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Hi all,

Id super appreciate if anyone can give me lots of info....I cant seem to find a lot on here, Im unable to stay logged on for ages as I just get too tired...I am due to be clipped any time soon, Im simply awaiting call. I had SAH coiled in Feb 2012, seems now the coil has moved leaving a gap etc...

I am 35 and a mum to a 7 year old, very mature however!!! Id like to know all the info....how you felt straight after, scar, pain, how managed...what could or couldnt do.....I know im unable to drive for 6 months etc.....strangely had a driving assessment with DVLA booked for Jan, which ill have to maybe cancel now.....

Id just like to know all as they dont tell you....I know risk of fits...anyone had, or not had.....I am quite honestly terrified, but FULLY understand this procedure needs to be done...Im strong...kind of!!

Any handy hints...anything honest....I just dont feel they tell you all etc......My Neuro told me that he doesnt have to shave hair at all???? Eh???? Really??? Is he superfabbo??

Thank you all, please understand although im 35 I actually feel 15

:crazy:

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Hi there Doodles, I was clipped so hopefully I can help.

I had about 1 inch shaved back off my hairline, I guess it depends where your anni is as to how much is shaved. I remember feeling like I'd been trampled after surgery & had oramorph but that is the only time I had it for pain relief. Most importantly for me the pain from my anni had gone immediately. My scar was from mid forehead to my right ear but be prepared for the staples, I was stunned to see them when they eventually let me look in a mirror, they look quite big & industrial.

I was bed bound for quite a while (in HDU for a week or so, due to vasospasms) but once i was allowed out of bed even the smallest task like showering was exhausting. The best advice I can give you to aid recovery is just to rest as much as you need & can.

As for driving it really is up to the DVLA, I was allowed to drive after 4 months but I didn't have a haemorrhage (sp?). Its really down to your neuro cons & GP to decide if you are up to driving (I had to get my neuro cons & eye cons to write to my GP so she could write to the DVLA & give me the all clear)

If there's anything you want to know just ask away. Fingers crossed for an easy recovery for you xxx

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Hi all,

Id super appreciate if anyone can give me lots of info....I cant seem to find a lot on here, Im unable to stay logged on for ages as I just get too tired...I am due to be clipped any time soon, Im simply awaiting call. I had SAH coiled in Feb 2012, seems now the coil has moved leaving a gap etc...

I am 35 and a mum to a 7 year old, very mature however!!! Id like to know all the info....how you felt straight after, scar, pain, how managed...what could or couldnt do.....I know im unable to drive for 6 months etc.....strangely had a driving assessment with DVLA booked for Jan, which ill have to maybe cancel now.....

Id just like to know all as they dont tell you....I know risk of fits...anyone had, or not had.....I am quite honestly terrified, but FULLY understand this procedure needs to be done...Im strong...kind of!!

Any handy hints...anything honest....I just dont feel they tell you all etc......My Neuro told me that he doesnt have to shave hair at all???? Eh???? Really??? Is he superfabbo??

Thank you all, please understand although im 35 I actually feel 15

:crazy:

Hi Doodles,

I, too, was clipped so hopefully I can be of help.

PM me if you want any details.

The size and location of the scar depends on where your anni is/was. Mine apparently is quite discrete but I notice it all the time and refer to it as my 'war wound' - I went to battle with my brain and won!

I was 36 at the time of my emergency clipping ... terrifying but I knew I needed it.

Anytime you need a chat, let me know.

Best wishes for Christmas and the surgery,

Leo x

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Hi Doodles,

I have only just seen your post. It's worth holding onto the thought that the SAH itself can cause fits/epilepsy to develop, as can any injury to the brain or surgery involving the brain. It may not happen even after the clipping surgery takes place.

Also, recovery from surgery without the initial bleed complicating things does seem to be a lot easier. I do understand that clipping is a big operation and, as you say, a very scary one but this time around you are having surgery from a far better starting place than your first coiling op.

I hope my two points will help you to find some positive thoughts in what you are facing and would like to wish you well and good luck when the time comes. Stay positive, you are going to be fine. Call in all the favours you can to make life easier for you afterwards while you recover. And enjoy a fabulous Christmas with your little one first!

Michelle x

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Thank you all for your kind replies, please inbox me Leo with your 'story', i would appreciate any...any information, personal stuff the works, id rather have all the info, I remain scared yes....but strong too!! Have to be!!! Im glad it will happen....I am awaiting a date for January, I WILL NOT LOOSE HAIR!! my surgoen is truly truly experienced and feels he does not need to cut hair, he thinks im loopy...im sure of this only lol.....i have now 21 days to surrender my drivers licence as I had to cancel drivers assessment for next week!!! Gonna sell the ****** car, dont want it on my drive!!!!

I have bought a V Pillow as per info on here and then had to buy 2 more for my partner and daughter....cant have owt for myself lol....

thankfull each day

xx

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Hi Doodles,

I had emergency clipping following burst anni in August 2010.

Mine is two inches behind my left eye.

I was cut from middle of forehead to my ear going a good couple of inches back. There's a pic on my profile page if you'd like to look. I have kept my staples in a little pot!

I have very hazy patchy memory in the few days up to my SAH and for a week that followed. Family and friends filled in a few gaps and this year, when I felt ready, I asked my neuro nurse specialist for more information.

I remember waking up from surgery with my head feeling very tight, lifting my hand which felt like a tonne weight I could feel all the head bandaging. I was kept flat in HDU for about a week then transferred to a neuro ward. I never saw myself in a mirror when I had my staples in. Rather glad really. I was dosed up with painkillers and out if it pretty much for the first week. Had painkillers 2nd week on ward but they were hit and miss when given, very distressing and often screaming in pain. They were often late with pain relief due to being short staffed.

I remember feeling totally exhausted even walking, with help of a nurse, to the loo. I needed help with eating and washing. I couldn't wash my own hair. Recovery was long and slow, it took months to get to be able to walk to local park but when I made it there I sat and sobbed at my achievement.

My advice to to be kind to yourself and patient. After the op I did feel all kinds of clicking, things going back into place, very weird sensations to feel. The numbness faded with time. I do still get itchy, tickly feeling there now sometimes. And an ache in that area when I've done too much or am tired, like a lil kick from my brain to remind me it has been injured! But it's ok, I'm used to it now.

Take all the help you are offered.

Also I took photos of my hair growing through recovery, probably sounds silly but it gave me a visual. Unfortunately I no longer have that phone and didn't manage to save all the photos, just a few.

Also, keep a diary, I really regret not doing that.

Keep talking to your children too, my Miss C was 10 when my brain got re- arranged and its been important to give her truth and honesty.

Wishing you the very best of luck for your operation.

Pm me any time if I can be of help.

Take care,

SarahLou Xx

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I think sometimes the unknown is worse that the actual thing you think afterwards Oh! I wished I knew it would be like that, I went through all the pre thoughts organizing and stuff with the angio & found that I was over reacting he!he! laugh at myself now but not at the time...

I cant comment on the hair thing cos I now wear my hair short not long its easier....

Yes defo talk about whats happening I am so stunned by the amount of people that say I dont speak about it to loved ones I dont want to hurt/worry/upset them - I think aw that's so nice but HEY your the ill one not them.... sorry thats just a little hang up I think I have developed...

yes give yourself time I wish you all the best and hope to hear all about it once your mobile to get on the PC...

big hugs

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Hi Doodles

Not sure if this is too late. In my wifes case she had to have two crainiotomy operations. After her S/H she had coiling to stablise her while they worked out how to deal with her twelve aneurysms. Her first clipping was in a hurry, it was a bit horrific to look at, at first, but she survived with no serious complications. The second operation was scheduled to follow the first as soon as she was up for it. Once my wife got a little recovered she decided she needed time at home to gather her self before going ahead with the next op. The surgeons were unhappy but they agreed as long as she returned no later than six weeks, this she agreed to and came home. If she was worried she never showed it. In fact, come the day she returned, she all but skipped into the hospital. The wound this time was a piece of art. In both cases my wifes hair soon grew to cover the scars which unless she lifts her hair are invisible. I understand not everyone is as fortunate as my wife and she has days when she just wants to sleep it through but hope this helps to ease your worries.

All our best wishes for yourself and your family.

dave xx

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Hi Dave, I remember reading about your wife a while back and being horrified at the thought of so many. She has had way more than her share with anneurysms. Have all 12 now been successfully treated?

It's good to hear she is doing well now.

Michelle x

Hi Michelle

Unfortunately at her last mri scan the radiologist let slip what I had suspected and tried to keep from her. There was one anneurysm, whether no12 or 13 we didn`t ask, that they hadn`t been able to get at while they had her head open. It was too deep and to get to it would have damaged the facial nerves. Also its size and shape prevented coiling. She now calls it her timebomb and seems to accept that it`s there. She appears to cope well with the knowledge and we try to keep the everyday pressures from building up too much. She is still keeping well, although she still suffers from the tiredness like most, thankfully she still appears her happy self.

Dave xx

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The courage that your wife (and yourself) have shown is amazing. I don't know of anyone else who has gone through so much. The 'one that got away' will hopefully be the one which never causes any problems. I was told that there are anneurysms which never cause any trouble & never burst, they are only ever found after death by other causes.

To recover from a coiling & two craniotomies is more than any of us could imagine ever having to do. To remain happy after them is a huge blessing and a sign of your wife's positive, fighting spirit.

Best wishes to you both xx

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Hi Doodles,

I was coiled so I have no advice on that score. However,, Sarah Lou''s advice for you to keep a diary is excellent and if you are unable to do it yourself at first get a relative to do it for you. Sometimes you will think you are not making progress, but really you are and looking at the diary will make you very aware of it and it will boost you so much. Good luck with your op I wish you the very best.

David,

I can't imagine what you have gone/and are going through but keep going, I think you and your other half are amazing. Keep believing, the support you are obviously giving each other is a strength in itself - don't underestimate it. Good luck.

Macca

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HI ALL,

Sorry for the delay in my reply...christmas, work, many days with pain, gosh its a poor start to 2013 for me.

Sarah-Lou - You are very brave, I will pm you, thanks for the offer.

Louise - you do make me smile, thank you for your kind honest words, all very true.... your family must treasure you...lucky family.

Dave - You seem to be very brave, you wife is truly blessed, she seems to have had an awful time, possibly the greatest number of anuerysms ive heard of! Im sure she is like me in the sense that...this is happening...to me....I have to deal with it the best I can....deep down she feels it like I do.....she is in my thoughts and prayers now as are all of these beautiful ladies and gents on these pages.

I have called LGI for any insight as to when op will be, im told should be end of Jan, so its just a waiting game now.

My employer will only pay SSP so everything will go heads up...tell you all something....roll on 2014....

Thank you all for reading and taking time to reply, im truly grateful.

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BIG HUGS! I had emergency clipping so it's always going to be slightly different to what you experience, but still basically the same.

I remember seeing the stitches and thinking Well, you might be an amazing brain surgeon but I don't think much of your stitching skills, lol. In hindsight it was probably the Registrar or another junior who closed up but anyway, the head is well perfused and I must say you can't see my scar now (on my forehead) unless I point it out. I had a bit of hair shaved on right temple and down to the ear, but it didn't really look too bad. I have pics on my profile. (see this link here, as for some reason they don't come up under "photos").

The main thing is to drink plenty of water and to get plenty of rest. I don't know how much of my story/recovery is related to the bleed or the surgery, it's hard to tell. I was in hospital for 6 weeks with the last two in my local general hospital, where I needed to concentrate on getting better and managing stairs before they'd let me home. You can read my story on my blog (see below) and clicking on the theme "the brain thang" in the menu on the right hand sad. The fun begins here.

All the best and keep smiling!

Edited by JayKay
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