Newbie 41 and scared

[Navillus]

Hi just be diagnosed with an unruptured M1 cerebral aneurysm. So scared as mum of 2 and been told got to have open brain surgery and there will be some damage as worst type. On 3 arteries, deepest part, can coil or do endovascular. So scared that gonna die or worst become a burden to my family. Feels weird writing something so dire like I'm talking about someone else. Anyone had an M1 fusiform aneurysm?

[cat3]

No m'dear, I had a Subarachnoid Haemorrhage which was coiled.

I'm so sorry to see how upset and apprehensive you are ; a natural reaction of course, but it's good you've opened up about it here and I hope someone who's been in your situation will see your post and offer some reassurance.

I suggest you phone the Headway helpline for some extra advice and support. It's a free call - weekdays - 9am - 5pm on 0808 800 2244.

I understand how surreal everything must seem right now but please try to hang on to the fact that brain surgeons are highly skilled, dedicated practitioners with every possible high-tech piece of equipment at their fingertips. I was fortunate in meeting mine at my first recall appointment and found him to be the most intelligent yet compassionate of men.

I've only the highest regard for these people who take on years of intense study and specialist training, to work behind the scenes in putting us back together again.

I hope you have support for your children whilst you're hospitalised ; some people here have described how making all the domestic arrangements for the duration of their op and recovery period is a helpful distraction.

I wish you all the very best my dear. please phone the helpline tomorrow before they close for the weekend. All best wishes, Cat x

[MXman in reply to cat3]

Morning Navillus, My thoughts are with you as Cat said you sound very worried but are in the right place for friendly help and fellowship. Speak to Headway and talk it through with them.

When I had my accident in 2015 everything felt cereal and like a dream I couldn't wake up from but it passed and the new me is coping with life.

All the best. Nick Xx

[Hidden]

Hi Navillus.

Sorry, I can't help you as my husbands bi was caused by an accident. However, just wanted to say that we all understand how you are feeling. The brain is so important that anything to do with it becomes very scary. As others have said, contact Headway - find out everything you can about the problem and the solutions, then you can make informed decisions about your treatment. Do hope everything goes well for you and your family.

This is such a scary time for you all and our thoughts are with you. Keep us updated.

Jan

[Navillus]

Thanks everyone for your replies and support. It helps to hear people that have come through a bleed and they're doing ok. My surgeon has been lovely but said in light of my type gotta to be realistic there are higher risks than normal, doing uni course which details the side effects and what can actually go wrong. Ironically one of my exams is to explain what apraxia, aphasia and left hemisphere damage so in my face what can go wrong doesnt help. Mine actually right hand so on a good note shouldn't effect my speech so much but he has said he has had patients die from this surgery and he may not even touch it if he goes in as unsure of success. They are so talented and yet he seemed so reticent. I know I have no option coz young he said could burst easily as showing signs of weakening. They can't operate till at least May and feel like I'm going stir crazy with every twinge in my head which is probably normal twinges but I'm scared at everyone now. 5 months seems like an eternity to wait.

Trying to concentrate on getting things in order by getting will sorted, Helps to text it out as no-one will even discuss it. They're all so scared too and just saying oh it's gonna be fine but I think they're scared of acknowledging what might happen. I realise this is them being more positive than me but I feel like I need them to be realistic - it's not gonna be ok, it's gonna change things, there will be damage surgeon has said so but can't say how bad it will be until they know how it reacts. Guess I'm just impatient to know answers that I'm not gonna have answers to until it's happening. Lucky it's been found as he has said if it bursts unlikely to make it as on 3 arteries.

[DTBI]

My heart is with you, big issue to cope with, particularly taking account of the family. I only encountered a re-design of my skull and being a bloke we are not as sensible and as sensitive as you ladies. There are some odds that you'll survive the op well, there is a Brain Aneurysm forum via the NHS website which you might find supportive and helpful.

Best of luck, my thoughts are with you x

[Navillus in reply to DTBI]

Thanks for reply - what's a redesign of skull? I know I really should be focusing on the 50% survive not the 50% bad.

[DTBI in reply to Navillus]

Hi Navillus, I had a similar brain injury. Apparently it was a subarachnoid haemorrhage caused by the heavy impact to my head. They decided to cut half my skull off, to allow the bleeding caused by my brain blood vessels to sort themselves out. To assist this, they placed me in a coma for a couple of weeks. Occured back in 2014.

Have to say my 'no big deal' mentality gives me some confidence that you'll cope with and benefit from your Op xx

[Kati3]

Hello and welcome,

Wow such a lot to take in and naturally making you worried, I can imagine more so as you are a mum. Unfortunately I can't offer any help regarding your operation, my bleed and facture was after a bike accident. All I can say is the surgeons are amazing and saved my life, i'm hoping they will be able to give you a positive outcome. In the mean time take care of yourself, do whatever you feel like doing. Xxx

[Hidden]

Yes, they have said you will have a degree of damage after the op. If you read posts on here, you will see that everyone had some type of changes after their brain injury. You will also see that with hard work and stamina, most of them have recovered to lead an almost normal life. Take heart from the amazing stories here - many people (or their families) were told that they would never live a complete life in the future, some were expected to be unable to do anything - but look at the way they have fought back to near normality. Hopefully, this can also be your story. You are young and healthy, try to focus on the bright side.

It is very scary for you at the moment, the unknown always is. Try to focus on the positives - if you don't have the op you won't be here to see your children grow up and marry. With the op you have a very good chance of having a reasonably normal life with them and will see your grandchildren grow too.

All the very best.

[Navillus in reply to Hidden]

Haven't explored enough on here to see how people have faired. Was kind of hoping to hear that people have found ways round or adapted or someone similar to my type to alleviate the worry. This is second time around as been only just got discharged from neurosurgeons from accident in 1994 where I was struggling to walk. Was much more positive last time but feeling annoyed this time as been long time getting to walk again and my anxiety I suppose is losing that all again, guilt at putting my family thru more strife and fear of ending up back at square one. Will try and be more positive it's just been building up as haven't been able to talk to anyone.

[razyheath43]

Yeah ring Headway! they are really good. Brain op does sound scary! but you will be fine. Think postaive and get some support from Headway in youre area

[nippybird]

Hi Navillus,

Have you been offered any psychological support from the hospital? I think it might be really beneficial for you to talk to a counsellor about your fears and worries, especially in a place away from family and friends, who no doubt are worrying about you.

I'd also like like to say in the words of Leo Busgalia “Worry never robs tomorrow of its sorrow, it only saps today of its joy.”

Try not to worry over the next few months, and trust the neurosurgeons to do their very best for the best outcome possible, I wish you strength and fortitude xxx

[Navillus in reply to nippybird]

Love that saying thank you for words of encouragement. No they havent but it's NHS and all budgets. It's second time round under the neurosurgeons and know they've done amazing job before but they are very non-commital on success this time which is worrying me. I am writing letters to my children in case, preparing a will and hoping that result will never happen. I shall watch on here and be encouraged by everyone's strength of recovery in the meantime.

[Silmarillion]

Dear navillus

I had a fusiform aneurysm. I only found out about it after it ruptured causing a sub arachnoid haemorrhage, which I did not expect.

It is difficult news to try and process that they have found an unruptured aneurysm in your brain. I was quite upset when I was told that I had one that had burst. My neurosurgeon was very good though and he really did know what he was doing and I trust him. He went through everything with me and answered my questions. If you have questions for your surgeon write them down before the consult.

You are in a good position where the aneurysm has not ruptured. This will mean that you can have the surgery to clip or coil it without the added problem of having to deal with a brain haemorrhage alongside it. Afterwards they will keep a very close eye on you and if you show any sign of any post operative complications they will notify your surgeon Asap.

It would be better for you to have the aneurysm dealt with before it perforates and does any damage. If you just left it, there could be a risk that it bursts and you have a bleed on your brain, and you can't predict what the outcome of that would be. It's still a hard decision to make given your circumstances?

My neurosurgeon had a specialist nurse on his staff. She was excellent and we could call her and she'd get back to me about any questions I'd need answered. She has given me a lot of support.

I am a few months down the line from my perforated aneurysm and brain bleed. I'm still having a few problems with headaches and hydrocephalus and nausea and some short term memory loss. I'm hopefully going back to work at some point over the next couple of months.

It's important though that you have somebody you can talk to and who will help you out with the children before, during and after the surgery. you'll need to talk to the kids and tell them you're going for an operation and ask them to be good and keep the noise down when you get home afterwards.

Best of luck to you. I hope you're operation is successful and that you get all the support and attention you'll need.

[Navillus in reply to Silmarillion]

Do you mind if I ask where it was? Mine was at M1 on my right hemisphere. They are doing open as coil not an option. With the positioning and being on three arteries they have warned me there will be some bleeding anyway and some damage which they will try and minimise. They have given me 50/50 odds. Said likely to suffer stroke as bleed in that area will more than likely induce one. I'm in the middle of a degree which I assume I will have to try and defer. I was hoping to have it done and be recovered enough to start again in Sept with 3 months to recover but feeling that's optimistic and should take 1 year out.

[Silmarillion]

I had the aneurysm on my posterior communicating artery on the left internal carotid. It wasn't suitable for open repair so they coiled it successfully. At the time of the op I was away with the fairies and I was pretty confused and in immense amounts of pain. I was much better after the surgery though I still needed further treatments.

Just remember that they can do a lot of intensive treatment via the physio and OT etc on people who have been left with neurological deficits due to a bleed. At this stage you don't really know how the surgery is going to affect you? When they say that there will be a 50/50 chance of you having neurological deficits post op..., they can't really say what these deficits will be. They may be mild? Any surgery to the blood vessels of the brain or anywhere in the body carries a certain amount of risk. Your doctor will know what these risks will be and will have a plan in place to try and deal with any problems once they arise at the earliest possible opportunity. If for eg you did bleed post op. The nurses would be monitoring you for this. If your doctor thought you were bleeding then he could take you back to theatre and minimalist the bleed by surgical means.

A lot of people who have aneurysm repairs are at extra risk of having a stroke due to vasospasm. They often put you on a drug called nimodipine which can decrease the chances of vasospasm post op during the period where there is a higher likelihood of vasospasm I've for approx 3 weeks or so post op.

It's a big operation and you don't want to put yourself under too much pressure. I would have a chat with your neurosurgeon about deferring for a year....at least this gives you a good long period to recover as you also have children to care for. It just cuts you a wee bit of slack for a while. Go into college and tell them what's going on. My employer has been so good to me about taking time off and has given me so much help and support.

[Navillus in reply to Silmarillion]

Thanks that has helped - I did hear of Nimodipine but didn't know what it did. 50/50 refers to live or die. Neurosurgeon has explain really in a bad position and challenging for him to treat. Usual risk in many that can be coiled are 5%_ 10% risk but because mine is on joint of 3 arteries will not be able to treat with coils or endovascularly. He has warned me that may go in and do nothing if he thinks I'm at risk of death and he is not able to do anything. Has said he cannot be 100% sure what to do until goes in as CT is obviously just picture. They are going to try clipping it 3 ways but will not be able to eradicate it completely and he knows there will be a certain amount of a bleed and damage cause but not to what extent.

[malalatete]

Hi Nautillus. I have a 9mm bilobed annie on the junction of the ICA and left opthalmic artery. One of the bubbles has engulfed the artery junction. I went in for an endovascular procedure - inserting a flow diverter - in June after it turned out that my annie couldn't be coiled or clipped because it was too wide based, morphology too complex, plus to do so would leave me without sight in my eye. So I am left with it - going back for follow up angio on Tuesday to see whether any change.

Like you I was given some pretty scary odds for surgery -at least before they realised they were not in a position to operate. Even the non invasive procedure I had got complicated. Like you I wrote my will, letters for my 2 boys and husband, prepared everything I could before going under.

And what can I say? It hasn't killed me yet. Each day it is there and the risk is ever increasing, it can feel a bit like russian roulette if you let it...

In the end though I have come to some kind of acceptance. You have to, I think. This is way beyond my control. I have done the best I can with the things that are in my control, and beyond that I just get on with life, one moment at a time.

Listen to your surgeon, then your gut. You will work out how to make your way through this, I promise you.

Very best wishes

[Navillus in reply to malalatete]

Malaltete thanks so much for your response. You've given me the boost I needed. I know your right. Been finding it tough this week as doing will and letters so upsetting but can't let it ruin the time you have otherwise I suppose it wins. Best wishes to you also x

[Crocus]

You might want to check in as well to Behind the Gray which is mainly a forum for folks who have had annuerisms, SAH, NASAH and who share their experiences.

I had a grade 4 with hydrocephalus a few years back and family we're told I probably wouldn't make it but here I am to tell the tale. I agree that whilst it is scary to consider high risk surgery you have to go with what is right for you and trust our docs as much as you can, nothing is without risk. I do understand how you feel as I subsequently had to have another surgery to place a VP shunt three months after Having had an EVD placed at time of bleed and coiling . Another head shave, more invasive surgery but it had to be done.

Like you I was a mum of young children and it was hard to consider and ponder what the future might be like. The answer is it's a different pace and outlook yes and the kids do ok as long as you keep talking to the,. You have to understand that the surgery even successfully completed will result in a trauma to your brain but hopefully that will be very slight and far less than the risk and trauma that comes from a bleed and the uncontrolled aspects of that. I think 2/3 peopl who have a SAH don't make it sadly so if I was you I'd take the surgery and with time you will adjust, adapt to whatever the outcome which will hopefully be very postive anyway.

Good luck .

[Navillus in reply to Crocus]

Thank you

[Navillus in reply to Crocus]

I think that's what bothers me - who I will become. With the placement of my anerysm and difficulty in operation (my surgeons words not mine) he has said honestly there will be some damage. I am currently in my second year at university after deciding to change my career and it's a real possibility that I might not be able to continue. I have invested so much time and effort (and expense) and just as I'm about to finish my third year this happens. I sound so selfish (and get angry with my own attitude) as surviving, my children, my husband and my health are the important things I know. I guess got to just wait and see whether I will be ok enough to continue. In some ways (and I don't mean this really as I know a burst aneurysm can be so much more damaging) but I wish there wasn't the ( months contemplating it, that it just got dealt with so I knew what I am going to have to change.

[Crocus in reply to Navillus]

I get what you mean about the waiting and thinking. When my Annie burst I knew nothing, had no choice if you like, that was me out of the picture at least for the first week and I have no memory of that or all the tough decisions and anxt my family went through. Then three months down the line I had to make the decision, it was my call, except it wasn't really I didn't have a choice but even then you just tread the path as best as you can.

I'm not going to say don't worry, this is huge for you and the family but only time is going to tell you on this one. Study is going to be hard yes post any brain surgery but not impossible as long as you go at it sensibly.

Don't write yourself or your possibility of achieving ambitions in future off. My stamina and limits are different to those I had previous but it's just a different way of going after what I want to do now and some of that is the same but some is different also. I just make different choices and trade my time differently now and doing that sensibly I can still do most of what I set out to do, and you will too I hope.

[sardine]

Hello Navillus,

I had open brain surgery a few years ago to clip an unruptured aneurysm, it was not fusiform though it was on the middle cerebral artery where it branches out onto 2. I can check out exactly the position if that would help.

Like you i was scared, i made my will, sorted out all my paperwork in case the worse happened but the worse didnt happen and i am here today. It was hell but i made it.

I dont know which hospital you are going into, i went to the NHNN in Queens square in London.

The thing to remember which i kept telling myself is that i felt lucky that it had been found and it could be fixed before it ruptured. With an op, the chances are good, with a rupture not so. It is normal to be terrified, it is a shock to be told you need open brain surgery. Have you met the surgeon?

Keep strong! Try to be positive! I am not too sure what i can say to make you feel better, no point in denying that it is a big thing because it is. if you want/ need to chat, feel free to reach out.

All the best. You'll be ok.

[Navillus in reply to sardine]

Hi thanks for responding. I have calmed down since my first post and trying to be a little more positive and has helped talking to people on here. Can I ask if yours had a neck? I am extremely grateful to have found it. Surgeon has said if it bursts unlikely to make it to hospital so wishing time away at the minute. At kings and amazing team. He's a specialist one of the only surgeons who has done neural transplants so have faith in his ability. If he can't no one can. However he has expressed concern mine is on joint two main arteries and some will be left behind as unable to clip in normal manner. Said if he thinks I will die he won't do. Mine is fusiform doesn't have neck and smack in middle. Can't block it as will affect flow to brain, How long did you take to recover. I'm putting pressure on myself as really need to recover in 3 month window as doing a degree but I don't know if that is an unrealistic expectation. I won't know I guess until doing it and until it can be accessed how much damage, although as you say hopefully less if controlled. I have been warned may get epilepsy following it or left hand side paralysis. Relieved not left hemisphere as language and can be more complex, hopefully won't effect speech. Any tips for recovery or things to consider prior to operation gratefully received - although just waiting game to find out outcome

[sardine in reply to Navillus]

First of all apologies as i didnt read all the thread before replying. I subsequently realised that you had given more information. Glad to hear you seem to have a good surgeon and you have faith in him, that's important. To answer your question mine had a broad neck which is why it was not considered suitable for coiling and it was about 1cm. It was on the MCA on the right side. I went back to work after 5 months. I don't want to sound negative but i think that a 3 month window for recovery might be a bit tight. We are all different and our bodies react in different ways. I was sort of ok ish after 3 months but i would not have been able to study and take exams, is what I mean. It took me about 4 weeks before i felt confident enough to walk on my own outdoors. Try not to put too much pressure on yourself. It may sound silly but before the op I went to the dentist. I was glad I did as I could not open my mouth fully for months afterwards so would have been unable to have any dental treatment if needed. Can I ask how you found out about the aneurysm? What made you go for an MRI or scan?

Do not hesitate to ask whatever you want. I did not know about this website at the time. I did not get any psychological support at all. Ask if you will receive any. I believe that not receiving any did hinder my recovery.

[sardine in reply to Navillus]

Me again. Sorry but have just seen the post about support so ignore my question.

[Navillus in reply to sardine]

No don't apologise am very grateful for everybodies feedback. I did think 3 months pushing it. I have previously had surgery on my spinal cord from an accident in 2014. Been recovering and got discharged about 1 month ago - my only niggle was getting headaches regularly and didn't know if related to interfering with spinal fluid in that op. They said no but would do MRI just in case. Saw black dot in MRI and did CT Angiogram and found it. I realise I'm very lucky to have found it and headaches may be something unrelated. I've arranged to speak with my Year head about delays or deferring should I need to. Want to know options whilst well enough to contemplate them and not when I'm poorly straight after surgery. It really does effect you psychologically and my family feel I'm being negative but can't stand the thought of leaving them without making arrangement or thought it through. Although I know it's just their way of coping coz they're scared too. It took me a good 6 months to recover last time so couldn't see 3 months as being option either.

[Alibongo60]

Hi navillus, I was found to have a aneurysm on the basilar artery in 2012, I underwent extensive tests to see if it could be reached and then had stents and coils fitted, was told if it ruptured would be catastrophic as in the area that deals with swallowing and breathing. At the time felt surgery was better than living with a time bomb, even though risks were high. Last year found Annie had grown, and was due to have angiogram to see if could be recoiled unfortunately my Annie burst on 15 th jan, I thought my end had come. Thanks to the amazing surgeons at Salford I survived a sah and have no obvious disabilities, so does go to prove they are amazing people but can get it wrong,stay positive, and good luck for the future.

[Navillus]

Pleased to say had my craniotomy on Monday 17th and all went very well - glad to be on other side and now know what I am dealing with. Just wanted to say thank you to this forum for all your suppor

[Port123]

Hi Navillus,

I am in an incredibly similar situation pre treatment. Just wondering if you still get these message. Thanks