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diane rhedey

no aneurysm

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Hello first of all its so good to be able to share all your stories thanks for having me. There is a question thats been bothering me for some time and until now I haven't had anyone to ask. In most of the articles I've read the majority of SAH's are caused by aneurysms but they couldn't find the cause of mine even after 3 seperate angiograms, and untold ct scans they put the second bleed down to a weakness caused after the 2nd angiogram and vomiting when my gall bladder got inflamed, at the time they thought I'd require further surgery thinking the shunt wouldn't be able to cope but thankfully it did, it's all pretty hairy as I was not really with it in those early days, Has anyone had the same or similar that can point me in the right direction and set my mind at rest. ie could it happen again?? as there wasn't anything to fix although I do have a nice hole in the side of my skull where the drain was and this bumpy thing in the back of my head that drains into my tummy (shunt) I'm amazed at technology today. Thanks for listening.

Diane xx

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Hi there

There is at least one person on here who had an SAH without the anuerysm that I'm sure of and that's Sue. She's not on much these days but she's lovely woman and very kind natured. There was a thread somewhere on this site for those who didn't have anuerysms, maybe you can look through it, it might be useful.

Sorry couldn't be of any other use

Sami xxx

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Guest Ember

Hi Diane, and everyone! I've been away since about this time last year, but as my 1 year anniversary of my SAH just passed, I thought I'd stop in and say hello!

My SAH was also non-aneurysmal, and non-traumatic. I'm a nurse and have done a bunch of research on this stuff since my bleed. As far as I can tell, about 10% of SAH are not caused by trauma or aneurysms.

For those of in that 10%, we can have the same complications at the beginning as people who had aneurysms. We can have re-bleeding and vasospasms and have the same set of tests done, like CT scans, MRI, MRA, and angiograms. Some of us have shunts like you did, some of us have surgery to remove some of the blood, etc. Our initial recovery is also pretty similar, with headaches and fatigue and sensitivity to sound and light, and short term memory issues being pretty common.

The big differences are that we don't have coiling and clipping procedures to endure and recover from, we tend to recover more quickly, and we don't have to worry about having another bleed. If there is no genetic malformation going on, and no aneurysm, people who have SAH don't usually have another one.

Our recovery seems to take an average of 6-12 months, and often much quicker. For my part, I was down for about 4 months, and back to work full time at the end of that period. I would say that I FELT back to 100% by my first anniversary, which was October 1st. I still have occassional fatigue, mostly related to travel, and I am more prone to headaches than I was before. For instance, I have never been prone to tension headaches, and now I get them more often.

Hope that helps! This site was the only patient support I found after my bleed and it helped me so much. Even though I didn't post a lot, reading about other people's experience gave me a place to focus my energy and calm down a bit. :)

Love!

Ember

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Guest tekemeee

I also had a non-aneurysm SAH - I was in the hospital for 23 days in NICU - I had vasospasms the entire time - even the day they let me go home I was having them. I have posted my story on here - but I will be glad to go into any details you want to know about. My SAH was July 26, 2003.

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My husband suffered an sah 7 weeks ago. He had 2 angiograms which both showed negative for an aneurysm.

Would the blood that was in his brain hide the anyeurysm? My thought is if it was there they must have seen it. They stated after the first angiogram that they were 97% sure he did not have one. After the second on they said they were 99% sure.

It has been a tough time for him and I am so glad that I found this site.

Thank you all for sharing your information.

Cal

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Hi Cal,

We have a few guys on this website that have had a SAH, where an aneurysm hasn't been detected. From the medical papers that I've read, a SAH that hasn't been caused by an aneurysm has a pretty good recovery.

However, we all suffer the same symptoms of a brain haemorrhage and the recovery process is pretty much the same. I would imagine that if the hospital has carried out two angiograms and they haven't found an aneurysm, then they must be pretty sure .....

Hopefully, the guys that have also had a non-aneurysm SAH, will respond to you as well....

Good luck and anything that you need to ask, you know where we are...

Best wishes to you both....xx

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Hi-I had the same scenario and it makes you wonder because you sort of think there must be something to see that caused this bleed.

The Angio utilises a radio opaque dye so that it should be apparent if there was an aneurism.

The blood may well be around the brain from the prior bleed, but given that the weakness has theoretically healed, then the blood in the arteries is sealed off from that which is still dissipating in the subarachnoid or other intracranial space .

The contrast medium therefore could only appear in the blood surrounding the brain if there was still an haemorrhage.

Hope this makes sense!

Best wishes

Andy P

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Hi Andy,

I am a bit confused (since this is all new to us).

If there was an aneurysm then it should have shown up on the angio correct?

Thanks so much for your reponse and I hope you are doing well.

XXX Cal :)

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Hi..yes it should have shown up which is why 2 angios are more often done for reassurance-The chances of having another bleed under these circumstances i was told are much less than for the average man on the street.

No aneurism is pobably the best outcome you could hope for..albeit something of a mystery!

Best wishes

Andy P

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Andy, :D

Thank you so much for your response.

Jim woke up today for the first time in 7 weeks without a headache. YAHOO!!!!

Are you back to work and feeling like you did before your SAH?

Jim's work is physical he is a head electrician at a rehab hospital and he is unsure if he will ever be able to do the things he did before. I am sure for each peron it is different but he wanted me to ask you how you have coped.

XXX OOO

Cal

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Hi Cal-I was at work 3months after the bleed...too soon!!

Don't let Jim underestimate things -but each to his own.

Listen to your body.

Gradually build up fitness-that can be difficult due to the overwhelming tiredness that it frequently leaves you with!

I chuckled at Jims job title-I thought of someone actually wiring up heads!!

I have coped with help from my wife,family and friends.

This site is excellent and you will find help here from many of the members if you need it.

Someone is sure to have experienced what Jim is going through.

For me the mental issues are more difficult-and getting your head around what nearly happened is a huge issue and for me a fairly constant reminder.

That said-life is for living and it will no doubt cause Jim to re-examine a lot of things in life.

Best wishes

Andy P

x

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Guest sara

Hi everyone,

This is my first time on and it's great to read about my expereiences in your emails, I don't feel quite so odd now. I had my SAH just before Xmas and again this was with no identifiable aneurysm. I have recovered really well with some minimal tiredness but I am bothered by 'headaches'. These are a pain in the head just a little lower than the scalp that come and go for minutes at a time...does anyone else experience these?

Sarah

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Hi Sarah and welcome

Strange pains and twinges in the head are very common after SAH, aneurysm or not. They are not necessarily related to the site of the bleed. I had them in the early months and although I don't really get much pain anymore, I still have the odd twinge, mainly above or behind my right eye. You are still in the early stages of your recovery and things will improve with time.

Regards

Keith

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Welcome Sara,

I agree with Keith.......I'm at 2.6 years and still experience twinges and weird head pain ..... you sort of learn to live with it over time ..... but it can take a while to realise that these aches and pains normally go away, but they can be pretty scary for quite a while.

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Guest sara

Thank you so much for reply, to know that these things are 'normal' is very reassuring. It is such a pity that there is no system to get such information from the health service when you have a SAH. I was discharged before Xmas and have no further appointments due and so no support. Thank you so much for this site!

Sarah

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Hi Sara,

Well, I hope that you will continue to ask us questions and we'll do our best to answer them, by using our own recovery experiences.

Yes, it's a shame that there's not enough support and info once you're discharged from hospital. Many of us have found that and spent many hours on the internet, trying to find out, if what we're experiencing is actually normal after a SAH. I've often frightened myself silly, with some of the stuff that I've read. I think that just having some reassurance, that what's happening to you, during recovery, is actually "normal" for most SAH'ers is a comfort.

Hopefully, you have a good GP, so never hesitate to see them if you're having problems or you're worried about anything. I would imagine that your GP would probably want to keep an eye on you for a little while?

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Guest sara

H again,

I do have a very good GP but he is off ill himself at the moment! I hope he will be back soon. My complications are that I also have a very rare auto-immune disease which effects the arteries so I am not really a straightforward case, it maybe that the drugs I have to take for that have caused the SAH. I attend a very good rheumo clinic but again I find they are very good at treating my disease but hopeless at understanding the emotional side of what I have to cope with. I wish the health service in general would take into account the benefits of a good emotional state in recovery.

Sarah

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Hi Sara,

Well, if you have a good GP, then that's half the battle. I had to find a 2nd GP (long story), but the Doc that I have now, has been absolutely great and has also tested me for other bits and pieces and has helped considerably with hospital referrals for certain tests.

The main thing is, that I'm able to talk to him about any of my concerns and I know that he'll take me seriously ..... The emotional side of dealing with a SAH is pretty hard and I've probably found that to be worse than the physical stuff. If you're feeling low and think that you need some counselling to come to terms with things, then make an appointment with your GP when he's back.... don't leave it, as it can take time....

Post traumatic stress and depression, post SAH is fairly common and I've had my fair share of depression and probably a bit of post traumatic stress too ..... unfortunately, I sat on it, for far too long ..... so, if you're feeling low, then seek help and don't battle it alone ...

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Hello and a very Happy New Year, I hope 2008 will be a good year for you all. This is such a wonderful site, full of very valuable information I know I have benifited so much from your experiences thank you.

I'ts been 10 months for me now and everything is going well, My biggest lesson so far has been to accept and be happy doing what I can today rather than what I could before SAH.

Make every day count and enjoy it thats my motto.

I hope you all have a great day and you keep on getting better.

lots of love from Australia.

Diane

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