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Brain Aneurysm Support

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Hello all xxx

me2you profile image
16 Replies

Thank you all for commenting on my earlier post. Has been hectic last few weeks mother in law passed away suddenly and shocked to find out cause it was an aorta Annie which no one new about? Then the funeral took 3 weeks! Undertakers were busy!!!

Just read my last post and need to make it a little clearer think I was still in shock when I wrote it?

So long story short lol

December 23rd 2016 Annie found 7mm Never received appointment with a doctor from hospital to discuss what was found? Never did see anyone? gp organised CT scan in February had grown slightly 7.3mm still no hospital appointment.

People off this site suggested going to PALS I did and they took up my case was told the hospital had no doctors!! Then in September I had an angiogram it showed my Annie had grown again and was 7.9mm but still I had not seen a doctor to discuss what was found last December 2016?!!!

So went back to PALS and they arranged for me to speak to a doctor.

Had a appointment with an neurosurgeon most of the appointment was him making apologies for taking so long to see me they clearly wasn’t ready for me to discuss options I went armed with a list of questions and the only option he could give was clipping?! As he told me I still needed to be discussed with the can’t remember what they are called sorry the coiling doctor? So basically waste of time. Neurosurgeon I phoned yesterday and he has gone on holiday leave now until 15th January 2018 😢 The appointment I received for next April was an mistake his secretary said?!

Just writing this down has made me angry upset frustrated again. People say to me they would see me sooner if urgent I agree it just doesn’t seem to go away and taking over my life and in fact my family life xx

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me2you profile image
me2you
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16 Replies

They have treated you awfully so sorry for you it’s disgusting how much longer do you have to wait!

Only thing I can suggest is you make official complaint to the hospital and hope they take some action.

Hope your ok , take care X

me2you profile image
me2you in reply to

Mikey123

Thanks for replying yes my husband in process of doing this now making an official complaint but not sure if I can be hopeful x

Bonnieblyth profile image
Bonnieblyth

Hi me2you i know exactly what your going through as mine was the same. I got so bad and not sleeping that gp put me on diazepam. A drug i would not have needed but for the poor non communication and constant cock ups by the neuro dept. Put a formal complaint in writing and copy to your mp i did and it put me on their radar at last although there were still cock ups. Please go and see your gp . I sat there crying my eyes out i was just so frustrted angry and anxious. Im done and recovering but now i am waiting for results for an issue that surfaced with my heart whilst i was in icu although im not as anxious about this.

I so hope you get some action/communication soon and you are able to find peace and enjoy xmas. Please keep us posted xx

me2you profile image
me2you in reply to Bonnieblyth

Thanks Bonnieblyth never thought of MP? But hubby is writing an official complaint.

Glad you are on the mend xx

Andersl profile image
Andersl

Unbelievable. Yes I agree, make a formal complaint.

This shouldn't happen to anyone.

me2you profile image
me2you in reply to Andersl

Agree Andersl I am also thinking of changing hospital? But family worries they keep me for ages and I get no visitors 😢😂x

Lyndaryan1 profile image
Lyndaryan1

Hi, have you had any updates at all?? Have you got an appointment at all??

Lynda

me2you profile image
me2you in reply to Lyndaryan1

No Lyndaryan1 nothing no appointment!!

How are you? Driving yet? X

Lyndaryan1 profile image
Lyndaryan1 in reply to Lyndaryan1

Hi, I haven't applied yet as my Consultant left for a better job in London & Hull Royal are reluctant to pass on his details.

The Anaethetist who put me under is fully aware of the difference in time waiting between my Consultant & all the rest of them in Hull so as I'm seeing him in January I'm going to ask him to do the necessary. I am a bit of a car fanatic & have always enjoyed driving. I drive a Porsche 911 through the Summer Months & a Mini Cooper S through the winter so having my husband driving me about in his van he uses for work is a bit different ha ha. He's NO interest in cars at all. I'm a bad passenger if I say so myself so he's wanting me to get back on the road PRONTO ha ha. If I'm honest I haven't felt like moving much. I think this surgery works the wrong way round. I came out of hospital & did a vat return within the week then started declining. I think the anaesthetic carries you a long way in the beginning then it's like a bit of a decline. I had my op in early August but it's only now I'm picking up properly at a decent rate. At first I was hugely disappointed on the decline part but it stands to reason if you have 9 hours worth of anaesthetic in you its bound to cover a hell of a lot in the early days. At the time of the decline I just couldn't see the logic of this been normal but like I say I'm doing really well now. I think it's a really good idea if PALS aren't moving you along then your Local MP should have some clout & get some positive answers & dates on your behalf.

Good Luck & please keep us all posted.

We know how stressful the situation really IS!!

Lynda

XXXXXX

me2you profile image
me2you in reply to Lyndaryan1

Thanks Lynda and hopefully you will be back driving soon.

I am going to try and forget my Annie now if at all possible as my daughter is getting married on the 29th December so busy times ahead and I will get back to it after wedding x

Outtheoffice profile image
Outtheoffice

Is asking for a referral to another hospital an option for you -- even if it means travelling. The way you are being treated is a disgrace ... but alas seems all to common. I hope you find a way though this .

me2you profile image
me2you in reply to Outtheoffice

Yes outtheoffice that is what I’ve been thinking the last few days x

54Apple54 profile image
54Apple54

Thanks for posting this ,I’m at the early stages of being messed around with a 15 mm aneurysm and will definitely now be contacting pals as the waiting game to be seen or not to be seen to discuss MRA results is frankly not acceptable

Wishing you lots of luck x

me2you profile image
me2you in reply to 54Apple54

Wow 15mm how long have you been waiting so far? Have you seen anyone yet? I can 100% relate what you’re going through stay strong and calm if at all possible. What area do you live just wondering if we are both dealing with same Hospital?! I’m in Coventry 😔 😢

54Apple54 profile image
54Apple54 in reply to me2you

Hello ,

I’m in Bromley London so cant even blame the hospital 😀

me2you profile image
me2you in reply to 54Apple54

Thanks for that it’s one I won’t consider as in new year looking to change Hospital. Good luck to you and please keep us informed x

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