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Reaching out

Hi all, new to the group and have never done this sort of thing b4. 10 mo ago I had 2 aneurysms clipped, 1 in the circle of willis and 1 right temple. They were found when I went for a CT due to a bloody nose I had for a few weeks (totally unrelated). My Mom passed 2months prior from a stroke, I’d like to think she was looking out for me. From the time they were discovered, the 1 in C of W went from a 7 to a 10 and had started to adhere to another artery so when the Doc tried to separate it it started to bleed took 3 clips and a surgery that was suppose to be 6hrs took 8. Once finished it took me 2 days to wake up and it was causing concern. Needless to say I don’t remember the entire week I was in Hosp. or the 1st wk or 2 at home. Hands down the most scared I’ve ever been and still having issues trying to deal with it. Glad to find this sight because as much as family and friends love you they don’t truely get it, how it feels when you know your going in to have someone remove a piece of your skull and work on your brain and you don’t have a choice cause it’s do or die. I keep waiting for the day I feel like pre surgery me and can shake the anxiety, exhaustion, random emotions, and fear, along with the feeling that I should just suck it up and feel greatful. Soooo, thank you for being out there I think I needed this.

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Well done in getting through a frightening situation. Hopefully , in time, you will get back to your old self again. Maybe with a few changes and hopefully thankful you have made it . You will be having frequent check ups but just take your time in getting well again. Says me who is waiting to go and have coils fitted and a stent put in on an aneurysm which can’t be operated on. Fingers crossed I’ll get through it but I’ve been told it can take a while to recover . 🤗🏴󠁧󠁢󠁳󠁣󠁴󠁿

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Shon48

I think my lesson is to learn patience, and thank you, I appreciate the encouragement. You will do fine, I’m sure you’ll have a lot of people on here sending good thoughts your way.😊 I think if once we make up our mind to do it the waiting is tough. Do you know when your going?

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I should be going in tomorrow but I have tickets to see The Stones on the 9th June so have been given the ok to go if I behave myself. It should be done by the end of June now. I’ve waited 50 years to see them but I will behave , no head banging lol . Everybody thinks I’m mad but hey ho ......... 🤗🏴󠁧󠁢󠁳󠁣󠁴󠁿

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Would def be hard to miss the Stones, but even harder to contain yourself! lol Somethings you just have to do, enjoy yourself. Let us know how it was 😊

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I sure will. If I can fight the fatigue I’ll be good to go . Take care 🤗🏴󠁧󠁢󠁳󠁣󠁴󠁿

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Hi MCKU............and welcome. I hope you'll feel free to talk about your issues and soon become a 'regular'. I'm gleaning that your clipping procedures weren't a result of bleeds so, as bleeding is the damaging factor, maybe you'll achieve a better level of recovery then many here.........I hope so.

I had coiling for a haemorrhage but remember nothing, apart from losing consciousness one night, therefore I didn't suffer the apprehension you describe ! So shock hasn't been an issue for me as it all seemed like a dream, though it's left its mark with after-effects such as balance/memory/fatigue etc. :-o

Hope to see you around ! Cat x

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Good Morning Cat

Hope your doing ok. Ive been awake since 2am as it’s hospital admission day today and the stress suddenly got a bit much yesterday.. so quite restless🙄Having my op tomorrow (Tuesday 29th) done so much homework on everything there’s only having the op left now and have got faith in my surgeon and the hospital.

Really so need to get this out of the way now but the dread is really quite overwhelming this morning.

Will post on here when it’s all over... if I haven’t done a runner by then!!! X

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Good luck x you will be fine xxx

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Thanks Woo777 for your kind regards ... this time tomorrow ahhh

Andrea xx

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Andrea

I had a 'moment' last night and I'm sure i'll have another tonight before the op tomorrow. It's remaining strong whilst talking to my kids that makes the cracks appear in my otherwise very positive mind.

My son asked a good question. .. how will you feel when it's over? I said "good question ". He said after over a year of focussing on the aneurysm and facing mortality what will I focus on? I replied... a house move nearer to your sister and my grandkids (son lives abroad ).

Moving will hopefully fill up my mind leaving little room for thoughts about the past years trauma.

Thus my advice is to find something to keep your mind busy :)

Hope that helps x

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Good Morning Louise

Been awake since before dawn and the anxiety is full on. Been busy but it seems to have all caught up as got to go in the hospital today in prep for I assume 1st thing in the morning!!!!

Are you just going in the day of your op?

It’s a good idea to focus on a plan for ‘afterwards’ we’ve just moved and hopefully will be here sometime now.. but got lots of plans to do house/pet sitting in the UK and abroad.

Will be in touch 👍🏻Hope you manage to have a calming day

Regards

Andrea xx

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I'm going in today too !

Just waiting for call to tell me what time

I've cut off texting with everyone but my children. I don't need good luck wishes as they'll just remind me what's about to occur and my mind now believes I'm going on holiday for a few days lol

You can text me anytime :)

Louise x

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Gotta be in by 4pm I was hoping there wouldn’t be a bed!!!! I hate flying but would even rather be flying off somewhere today.. going to try and adopt your ‘holiday’ idea🏖 yes likewise you can txt me anytime too... must say it helps to know someone feels like this today!!

Regards Andrea xx

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Andrea, thanks for the heads up for your procedure. You won't know anything about it except for slight tenderness in the groin from the tiny incision. I know it's impossible to see any positives, especially when you're quite phobic about medical procedures, but I'm expecting a message from you very soon to say it was really fine and you can't imagine why you were worrying ?

All I can do is send loads of virtual hugs good vibes, though I doubt you'll need anything more than the excellent care of the neuro ward. I really didn't want to leave Salford Royal neuro-ward !

I'll be thinking of you m'love ; send us a message when your compass mentis !! :-/ xx

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Thanks Cat just on my way now!!!

Also for your words of wisdom and being a friend! I will let you know how it all goes... feel like I could do with starting the sedatives now!!!!

Regards and many thanks for support over the weeks/months

Andrea xx

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Hiya Cat

I’m here !!!!!! Hurray! Went down early and didn’t even need ICU soooo relived and you were completely correct they were incredible.. the fear is the worst part. The very worst but big drugs and lots of understanding helped.

Still on drip and catheter but can’t stop smiling and way too excited to sleep zzzz though a bit tired now. Years and years of dread and life on hold.... well bring it ON!!!!

Will Keep in touch with you and can only thank you for being such a lovely person and great help and support .

Be in touch soon 💗💗💗😄👏🏻

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Fan-TASTIC !! I'm so happy for you m'love................

Sorry to be late in responding but have been without my laptop today ; been thinking of you though. I can almost feel your relief through the ether. See you again soon. ;-) :-) :-/ xxxx

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Know you’ll probably be up and about right now so thinking about you today and all the best... I want to scream ‘I’m a patient get me out of here!) but I guess no I’ve got these crazy socks on I’ve gotta see it through though it was touch and go yesterday for sure!!!!!!

Calm thoughts today😌

Andrea xxxxx

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Thanks andrea

I'll message as soon as I can.

Best 8f luck to you too

Louise xx

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Ditto!! Xx

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All done no ICU AMAZING !! Hope your all good 👍🏻👍🏻👍🏻👍🏻👍🏻👍🏻Xxxx

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Mine got postponed at the last minute as there was no icu bed available. It's now scheduled for tomorrow morning.

So pleased to hear you'e ok.

I'll message you tomorrow when it'

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Oh no I’m so sorry but can honestly say the fear is soooooo much worse!!! I was so scared I couldn’t talk to anaesthetist and shook like leaf the fear is quite cripling gotta get some therapy!!!! They are sooo amazing and I’m truly elated after dread for 4 years.

Best of luck and let me know how you go👏🏻👏🏻👏🏻Xxx

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I'm the opposite side of the scale... so chI'll ed I'm beginning to think there's something wrong with me lol.

I think I've learnt over the years that worry won't change anything. So here doing crossword puzzles. Never done them before but think i'll continue when I get home. Good for the brain !

Chat tomorrow xx

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Haha me too if your that chilled you’ll be totally fine👍🏻👍🏻👍🏻👏🏻Xx let me know how it goes👍🏻👍🏻

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Hi

Well some mixed news.

The procedure didn't go ahead as the risk to my eyesight was too big.

Advice of surgeons is being sought

I'm ok. Still chilled.

Hope you'e up out and running as normal soon

Louise xx

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Hi Andrea,

Were you scheduled for an angio to fix? My big one was near my optical nerve and they said they could try to clip it through angio but were concerned about the nerve and the small one was right temple, that one they said they couldn’t do w/ angio and would have to do craniotomy, my choice was to have them try to do this way for the big one and keep an eye on the other but that would have made me crazy......er, so I opted to have the craniotomy and have both clipped at the same time. Even though it was scarier to me I thought it would be eisner in the long run and my optic nerve wouldn’t be affected. I don’t know if this is an option for you?

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Hi, thank you that's helpful. It was coiling embolisation I was having.

New problem is I think I have dvt.. terrible pain in leg and they'e given me a shot of anti coagu lan ts

Louise x

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I’m so sorry for your pain, hopefully they’ll have it all figured out and under control soon. 😔

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It's not dvt. It's muscle cramp from the general anaesthetic. I'm sure it will be better soon :)

Louise

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Good Morning Louise

How are things for you today. Have they proceeded with your op.. and what’s happened to the prob with your leg?

I’m so knackered after my op... very relieved but really so tired.. not sure if it’s the effects from anaesthetic but anyway taking peoples advice about doing one little extra thing a day and taking it slowly👍🏻Glad to be here though !! Xx

Andrea

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Hi

Pleased to hear you're ok. Mine got postponed at last minute. It's now scheduled for tomorrow morning i'll let you know how I am as soon as.

Louise xx

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So happy to hear!! I was thinking about you, the wait IS the worse. So so glad, you sound relieved 😅

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Good luck , I know how you feel . I’ll need to be dragged in with a diazepam and immodium for help. I hope all goes well for you . Hey, maybe you have my date as I cancelled the 29th. All the best .🤗🤞🏼🏴󠁧󠁢󠁳󠁣󠁴󠁿

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Hi Shon48

Maybe I have that appointment.. strange are you going to ha e your treatment at the Walton Centre in Liverpool?

I’m truly terrified this morning.. gotta be in by 4pm!! At my pre op they got the measure of my terror so got a plan for lots of sedatives!!! Needed 3 diazepam just for a blood test and even then fainted!!!!

Have you got another date or still waiting?

Thanks for your good wishes

Andrea xx

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No , I’m having mine done in Glasgow. Oh your nerves are worse than mine so I hope they do give you medication to calm you down. It’s not funny being so scared . I’m usually fine once I get there but oh boy the run up is awful , never off the toilet. I pray that all goes well and you can tell us all after you have recovered that it was a breeze 🤞🏼🤞🏼🤞🏼🙏🙏🙏🤗🏴󠁧󠁢󠁳󠁣󠁴󠁿

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Hi tillymint16,

I had the same high anxiety the day b4 and the day of! I was given something to take and was even able to take the morning of the surgery to get me there. My rational self said I needed to do this but my nerves didn’t agee. Once there, they were so busy getting me hooked up and ready that I was out of it b4 I had a chance to run 🙄My good thoughts are with you, be strong.

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Thanks so much for your post. At the hospital now and fighting the urge to take off... just trembled for 3 hours!!!

Soon as they mentioned a blood test which I hadn’t bargained for!!! Having some sedative for even that tonight so they can do it... just terrified!!!!!

Know it’l be all process but sooo terrified and paranoid ahhhh!!!

I’m trying to be brave but a long way off that!!! I’m afraid

Xx

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Absolutely natural to be afraid, anytime we don’t have control, handing it over to others is so unsettling, take what they can give you, there’s nothing wrong with needing help to get you through. I didn’t hesitated to take it, and you are brave, your there!

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Thanks so much yes I’ve had the drugs and managed to do my blood test after 5 hours of trembling feel a bit calmer.., spaced and got a plan of action for tomorrow.. do feel a bit more in control at last... thanks for you wise words they’ve helped me lots xxx

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Ive been thinking about you all day and I’m praying all is well x

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Hi Shon48

I’m here!!!!!!!!! Can’t believe it I really can’t didnt even have to go to ICU!!! No pain.. no headache.. dread all gone of the last 30 of seeing my Mum pass with a fatal one .. can’t put it into words and can’t stop smiling😄😄😄😄the fear is crippling the fact is straightforward and the nurses just incredible!!!!

Thanks for your support and best of luck feel free to message me anytime coz I’ll be on this sight helping others👍🏻👍🏻👍🏻Xxx

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Oh that’s just brilliant , well done you. Did you have the coils and a stent put in ? 👏👏👏

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Could.... not sure about stent will find out tomorrow.. just drip and catheter.. can tell you the fear is a million more times worse than the fact ... such great meds lots of understanding and taking control is the way forward👏🏻👏🏻👏🏻

Xx

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That is making me feel a whole lot better. Imagine not not having to be in HDU , that’s just amazing . I’m still scared though but I feel a bit better. I’ve been thinking stupid things like should I wear a nightie or jammies because of the catheter so now you can tell me. So pleased for you x

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You have a gown but loose jammies is the best I think... just gonna have a little rest will txt tomoz with an update. We’ll get an action plan for those big meds hahahaha really it’s a simple procedure... txt tomoz and will stay in touch👍🏻👏🏻😌💕xx

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Thank you so much . Enjoy your rest and again well done 👏👏

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How are you today, hope you are feeling as happy as yesterday . Shona xxx

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Hiya Shon48

Bit rough today... obviously came down from my high!!! But also tried to get out of bed for a wash and my incision ‘popped’ and started to swell ahhhh just fainted and had to have ultra scan

Vascular surgeon not bothered though and is happy with coiling though couldn’t stent ‘may not need it’ as blood thinners not worked for me so just MRI in 6 months and may stent. They did thevdangerous one so that’s good enough for me... my bloody groin more of a prob... head no problem and wouldn’t even know!!!

I’m realising that everyone single person in here is different and no-one the same... not slept which doesn’t help but may tonight😳xxzz

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Oh dear not so good. I take it you only have the catheter in for the one day. It’s one of those things and I think you have to take each day as it comes and take things slow and steady. I hope you feel better tomorrow . I thought the groin would have had a couple of stitches .

Have a good night , Shona xx

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Good Morning

All good today.. the don’t stitch the groin it was all inside. Just got to take good care and have an ultrasound in a couple of week to see it’s sealed. Still needed 3 diazepam for unexpected blood test but works for me... know Im a wimp but if it gets me there it’s worth it... drinking loads now to send my kidney function up👍🏻👍🏻👍🏻Even after all this still not 1 pain in head and no pain meds👏🏻👏🏻👏🏻Will get the other sorted if it needs to be...just have to see on follow up MRI’s.. still better to get it done before a rupture ... million % xxx have a good day 💗xxx

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That sounds more positive today. You are certainly not a wimp and you have proved that by having this procedure done . Well done 👏👏👏. How long do you have to stay in bed with the catheter? It’s quite a journey and I’ll be glad when I’ve reached the end of it. I’ll need diazepam too and immodium . Amazing you have no headache. Good stuff . Have they told you how long you will be in hospital? Thoughts are with you , Shona xx

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Thanks Shona

Well I’ve progressed to the discharge ward!!! Bloods needed to be right and kidney function that won’t affect you coz it’s only because I’ve got PKD.. still woukdnot know Id had anything done to head.. the groin was the worst prob but getting there now. And the weakness being in bed. Catheter was in for 2 days I think but it’s the bloods that have also been the worst... thought I had it in the bag but when I was surprised by yet another this morning had to have my 6 diazepam... it’s a standard joke now haha... thanks for asking about me xxx

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I’m so pleased you are a bit better. I’m not as bad as you as far as having to be doped for blood tests but you have done it and the good thing is you can laugh at yourself. Onwards and upwards 👏👏 Shona x

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How are you today ? Nearly home time hopefully. Xx Shona

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Yes home in the last hour yippee. Really really tired though. Only been out of bed today really and heart rate was too low and kidney function was a bit low too but that’s only my situation with having PKD.

Strange feeling... very surreal and feel like I’m seeing the world through different eyes. Vulnerable too but it’s only to be expected.

Still So glad had it done though and if it meant I was safe If do it all again.

Will check in tomorrow when I’m a bit more with it.. thanks for thinking about me... xxx

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How are you today? I hope you are taking things easy x Shona

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Hi Shona

All good thanks. Really tired and haven’t done anything apart from a lovely shower. So tired... think it’s going to be quite a while before I’m anything like normal.. just reaction from stress, anaesthetic, and I guess procedure.., it’s strange feel sort of vulnerable.. you still seeing the Stones on the 9th? Xx

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I was told it can take a few months before you get over it maybe up to six months but I’m 64 so maybe it will be longer for me also the aneurysm is large which will have the coiling and a stent put into an artery and another one closed so I’m not expecting to be dancing for a while . Yes still going to The Stones and the tickets came today. How can I stop being excited 😂😂😂. Do you have somebody at home to help you ? Xxx

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Good Morning Shona

What a lovely sunshine day it is here this Sunday. I’m still so fatigued but going to do one more new thing everyday as they suggest. Yes my husband is here so I’ve been looked after. Think he’s just relieved it’s done and hasn’t got to listen to be going on about ‘shall I /shouldn’t I have it done!!!’

Don’t think there was any way he was going to let me escape on admission day no matter how much I trembled!!!

Enjoy your your day and the sun if it’s out in your neck of the woods 👏🏻🌅xxx

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Morning , I’m pleased you are getting a little better every day and good that your husband is helping you so much. Sunshine always makes us feel better. Good vibes sent your way and be good to yourself and your husband . My hubby is helping a lot more than when I had breast cancer . He has since retired from nursing so I think handling me plus his job was too much . So much more caring now thank goodness. Keep in touch and let me know how you are progressing . Love, Shona xx

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Hi Shon48,

Sorry to hear about about the rough patch ☹️ but now that that’s out of the way you can concentrate on healing! Do you know how long you’ll be there? It’s hard to rest when someone is waking you up every hour and not in your own bed. I don’t remember the entire week i was in. When you fainted was someone with you? I hope you didn’t hit the floor! Have to say, even with the issues you sound like your in a better place than b4 😊 👍🏻

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lol still getting use to this, 🙄 that was to tillymint16, but hi anyway to Shon48! hope your day is going well 😊

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Good Morning it was a big plip and knocked my confidence but ok today ... still 3 diazepam for an unexpected blood test to test Kidney function but hopefully Im out of here... god what a wimp but getting there and still never had pain killers for head ... wouldn’t even know!!!

Thanks for thinking about me💗

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Your no wimp! 😊

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Thanks... yes actually your right ... I’m going to stop saying that!!!

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Hi found it hard to work out where to respond ! My op was abandoned as too risky to eyesight. We'e going back to monitoring it but the anaesthetic has left me with leg cramps when I walk. Terrible pains. I'm hoping it goes away in a few days and I'm not moaning as I still have my sight!

I'm tired beyond belief too. That must be the anaesthetic.

But nothing to worry about :)

X

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Hiya louise

Oh I didn’t realise that you’d had the anaesthetist.. don’t understand what those pain are but OMG the effects from the anaesthetic are quite something!!! So tired!!! I’m going out in the car with hubby today but won’t be doing anything else... just not used to being this immobile and exhausted after doing nothing!!!

Hope you enjoy this weather and begin to feel ok again

Best Regards

Andrea xx

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Thank you for the welcome Cat3, the clipping wasn’t a result of a bleeding, the bigger of the 2 adhered to another artery, when the Doc tried to separate it the bleeding occurred which caused some damage. That’s where the extra hrs under came from and instead of 1 clip on it there’s 3 and 1 in the other. I was very fortunate the radiologist spotted it while checking my sinuses and that i didn’t wake up in hosp like you, wondering what happened😳

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I had the same in Jan 17 , i wondered if I would ever feel right again . I had every issue going , tired , memory , falling over , but slowly they almost went . Now I’m almost there and living my life to the full . You only get one go at this life so keep telling your self that and enjoy it xx good luck xxx

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Hi Woo777,

So kind of you to reply, I think with the nicer weather and being able to be outside gardening helps me to focus on things other than my limitations. Tired✔️ memory loss✔️ balance issues✔️ and nauseous almost on a daily basis and sometimes several times a day, and pain where my plate is. But here I am so I deal with it, sm price to pay. I don’t mean to sound sorry for myself mostly frustrated.

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I hope you be OK. Might be long journey. 👍

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Thank you Cj-195, I appreciate that! So nice to have you folks out there, wish I knew from the get go that this site was here. 😊

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How are you today ?? Catheter out hopefully and still feeling as happy. I’ve been told I’ll be in for a week , are you the same ? Xx

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Hi MCKU, I hope today your feel better. Just now you should thinking more for yourself. Not everyone can understand. Xx

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