My aneurysm is being filled with a coil

[Peppy2]

Hi. Everyone. Can I please ask people to let me no how they felt after they had this done. As I’m so scared of how I will feel when I wake up. I no I’m very lucky it has not burst. I just need to no the good and bad bits from waking up ect. Less than two weeks time for it to be done. Thank you

[Jacmidlands]

My 13mm aneurysm actually burst and I had coiling on December 8th 217 and I am fine. The hospital will give you lots of information on what to expect. If you are ok before the op there is every chance you will be ok afterwards. Of course, everyone is different in their reaction to any op and some have more side effects than others. I do get tired and I can't drive because I had a bleed but I'm hoping that the DVLA will allow me to drive soon. Have faith in your surgical team and don't be afraid to share your fears with them and ask questions. Remember that they have to warn you about any possible scenarios but just because bad things could happen, it doesn't mean they will. Good luck and let me know how you get on.

[Peppy2 in reply to Jacmidlands]

Thank you. I’m not afraid of the actual operation it’s when I wake up. My aneurysm is very close to the communication bit of the brain. Surgeon said it is a little tricky but can be done. Just scared of how I will be when I wake up.

[Jacmidlands]

PS as soon as I woke up in recovery I knew I'd be ok!

[Andersl]

Thank you. That reply was helpful to me too as I may have coils one day x

[Peppy2 in reply to Andersl]

Good luck can you please let me no how you got on. X

[GT500]

Hi Peppy, My 18mm aneurysm was coiled in 2012 and I'm still here annoying the wife. : )

Aside from some spasm pains after I woke up had no idea there was anything different, as I came around with a nice lady calling my name and patting me on the hand I had the uncontrolable urge to throw up, I was told some one by my bed not to worry as everyone feels sick after waking up, I then promptly threw up, it was slightly embarrassng.

I do suffer from a lot of pain but I did before my op, so it looks like it's just me for that side effect. But, on a day to day basis I have no idea that there's a coil of wire in my head, you don't feel like there's a weight wobbling around in there as it weighs less than the surrounding brainy stuff, you don't pick up radio 1 ( thankfully ) in fact when I think about it the only evidence I have are copies of scans I have.

Try not to think about it too much ( easier said than done ). : )

[Peppy2 in reply to GT500]

Thank you so much for replying. This is a great help.

[Gaia_rising]

Hello, Peppy2

When you come out of the anaesthetic, you'll be in the recovery bay, and assigned 1:1 support from a nurse. You have the 'advantage' of knowing what your surgery is, so you shouldn't experience the 'What are all these tubes sticking out of me, and where am I?' confusion that happens with unplanned surgery, that's not to say that 'knowing' is any better, and I sympathise with your anxiety.

Everyone has different baseline thresholds for pain tolerance, I can tell you how 'I' felt, as a guideline, but I must stress that it's 'my' experience, human beings are not a one-size-fits-all entity.

I'm a control freak, so I'd already asked my Radiologist and Anaesthetist what the most-likely complications of 'something going wrong' would be. They have to give you the mile-long list of 'possible' complications before your surgery, it is 'possible' that I could leave the house, and be struck by an asteroid, it's not very probable, though. For your medical teams to agree to undertake the surgery, the probable benefits, and positive outcomes will massively outweigh the probable risks. (I'm not telling you to 'stop' reading that line on your pre-ad letter that mentions 'risk of stroke', but the risk is generally less than 5%) The aneurysm I had electively coiled in 2016 was on my Superior Cerebellar Artery, and the most-likely complication would be impact on my vision. (There is some, but I can deal with squinting and headaches far more easily than I would have coped with walking around with the old time-bomb sitting in my grey matter.)

I'd been wheeled in for anaesthesia at something like 9am, and I think I opened my eyes a little before noon. I opened my eyes very slowly, because I could hear all of the activity going on around me, and knew that, if the room sounded that 'busy', it was probably going to be bright, I didn't want to complicate my personal check-over by staring straight at a light-bulb. I didn't feel disoriented, because I'd read-up on the process, I was in a 'strange' place, and strange-places have a tendency to tweak my anxiety, I'm prone to panic if I don't 'know' how to safely leave an environment. I knew that having a panic about not-knowing-where-the-doors-were wouldn't be helpful, and I also knew, from my previous emergency surgery, that sitting up, or trying to get out of bed wouldn't be an option, because of the various pipes and tubes 'trapping' me on the bed. (That's just me, I'm odd.)

The recovery bay is bright, and noisy, two of my least favourite sensations, but, I'd already convinced myself to be in 'behave yourself' mode, because I wanted to be discharged as quickly as possible. (Stuff going on at home, very 'me.') I had a headache, which I'd expected, mine was a dull, wet-cotton-wool background-throb, I'd been expecting more of a 'spiky' one, given that my brain had been rooted-about-in, but it was just a dull buzz. I'd checked I could wiggle fingers, toes etc, and was aware of sight, smell, sound, touch-sensation and taste. (Your mouth will probably taste like the bottom of a bird-cage due to the previous fasting for the anaesthesia, and it might also feel bruised/sore due to the intubation, I have a HUGE scar on the inside of my cheek from the emergency intubation from the first surgery, and had a slight split lip from the second- pack some lip balm in your hospital bag.)

I was aware of the incision site in my groin, but it wasn't particularly painful, I've said before, I have bigger scars in that vicinity from shaving mishaps. Again, for me, it was a dull, 'bruised' sensation, which didn't last more than a week. (They 'glued' it that time, whereas they'd used steri-strips for the first surgery, no can-can dancing, or Karate until it's fully healed, please.)

I wasn't hungry, but knew I needed to eat, so, when the nurse had done her first round of checks on me, and given me the Aspirin and a sip of water for my budgie-cage mouth, I accepted the offer of a bowl of soup. (Vegetable, I think.) Mind your mouth, because you might have cuts or scratches in there, also, it's a bit tricky trying to eat soup when you have needles and tubes sticking out of both hands, but it can be done. I was offered sandwiches, but my body tends to argue with bread, and kick it out in an explosive and undignified manner, I didn't fancy THAT happening while I was on bedpans, so I had two bananas for the carbs-and-sugar.

Bedpans. You may, or may not be catheterised, I wasn't after the elective surgery, but I was after the emergency surgery. (Made a RIGHT show of myself by repeatedly asking staff to bring me a fresh tampon after the first surgery, because I could feel 'something' in my pants-area. I was so insistent about it that the ex eventually brought me a pack of 'intimate wipes', because they're women's-things. I married a halfwit.)

I was moved from 'recovery' to 'neuro-critical' after a few hours, there was a delay, because neuro-critical had taken an emergency admission, but I was maintaining my good-girl behave-yourself protocol, neuro-critical staff deserve medals the size of dustbin lids, due to the 'challenging' behaviours of some patients. I'd remembered what a complete and utter zoo neuro-critical had been the first time, so I was prepared for the random shouting, and the nurses trying to keep the more-confused patients in bed. There's the possibility you'll be in a mixed-sex ward, I was both times, but you'll have bed-curtains for modesty. It can be loud, and potentially distressing, dependant on the state of the other patients, which was why I put myself in 'behave and be quiet' mode. After the first surgery, I had one fellow patient who was misbehaving with his sandwiches, and another who yanked out his drain-tube. After the second, there were three very disoriented and challenging patients on the same ward. (One screamed every time anyone went near his bed, one kept trying to get out of bed, and pull his catheter out, and one wouldn't keep his pyjama bottoms on.) I'm not saying you 'will' have similar neighbours, just preparing you for some shenanigans and amusing anecdotes. I'd had two ibuprofen on the recovery bay, and I topped up with two paracetamol after the evening meal. You know your own pain thresholds, and if you're in discomfort, the staff can provide 'something stronger', I'm a cast-iron b*tch, and knew that I didn't need codeine or morphine for my pain levels, everyone is different, and knows their own threshold.

The staff will gradually increase the time period between the Glasgow Coma Scale assessments. Dependant on the time of your surgery, they might have to wake you up in the night, to shine a torch in your eyes, and ask you what day it is... I dropped lucky, by having the first scheduled surgery of the day, so I didn't blow my top with any nurse doing her job. This time. I was a horror-bag the first time, I didn't know what day it was, and resorted to 'copying' whatever the patient in the nearest bed had said... risky strategy, given that we'd ALL just had brain surgery. You might not get much sleep, I know I didn't, but I'm a light sleeper at the best of times, please do catch up on sleep when you get home.

I can't give you a time-line on when you'll feel 'better', or 'yourself again', because we're all different, I had an on-going headache for about a fortnight, but it was manageable with paracetamol and ibuprofen. I did have some weird visual disturbances for a while, the 'big' ones have decreased in severity and frequency, but I still have a constant 'wobble' on everything, similar to the effect you'd get if you bumped a magnifying mirror whilst plucking your eyebrows. (Or shaving, boys, I'm not sexist.) I still had some residual vertigo-type issues from the first surgery, I can be sitting/standing perfectly still, and have the sensation that everything around me is moving, saves money on going on roller-coasters, I suppose. You might experience fatigue, in addition to the exhaustion from being sleep-deprived. Everyone's indicators that they are becoming fatigued are different, you'll learn to 'read' yours. Be gentle with yourself, you've technically incurred brain-trauma, however microscopic the coils are, there's still 'something' in your brain that wasn't there before, your brain might occasionally decide "No, thank you, I've had enough brain-ing for today.", because it's busy healing, as well as doing all the other things you need it to do. (My brain is every bit as co-operative as a toddler having a throw-down tantrum in the supermarket, sometimes, but I've learned to recognise when the cognitive fatigue is creeping in, and 'down tools' before I do myself an injury. Again, I had pre-existing brain injuries from the initial haemorrhage, you're not forced to have the same issues, because your surgery is less invasive.)

I know that in your previous posts, you've asked how long you'll expect to be off work for. This is where communication is key, speak to the medics when they discharge you, tell them what you do for a job, and ask them for guidance on how long to stay off, or any limitations/restrictions. (I missed that step with my second surgery, and the outcome was less-than-ideal.) If the medics don't know what you do, they can't tell you whether you're 'allowed' to do it or not. (10 days after my surgery, I was on my knees, with a child having a non-epileptic attack, and trying to explain to the paramedics that I KNEW there was nothing clinically wrong with her, but that she'd been 'down' for over 20 minutes, and there was the potential for parents to accuse me of negligence for not seeking medical attention... welcome to my life.) Speak to your employers as well, after my first surgery I took 4 weeks 'off sick', and then returned mornings-only for a further month. I put myself on 'restricted duties' for a while, until I knew I could tolerate the workload, and then stepped back in full-time. Have work write a risk-assessment, based on the guidance from the hospital. (Yes, muggins here wrote her own risk-assessment, being the only person in the organisation who was trained to write risk assessments *Face.*)

You know 'you', you know what your baseline-functional is, and what your pain-tolerance is. You might have side-effects, you might not, most of mine were residual from the emergency surgery, and I ended up normalising and absorbing them. Coiling is a low-risk procedure, but, if you're experiencing issues afterwards that aren't normal-for-you, seek medical advice. (In fairness, most of the 'advice' I've had has been next-to-useless "That might settle in time." or "You survived, some people aren't that lucky.", but that's personal to me, I just had one GP who dismissed everything with "you were lucky", and a consultant neurosurgeon who hasn't seen me since about May 2016...)

[Peppy2 in reply to Gaia_rising]

What an amazing reply thank u. It’s helped in all sorts of ways.

[Gaia_rising in reply to Peppy2]

Good, I'm glad that my tendency to 'tell it as it is, warts and all' helped.

It's perfectly natural that you're anxious, it's brain surgery, not a hair-cut, BUT it's a well-evidenced procedure, and your medical teams wouldn't have offered it if they didn't think it was the best option for you. I've 'come through' coiling twice now, and I'm glad I had that option available, rather than anything more invasive. My third aneurysm is in a 'risky' location for coiling, so I'm on 'conservative management' or watch-and-wait with that one, with a decision to be made if or when it enlarges between monitoring scans.

My pain levels were 'discomfort', rather than 'agony', we all experience and tolerate pain differently, but I managed on the Aspirin for clot-prevention, then two ibuprofen, then two paracetamol, I don't think I even needed to dip into my co-codamol reserves to cope with the niggly 'background' headache when I came home. I was admitted on the Tuesday afternoon, for surgery Wednesday morning, and I was at home by Thursday evening, that's how 'routine' the surgery can be.

I'm here if you want to ask anything else.

[Peppy2 in reply to Gaia_rising]

That was fast in and out of hospital I like the sound of that ha ha.

[Twinkledum in reply to Gaia_rising]

I know this is a year ago, and I've already had my surgery, but I just wanted to thank you for such a wonderful post. I really (REALLY) wish I'd had something like this before my surgery. I was such an anxious mess (on top of my existing panic) and I am a control freak, so the unknowns freaked me out. I didn't have even a tenth of the "what to expect" information you provided. And if one more person told me "at least it's not cancer!" and "some people aren't as lucky!" I was ready to provide a swift throat punch. 😉 We know that, of course, but... Having a ticking time bomb in your head and the prospect of someone fiddling around in your BRAIN is, well, slightly scary.

Anyway, thank you SO MUCH for taking the time to give such detailed and helpful advice. This should be printed and given to all coiling patients before and/or after surgery.

[Gaia_rising in reply to Twinkledum]

Aw, thank you, Twinkledum ! I'm practical/pragmatic, and have mega control-issues myself, I pretty much typed out what I would have wanted to know at the time, in the hope it could settle some of the anxieties of other people.

We're all different, this forum has been brilliant for experience-sharing for me, the poor old NHS are so over-stretched that communication around surgeries isn't always brilliant. I'd have been inclined to contemplate violence on anyone who told me "At least it's not cancer!", too. (My big communication issue with the majority of medics has been the "Don't worry about that!" platitude, I'm not 'worrying', I'm calculating probabilities, give me the most-likely outcome, and MY anxieties settle, it's brain surgery, not a hair-cut... Oh, and the absolute pantomime of one of the nurses insisting I provide a sample for a pregnancy test an hour before the surgery, that did turn into an argument. There was no way I could be pregnant, and the nurse went off on a tangent about some patient who hadn't re-started her contraceptive pills after surgery, and became pregnant as a result... not relevant.)

To some extent, we're 'The blind leading the blind', and I'm always cautious to point out that I'm only describing my own experiences, there is no 'What to expect when you have brain surgery' manual, although Headway do provide some literature that can be helpful.

Soldiering on, because it's what 'we' end up doing, I've finally stamped my foot for a referral to Neurology, after almost four years of "That might ease off in time." symptoms that haven't eased off. (Don't get me started on 'thinking happy thoughts' when people glibly tell me how 'lucky' I was to survive...) Onwards and upwards, after a rough couple of years, Neurology will see me in April, and they'll either be able to address my ongoing symptoms or not, at least I'll know I tried.

[Lyndaryan1]

Hi,

Is there some specific reason you are having a coil procedure rather than a clip?? I've had a rather large aneurysm clipped so if you change your mind I may be able to help with a little bit of information.

Regards

Lynda

[Peppy2 in reply to Lyndaryan1]

I was only offered a coil so not sure why I wasn’t offered a clip

[Lyndaryan1 in reply to Peppy2]

Hi again, I was offered both clip & coils. As the coils were much less invasive it looked the easier option but the clip was a one step procedure that once fitted the job was done & over. All that was required afterwards was one check to see it was in the right place. The coils were a continual process of hospital visits on a regular in my case 3 month basis. As you can imagine my family were up in arms when I opted for the clip but in my own case I knew it was the right choice for me. I was really lucky I has a first class surgeon who I had a really good relationship with & who I trusted to do the job. I have no regrets whatever & I'm still happy I made the decision I did.

Good Luck to you I know it's a worry that plays heavy in your life.

Lynda

[Peppy2 in reply to Lyndaryan1]

I didn’t no I had to keep going back all the time. He told me he would check it in so many months time after he done it to make sure it was filled completely and if not they they would top it up. ? Does anyone on here with coiling had to keep going back ? Thank you for you reply

[Lyndaryan1 in reply to Peppy2]

I researched both options as best I could & I found chronic fatigue to be a problem with the coil option with some patients. Maybe to check both options would be really useful for you rather than find out later there is another option & not just coiling. I did read about a few patients who started with maybe 8 coils & ended up going to as many as 16 then having to have the clip anyway. Maybe in your own case there may be some reason you are not been offered the clip but it won't hurt to find out about every option.

Regards

Lynda

[Peppy2 in reply to Lyndaryan1]

I just no I was not offered any other. I wonder how people feel so tired after cooling as it’s the less invasive surgery? Im always tired during the day anyway. But recently since I found out I had this afte having a car crash I don’t sleep during the night. So just hoping it’s no worse as I will never get back to work.

[cicigirl123 in reply to Peppy2]

Hello sorry for the late reply good luck with your surgery and may God bless U. I had a coiling a little over a year ago. Hardest part for me was the not knowing like someone else mentioned. After surgery I didn't realize anything was done(still don't notice any strange sensations or anything). Since my surgery I've only been back to the doctor for two angiograms and from this point on I will only have a yearly MRI just to check on placement(keeping in mind everyone is different). I'm very pleased with my decision. Will be praying 4 U hang in there this is the hard part.

[Peppy2 in reply to cicigirl123]

Thanks so much. And glad yours went good.

[MCAM2 in reply to Lyndaryan1]

Hi Lyndarya1, I am on a waiting list for a 12mm left MCA M2 bifurcation aneurysm clipping , at the Atkinson Morley wing ,st Georges Hospital Tooting by a Mr Johnston neurovascular surgeon . Could you let me know how yours went as I am very concerned about it . Regards David

[Lyndaryan1 in reply to MCAM2]

Hi,. I did a full vat return within 3 days of discharge after my surgery. I made the mistake of thinking I was good to go with no thought at all about the anaesthetic I'd had. I'm really good now & if I could advise you at all it would be just take it easy after the surgery & please remember you will have had a rather large dose of anaesthetic which will be masking lots of things. Other than that I was lucky that I had a first class young Portugese Surgeon who really cared!! He's now working in London at the London Neurology Hospital but in even the small things like head shaving etc it was as minimalistic as possible not like some I've seen. It's small things like that that really showed me the care, respect & dignity this young Consultant showed me. I'm typical blunt Yorkshire so he enjoyed my candid humour but whatever it was WE GOT ON!! I trusted him totally & knew he would do his best for me & you can't ask for more than that. I'm in the middle of my third vat return at the moment which is due at the end of the month so you can see I'm taking my time & progressing really well. I know I couldn't have coped with the coil option always going back for scans & maybe top ups but that's just me. I don't for a minute have a single regret of the route I chose & I wish you the same result as myself!! It's ALL GOOD!!

Lynda

XXXXXX

[Lyndaryan1]

Good Morning,

Maybe on your next appointment you should be asking why both options were not made know to you or why the clip hasn't been mentioned. I had my clip fitted in August last year after it was found in December 2016. As I said previous I trusted my surgeon from the first moment we met. I had my surgery in Hull East Yorkshire and he has now moved on to London and is looking after very young children. I know my family were shocked when I opted for the clip surgery rather than the coils but I had read so much about Chronic Fatigue after the coils and like I say I saw many posts on this website where more and more coils were fitted until the clip had to be fitted in the end anyway. I think some of these cases were due to the vein collapsing that they used to insert the coils. I just wanted to lead as normal a life as possible once the risk factor was removed and not give myself another ongoing problem that would stop me from doing that and chronic fatigue didn't seem much fun to me nor the hospital visits on a regular basis always having the worry and stress of if I needed more fitted. In my case once I had been diagnosed the worry started while I was waiting and that was bad enough without having more and more worry later. I just think it wouldn't hurt to ask and then at least you can make a more informed decision. Like I say your aneurysm may be located in such a place that the clip might not be available but I sure as hell would want to know if it is or not. I think the fatigue is caused by your brain not liking any foreign bodies hence even a lumbar puncture can cause some serious after effects on some patients. This is only a needle sample taking fluid so the coils stay where inserted and your brain can take an age to accept them been there plus is more need to be added at a later date then the brain has to come to terms again with the added amount. I just think the better informed you are then the better decision you can make. I know some people may think the clip is more invasive so more dangerous a procedure but when it's done it's done and all the risk and hospital visits cease. I know in my own case no way would I want to be returning to hospital on any sort of a regular basis. We are all different and all cope with situations in different ways but I honestly believe ALL options should be made available unless medically there is some valid reason why they are not.

Good Luck

Lynda

[Peppy2 in reply to Lyndaryan1]

I don’t have time too do that as I’m having it done this Monday. Hence why I’m so terrified I didn’t realise I’d have to keep going back. Thanks for all your info.

[Jacmidlands in reply to Peppy2]

I had coiling and have to go for an MRI at six months and eighteen months. I don't think that is 'having to keep going back'. I'm glad that I'm being monitored and there's no reason to think it will have to be redone. I prefer this to having part of my skull removed and all the associated risks. In the end my consultant made the decision and he is the one with all the expertise.

Good luck on Monday.

[Peppy2 in reply to Jacmidlands]

How did you feel after you first come around after your operation. Thanks for your reply

[Jacmidlands in reply to Peppy2]

I remember being in recovery and my mouth was very dry. I had a nurse monitoring me. I remember having an oxygen mask on and trying to take it off. The nurse wanted me to keep it on. Then they gradually remove cannulas and the tape that keeps them in place. All the time they are monitoring your vital signs. They leave at least one cannula in so that they can give you fluids or pain killers if needed. I was in recovery for about an hour and the surgeon came to see me to say that the coiling had gone well. After that I went to step down, I didn't need to go in ITU. Once back on the ward all I wanted to do was sleep. It's important to have plenty to drink and I had to have tablets every four hours so they kept waking me up to give me them and check my blood pressure. The first day or so is just a blur since you're just want to sleep off the anaesthetic. I wasn't in much pain but they offer you paracetamol if you need it.

In many ways I was lucky, because it was an emergency I didn't have time to worry!

[Peppy2 in reply to Jacmidlands]

ThNk u for letting me no and glad u are good now