What's the trauma? Help needed for Project on SAH

[Karen]

The article below was submitted for the homepage, but I think that it's probably more appropriate in the forum and you can respond to Stefanie here, if you wish.

Hi all of you!

I am very, very pleased by this page, it is great to have a means of information for people who have suffered a SAH, because, as you might have experienced as well, they are often discharged home and left to themselves with no information about what's going to come towards them.

I am a psychologist working for Durham University and we are currently working on a project that aims at raising some awareness of the problems patients like you experience after discharge and I am happy to pass this web address onto our participants.

But I would need your help as well. We want to design a questionnaire that asks our patients what the most traumatic experience was about their SAH and so we need to get some ideas first. Please, would you help me out and let me know what you think the most traumatic experience was? Please be sure that your information is going to be treated confidentially, and will only be used to give me some ideas.

Stefanie.Baisch@uni-konstanz.de

Thank you ever so much for your help! I wish you all the best!

Stefanie Baisch

[Karen]

Hi Stefanie,

The lack of aftercare post SAH, is something that we've probably all experienced here. Once the hospital have "fixed" your head, you tend to feel abandoned once you've come home and left in limbo and not really knowing what to expect.

Here are some of the things that I found the most traumatic once I came home....

Scarey head pain and bad headaches and the thought of "am I going to have another brain haemorrhage"

The first few times when I was left by myself in the house and my lack of confidence.

The first time that I went out by myself and tried to shop in a supermarket. The noise, the crowds and the visual stimulation was all too much.

Am I going to experience any more seizures and are my hands tremoring because I'm about to have a seizure?

[Skippy]

Hi Stefanie

The most traumatic experience for me?

Wow! Waking up and knowing that I shouldn’t have been alive for one.

The main thing was three weeks later sinking into depression mixed with shock as I’d been given no information on recovery – either what it involved, what to expect, what to stay clear of etc and thinking that I was never going to be me again. I was referred to a counsellor within three months of my SAH, which apparently is not usual – but as I was so depressed and scared my GP referred me.

My counsellor was great and helped me come to terms with the fact that the way I was feeling was perfectly normal and that I was in fact suffering from post Traumatic Stress Syndrome. Once I’d realised that and come to terms with it, my recovery went from strength to strength. I think everyone who suffers from this should be given counselling straight away.

Like, Karen there is the lack of confidence and constant fear that it'll happen again.

Hope this helps

Sami

[Annie]

Hi Stephanie,

For me and my husband, there were many traumatic things, but I guess among the worst were:

Having to CONVINCE the emergency room attendents to do a scan.

Bad reactions to meds including body rash and severe nausea (which of course made you wonder if you were having another SAH)

Complete cutoff from access to a neurosurgeon to answer questions after coming home.

Lack of communication between the hospital and my GP.

Extreme and terrifying leg pain (causing collapse) for days after returning home. This led to an ultrasound check, and then a full body MRI, when all it was was the disipation of blood throughout the spinal cord. But no one had said that might be part of the recovery period.

In fact, no description at all of what is to be expected in recovery. I experienced pain, illness, dizziness, headache, shakiness, extreme fatigue, light and sound intonlerance, reactions to meds, depression, and fear. I was told I would have a long and happy life, and be completely recovered within 6 months. I am now a year and a half post SAH and still dealing with fatigue and memory issues. I have since read, due to my own research, that the non-aneurysm SAH such as mine can take as long as 6 YEARS for full recovery.

A particular lack of concern for the non aneurysm SAH patient in follow up.

Thank you for your work. There is a monumental lack of follow up care and information for the SAH sufferer. I am in the states, and the only online care I found was this website in the UK. Every SAH patient and their caregiver should have access to a network of care post SAH. Those of us on this site have also been frustrated by the enormous variety and conflicts in post SAH advice from doctors everywhere. I still do not know what painkillers I should or should not be taking. Even with aspirin or ibuprophen there are those that say never take it, or sure yes, take it.

I hope this entry is useful to you.

Annie

[Guest Cindy]

I too had no info on after surgery home care. I was scared and so was everyone who tried to help me at home. I am a non aneurysm SAH patient, who has learned more on this site than from my own doctor. The most traumatic experience for me was a couple of hours after being discharged from hospital, I started vomiting and got another very very bad headache and had to go back to the ER.

I too am in constant fear of this happening again.

[Annie]

Welcome Cindy! It's probably a club you're not happy to join, but it's a fine group here.

xo,

Annie

[Guest Portia del Carmen]

What a relief for someone actually to care how it feels once we're sent home!

I've already sent Stefanie an email re. the perspectives I might be able to offer, which having had 2 SAH's (May 2003 and Jan/Feb 2007) with different forms of treatment (coiling and clipping) and different types of care (NHS and private) I think are quite varied!

My own traumas from today's point of view seem to be...

(1) misdiagnosis. Food poisoning from A&E in 2003 when to anyone having done first aid I had a head/brain problem. Discharged home. Ear infection in 2007 - I had few symptoms then, and am one of the few people who can say they had a SAH without the worst headache of your life... but when the vasospasm kicked in several days later, being told I'd "got a viral problem" or "you know, just had a stroke" from the cardiologist (?) I was admitted under in my local hospital, when I clearly knew more about head/brain "accident" treatment than they did, this was worrying.

(2) mistreatment in local/ non-specialist hospitals... you have to get up and around... (I shoudl have been lying flat) your blood pressure has to be lower than low (it has to be between certain levels) and you don't really need to know what the problem might be (actually, I do...) before being sent home before they'd even received the crucial lumbar puncture results...

(3) first time round, being given very broad-band and cautious advice over what to do/ not do - don't lift anything heavy/ tip your head upside down to dry your hair, etc... all unnecessary.

Much better second time round, despite my GP diagnosing ear infection(!) I was lucky enough to be treated at the National Hospital by the great Neil Kitchen - they also have a dedicated SAH nurse who will come and see you every day if necessary, repeat and amplify advice/medical opinion, and is at the end of the phone/email if necessary - very useful.

My recovery both times has not been seen to be "normal" - but I can certainly feel the various other problems emotionally that everyone else has had, just to a different degree. I never forget how lucky I am to (a) be alive and ( be better than I ought to be if normal - but that doesn't make life easy or back to normal.

Best of all the after-care treatment - my GP surgery don't really care - visited the other day for travel injections and had to ask the GP if he'd read the obvious alert (which I had seen and read) on his computer screen about my recent events - he hadn't. That probably sums it all up. I wonder if he'd have read it if I'd gone in complaining of a headache?