I know my coiling was similar to the angio except I was under General anaesthetic. Tips from me: careful what you eat after you come round, I forgot I had been tubed and had marmalade on toast which burned my throat! I had a catheter in and the first few tinkles were very hard after they removed it. No pressure and struggled to get the wee out. But it does come back soon. You will be very tired after the surgery. The brain needs sleep to repair as my surgeon told me lots. He said just go with it! I had to sleep after anything like a shower, walk to the kitchen etc. You will hopefully not be that bad as there was no haemorrhage for you but do sleep lots and drink lots of water it really helps. My head feels very pressured and I get lots of ringing if I am dehydrated. All the best with it you are in good hands do let us know how you go!

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Thank you. And yes I will let you all no. I’m having this done on the 12 th feb. Just want it over with now.

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I had a platinum coil fitted 2 years ago after a ruptured aneurysm, I was out of it for the first week, and I was discharged after a fortnight. I was amazed at how quickly I recovered in spite of my age, I'm 75. I also have a non malignant brain tumour, so I have problems with balance and memory. Go in to the surgery with a positive attitude, I am just so thankful that this operation is now possible because as an ex nurse I nursed patients who had had a brain haemorrhage, and saw the devastating effects 30 years ago

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Thanks for your post you are an inspiration and a good help!

30 years ago is when I lost my Mum to a fatal SAH but there was no screening and certainly no endovascular procedures in those days. Cerebral aneurysms are so common and there should be more awareness as they are usually symptomless unless people have a rupture... though screening is not a routine thing.

The more people like yourself who tell their positive stories really helps the ones who on this scary road ... thanks again

Best Wishes👍🏻Andrea

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Hi Peppy, I had stents and coils fitted five years ago, through the groin. The operation went well and apart from headaches, which I have always suffered from, I felt little difference, obviously it is still an operation, which takes a couple of weeks to get over fully. I returned to work about a month later. I like you was apprehensive but felt it was better to have coiling than sit with a time bomb in my head, these surgeons do these ops daily, they are the experts and put your trust in them, good luck and let us know how you get on love Alice xx

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Thank u for replying. I am just scared of strokes as they said it could happen. I just wish it was over. I also wish I New how long I should tell work I’m going to be off. Also I’m wondering if we get restrictions after the coil is fitted things like this nobody has told me. X

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Hi Peppy2

I’m so glad you’ve posted on this valuable site! Not only because it is such a support but because I’m going through exactly the same thing as you. Gosh you’ve been through so much I guess you have to think everything happens for a reason and it wouldn’t have been found if not for your accident though traumatic.

My aneurysm was found 4 years ago and I just have an MRI each year to monitor though my recent vascular surgeon really advised to have it treated so just one more consultation with him and I'll be in. Like you I’m completely terrified (of hospitals and anything medical!!!!) but have done a LOT of homework over the 4 years of getting courage! I’ve also found and met others who have had it done on an unruptured anerysm and it’s a very different procedure than those unfortunate people who have suffered a rupture and as Cat says at the moment there is no brain injury.

I’ve googled and watched you tube coiling operations, webinars in US and UK and tried to understand the medical studies which is like trying to understand Japanese!!! But it’s nothing like speaking to people who have ‘been there’. I’m with the Walton Neuro now in Liverpool.. which hospital are you going to? I understand your fear completely but they are geniuses and they are improving the coiling and ‘Web’ operations all the time and they now have bigger monitors to magnify what they are doing etc.

My anxiety is especially worse at night so really know how you feel and although family/friends say they understand the isolation of this condition is crushing sometimes. Pleas contact me anytime when it all gets a bit much!!!

All the very best Peppy2 for the 12th will be thinking about you and please please come back and let me know how it all goes as I know everyone’s experience is different.. and no doubt mine will be round the corner ahhhh.

Best of luck and calming thoughts😌

Andrea

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Thank you Andrea it’s nice to here from you and who feels like me. I too am suffering terrible anxiety as well as I think post traumatic syndrome from crash and trying to stay in work...is hard. I’m going to be having this done in Newcastle rvi hospital as this is where I’m from. I will definitely let no. I no what you mean when people say this and that. But they don’t understand how it feels to have a bomb in your head. Nobody can unless they have one. And like wise get intouch with me if u need a chat. I’m new to this group not quite sure how to do private msg ha ha but I can reply to them as had a few. Take care and as soon as I’ve been sorted I will let you no just all the ifs buts and how’s. ha ha. I’m glad your getting yours sorted as I can’t bare it not being fixed and not knowing when or if it’s going to bury. Best wishes. X

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Hi Peppy2

I was under the RVI in Newcastle as we lived in Keswick when I first found mine which was initially through a random MRI because of my Mums history of SAH it was I guess. ‘Lucky’ find though I can assure you it’s caused a LOT of sleepless nights since and does affect my life lots. I love cycling and keeping fit but feel like wrapping myself in cotton wool!!!! My surgeon was Nick Ross but the vascular man was Anil Gholkar. I was so dubious about anyone messing with my grey matter!! But since then we’ve moved twice more and I’ve made my way down the country with new vascular guys (collecting new info and different views on things!) but for what it’s worth Anil Gholkar is regarded as great in his field👍🏻I could waffle on about this all day and sometimes feel I know so much I could do my own coiling hahah but it so nice to have found you!

Your going through a great deal and feel that PTSD councilling would certain ease your stress even after your surgery.

I will go onto the Headway sight and see if I can privately give you my phone number.

Try to have a calm day and maybe look at EFT (tapping) to help the anxiety!

Calming thoughts 😌

Andrea xxx

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Andrea yes that would be nice to have! The person doing mine is called Philip white. I no nothing about him. Wish I did !! As I don’t find him easy to talk too...(might be just me) I’m glad you have expressed how this makes you feel. Because I thought people were getting sick of me talking about how scared I am and how I can’t cope with day to day stresses right now. Also my job. Well I think I’m going to have to find a new one. As after having a crash car being smashed up completely the same day finding anrysm week later back to work they still have to be reminded I’m suffering anxiety and like you scared to do things ... just incase!! Yet they still put on to me. Shame really as love it there. But I’ve changed into a nervous silly person that doesn’t want to risk things. It’s like I’ve been took over and I’m not me anymore. Horrible. Xx

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Hi Peppy 2

Apologies this only just come through but I can really relate to the ‘changed’ person... it’s really difficult to accept when going along nicely through life then being hit with this. It’s not even like an injured limb where people can see what’s wrong.

I’ve got sick of worrying and know it’s old news to friends etc but still so terrifying to me after 4 years and thats the isolating bit. I was always a have a go person, taken chances and considered myself brave and like you I feel robbed of my personality. Reading other posts here and a few other sites we now belong to a different club and will be forever different even when we’re ‘fixed’ as this too has been hard to accept and I’ve felt quite sad at times.

On the upside though we defo are the ‘lucky ones’ that it has been found before any tragedy but I think it takes a good amount of time to accept the ‘new us’! Especially in your case the shock of your accident is a lot to take on but also this too. Does your employment have a personnel department you can turn to or even a union who can refer you to get some support.

Been looking how I can give you my number but nothing on the website so will give them a bell tomorrow.

I’m really glad I’ve found you🤗and we’ll find strength in each other to conquer these little horrors that have come barging into our life👍🏻👍🏻👍🏻Speak soon x

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Totally agree with what you have said. And yes look forward to exchanging experiences and emotions. Xx

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Aww I know Im googling Phillip White and this is what I did with all the places I went to .., honestly all the way down to Oxford!!! Sometimes you can read about them and their history.

You can see how I find it hard to trust the medics!!! To be totally honest though however they come across they are all totally professional and dedicated and in hindsight I shouldn’t have let my fear cloud my judgement of them.. it’s just their way. The RVI is also a hospital of excellence and you’ll be fine.

Speak soon x

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Yes feel a little better just to be able to take my time during the day and do as I please. I’m not sleeping much at all now... just keep going over and over in my head the ifs and buts that will happen after operation. Feelings is intense now. Got my pre-opp ass on the 1st. My husband is back from working away four days before the operation so it will be good for support although I don’t think it’s sunk in to his head just how this has changed me. Look forward to a chat one day

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Just one more thought the catheter they use is tiny and the coils are as wide as a human hair not the massive things we imagine them to be!!!!! Xxx

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Hiya Peppy2

Hope your feeling a little calmer as you haven’t got work to deal with as well in the anxious time.

I have enquired with Headway how I can give you my number but they weren’t sure so Ive put a general message to see if any knows. Also googled your surgeon at the RVI and he’s looks fine with a good background of experience. Although they are all complete geniuses in my book because we in an extra worried state it is hard to be reassured I guess.

At least you can get on with something that brings you happiness until your ‘day’ arrives. I’ve planned to do some visiting to my friends I left behind in my home town before I have mine.. and made a bit of a to do list.

Thinking about you xx

Andrea

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Hi I'm also due coiling in the next couple of weeks. I had my pre op today. I know how you feel. I'm scared but I guess most people suffer high anxiety for any procedure they are about to have. Good luck with everything

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Hi bobby what date is your operation? I hope that you are feeling okay and not thinking too much about the operation. Where is your operation and what date ?

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I also had my pre opp today for the 5th March and I totally understand how your feeling. Also for coiling. I actually found some people that my surgeon had already operated on and it was positive. I have now met my surgeon three times and I feel I can trust him impeccably, so that helps. Night time is always the worth . Very best of luck with surgery and let us know how it goes as will be thinking of you.

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Glad you have heard of positive things. Did any of them tell you how they felt after the coil was fitted? This is the bit that scareds me. And yes I will let you no how it went. Good luck to you

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