Im Petrified for upcoming surgery

[scaredsilly]

Hi, I am a 58 yr. old woman that went to my dr. for ocular migraines as they were becoming more frequent..After an MRI, then a CTA were performed, I was astonished to get the news I have a brain Anuerysm...It has been a scary nightmare since..After seeing 3 surgeons I am now meeting with the one that is to perform my clipping surgery...They thought it could be done by coiling but I was immediately put off by that due to my cousins struggle with hers..i also did my own research and realized that clipping just seemed to be a better, more final surgery w/ far less after care..I know its a far more invasive surgery but I know in my heart I will NEVER go thru with a 2nd coiling as is many times needed...I have had about 8 surgeries, 3 of which were very major...but I am older now and I am absolutely petrified about going thru this surgery... I HATE needles and have extreme IV phobia...I feel the very strong need to know exactly what happens when you come out of a brain aneurysm clipping surgery...I know I will be taken to ICU but what then ? Will I be aware of my surroundings ? Will I be in a lot of pain ? Will they allow my support person to come in and comfort me right away ? Will I be able to communicate ? I have a million questions that im not getting answers to from drs...I just need to mentally prepare and know what to expect..I would SOOOO appreciate hearing others stories of their FIRST moments AND days after surgery for unruptured aneurysm surgeries..Thank you so much for any input...do they give you anything to relax you before taking you in for the surgery ? I fear I will run out the door in the hospital gown if not..

[tillymint16]

Hello there🤗😌

My heart went out to you when I read your post.

I too am a 58 year old woman and have just had my aneurysm made safe. I was so completely terrified that put it off for 4 years... just had yearly MRI’s and trekked the length of England and Scotland (yes really!) trying to find answers and some reassurance that I would me ‘safe’.

Like you I’m terrified of needles and need diazepam for a blood test. Not just fear I faint with fear. I know you’ll understand how incredible those emotions can be!!!

Anyway my aneurysm was not in a good place and was the magic op size of nearly 7mm( I have 4) but my vascular surgeon who I finally felt I could trust recommended I get it fixed by coiling. You will have had a risk ratio done I guess and that will show you risk of doing nothing. Risk of coiling and risk of clipping.

This post could be very long indeed but I went for coiling at the end of May this year as they felt this minimal procedure would occlude it and I’d be fixed. Sometimes it does depend on where they are , how big etc.

I completely dreaded the whole thing because of my intense fear and trembled for 5 hours on admission vowing to run at the 1st opportunity but knew that after all the years of dread I had to go ahead with it and not seal my own fate like my dear Mum who had a fatal rupture at my age..

I asked for a sedative for my blood tests and even the anesthetist was having second thoughts when she saw the state I was in but agreed that I should be sedated as much as I needed to be. I had diazepam to get me to theatre. Gas to put me under before they went to the IV.! The whole thing was nothing like assumed and I truly felt in safe hands they were nothing but brilliant and so accommodating.

I woke up what seemed like minutes later no pain no blurred vision and felt like I had got my life back and just couldn’t believe I was fixed.

I could go on but this post has been already too long!!!!! To finish I think some people have an issue with coiling when they’ve already had a rupture as it’s been a repair. Like you I did enormous amount of reasearch 4 years worth.

If you want to get in touch by phone there is a hide bit on this site where it’s easier to communication give phone numbers etc.

Please get in touch if you want to ‘rant’ to someone who’s been there as this condition can be so isolating😳

Regards Andrea

[cat3]

Ask for a pre-med (usually Diazepam) to calm you before the op. You won't know anything of what's going on immediately after the painless anaesthetic is administered (I've never managed to count past no 2 when asked to count to 5) and after the procedure you'll be too drowsy to care who's there with you.

There's a good chance you'll have headaches for a while afterwards, but they can be managed with painkillers which are often administered intravenously before waking. And the nursing staff in neuro wards are highly trained and extremely attentive.

I had a Subarachnoid haemorrhage coiled 6.5 years ago and was totally unaware of the procedure...……...similarly with more invasive surgeries over the years I experienced nothing fearful, once from the initial apprehension was over with.

These procedures are carried out routinely by highly skilled, experienced surgeons who's only concern is your wellbeing. I'm betting you'll be in touch afterwards telling the next person how there's nothing to fear ! ……….wishing you all the best m'dear, Cat x

[scaredsilly in reply to cat3]

Thank you Soooo much for sharing your experience with me-😊😊-i feel alot better !! In fact, if u were here, I would hug you !! So glad everything is well with your outcome- praying for good experience like you ..☺🤗🤗😊😁😁☺☺😊😊

[scaredsilly in reply to cat3]

Thank you so much for your reply--it was hard for me to express my fears with IVs so you made me feel much better about that...we sound much alike in our yearning for knowledge of what's to happen to us as well..im so glad you are ok now- hope I am able to report the same good outcome soon..Thank you again !!😊😊😁😁☺☺🙂🤗🤗😊😁

[cat3 in reply to scaredsilly]

I'm living with after-effects from the bleed (fatigue, mobility, balance issues etc.) but all things considered I've been very lucky, and I know it. But these are all leftover issues caused by the bleed itself …………...whereas in your case any rupture is being prevented which will minimise symptoms significantly.

But as I'm sure you've heard, after any procedure within the brain, this delicate organ will show some disapproval, so expect some serious fatigue for a while afterwards. In the meantime keep reminding yourself that you're one of the lucky ones.

The first words I heard once I was compos mentis were 'You're a very lucky lady' and my response was 'You ARE joking aren't you ?' I see now that bad things happen to good people, but it's whether those things are fixable which deems us lucky or not. 🍀

Stay in touch m'dear…….. Cat x 😐🙂

[scaredsilly in reply to cat3]

Thank you cat3 !! Your words are extremely helpful and welcome..I am on diazepam daily for SDDD thru out entire spine as well as inflammatory osteoarthritis...they have had me on hydro as well, stating because I'm inoperable, this is the safest long term med. -- my pain is that which keeps me bed bound w/out some help...i fear after surgery they won't realize how much pain I'm in due to tolerance of pain meds.. my fear of IV's is due to my fibro literally attacking any needles injected- the pain of the initial poke remains active the entire time IV's are in..its horrid- but trying to stay brave..🤤😭

[cat3 in reply to scaredsilly]

I can't address you as scaredsilly so I'm taking out the middle bit & abbreviating you to 'Red' !

That IV issue sounds really horrible. I'm fortunate in having no issue with needles apart from giving blood samples ; that usually involves 2 people as something about my veins invariably produces a vacuum problem so that the needle sticks leaving me black & blue ! But once a catheter is in place I don't feel it.

Keep up the brave face m'love by concentrating on the end result. 😳 xx

[rockyandfrank]

Hi

I am also a 58 year old wwoman - I have not been well for quite a while - on Good Friday I was informed that I had a 18mm aneurysm that would kill me if \I didn't have treatment. The only option was coiling - it was resting on the optic nerve and facial nerves - this is what caused the double vision, also contributing to the facial palsy.

Because I had been so poorly for so long I had attended a healing group, a mindfulness course and meditation classes which really helped. I am terrified of hospitals but went into the procedure in a very positive frame of mind - wanting to live and cope with any/all outcomes. My support person was with me right up to the time to go and then permitted in to recovery - I was aware that they where there - however my memories are quite hazy as a lot of pain relief is administered. I was able to communicate. The first days I was closely monitored - helped to eat and wash. Then moved onto another ward and encouraged to start caring for myself again - the nurses were so kind. I was in hospital for 2 weeks - quite a long time. However I have had a good recovery.

I hope this helps.

Best wishes

[scaredsilly in reply to rockyandfrank]

Thank You SO much...this really did help...I must admit I have been like a tornado in a barn this past week... my last appt. w/ surgeon before surgery is this Tuesday and I have been crying every day...I have a good support team but my sis-in-law that I cherish is the main one I chose to be with me before and as soon as possible after surgery... I would feel SO much better if I knew they would let her slip in to recovery as that has been horrid in past surgeries for me...I don't know what to expect w/ this new surgeon - Im the type that likes a caring, compassionate Dr. that has a good bedside manner...this has taken months to get going as they were 1st going to do coiling but we switched to clipping even tho I know its much more invasive...My family has done much research and all admit to agreeing with this decision...My cousin had coiling and they were not too successful so shes had struggles...May I ask why they chose coiling for you ? That seems a large Annie for that procedure but I am sincerely happy you had a good outcome..Thank you for sharing your story with me..

[rockyandfrank in reply to scaredsilly]

Hello

Thank you fro replying - I have had a real struggle with all of this - I was diagnosed on Good Friday and haad the procedure the following Tues - april 4 2018. So no time to prepare - only to make a will and put my affairs in order. I was advised that because of the position and size coiling was the only option. They also found another in the cerebella - 3 times 5 - this is booked for 22 October - so another hospital stay in the offing. I have been advised that this should be a lot simpler and quicker to do - so the hospital stay will be less. I had absolute faith and confidence in my surgeon - 110%

[scaredsilly in reply to rockyandfrank]

Oh my !!! You are very brave...Im going thru this once- Period !! I can't even imagine thinking about a 2nd time around...but then I must admit I HATE hospitals, Drs. appts..needles..IV's...I am just SO anti hospital for anything...so much so that after having my 1st baby in one, I opted to have homebirth for my sons...little did I know they would both be 9 lbs. 12 oz...lol...but I did it and with not 1 needle of any kind !!! Any way- good luck to u on the 22nd...when I see the surgeon Tuesday, I'm gonna tell him if were doing this, it's gonna have to be SOON !!! I can't handle this hanging over me every waking moment..its really starting to get to me emotionally..its now or never...

[Lyndaryan]

Hi,

I had mine clipped just over a year ago and I had a big aneurysm with a smaller one attached which was pretty serious stuff. I was the same as you about the always having to go back for more with the coils and my family totally disagreed with my decision but I knew I didn't want to spend the rest of my life around hospitals. I did read where some patients have the coils and keep going back for more and more until there is no alternative other than to clip. I just didn't like the thought of the tiredness involved either. I was 64 when I had mine done so your a spring chicken!!

I woke up in the Intensive Care Unit and I was discharged after only two days. I had my clips out on the morning of my discharge and that was it, I was out of the door. I had pain relief to take home but I certainly wasn't suffering anything other than discomfort. I have made a flight this year. I was told just 8 weeks after the surgery I could fly but I just didn't feel well enough to enjoy a holiday at the time. I have recovered in my own time and I can't say I have had any problems other than a little bit of short term memory loss on my arrival at home. This has improved and I'm happy to say I've done really well. I applied for my driving licence back and received that after just 5 Months so I know I made the right decision for me. To be fair I did have untold amounts of faith in the surgeon. He was quiet, efficient and CARING. I felt really lucky to have him carry out my operation as I live in North Yorkshire and had my operation in Hull and I was the last patient he operated on before he went to London to specialise in the same surgery but on children. Like you the waiting is really hard and the situation is never far from your thoughts. Once it's over the relief is massive not just for yourself but your loved ones as well. Just knowing the flipping thing has GONE is worth a fortune as you lose all that worry and there is no trailing backward and forwards for checks.

Lynda

[rockyandfrank in reply to Lyndaryan]

Hello

Out of interest - wh0 was your surgeon? - I also had my surgery in hull

[Lyndaryan in reply to rockyandfrank]

Hi,

My surgeon was a young Portugese Consultant called Mr Castanho. He's working at one of the big London Hospitals now. I think he was a big loss to Hull but I suppose it was a big promotion for him. A more modest quiet spoken consultant you couldn't wish to meet. Your in good hands in Hull though because as you say if you've done your research there's nowhere better in all Yorkshire. There are some seriously clever brain consultants working there. I live nearer to Selby so there were options of Leeds & Sheffield but you can believe me - If they get anything really difficult they send them to Hull. I've been in the waiting room in Hull & patients have told me themselves. I had one check up about 3 weeks after my surgery & I've needed no further medical visits at all. Like I say I've been abroad to Valencia for a holiday & I intend going back for another one in a few weeks. I know your anxious obviously about what lies ahead but I slept most of the time after the surgery & I certainly wasn't in a load of pain!! The worst I could possibly say was - At worst a little discomfort!! Nothing more than that. My family were allowed into the Intensive care unit at evening visiting time on the same day as my surgery & I was on a normal ward the day after & the next day I came home. I think it's the feeling & relief that OVER means OVER!! At my age there was no way I was prepared to be going back every 3 months to be checking coils. At my age life's too short & I just wanted RID ha ha. I don't have one single regret about the choice I made - Not one.

Please don't be stressing yourself - Honestly we are all frightened of the unknown but it truly isn't like what you are thinking.

Lynda

[scaredsilly in reply to Lyndaryan]

Thank you sooo much for your response !! You are so fortunate to have had such a good surgeon and I am truly happy for your wonderful results...With me, my family is just the opposite - they have done a lot of research and came to the same conclusion you and I did...yes, more invasive, but once its done its done !! I don't mean to be snoopy but am curious as to if they shaved your hair and what type of scar you were left with...In all honesty, with me, I am hoping they will just shave my head...not BALD BALD, but maybe like a 2 razor...I just think it will be sooo much easier for them AND for me once I get home...I have a lot of spine issues on top of over active oil glands on my scalp..It is extremely hard to wash my hair and I must use conditioner to do it..Its ridiculous but no dr. or dermatologist has been able to help..I just fear infection in the wound...Hair grows back and I have bought many cute headbands, wraps and hats...another thing please- How terrified were you the day of surgery ? Will they give me something to calm me down upon arrival ? I know I sound like a baby but I do TRULY fear hospitals, needles and IV's....My appt. is coming up on Tuesday ...I just pray he has a kind heart..Thats all I ask...that he understands how petrified I really am..Ii do hope he does surgery soon as my emotional strength is dwindling by the day and my faily is terribly worried...Did they make you do any pre-surgery tests ? Thanks for any further info you can supply...God Bless !!

[Lyndaryan]

Hi,

If you send me your email I will happily send you photos of the actual operation day & the neat tidy job my surgeon made. I did think about my hair a LOT prior to the surgery. I just have one daughter & one grandson but lucky for me she's a hairdresser & we discussed this in great detail before my surgery. I had my hair cut quite short prior to the surgery & after I would say 4 weeks you wouldn't even have known I had had anything done at all. I must admit I needed her help with the first proper shampoo as the glue was a bit of a nuisance just getting rid of it in a none abrasive way. I will ask her for you what she used to do the first shampoo so as not to create any soreness. It was only that first shampoo that gave me any issues at all & after that none at all. I have seen some really barbaric outcomes with the hair issue luckily NONE in Hull. My surgeon parted my hair where the incision site was & plastered both sides down with some gooey stuff (This was what took some getting rid of) then it was just one clean cut & I would say no more than a quarter inch removed. Even with short hair from the first shampoo it could be really well hidden. I was really sensitive about my hair like most women would be but I know my daughter who's 43 cried when she saw how caring he'd been & the care he took. I did mention this to my surgeon BEFORE the surgery - Please don't leave me like Uncle Fester if you don't have to!! ha ha

Lynda

[scaredsilly in reply to Lyndaryan]

Wow- sounds like it went all pretty well for you...thank u for sharing that with me...my email is petersonnancy8@gmail..i would love to see your success pics...How awesome your daughter is a hairdresser and could help you with this...