Brain Aneurysm Awareness UK

Aneurysm Surgery??

Good Morning all you really nice people. I'm on my way now and have managed to get the surgeon I have dealt with all the way from diagnosis to operation. I was diagnosed in March this year with a rather large central aneurysm with a daughter sac attached so it has rather weak sides but the consultant I am under I truly trusted a million percent. I had a clinic appointment with him on Wednesday this week only to find out he's moving to one of the large London Hospitals and I was given the devastating news that after been told in March I would be getting my surgery done in July to find he might not be able to do it before he leaves!! I was totally devastated. I felt as bad not knowing if he would be doing my surgery as when I was first diagnosed. This morning I have taken a call from his secretary and he IS going to carry out my surgery on the 18th of July so not long to wait now. The relief is overwhelming. I really trust this Consultant and feel that is a big head start on what's to come and now need to be all prepared and in a good mind place ready for the surgery. I will be reporting back hopefully on how my procedure goes and give a little bit of inspiration to all you other good people out there in the same position and waiting for your time to get rid of these ticking time bombs in your brain that stop you leading a life you want to lead. I know the worry and stress is terrible not just for you but for all your families as well. I know since my diagnosis it's played havoc with my family members who are worried all the time and seem to be full of anxiety and stress. My husband is in shock at the moment and coming to terms with this is really going to be happening now and in just three weeks and not the distant future any more. Keep brave people and try and stay POSITIVE!!

My very best wishes to all you other sufferers

Lynda

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Lynda im over the moon for you and wishing you a speedy recovery x

Im due to have my angigram sunday and it seems the complaint i made has done the job as the follow up is scheduled for friday where i will find out which op is suitable and a time scale too.

All the very best and hopefully speak again soon

Xx

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That's GREAT NEWS at last something happening for you!! Have you considered if you have to decide yourself which procedure you are going to opt for?? I found that decision really difficult if I'm honest and my Consultant was happy to perform either!! His opinion was one was no more difficult than the other but ultimately the decision had to be mine?? I tossed and turned for days about it all but I have such trust and faith in my Consultant I am more than comfortable to have the more serious and invasive of the two procedures on offer!! I know the skull surgery is much more invasive then the through the artery but it's a one off thing and yes the recover us much longer but if anyone can perform this type of surgery then it's HIM!! He doesn't even need any scan pictures he's happy to just go straight in and get the job done. I think the fact that it's one check up only and then finished has a much better end than the having to visit every 12 weeks for life with huge doses of Aspirin every day for life as well. I know if I had been under any other Consultant I would definitely had the groin surgery but because it's HIM then I trust him like I could never trust another person on the planet. I have seen where some patients have had the coils inserted and then have to have the clip later so I feel I HAVE to go with the one time only surgery as once this surgeon has moved to London then he won't be available should I need the clip surgery later. Its a fantastic position to be in if you truly TRUST the consultant who is going to perform the surgery in fact if things went terribly wrong for me I would know that man has done his absolute best for me so I feel I couldn't ask for MORE!! Please let me know how you go on and what happens next with your journey I am really interested to know. Who knows I might be able to give you a proper run down of how things go and what to expect if you are running a little way behind me?? At least once I get in that operating theatre on the 18th July it will be the start of my journey to be able to lead the life I WANT to lead rather than the life I am now having to lead. I promise I will let you know how I get on and please let me know the same from your end?/

Lynda

XXX

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Thanks Lynda. Mine will be behind you so please do give me the ins and outs..warts and all so i can get a realistic picture. Im so glad you have found someone you trust it makes a difference to your wellbeing. I had discussed coiling and the professor had recommended it too but his understudy is in disagreement due to it being wide necked hence the angiogram he wants an up close and personal look at the little devil and im inclined to agree with clipping now. I will let you know the outcome next week xx

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Please do it can be a real daunting decision to make. In my case my consultant made it very clear the decision was totally MINE but I had the opinion that they are the experts so they must know which way would be the best for them?? It's a one off thing for us but something they are seeing quite regularly so they must have a lot more idea of which way would be best. I pressured my Consultant into saying - Look at the screen and if that was in your Mothers head which way would you want to tackle it?? It took me half an hour to get him to answer and his answer was - Lynda you seem a very black and white person and if you WAS my mother then I would clip it and job DONE!! That was good enough for me. My family disagree with my decision totally but I trust him and don't want to spend the rest of my life trailing back to Hull every 12 weeks for life. If more coils are needed at a later date then MORE anxiety. I'm hoping to spend more time in Valencia where we have a really nice City Apartment and I sure as hell don't want to be having to look round hospital appointments when booking flights. I've had a full working career booking everything round VAT returns so I don't want to now find myself replacing one for the other ha ha. Please let me know how you get on and if you are like me you will probably value somebody who's had what will be following for you giving you a very honest opinion and who knows we might be able to really help each other.

You enjoy your weekend and try not to get anxious or stressed. It really doesn't help and it's not an easy thing to do but PLEASE TRY

Lynda

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Yep indeed i like to know facts (its my job lol) so please yes complete honesty. I love yur directness and humour right up my street lol

Ive just returned from the hospital having falling down the stairs. Ive torn the muscle in my shoulder at least its taking my mind off sunday. My first request will be to the consultant to show me his hands....checking for any shakes lol

Xx

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Ha Ha Yes we are alike in the humour!! It will get us through whats to come. I asked my consultant for two things - No Parties the night before my op and I wanted to be first down to theatre NOT when he was worn out at the end of the day and he has satisfied both requests for me but if you don't ask then you don't get do you?? My Consultant looks about 12 with braces top and bottom on his teeth and looks like he's never been to a party in his life!! He is so Geeky and Serious you'd think he was about 65 instead of about 35 ha ha. He has something about him though that I really like. I think he's honourable if that't the right word. I'm going to tell him to speak Spanish during the surgery to see if I can learn a bit more. I know he's Portugese and studied in Lisbon but he spent a lot of time in Valencia before he came over to Hull so he must speak Spanish as well. I've heard of people coming out of Brain Surgery with skills they didn't have before so a bit more Spanish would be a nice surprise for me ha ha. I bet that shoulder hurts like hell?? Don't you be giving yourself even more problems you have enough going on at the moment and we don't want you going into overload!!

I will defo keep in touch but it's just assessments next week then it looks like a week off then in and the surgery so not long to wait now. From me getting my first diagnosis it will have been five months so I think I've done really well judging by how long some patients are waiting. I just want it over and done now and try to come out in a half decent state but either way I will ALWAYS be hones with you. I've been and bought a massive bottle of Omega 3 capsules ready for the after. My consultant told me ALL brain intervention patients are left memory impaired and I've been there before but them capsules really made a HUGE difference for me so I'm already getting prepared ha ha.

Hope that shoulder doesn't ruin your weekend??

Lynda

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Hi Guys new to this site had my naturism clipped in June still have another seven!! Small Ines they say but a 14mm on the outside of my brain so very scary times, I was fine having mine clipped recovered really well or so I thought now I'm feeling so depressed and scared about the future I'm only 46

X

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Hi loganjames

Its good news you are recovering well physically. I think the depression is part and parcel of the major surgery you have had and you may have more to come so its natural to feel like that. However when i feel down i look at it from another perspective . The good news is you survived major surgery the rest here on in will be a doddle if you start to think like that it wont feel as scary. Its good to talk about your fears and feelings rather than bottling them up. If like me you like to put a brave face on for the family it can be quite hard on you. So feel free to vent on here there are lots of supportive listening ears. Xx

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Can I ask who you complained to? As I'm having major problems trying to see someone ?

But glad it work for you xx

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I complained direct to the hospital and copied my MP in. they referred it to pals. Its worth an email if your being stone walled it may get things moving for you.

Good luck and keep us posted how you get on :)

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Yes I did PAls and they have really messed us around haven't contacted MP so maybe try that?

Thanks I will keep you posted. Good luck to you xx

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If pals didnt work for you then you can escalate it as a formal complaint. Get your mp to assist you with it. Wishing you well xx

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Yes going to start that today thanks x

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Just to update have now made a formal complaint hospital have acknowledged complaints and say they well get back to us by August 15th? So it's a wait and see but I've been waiting since December 2016 for another month won't hurt lol x

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Hi Lynda

The above am is not to bad honestly and at least you will have options, I was so scared for my first op, like you say trying to stay strong for other people.But honestly Hun I was ok after a few days first twenty four hours are sore but can be controlled with painkillers try not to worry I know that's so hard.

Big hugs

Xx

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How did your angiogram go? I've got a angiogram on the 18th September do you get results the same day?

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Hi it was fine just tender in the groin area for about a week, my results went to the consultant who i saw 5 days later. Im having mine clipped i had my pre op nearly 4 weeks ago now but good job i rang them as once again they had lost me off the system!!! Been passed between dif consultant lists now back on my original ones list. Ive never known anything like it before in my life. I have had more care and consideration having a tooth out.

I wish you Good luck xx

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Lynda wonderful news really pleased for you and your family and to have your own surgeon preform the operation please keep us informed on your progress.

I am still waiting have complained nothing husband has complained and nothing my 7mm aneurysm was found in December and I still haven't seen or spoke to a doctor hospitals a a joke

All the very best to you will be thinking of you xxx

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Hi,

Just a suggestion for you?? If I was you I would be getting in touch with PALS it's a patients liasson service that are stationed in EVERY hospital and I know my daughter got in touch with them by email once the alien of mine had been found and told them of how it had affected us ALL as a family and they keep their eye on your case and make sure nobody jumps the queue ahead of you. They are a bit of a pain for these Consultants as they actually go on a morning and meet with them face to face on YOUR behalf and ask for updates etc. I know the Medics don't really like it but if it gets you where you need to be then why not?? It sounds selfish but while ever you aren't using them others are and may be getting ahead of you?? I've been today for my pre-assessment and it couldn't have gone any better and I got the opportunity to ask ALL the questions I had. I had to have an ECG as well and that went really well so I'm fit and ready to go. I have to be at the hospital a week on Monday at 4.00pm and stay overnight ready for my surgery first thing in the morning of the 18th so not long to wait now. I will let you know honestly how I go on and I promise you and everyone else who reads these messages I won't mince my words or make out something is not what it is. That's not my style and I think it can be a REAL help other people letting you know what to expect and what's to come warts and all. That way at least you can prepare better and be in the best place possible for what's to come. I'm having the clipping and I know it's a lot more invasive and more dangerous by comparison to the coiling but this Portugese surgeon I am under is just something else. Geeky serious young and NO humour at all. He seems like after work he will have his head stuck in text books but he is the most career driven person I have ever met. He is on his notice now as he's on his way to one of the Top London Hospitals so my decision has been made MORE by my faith and trust in HIM!! I have heard of quite a few patients having the coils and then more added then more until they have to be clipped so I take the view if I got to that point the one person I would WANT to do the clipping will be long gone and London will be SO lucky to have him. Today I was told I could be out in a week!! I will have at least two days in High Dependency and then I could be ready for a normal ward for observation for another few days and then because I have toilets and showers here at home both upstairs and downstairs and someone to look after me when I get home then they prefer patients to recover further at home than in hospital as we all do better in our own surroundings. I was told to expect two months of NO Working due to head pain so I'm really good to go now. I am prepared and my job and everything I have got covered. Me and my husband have run an Electrical Contracting Business for nearly 30 years and I do all the admin. I've trained my husband to do our payroll my daughter is doing our invoices and the Grandson is doing the accounts - THREE people to do what I do ha ha. To be honest I think the waiting is worse than the dealing with the situation and if I had to have waited any longer I wouldn't have been too happy as it weighs down on you all the time and your family suffer just as much. If you haven't tried PALS please give them a go or better still get your husband to send an email and explain it's taking it's toll on the whole family and could they give you some idea of Time Scale?? You have nothing to lose.

Keep in touch and please let me know if things start moving??

Love to you and your family

Lynda

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Hi Lynda yes contacted PALS 3 weeks ago and have been chasing them all week with no joy 😡 x

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You're right it is a joke to be left waiting all that time. Whilst we may not be in any immediate danger the psychological impact is tremendous. This should be recognised by the nhs and there should be a protocol with strict timelines about how newly diagnosed patients are managed.

Its at least on par with patients who are diagnosed with cancer though the stress we suffer is potentially fatal.

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Hi Lynda, I am new to this site and was wondering how you got on. You must be a week or so post op so hope you are doing okay? Xx

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Hi catblood

Lyndas first surgery was cancelled 5 mins before going into theatre due to another emergency bleed patient needing the icu bed. However she had the surgery this thursday. Ive not heard anything yet so it must have gone ahead.

Just praying all went well she is an amazing lady xx

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Hi, I'm BACK! Surgery done and dusted. I feel a bit light headed and have slept a lot but other than that I'm doing OK!! I do feel tired and I get my stitches and clips out on Monday so that should make me feel a bit better. I think the meds are to knock me out at the moment but in myself I feel not too bad. I'm just glad it's all over and once the pain is over then it's back to normal life!! I can't remember what that was like ha ha. The anyurism seems to have taken over my life for MONTHS!! I can't believe all the risk is GONE??? I know I made the right decision for me and the operation went really well. At the moment my appetite isn't too great but I'm trying really hard as my family are all over me ha ha. Right I'm off for a kip ha ha

Lynda

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