Susan

Hi Jan

I had an MRA last Saturday to scan my unruptured 2mm aneurysm and I see my neurosurgeon for the results on 13 September. I was told that if mine hasn't changed this time I'll be scanned again next year, then in 2 years and then in 3 years. I really feel for you - I'm just hoping mine hasn't changed and I have no decisions to make.

If I had to make a decision of some kind I would probably ask my neurosurgeon what he would do if it was in his head. I suppose it also depends on how much you fear a rebleed and how much having an unruptured aneurysm is on your mind. I haven't honestly worried about mine since I last saw my neurosurgeon 6 months ago.

Personally if I was given the odds you've been given of a rupture against the odds of a stroke during the operation I would be opting for further monitoring for myself.

At least your aneurysm is stable - that has to be good news. Take care. xx

Hi Subhem63

Were you at the RVI Newcastle? I had a non-aneurysmal SAH 8/1/2016, so needed no surgery, and had a follow up consultation at the RVI neurovascular clinic 2 months later. I have an unruptured aneurysm they are going to monitor and have an MRA appointment at the end of August with a follow up consultation in September.

I got the letter for the follow up September appointment way back in March but only received the letter for the actual MRA appointment this month.

I 've found that the neurosurgeon's secretary has always been very helpful if I've had any queries about appointments, DVLA stuff etc.

Hope you are recovering well.

X

Hi Sherry

To echo what Chris says, I know that it is difficult to accept that something will not happen again when no-one can give you a reason for it happening in the first place, but I think there is some comfort to be found in the statistics.

I had my NASAH back in January this year and initially also did loads of research online looking at medical studies of the long term outcomes of SAH patients. The chance of a rebleed for NASAH appears to be very low and even lower if you had a perimesencephalic bleed - I only managed to find one case of a recurrence of PM-NASAH in a patient, and the medical journal cited it as a unique case.

I know I read on your other post that you have trouble getting to sleep. If you are going to do online research then do it early in the day - never near to bedtime. I know from experience that it is not conducive to a good night's sleep!

Take care and try not to worry. X

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

Gilly, I love that your first reaction to being told that you had a SAH was that you were pleased that you hadn't called an ambulance for no reason.

I think it was a similar type of thinking - not wanting to cause a fuss, be a time waster - that stopped me calling an ambulance at the outset, even though I knew immediately and instinctively that something had badly gone wrong in my head!

When I saw my GP recently she showed me my medical notes from hospital regarding my NASAH which had a note on them saying 'good one for med students?' She asked me if I would be willing to talk to med students about my symptoms some time later in the year. I agreed so I thought I would try and list them here in as much detail as I could remember. Sorry if they go on a bit!

Day 1. 1am. Sudden severe pain over whole head and down back of neck. Happened in an instant. Totally shocking experience. Soon after my whole neck went rigid for a short time.

Within~1hr. Pain localised towards the back of head (and remained for ~ 5 days). Not as severe as the sudden onset but still 'the worst headache of my life'.

After~2hrs. Vomiting, then retching every hr for about 6 hrs.

After~6hrs. Electric shock sensations (that made me squeal) up the back of my neck on retching, pooping, sitting, standing or walking.

Days 2 & 3. Pain was a constant at the back of head, but also intermittent pain behind eyes and electric shock sensations across cheekbones and temples. (Still at home in bed!)

Day 4. 7 hrs in A&E (1am to 8am). Generally headachy and light sensitive, but feeling relatively better in spite of lying stretched out across hard waiting room chairs with my son's coat over my eyes. Went in for blood tests due to accidental therapeutic overdose of paracetamol in treating above headache!

They also gave me a CT scan which was read as negative for a bleed. (8 weeks later the lovely neurosurgeon showed me the CT scan was actually positive.) Home and back to bed to sleep it all off.

Day 5. Headache worse, very stiff neck, high temperature. GP sent me back to A&E with suspected viral meningitis for a lumbar puncture. Went prepared with my own pillow this time! (Would wait 26 hrs for the LP as it was one of the junior doctors' strike days - still support them though.)

Day 6. Woke up after a night on the A&E observation ward (they finally gave me a bed) to find my temperature lowered and headache practically gone! Felt like a fraud. Wondered if I should go home.

As the day wore on I realised there was still something wrong as I was so so tired and my head felt too heavy for my neck. Early that evening I got the LP which confirmed a bleed and was finally transferred to the neurosurgical ward.

Hi Daffodil

I found BTG quite early on in my recovery and have found it very helpful, but this is my first post as I can very much relate to this topic.

I had my NASAH on 8 Jan 2016 and was diagnosed by lumbar puncture on day 6. 12 weeks on I feel I have come through the experience relatively unscathed. I am still a little fatigued with occasional headaches/neck pain and unremitting insomnia but I do feel some semblance of normality returning.

I have previously suffered with recurrent episodes of depression which I have managed to keep at bay for the last 2 years with exercise. When I left hospital post SAH with no physical stamina I did fear the depression would return. This has not been the case. I still get low and emotional but have found that the negative self talk that has plagued me for years, fuelling the depression, has quietened.

Since experiencing the SAH I have felt compelled to be nice to myself! I may even have metamorphosized into a 'glass half full' person. In the last 12 weeks I have had many moments of exhilaration at the most seemingly insignificant of things. It has been odd to read other posts elsewhere from members grieving for their former selves whilst I just hope to hang on to the new me.

I do understand that other experiences of SAH have been more traumatic and disabling than mine. I too may have some of that in store for me as they did find a 2mm unruptured aneurysm at the origin of my right opthalmic artery. I am due an MRA in September to check on the aneurysm. The lovely neurosurgeon told me not to worry about it, so for now I'm not.