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Anyone have any real world truth to share? I only ever had one when I was unconscious the day of my SAH so I wasn't "awake" to understand what was happening. LOL Now, 3 years later they are insisting I have to have an angiogram of my brain because I never had the 6 month follow up one and now I need spinal surgery, which I can't have until they clear me.  It's ridiculous. My doctors' clearances now need clearances! 

 

I'm very afraid of this angiogram because I have to be awake. They will use sedation but how much? Is it the kind where you really have no idea what is happening or is just a little valium? They claim I will be awake because they have to talk to me while they are doing it. With my spine as bad (painful) as it is, I am really freaking out.

 

A) I'm afraid to let someone mess with my brain now that it is healed. 

B) I'm afraid the pain from my spine will be so severe I will be unable to lay there for 3 hours. 

C) I'm afraid they will find something. 

 

Tell me I am being a baby! LOL I know intellectually it's not that bad but for some reason I'm really terrified of this one test. 

 

:crazy:  :crazy:  :crazy:  :crazy:

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Maybe I can help you with this. I do concur that the circumstances seem somewhat sketchy, but I have had a few angiograms . I had a couple that I vaguely remember directly following the SAH. Then I had one about a year later. I didn't know I would be awake for it until I was being prepped. If my husband had not been there I may have left.

 

They give you what they call a "twilight" sedative; conscious but chilled. It should help relax your back. I'll admit that I was calmed by the fact that my " original" interventional radiologist was doing the angiogram and he was the best. The following year I had another one, done by a "stranger" radiologist, but it went ok too.

 

I'm not saying they were my favorite experiences, but they were tolerable and not painful. I think a big factor is having trust in the facility and team doing the procedure.

Any other concerns you have ( ie your back pain) should be discussed with your physicians prior.

Hope that helps.
Colleen

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I was awake for my.angiogram, don't recall having a sedative other than the numbing injection in my groin. I felt no pain at all, there were flashing lights as they injected the dye into both arteries in the brain but it didn't hurt. Unlike a ct with contrast you don't get that warm feeling as they inject the dye.

 

The only problem I had was the bleeding from the entry site, they had to push hard for about 20 mins and I had a huge bruise but that soon faded.

For me the worst bit was having to lie flat for a couple of hours even if you needed a wee!

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Tell them all your concerns and that you are worried, it helps it really does.

 

Good luck Susan and I wont say don't worry as it is natural.

 

Wishing you all the Best

 

Win xx xx

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Hi, I have had two whilst awake. I didn't have any sedative. I can honestly say it is a very strange sensation, not painful, just weird. Also, I had a collagen plug put in the wound so that they didn't have to push on it to prevent bleeding. That naturally breaks down over time.

 

Please don't be scared. I honestly believe that fear is what changes our experience, not the procedure. Sending every good wish.

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I was knocked out for my cerebral angiogram in the hospital and don't remember much of my time there anyway, so I am afraid that I cannot be much help there. I do understand your reluctance to have one though. 

 

My consultant has also recommended that I have another one as they are still trying to work out why I had the brain haemorrhage. I may also have to have some spine surgery (I have arachnoiditis and arachnoid cysts) so I think they want to do the angiogram before that.

 

I have actually managed to have them put if off until I have next seen my consultant as I want to know in more detail the reasons for doing it before I agree to have it done as having it done will mean more time off work and more time in the hospital (where, between the brain haemorrhage, my heart condition and the spinal issues, I already spend a lot of my time).

 

I know with me it is part of them trying to find the cause of the haemorrhage but unless they think it has a good chance of finding something I am not keen to have it done.

 

It is reassuring to hear from people who have had them done though, so thank you for that. I hope it all goes well for you with the angiogram and your spine surgery.

 

Gemma x   

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I had a cerebral angiogram twice, once for coiling which I was knocked out for and then six months after coiling to check on the anneurism status.

Like others were I was fully awake for the second process but with a numbed groin.

 

The hardest thing I found was dealing with the amount of the people in the room , there was a lot of people either side of the table and then I had the scanners moving around my head like something out of a sci fi movie which meant for a busy time which was quite intense but everyone was very kind. It's not as claustrophobic as being in an MRI scanner thats for sure.

 

They wanted me to be awake so they could ask questions and keep talking. I felt warm sensations and 'Sparks' in my head but no pain.

I actually thought I had wet myself during the procedure until a kind registrar explained that was the blood from where they threaded into the groin, maybe too much info but it was a surprise to me.

 

I had to lie very still for four hours afterwards and because of travelling quite far to get there actually stayed the night too but it healed quickly with no bruising or issues, just a little tender, nothing that a couple of paracetamol couldn't manage.

 

It's ok and natural to be scared, but this is procedure is not being done in an emergency but in a stable situation , that helped me be calmer going in and if I had to have one again I would not hesitate.

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I asked for a sedative for my follow up angiogram ... I'm in the UK and you have to ask for it, as it's not offered routinely and has to be administered by a Doctor.

 

It did help and I felt calmer and much more relaxed.

 

May be ask them if they can have something underneath your spine/back to support you and to make you feel more comfortable whilst lying flat. I didn't lay there for three hours ... it was probably about 30 minutes. x

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I had 2 angiograms 3 weeks apart, both without sedatives, just a local anaesthetic in the groin.

 

For the first one I was petrified and closed my eyes before I even got into the room so I had no idea how many people or what equipment were in there. I just tried to relax by concentrating on my breathing while they inserted the catheter.

 

Once the procedure started I imagined myself on a beautiful beach at night with a huge starlit sky above. I found myself drifting off into an almost dreamlike state. For me it was undoubtedly a strange experience – but not unpleasant. I got strong sensations of warmth and coloured lights. The whole thing took about 90 minutes for me.

 

For the second angiogram, which was a shorter procedure, I was less scared, a bit more curious and took in my surroundings a bit more.

 

Both angiograms were pain-free, though there was a moment when they looked at the blood vessels behind my eyes that was a little more intense – but still tolerable.

 

If I were ever to need another angiogram I would probably treat it like I did the first time – block out my surroundings and drift off to a weird and wonderful place.

 

Hope it all goes well. Wishing you the best of luck. x

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Susan,

I've had three angiograms and I was out for all three. However, my second one I do remember waking up a bit and feeling like I was in a dream and felt a few weird sensations. The nurses were a bit in denial when I told them about it but I know what I know.

 

There are hospitals that do not put you to sleep and ones that do. Mine did and I'm thankful for that.

If you are afraid tell your doctor. What not? It's your brain.

iola

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I had two and I was awake for both.  I only had a local at the groin site.  The bleeding was crazy for the second one because I was on blood thinners.  If you are not on these, as I was not on them for the first one, the bleeding at the insertion site stops fairly fast.  You have a right to be concerned about the procedure, it is brain surgery after all and there are always risks.

 

However, you do need clearance to get your spine surgery because they don't want you to have an aneurysm burst on the table during that procedure.  It can also give you peace of mind that your brain looks good so you don't have to worry about that at this point.

 

Let us know how it goes!

~Kris

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I've had 2 angiograms now - both awake with no sedatives. The entry site is numbed with local anaesthetic - bit of a strange pushing sensation ss they get the catheter in. No pain whilst they are in doing their thing in your head.

 

The 2nd time as the contrast dye went in the sensation was different a hot/warm feeling, but it was over in seconds - for me the 4 hour bed rest is the worst - but I think the acknowledgement of what has just been done to you keeps you still and calm.

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Glad I cannot remember mine Jimble.

 

When I ask my Family. "Did I have this and that"  I know I am getting well as in early days they would tell me what happened.

Now they go tut sheesh and words like that lol xx

 

Glad all is well and good luck xx

 

WinB143

 

 

 

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Hello all,

 

After seeing my consultant in the summer I was told that I really needed a follow up angiogram to check everything was ok and to make sure there wasn't anything there that would explain my bleed, so I am going in to have it done next Tuesday down in London. I believe the main thing they want to check for is an AVM.

 

It has taken quite a while to come through as I wanted it in a school holiday, so my husband could also be there. I had my pre-assessment last week, which was quite long as I had to see a consultant and the anaesthetists - I am actually having mine under general anaesthetic due to my heart condition and the fact I am considered 'high risk' as I had my brain haemorrhage during surgery.   

 

I am hoping it all goes ok. I know I will have to stay in hospital for at least one night afterwards, but am hoping to be home soon afterwards. Reading what everyone on here has put has been useful as I am not looking forward to having it done!

 

Gemma

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Hello Gemma, many thanks for your update. You must be so glad that your wait is almost over.

 

I am sure all our thoughts will be with you and your husband next Tuesday.

 

Glad you have found the earlier comments helpful and encouraging.

 

Take care

 

 

Subs

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Hi Gemma

 

Wishing you well for Tuesday and hope that all goes ok and that you will be home really soon. Sorry you have had to wait so long, but good that your husband can be with you. Take care & keep in touch. 

 

Love Tina xx

 

 

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Thank you both. The main reason it has taken a while is due to me - I am obviously now back at work and did not really want to take more time off after having had a year off post-haemorrhage, so requested an appointment in the holidays. It is also better for my husband as it is hard for him to get the time off too.

 

Hopefully it will all go well. I am hoping that this will be the end of the investigation into why I had my haemorrhage as I am quite keen to start spending less time in the hospital (especially as I have found out recently I might need more heart surgery as well).

 

xx

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Natural to worry Gemma, but hubby will be with you and waiting or pacing up and down.

 

I know it isn't the same but when I had my shunt put in my husband was going to cancel it,  or so he told me afterwards.

 

I wish you all the best and you are a fighter !!

 

Good luck to you Both

Love

Win xxxx

 

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Gemma. Just sending you all the best for the angiogram on Tuesday. 

 

I can remember only too well going into the National for mine and seeing all the people gathered around the bed and screens, it was like they had sold tickets...actually before hand I got interviewed but one of the wonderful doctors on the pain team which was a little bizarre but it took my mind off things. But they are a fab team which you know so trust in that. 

 

Download something good to watch in the time on your back lying still afterwards. Like you I had an overnight stay post mine but my best advice is make sure everything is as neat and tidy as you would want it to be if you catch my drift and I'm sure all will be well. We will be thinking of you. 

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Thank you everyone. Had the angiogram yesterday under general anaesthetic. Was out for around an hour and then had to stay flat for four hours to let the wound heal. I found that played havoc with my spine, but apart from that it was all fine.

 

Team at the NHNN were excellent, as usual, and I came home today. Am very tired so have reinstated my afternoon nap, which I haven't had to do for a little while and am a bit sore, but apart from that all good.

 

The radiographer came to see me post-procedure and they have confirmed that they cannot see an AVM, which is good news. They are still puzzled about the whole thing, so it will be interesting to see what my neurosurgeon says when the full report is through - they have said they simply do not have people have bleeds of the size I have had with all the side effects with no apparent cause. I think it is probably just one of those things, but I guess they are keen to find the underlying cause if they can - partly due to the other heart surgeries I am due to have in the future.

 

Anyway, all in all, not a bad procedure. Thank you for all the advice and good wishes.

xx

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Hi Gemma

 

Glad to hear all went to plan yesterday and that they didn't find an AVM. It will be interesting to hear what the Neurosurgeon says, I would love to know what caused my NASAH but like you probably never will.

Hope you enjoyed your afternoon nap today and make sure you relax the rest of this week .

 

Clare xx

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Hi Gemma

 

Excellent news that they couldn't find an AVM - now put your feet up and chillax hun xx

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Hi Clare,

 

Thank you :-) I am glad it is all done and dusted. I was quite nervous about it. Although I could rationalise that it is a routine procedure and that I have had numerous surgeries since the heart surgery where I had my bleed, this was the first thing I had agreed to since that event and that made me (and the rest of my family) quite nervous. Luckily it all went well.

 

Yes, it is odd. My neurosurgeon is baffled as the bleed was so big and I have also had some rare side effects with it, such as the hydrocephalus and spinal damage. To be fair I was on a lot of blood thinners for the heart surgery and that might have had an impact as well. I think they are probably getting to the end of any other routes they can explore. I think I probably just have weakened blood vessels due to my heart condition and high blood pressure, took a lot of blood thinners and had a surgery with opened up an artery near my heart and probably caused a rush of blood to go to my head and cause the bleed. As I am likely to need more heart surgery in the future I think they just want to make sure all avenues are explored. Like you though I think I will never have a nice neat cause.

 

Am on half-term for the rest of this week, so will rest up before back to school next week (what a way to spend my week off!)

 

Gemma x 

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