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Having to make a decision almost 11 years after aneurysm rupture


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Just to update, I have today survived the angiogram!  I got up at 5am to be at the hospital for 8 which had been changed from the original 8.30 as my procedure was due at 9am.    But when I

Hi Sarah,   Well done for speaking up for yourself.  In this day and age, it's a bit much not to expect you to do a bit of research on the net - why shouldn't you? The only answer to that ca

Well, I had the appointment 2 days ago to discuss the dural AVfistula that they had incidentally found in my brain whilst checking my 2 aneurysms.    All my planning in allowing enough time

Sarah, I've just read all of the posts and have seen the long arduous journey you've been on. My heart goes out to you! I had brain OP number 2 in December last year, and so can relate to some of the thoughts and worries you have going through your mind.

 

My thoughts are with you - I really hope you get a positive outcome. Take care and lots of love. X

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Many thanks Tina, Daff, Chelle and Claudette for your love and kind words.  Today is the day I am being discussed in the MDT meeting, so hopefully I will hear something in the not too distant future.

 

It has certainly been an arduous journey Claudette and losing 6 close family members during that journey has made it so much harder.  

 

Love,

Sarah x

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  • 4 weeks later...

Well it's a month since I posted saying that I should receive a letter telling me what had been discussed and decided at a MDT held on 9th October regarding my case.

 

I still haven't received that letter, but yesterday I received a phone call from the hospital's x-ray department wanting to make a pre-assessment appointment with me in preparation for an angiogram that had been requested by my consultant.   

 

This came as a bit of a shock as I've not heard from the consultant to explain the purpose of this.  He must have something up his sleeve because you don't request an angiogram without reason.

 

I will update when I know more,

Sarah x

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  • 3 weeks later...

Further to my last post, I had my pre-assessment on Monday which was much longer than those I have had in the past - 2 hours in total.   I was given a home Covid testing kit and told I would get a call as to when to take the test.

 

Well I've had that call now - I've to take the test next Monday 30th and then self isolate until Thursday 3rd Dec when I will be having the angiogram.

 

I never did get the letter telling me exactly what they're looking for, so I'm guessing that last year when they found this davf by accident whilst looking at my aneurysms, they maybe haven't got enough 'close up' pictures and want to double check the feeders, venous drainage etc.

 

That makes me sound like I know what I'm talking about, but I don't lol - perhaps they'll explain it in more detail at the follow up, which if my previous follow ups are anything to go by, it could be months away.

 

Anyway, just another 6 days of anxiety until the angio is over!

 

Sarahx

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Why don't you ask before the angiogram. I presume you will have to sign a consent form before the procedure and that it will be explained before you sign.

 

That could be the optimum time to ask. They are questions that you need answering first.

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You've nudged my memory SM mentioning that - I signed the consent form on Monday at the assessment, then the nurse said she would go and find a doctor to come and explain it, then he would sign it.

 

She explained in minute detail about the actual angiogram procedure, but nothing as to the reason why.  

 

She came back without a doctor, saying they were all on emergency cases, but a doctor would sign it on the day. So hopefully I'll get some answers then.  

 

Thanks,

Sarah

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Hope it isn't signed by a doctor out of your sight.

I think you will have to dig your heels in and insist you see a doctor before your procedure.

 

In fact, had it been me, I would have refused to sign it until I had all the information.

I am a bl00dy minded person.

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Today was angiogram day.

 

Up at 6.15am, all the usual getting ready and trying to be mentally prepared. Arrived at the hospital at 9 am.

 

Should have allowed a bit more time for the fact that there was a limit of 3 people in the lifts at any one time.  Then when a lift finally became available someone selfishly pushed in before me taking up the third position!

 

Arrived on N Floor at the neuro day care centre. A nurse came and unlocked the door to let me in, asked my name, looked at her list and said I wasn't on it! 

 

Luckily I had my letter on me which fortunately confirmed I hadn't got the date wrong, so she made a phone call and it was confirmed I should in fact be there! 

 

She took my blood pressure, which unsurprisingly was higher than normal.  

 

Had my own room, changed into gowns and those lovely knickers that look more like a bath hat, had a canular put in arm and a named wrist tag put on in case I forgot who I was!  

 

Consent form explained, risk of stroke, death etc and then signed. I mentioned at this point that I hadn't noticed the pulsatile tinnitus for the past 2 weeks which was the reason I was having the angiogram. She said she would mention that to the radiologist.

 

As she left the room, another nurse came in, introduced herself and said she would be taking me down and looking after me.  She asked me to move onto the bed from the chair so that we could go. 

 

At this point someone else came into my room and said I wouldn't be going anywhere as an emergency had just come in.  This didn't help my anxiety levels although I do appreciate emergencies take priority.

 

With unspecified waiting time ahead, the tears started to flow. I decided to lie down and try and pass the time be having a nap. 

 

A few minutes later the neuro radiologist walked in - he'd got the message about the PT and decided not to do the angiogram after all, explaining his decision to me.

 

He already has the pictures from last year's angio and now he is going to arrange an MRI scan at the beginning of next year.

 

If the davf is still there (?) he will have a discussion with his 'team' as to the way forward for treatment. He thought that would most likely be gamma knife treatment.

 

Time will tell.  In the meantime, I am happy not to have had the angiogram today and can now relax over the Christmas period without any 'angio results' hanging over me.

Sarah 

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  • 3 weeks later...

I suppose I was being optimistic when I thought I might get to the other side of Christmas before hearing about a date for the proposed MRI scan, but it was not to be.  In fact, I didn't anticipate that getting such an appointment would be quite so complicated!

 

I received an email last Thursday saying they, the radiology department, were ready to make an appointment for the scan and I was given the option to receive future correspondence by email or continue through the postal system. 

 

I chose the email option as I felt it would easier, quicker and cheaper for the NHS.   I followed the instructions, got a ref no. and then had to ring the hospital, with this number to book the scan.

 

During the conversation I was told she would have to ring me back after she'd spoken to her supervisor as she was having problems fitting it in. She also said that her supervisor wouldn't be in until 10am - it was now 8.30. 

 

She rang back about 10.20 saying that speaking to her supervisor hadn't helped much! It was during one of these calls that she informed me that I needed 4 examinations on two different scanners(unexpected news to me) and she was trying to fit them in together during January which was already pretty full.

 

She finally came up with 14th Jan at 3.55pm and said the confirmation letter would be sent via email.  About half an hour later she rang me again. 

 

Could we change the time to 2.55pm because she'd been told the scans had been booked the wrong way round as they needed to be done in a certain order.  She said I would get another email letter to confirm.

 

When I went into my emails, there were actually 3 appointment letters.  Each one needed a code to open, the codes were sent to my phone and after a few attempts I finally matched the right code with the right letter!

 

Thinking I might never get access to the letters again, I decided to print them all. The third, mystery letter has a time of 4.35pm:unsure:

 

If I turn up at 2.55pm on 14th I reckon I have all bases are covered!

 

That's not quite the end of the saga though - yesterday morning 4, yes 4 letters arrived on my doormat - all from the hospital relating to this scan appointment. 

 

They are all the same format with varying times/types of scan and I've yet to compare these 4 to the 3 I've already received by email.   

 

So much for trying to help the NHS save paper etc.

 

Sarah x

 

 

 

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Ah Sarah WOW four scans - at last they're being thorough.  What types are they, do you know?  

 

And yes, so much for trying to save them paper - at least you now have your appointment / s and its not too long to wait.

 

Take care hun xx

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Thank you Skippy and Tina

 

Well, I posted that before the postman had been this morning and yes, he has delivered yet another appointment letter!

 

 

23 hours ago, Skippy said:

What types are they, do you know?  

 

 

Depending on which of the 8 appointment letters you look at, there is mention of MRA Head, MRI Head, MRA Head with contrast, MRI Internal auditory meatus Both. 

 

The only other thing I can remember her saying during the phone calls is that I would be in one scanner for about 15 minutes and in the other scanner for approximately 30 minutes.  Whilst I might be a bit confused by it all, I trust they know what they're doing!

 

Sarah x

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Sarah, that was a gong show if you know the expression. I'm glad you are getting those scans though. We all know they are very important! I have yet to have mine changed from December 2021 to February 2021 or at least July 2021 which is my 1 year. 

 

Best of luck in January! Take care!

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Many thanks Ann and Jean for posting. 

 

I hadn't heard of the gong show expression Ann, but thanks to Google, I know now! That sums it up nicely!  I hope you get your scan dates sorted and that it doesn't turn into a gong show!

 

Happy Christmas to you and to everyone else who might be reading this xx

 

Take care,

Sarah xx

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  • 3 weeks later...

Well, I'm a small step nearer to finding out what, if anything, they plan to do with my dural arteriovenous fistula and/or aneurysms in that I had my MRI scans yesterday (14.1.21).

 

I'd been getting anxious in the days leading up to yesterday, partly due to knowing how long I would be in the scanners and partly having to go into a hospital when covid cases are so high. (one of my employers have catergorised me as being clinically extremely vulnerable),  

 

Then to make matters worse the snow came! I went to one of my jobs yesterday morning and on the way down their untreated drive I started sliding on the snow/ice. Bearing in mind I was sliding downhill with a 90 degree bend approaching I decided the best option would be to turn into the open field on my left rather than risk losing control on the bend, hitting the fence and dropping into another field that I wouldn't be able to get out of!   I was quite impressed that I made that decision as the grass brought me to a standstill which left me in a better position to negotiate the bend.

 

This incident almost caused me to cancel the MRIs as I knew the snow would be worse on the higher ground that I had to take to get to the hospital and I knew my car wouldn't cope with it.  As luck would have it my son was able to take me in his 4 wheel drive vehicle.

 

No covid test beforehand and no questions asked if I had any symptoms on arrival at the hospita,l which I thought a bit strange.  

 

The scans were almost without incident although I was not happy that I had to wear a face mask whilst in the scanners.

 I had the usual problem of them not being able to find a vein in my arm in order to administer the dye. The first attempt failed, so he tried my other arm and eventually hit the target.

 

I'd only been in the 2nd scanner a few minutes when he hit the button and I was slid back out again, the head restraint taken off and he told me he had detected metal and did I have any crowns.  Once he established my crowns were secure and presumably would not fly out of my mouth and stick to the magnets, we proceeded with the scan!

 

Once again I was glad when it was all over.

 

Now the long wait until I hear from them - no rest for the wicked!

 

Sarah x

 

 

 

       

 

 

 

 

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Many thanks for sharing Sarah.

 

So glad everything went well in the end and hope you wont have too long to wait for your scan results. 

 

Well done and for surviving the driving scare. 😊

 

Subs 

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