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Hi

I has my SAH back in December 2005 and had the coiling procedure. I saw my consultant in January this year who informed me that after a check up MRI that I has a second anyersm which giving my past history would need coiling in the next six weeks.

Now 7 months on I am still waiting after having the procedure postponed on a few occasions due to staffing problems etc. Can anyone tell me if they have had the same problems I feel I am getting fobbed off all the time when I call to ask about progress.

Jo

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Hi Jo,

Unfortunately, your story seems to be all too familiar with aneurysms that need treatment. I know that a few people on this site, have had to have their treatment delayed .... often because of an emergency case that has taken priority or no bed available.

If you feel that you're being fobbed off, if might be worth contacting PALS - The Patient Advice and Liaison Service http://www.pals.nhs.uk/cmsContentView.aspx?ItemID=932 ...hopefully you will be able to do a search and find your local branch and voice your concerns if you're not getting anywhere with the hospital. xx

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Hi Jo

Sorry to hear that you are being put through this. Last year I had a letter, dated April 09, saying I needed more coiling done - within the next 3 weeks. Those 3 weeks turned into 6 months so I understand your frustration.

On one occasion, on the morning I was due to go in, I was all packed awaiting nervously for a return call to tell me what time to go in and lo and behold they couldn't find me a bed - that was not news I found easy to swallow - it is such an anxious time anyway, so any delay just makes it worse. Family and friends could see how it was all affecting me and often told me to complain, but I never did, I understood they must have more urgent cases than me so I tried to be patient - but my emotions were all over the place.

Feeling fobbed off is not an ideal way for you to be feeling with this hanging over you so it may be worth looking into PALS as Karen suggested.

I too have a second unruptured aneurysm and if that ever needs coiling I am not sure how I would deal/cope with any delays etc., if the same were to happen again.

I hope you are not waiting too much longer,

all the best,

Sarah.

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Hi

Thanks for the advise, I already got in touch with the patient services who looked into it for me. They came back to say my surgeon said maybe I didn't really need the op and would need another angio to determine this.

I was devastated as I find the angio a really distessing experience and I felt even more fobbed off than usual. My partner is getting very irate with it all and I feel like just giving up on it all as we can't plan or do anything.

I must admit I am amazed how many people have had SAH as before I had mine I had never heard of it

Jo

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Jo,

I am not surprised you are getting upset about this!

How can they tell you that you need another coiling op and months later suddenly decide it 'might not' need to be done?!

Why would they need another angio to tell them? Surely the scans from the previous one can remind them?

I would definitely complain, as they are messing you around. Waiting for an op is highly stressful, which is something they tell us is not good for us!... :crazy:

I am dreading my angio in December (12 months after my SAH/coiling) and it won't help if I am messed around too, as it would be nice to be able to book xmas meals out etc, and know that I might be able to enjoy xmas properly this year, but it sounds as though I should prepare myself for being messed about.

Hope you get something sorted soon. Keep us posted

Take care

Kel x

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Hi Kel,

I just think they are saying anything to keep me from complaining any furthur. I rang the other day and now the surgeon is off on long term sick, surely there must be more than one surgeon. My GP said he could refer me to another hospital but I cant face starting the whole procedure again.

You SCH is still relatively recent I hope your angiogram goes well best of luck and why is it that so many of us have SCH in December? mayne we should cancel the stress of Christmas!!

Take care

Jo x

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Hi Jo

I still think you should complain about the way they are being so blase about whether they should do the op or not. It is your body and your life they are talking about. It is not fair of them to mess you around.

I vaguely remember xmas last year...I had only got out of hospital at 5pm xmas eve after having my coiling 18th Dec, so was 1 week post-op on xmas day...so not entirely 'with it' and found it overwhelming to say the least.

I have read that there are more instances of SAH around December time...

Kel x

Edited by KelBel
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Hi Jo....i do feel for you....i know you dont want to and should not have to, but maybe you should go to another hospital and get yourself sorted. The stress and worry is not good. Please take care love Tina xx

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Hi Jo

My goodness what a stressful situation. I think maybe it's time for you or someone on your behalf to start making some noise! Maybe you should think about another hospital, I think maybe a second opinion could be helpful to you.

I had my SAH in February and there were a lot of emergency admissions with the same thing. The sister told me that it was "aneurysm season"! My cousin had had a SAH the previous February. She said they expect to be very busy Feb/Mar and again Oct/Nov because of the change in temperature and change in air pressure! She did say that they dealt with SAH's throughout the year but during these months they were rushed off their feet! I know that I was having a lot of stress due to a family issue at the time of my SAH!

I do hope things get better for you, take care.

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Hi Tina,

Thanks for the reply your right the stress is not good!! I think I will give them untill the end of next and then try and take it further. I know its silly but I am really scared of being by myself incase I have another SAH.

Jo x

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Hi Liz,

Your SAH is quite recent I hope your are recovering well, it's amazing how many people are suffering with them these days it just goes to show how stressful life has become. Thanks for the advice, if nothing happens next week them I will have to take it further.

Take care

Jox

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