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How do you know Drs haven't missed an aneurysm?


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I'm worrying myself round in circles....if you have had a SAH with no cause found, how do you know the drs haven't missed an aneurysm? Could one have been hidden by all the blood? I have had an angiogram, several CT scans and a CT with contrast...but nothing seen. Somehow can't stop worrying though.........:confused:

Julie x

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Hi,

I had the same. A non aneurysmal SAH (NASAH). Unknown etiology. Cannot find the source of the bleed. I had CT, MRI/MRA and three angiograms.

The 1st was when I entered to hospital and they found the bleed. Came up negative for a source. So I had to stay in ICU for 9 days until they did the second. The 2nd was 8 days later. The 3rd was 6 weeks after I went home. All negative.

My third was done to ensure they did not miss anything. I was told I had a perimesencephalic SAH.

How many angiograms did you have? You should talk to your doctor for peace of mind. I am going to see mine this Thurs and I am 6 months out. He is 5 hours away but I need to see him now that I am in a better frame of mind.

iola

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Hi Iola,

I had one angiogram, I think it was the morning after I was admitted to HDU. The CT was done in A and E, another the day after I was admitted and then about a week after I had the bleed. They said there was a heavy blood load, but couldn't see a source for the bleed.

I think I'm just frightened the blood could have been hiding something, or it was an aneurysm that burst, so another one could form again ? Don't even know if that is possible.

It's so hard to remember what I was told in hospital because I wasn't really with it. The hospital said they don't follow up NASAH cases because there isn't anything for the neurosurgeons to fix. I had a follow up with the nurse practitioner, but felt like I was wasting her time and was still quite muddled about things.

Wish I could stop worrying!

Julie x

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In view of you being so worried go and see your GP, he will have a full hospital report and will be able to put your mind at rest.

Because of the number of scans you had after your bleed I would be pretty certain that nothing was found.

You really need to see a doctor because all this worrying may impede your recovery and the stress will certainly not help.

If you cannot get over this fear then it may be prudent to ask to be referred for counselling. Others on here have had it and found it to be a big help.

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Hi Julie,

Take the advice and call and make an appt to see whomever you need to see. When I was admitted they thought the same thing. Because of the pattern of the blood and the thunderclap headache they thought it was a ruptured aneurysm. One of the reasons they kept me in ICU to pay close attention to me and why I had a second and third angio.

It is so very scary and I understand your concern. I wonder myself "why and where and how" all the time.

Do yourself a huge favor and push to find the results of your tests. Write down your questions so you are armed with the information you need when you go in. That is what I am doing.

I had questions after my last angio but, like you, I was kinda out of it so I rely on my husband to tell me and now I want to hear is first hand.

Honestly, it will help your mental state, which I completely understand. I am right there with you. I have cried buckets and prayed for faith this will never happen again. It changes you.

Call and make your appt and feel better about the outcome of your journey.

iola

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I agree with all the advice you have been given so far. I too had a perimesencephalic SAH, my surgeon found it in a rare area but as far as they were concerned it stopped bleeding and that was the main thing. Sometimes you just have to let it go. I think it is hard when there are no answers, but I am going with "I am very lucky it was a NASAH". Done and over with.

I only had 1 angio, several CT scans & several MRI's. I get checked every year and this year should be my last MRI with and without contrast for a small brain tumor they found.

Sometimes there are no answers and I really do settle for just being really, really lucky at this point even with all the daily stuff that is not right with me. It took me awhile to get here but at least a year of not really even comprehending the whole thing.

MaryB

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Hi Julie,

I had SAH and was very ill and at first I couldn't fathom why I was alive, so I used to plan my funeral (Silly Win).

I found this website and we have all overcome our fears and whatever troubles us.

See Doc if you think he can put your mind at ease, stress can harm us so less stress is better for you.

I was told on here we are as likely to have another anni as others that haven't had one, does that make sense?

Life is good Julie xx

Be happy and smile and see Doc to put your mind at ease xx

Love

WinB143 xx xx No Stress !! xx

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Thank you lovely people, you are all so kind and reassuring :-D

My GP doesn't have full reports of the CTs/ Angio's etc and doesn't even have full discharge info. When I go to the surgery they look terrified, which just makes me feel more scared! My husband has helped me write my questions down in an email and we have sent them to the Consultant at the hospital where I was treated and asked for an appointment. Hoping he will be able to explain/ put my mind at rest.

I spoke to a lovely doctor I know who is a friend. She said the only really important thing is that I know what to do/ where to go if I feel the same symptoms again, but that it is really unlikely no matter caused my SAH that it will happen again. I remember not wanting to cause a fuss when this first happened and thinking 'how bad can a headache be?'. I suppose we all know the answer to that now.

Its just quite hard to look towards the future when something has threatened it. I feel very lucky to be here, but quite scared too.

Am off to do some lovely relaxation exercises at the leisure centre in a minute - so I am listening to you Win and trying to relax!

Thank you everyone!

Julie xx

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Julie, as time passes, you will become more confident in yourself and your body too. What you're feeling is pretty much normal after such a scary experience....it doesn't take months, it will probably take years for you to feel confident again and that nothing is going to happen again. You will get there.....honestly ... come back and see me in a couple of years....:wink:

Sometimes there isn't an answer and you just have to put your trust in the medics.....I felt exactly the same as you do now.

I haven't known anybody on this site that has had another SAH, whether it's non-aneurysm or not ... that's 7 years so far and quite a few hundred members later....

You are entitled (I think) to read your notes that are held with your GP.

You should also be able to ask for a copy of your scans? .... I had to pay for mine, they were on a DVD and I could see exactly what they could see.

We do have quite a few members from the USA that pay for private medical insurance and from what I can see, they tend to have far more information given to them, more tests and more time given, than we do here with the NHS, but that would probably be the case if you were paying privately for health care, as our NHS system just isn't geared up for it and detailed information is limited as is time with a Doc.

It is very hard to look to the future and plan, but please don't do what I've done and waste too many years thinking about the what if's, as you won't get that time back....and the "what if's", haven't happened to me .... well, so far.

I would advise that you go and get the information that you need .... do what you can to put your mind at ease and don't ever be put off with asking any questions that you need to ask ... you're the most important person in this equation ... Docs get paid to do a job.

I learnt that there aren't any guarantees with this life ... it took me a long time to come to terms with that and I wasted too much time worrying. However, it is natural to be scared and I was one scared person for a very long time, but you will feel better and more confident that your body isn't going to let you down again and you will find some peace.

Wishing you well lovely ....xx

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Julie,

I like the idea of sending an email or writing your questions down and so does my GP! I make a TYPED list of maybe 10 things that are bothering me and hand them to the nurse to give him before I see him. He loves it and I do to as I am not wasting my precious appointment time trying to explain something not important, or I cannot find the right words or I am just not "feeling it" that day or something he can just say "You will have to live with that issue" etc.

This dose lead to more of a quality appointment time for both of us. Plus if I make a list and keep adding to it I tend to keep repeating myself! LOL. Imagine that!

Maryb

PS he also has a written copy for his record of my worries and concerns for the next visit or just to have in my permanent record.

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Julie,

It REALLY helped me to read some of the medical stats on NASAH. It put my mind at ease to know that it is very rare for it reoccur. It would be more likely that you have a different obscure thing happen to you. I also got my scans and looked at them several different times trying to find an answer. No, there wasn't one. However, feeling vulnerable is so common no matter what the statistics say. Sometimes it is just good to talk about it with others that know a bit about it. The general population (including GPs sometimes as they are generalists) seem so scared of us and that makes us even more scared so it gets into this cycle.

I still get this weird feeling if the back of my head or neck hurts at all. Every time...and I'm 2years post. Then I 'check' myself and challenge the feeling. Then I'm OK until another little tingle back there reminds me.

~Kris

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  • 2 months later...
  • 4 weeks later...

Hiya I've not had any reason given by neuro surgery but they now think it could be reversible cerebral vaso constriction syndrome (RCVS). I don't know any more but apparently it's becoming increasingly recognised as a cause of NASAH. There are some studies online and my symptoms fit the picture. It may give some answers or rule another cause out?!

Kate x

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  • 5 months later...

This is way after your discussion but...

I had an idiopathic NASAH which basically means they have no idea why it happened. A friend of mine said that idiopathic is short for " any idiot can come up with a reason because nobody else has a better one". At least I got a good laugh out of that. I have found that a good laugh actually relieves my headache for a few hours.

Kns

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I always said smile and sing it keeps us going !!

 

Good for you Kns  keep going.

 

Best Wishes

 

Winb143  xx I always thought idiopathic looked like the other word  lol

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  • 2 weeks later...

Hi, I was diagnosed with RCVS too Kate. You are the only person I have come across with same.

I read that in a GP report following an MRI scan on discharge from hospital.

I was petrified there was something they had missed initially as I couldn't understand why I had given birth to my first child with none of this happening and yet days after my second child I was admitted to ICU with a bleed.

This is an old conversation so I guess you are more at ease with it now. It certainly seems that way for me 6 months post SAH x

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