Panic over further bleeds!!!

[Guest chelseagirl2]

Hello There

I am wanting to know if anyone else has experienced the same as me. I went to my Dr on thurs pm suffering from a bad headache and stiff neck. I was imediatly sent to a&e with a suspected 2nd bleed and was imediatly sent for a scan, this was INCONCLUSIVE, so I then had to go through the ordeal of having a lumberpuncture. This was at 10pm and they assurred me the results would be ack within 30 mins. They took 4 vials of spinal fluid (10 drops in each) and I was told to lay flat for 2 hours. No one came back to me until 5am when they said that they were waiting for the results of the 4th vial. I and my family spent all night in a state of panic, eventually ay approx 7.30am I was finally told it as all clear. I was sent home to rest, gradually as the day progressed I began to feel unwell and my neck became even stiffer and my headache was unbearable. At this point I was convinced that it was happening again and at 12 midnight I asked my husband to call an ambulance. Bearing in mind I never called an ambulance when I had my bleed and stayed at home this gives you an idea how much pain I was in. It turned out to be as they described it a benine headache, which in laymans terms would not kill me. Apparently I had suffered a lumberpuncture leak, where the spinal fluid had gone where it shouldnt. What I dont understand is why at any point did the medical staff not actually realises the shear panic and devistation this whole situation has caused me and my family.

I may as well has a fracture in my wrist for the amount of sensitivity me and my family were shown.

sorry to rant but I was really scared

xxxxx

[jess]

I have been to the drs on a few occasions with bad hdeadaches and neck not once have I been given a scan so I can't really comment I would of loved one sometimes just to check but they never did. Sorry I can't be more helpful. Jess,xxxx

How you were treated was bad though waiting till 5am.

[Karen]

Hi Kirsty,

Sorry to hear that you've had a scare and I hope that you're feeling better....

I've had two nasty scares......the first one was about a year after the SAH and I ended up being admitted to hospital by my GP. Unfortunately, I was admitted on a bank holiday weekend, so the hospital was ultra busy on that Friday (the nursing staff in A & E told me that a Friday is always their busiest day, as people realise that their GP surgery will be shut over the weekend) and they didn't scan me or give me a lumbar puncture that day. Then of course it was the weekend and the scanner operator didn't work and basically unless I could convince them that I was going to die there and then on the spot, they wouldn't call him or her in. Then there was bank holiday Monday .... so, I was told that they would do it on the Tuesday.....but they didn't.....suffice to say that I waited well over a week for a scan after my discharge. Like your scare, my MRI scan didn't show anything up....however, the physical pain/stuff afterwards, was similar to the original bleed and the fatigue was awful for a few weeks.

The last scare that I had was a few months ago and I just rode it out at home, laid flat and waited with phone in hand ..... luckily enough, it didn't get worse, but the last hospital experience that I had, definetely put me off and think that it caused me more stress then staying at home. Again, I had a couple of weeks of bad fatigue after that bout ....

[Shanti]

Hi Kirsty

So sorry you've had such a bad scare. I hope you're feeling a little better.

Its on stuff like this that this site is invaluable. Reading through Karen's response to you, we see that sometimes these scares do arise and it doesn't necessarily mean that its another SAH.

Try to rest if you can. I find that if my blood pressure goes up or I get overtired thats when symptoms like pre-SAH arise.

Hope it all settles down for you.

Big hug

Lesley xxx

[bogbrush]

Hi Kirsty

I think a few of us have had scares. Mine was 3 weeks post SAH and only one week after discharge from hospital. Although the headache was 24/7 for some weeks after SAH, I had a steadily increasing headache that felt as bad as the original event, although that one came on in seconds. My wife phoned NHS direct and when she explained my situation, they dispatched an ambulance straight away. The A&E doctors took it very seriously, unlike the first time, and consulted with the hospital where I was treated. After a being doped up with pain killers and a CT scan, I was released some 12 hours later after being told that the scan was clear and it was just one of those things. Due to a bed shortage, there were patients in the same ward as me who didn't have a bed and had to wait in chairs. I felt so guilty laying there on my bed and imagine their surprise when I just got up of the bed and walked off down the corridor. I felt like Lazarus! At least the scare was over, and the feeling that it may happen again did diminish over the following few weeks.

No one tells us what to expect and no one tells us the likelihood of it happening again. That's why sharing experiences here is so important.

Karen, I went into hospital (the first time) just as you came out after your scare ... August bank holiday 2006.

Regards

Keith

[Karen]

So you did Keith! ..... Think that I'd only just started up this website at that point too....and I had to spend my birthday in hospital.....

Lesley, as Keith has said, there have been a few of us that have had scares and we're still alive and kicking.... however, I would always say, that it's better to be safe than sorry and if in any doubt of what you are experiencing, call the Doc or take yourself off to A & E ..... it's better to feel a bit silly and have some peace of mind.

[Skippy]

Hey there

Me too Karen, my SAH was 24th August 2006!!!

I ended up back in hospital - QMC Nottingham (I was treated in Derriford, Plymouth) 3 weeks after my SAH - I went to the Docs (my parents took me) and they rang the hospital to inform them I was coming in - my parents took me to the hospital, we had to find our own wheel chair and were given directions to the ward I needed to be on - horrible place. I was scanned - eventually - and was taken off the codeine which they said was causing the analgesic headache and then put me on tramadol - which is just as bad - basically I don't touch codeine or anything with it in. I couldn't even lift my head off the pillow my neck was so stiff and the pain in my head was so terrible. Some nurse told me to sit up - I told her I couldn't - she said try - so I had to explain that no, it wasn't because I didn't want to it was because I COULDN'T - she didn't even look at my notes. Needless to say I was crying for Paul to come and get me out of there - the place and the care I received were terrible. Bring back the Matron - thats what I say!!

Away home now anyway.

TTFN

Sami xxx

[rampmama]

I too have spent hours in the hospital over repeat experiences and was poorly treated by staff. Last April I lost vision. I went to emergency and was given CTs, and many tests including a particle counter. It was horendous. Strapped to a machine, told not to move and the probe straped so tight it left a bruise and it took over an hour. My neurosurgeon was ready to admit me but wanted the stroke team to see me. They came and went adn were waiting for the rediologist to read my scan. My hubby and I waited from 3pm until 5:30 am before we were told that my results were ok'd at 4pm but due to shift change noone told us! We were making plans for who would take care of our kids while I recovered from surgery. And we also had a lengthy debate over coiling versus clipping. Turned out to be migraines and the advise I got from the doctor when I asked what I should do if I loose vision again... "Pull your car over."

[Guest pam]

Hi Kirsty

I am sorry to hear what you have been through and hope you are feeling better and to everyone else too - I have been reading all the replies on this

post and there are some poor hospital experiences.

I am also posting because yesterday I had an appointment with my neurosurgeon. I had been referred back to my neurosurgeon by my GP as I had had a return of the symptoms (eye pain, vision probs, tiredness, feeling dizzy and some facial nerve prob) I had had immediately before the diagnosis of multiple aneurysms a few years ago. I had some of these symptoms post surgery too, but they were slightly different to what I experienced pre diagnosis and to what I am experiencing now, what I experience now is exactly the same as what I experienced pre diagnosis and these symptoms dissapeared after surgery to return recently

My neurosurgeon basically told me that aneurysms do not give symptoms until they rupture and it was quite evident to him that I was not suffering a rupture (good job as I waited three weeks for the appt) He told me my scan a year ago was fine and I didnt need another one now. I pointed out to him that I did have four untreated anuerysms (I have 7 in total three have been coiled) and since the symptoms I have now, matched what I had before they treated three other aneurysms, I was concerned . he said, yes but the four untreated are very tiny (he didnt seem to think they could grow). He then said he thought I was suffering from anxiety and that was the problem and that any symptoms I had a few years ago before diagnosis would have not been through aneurysms, it was just a coincidence!

Well yes I can get anxious over things, but I am pretty sure some people have had symptoms prior to a rupture /or prior to the diagnosis of unruptured aneurysms. Am I right, anyone had this experience?

Thanks

Pam

[Janet]

Hi Pam

My rupture wasn't the classic sledge hammer headache type. I had intense pain behind my left eye on and off for about six weeks and put it down to stress even though the drilling type pain was so intense it would wake me up.

Then about ten days before the surgery I became really ill and nauseauos (spelling) and could bearly move. The drilling pain behind my eye had change to severe pain and was there constantly. I spent nearly a week in my local hospital waiting for all my scans etc. to be looked at by visiting Neurologist.

I finally had someone come over from Walton on the Thursday who held the scans upyo the light and stated that he couldn't see anything obvious but would take them back to Walton to be looked at more closely thank god he did.

As Walton phoned my local hospital the Friday afternoon demanded I be put on flat bed rest immediately and I was transferred over within a matter of hours.

The oncall Neurosurgeon visited me the Friday evening and his words of comfort were if you feel like someone has taken a sledgehammer to your head we'll rush you in to theatre tonight if not you'll be seen in the morning.

I made it til about 8.30 the next morning before I felt my head exploding and the pain was that bad I was actually screaming. Thankfully it eased off slighty and Morris turned up and my Neurosurgeon he gave us literally no choice but for an immediate craniotomy as he didn't think I would make it to the Monday for the less invasive coiling procedure.

I have since learnt that I has several small bleeds in the 10 days leading upto the day they operated with a slighty larger bleed on the morning of surgery.

I feel very blessed to be alive but like a lot of others have had scares and returned to hospital a couple of times.

Like you I visited my Doctor in March because the pain I get is quite severe and constant. I did have another scan and thakfully everything is fine.

I asked why the pain I feel is quite severe and was told that Neurological pain following any brain procedure can present at any time and that some people never suffer any at all others can go for years without any and then suddenly start to suffer neurlogical pain.

I don't know how helpful that is as I do not have the worry of untreated Anuerysms to contend with but if you really feel something is wrong insist that your G.P sends you for a scan. I t was my G.p who arranged mine not the Hospital as I had been discharged in March last year just 4 months after my operation.

Janet x

[Shanti]

Hi Pam, Janet, Rampmama, Sami et al

I'm lost for words at times reading some of the stuff on here.

Big hugs

Lesley xxx

[Vivien]

I was wondering how long it takes to stop worrying that something is going to go wrong? I seem to have times when every little pain, twinge, dizzy spell makes me think that I am going to have another SAH or that the coils have settled and there is a leak.

Other times I am just happy to be walking and talking

[Karen]

Hi Vivien,

You're still very early into recovery ....

It's taken me the best part of nearly 3 years to get to the stage of not worrying and feeling anxious over further bleeds ..... for me, being told that the aneurysm hadn't been totally occluded, was a huge set back, but as time passes, you do feel more reassured that nothing has happened .... I still get the weird tweaks in my head and when I overdo things, the bad head, eye pain and the fatigue will kick in .... However, I'm kind of at the stage now, where I want to move forward and know that there's absolutely nothing that I can if I did have another bleed..... I can either spend all of my time worrying about it, feeling frightened and not doing anything with my life or trying to make the most of what I have today ..... It's taken a while to get here, but I feel a lot happier now ....

[tennissmithy]

I'm still the same Vivien and i'm 19 months on, when I get certain pains I think is it....

I think it will take a while to get overe what if stage

Laura

xxx

[Guest Shiree]

I sure can relate!!!

I got to the stage where i was headache free (yay!) but alas it only lasted for about 10 days. Now I have been referred back to have another scan to see whats going on. I hate to think how long I will have to wait for an appointment.....

I worry all the time and have trouble not not biting peoples heads off when they tell me I am lucky......

[tennissmithy]

Shiree,

I still get a lot of headaches and was sent for a further scan, It revealed that everything was ok and I got told it was one of those things that could happen after SAH and to keep trying different remedies until i found one that worked. I'm still trying 8 months on!!! Lets hope you get more concrete news and then that might help me too!!

Laura

xx

[Guest Shiree]

Hiya Laura

Do you get that full head sort of tipsy feeling as well?

It is horrible. I will let you know how I get on but, like I said it could take ages to get an appointment.

The health system over here falls a bit short.....

"hugs"

Shiree

[Shanti]

Hi Shiree/Laura

I've been getting that tipsy (dizzy) feeling again just lately. Especially when I lay my head down on the pillow or first thing in the morning, I sit on the edge of the bed until it passes a little before I get up.

Personally I think perhaps its something to do with my blood pressure dropping to its pre SAH rate of 90:60. When I was having the SAH it shot up to 125/90 which was a lot for me. A few weeks back my GP said it had dropped to 105/80 (or something like that).

Shiree I noticed on another post you'd said you had low blood pressure pre SAH. Perhaps it might be a good idea to ask your GP to check your BP for you? I also think its a good idea to always check out any new symptoms with your GP. If nothing else, it will put your mind at rest.

Big hugs

Lesley xxx

[Guest Shiree]

Hi Lesley

Yep I have had regular check ups with GP and blood pressure has been fine. Do you think maybe recovery comes in waves as in feeling good for a while, then a bad patch etc?

"hugs"

Shiree