Is it just me?!

[me2you]

So I had my first appointment last Tuesday after waiting 11 months and was told after they had discussed my Annie I would be given an appointment To go back in to see them when I asked when? He the neurosurgeon told me before Christmas? Fine but today I receive my appointment and it’s for April 2018!!! Feeling angry xxx

[maya72]

Hi dear. If they decided to postpone its mean its not urgent, don't rush please. When I find out my annie I was so desperate to fix it. Even I told my husband to book private appointment. Reading all the post I decided to do clipping . I thought it will be permanent operation. Now I completely feeling disabled as continuous dizziness unbalance, quality of life is 0. Everyday is struggle. Please do not rush seek for second opinion. Just enjoy your life please.

[AnneSherlock112]

If was important or urgent they would have had you in a lot earlier believe me they did with my first one asap

[Hidden]

Frustrating and worrying time, please believe me they have looked at your scans with a team of people and have decided it’s routine, awful it may seem. Easier said than done but try not to worry. I was told this too with the waiting game and Annie very low risk hoping you see them ASAP to put your mind at restx

[malalatete]

It is elective surgery - so you are on a waiting list. There are other people with non-elective - and therefore more urgent -procedures ahead of you. Waiting is quite normal.

Take the opportunity to prepare fully - update your will, sort out DNR and care plan instructions, so that you have all bases covered and when the time comes, as it will eventually, you are ready to just focus on getting through whatever procedure you have.

If they needed you to be on the table tomorrow they would have you there. You aren't, so they don't. Try and trust in their expertise and don't let timeframes (which are totally arbitrary and random for electives) become your focus.

[Lyndaryan1]

OH NO!!! You must be so upset and downhearted about it especially after the AGE you have waited already!! I would be straight back onto PALS and ask them to explain the delay considering how long you have waited already!! I bet you are really upset with this situation going ON & ON and ON!! I'm upset hearing that!! Last thing I was expecting to hear so I can imagine how let down your feeling and Xmas coming?? I must say I totally disagree with some of these other replies. It's not that you WANT to be worrying about the situation it's the fact it's ALWAYS there lurking in the background!! I'm SO sorry for you I really am. As you know we both started our journeys around the same time give or take no more than a fortnight and the size was roughly the same as well and I was all done and dusted by the end of July and that was after been admitted and getting the operating gown on ready for theatre and getting cancelled due to a serious road crash and the victims of the crash took my place but I was back in within a week!! I would be pushing everywhere I could at this point and really rattling every avenue open to me.

Lynda

XXXX

[Navillus]

Extremely frustrating and a worrying time, where you just want it sorted I know. I waited over a year to get mine done too. They are inundated and desperately trying to prioritise. I was strongly advised to not go private as I too wanted to speed it up at any cost. However, if you get any sudden headache or severe pain go to A&E immediately. In honesty mine didn’t change in that year and didn’t burst and they have done an amazing job of sorting it out. Try and enjoy time and make the most of pre-surgery Health. It’s awful but when you actually get admitted you will see there are people with burst aneurysm and who don’t make it and these cases have to take priority. Hang on in there - I totally empathise at your frustration.

[Andersl]

Totally unacceptable. Whatever the situation with your aneurysm it is well documented that patients who know they are walking around with an aneurysm are susceptible to anxiety quite understandably. Also stress can raise blood pressure which is what we need to avoid. Thus giving you an appointment so far away is highly likely to cause stress.

Is there a research nurse or neuro house doctor you can contact to say you think there's been a 'mistake'? You need someone empathetic to your situation. It sounds like an appointment administratot who made the booking was unaware of the importance of making it earlier even if it is only to give reassurance and an opportunity to ask questions.

If that doesn't work I'd make a complaint.

[Nettiefour]

I really do feel for you, I would phone the surgeons Secretary and explain and ask her check out your case and hopefully reassure you.

I can also say that when mine was found I was admitted that day and transferred the next day for surgery said rupture was imminent x

[Lyndaryan1]

Hi,

Have you had any news at all? I have been thinking about you and your position constantly. It's the worst time of all the waiting. I've got my fingers crossed you have had some action and things are moving for you??

Lynda

[me2you in reply to Lyndaryan1]

No Lynda no news at all but to be honest my daughter got married after Christmas so have been busy with that so I haven’t pushed it. But going gp later as I have numbness in arm and lost strength and a headache that I can’t get rid of but I will ask gp if he has contacted them as he said he would before Christmas.

How are you feeling? Driving yet? Any problems since your operation? I do hope you are fit and well x

[Lyndaryan1]

I'm doing well to be honest. I think maybe I was over doing things once I got discharged not giving any thought at all to the BIG dose of anaesthetic used to do the operation!! If I could change anything that would be the only thing I would do differently. I would have taken things a little bit slower & rested a bit more but I'm Self Employed so I suppose it comes with the territory. Other than that I'm doing really well - My licence is been dealt with so that's something to look forward to in the very near future. I can say I don't have one regret opting for the clipping rather than the coils. I had enough of hospital & wouldn't want to be on that yo yo of always having to go back to have the coils checked. Just thinking about that I would have already been twice & the third one looming up?? Not for me so I definitely made the right decision for me & like I say I don't have a single regret with the procedure I had only to take it a little bit slower & easier on discharge.

Please keep in touch & let me know how your getting on!!

Lynda

XXXXXX

[me2you in reply to Lyndaryan1]

Will do and you look after yourself x