Leo

Ta Donna. I must admit I was slightly unnerved at first and it took the whole of yesterday evening to digest it but then I realised that really I am just in the same position I was in last year this time only now they actually know what to look for and where to look now. So you are right, that's progress! Thanks for the support, L x

Hi Everyone, I finally managed to see my neurosurgeon yesterday exactly 8 weeks after my angiogram for the results. I could have seen one of his registrars earlier but considering the conflicting information I was given at the time of the angiogram I decided not to (see my earlier post). So the thing is this. Apparently an infundibulum is a abnormally shaped blood vessel. Mine is on the carotid artery on the left side of my brain. It is a funnel shaped vessel which on its own isn't dangerous. So the neuro-radiologist was right in telling me not to worry about it and the registrar was incorrect in telling me that it could change and grow into an aneurysm. HOWEVER, behind the infundibulum the angiogram revealed a small aneurysm (1.5mm) which the previous CT scans missed. My neurosurgeon said it will probably be monitored on an annual basis by angiogram as the infundibulum makes it impossible to see with the less intrusive CT scan. Although the angiogram didn't hurt it was not a pleasant experience and not one I'm looking forward to repeating but needs must and all that! Hope you all have a great week, Leonie x

This is all very interesting. I only drink a cup of tea in the morning but maybe I'll start giving it a miss to see if it eases my headaches too ...

Hi Graham, How are you? Am glad that your migraines have eased up in frequency since your SAH. Leonie

Hi Melissa, I just (rather belatedly) just saw your post. I, too, have had neurosurgeons and the registrars' express puzzlement that I am still fatigued and have bad headaches. Then I started neuro-rehab 12 months post my SAH and the OT's there expressed their frustration that the surgical side of neuro treatment does not seem to recognize our ongoing problems/difficulties. It was a relief to hear from them that many people following a closed brain injury suffer from ongoing fatigue and/or headaches & mood swings. For a while I thought that it was just me and thought the doctors didn't believe me. This site has been wonderful in helping me to realize that I am not alone or weak and weedy. I just wish that neuro surgeons will somehow see beyond the physical 'success' of stopping/preventing a bleed so that when issues arise with patients months down the line we get the support we need and not puzzled reactions. BTW, congratulations on delivering a healthy baby girl! Leo xx

Thanks Penny. We have all had such different experiences prior and after the SAH. Hope you have a headache free day today though, Leo

Dear Keith, I beg to differ that the phrasing of my question would lead to only people who would answer in the affirmative, to reply. But that doesn't really matter as my question was borne out of personal curiosity and not a desire to do anything with the answers supplied. Interesting that so many people have responded that their headaches have either disappeared or become less frequent. My experience has been the opposite. Hope you have a good (if somewhat damp) afternoon, Leo

Hi Everyone, Thank you for responding. I'm finding your replies fascinating. There seems to be a common theme of constant headaches prior to our SAH's whether they were diagnosed as migraines or not. Although obviously our experiences are all annecdotal and this little 'survey' would not stand up to any academic or scientific scrutiny, I am amazed that there seems to be such a blanket denial that any headaches in the months/years before an SAH has anything to do with it. Frustratingly weird. Love to all, Leo xx

Hi Karen and Perry, Your replies are really interesting. Especially as Laura also had migraines for years beforehand. Like I said, I never went to my doctor as I convinced myself my headaches were just normal (then a friend at work commented about a month before my SAH that he noticed I always had a headache). I used to take over the counter pills like Syndol sometimes on an almost daily basis. But I was never sick or had blurred vision, auras or anything to make me think I needed to see a doctor. Anyone else out there who had headaches before the SAH? Not necessarilly migraines?

Crikey! Yellow spots sounds scary. No wonder you had to pull over in the car. I wonder if there is a link between migraines or tension headaches to SAH's then? I have had a headache all weekend too. It began to ease up about an hour ago - hence why I am online. I was given tablets for migraines by a pain doctor at the rehab centre but the leaflet states very clearly that people who have ever had an SAH should not take them. I am seeing hi again to tomorrow and will ask him whether he was trying to bump me off to save the PCT some money! Speak to you soon, Leo xx

Hi Karen, Mine was on the right posterior communicating artery. I have been left with daily headaches (about once every three weeks they put me in bed for 2-3 days), when tired I mix up my words, become clumsy and drop things and trip over my own feet. I also have concentration problems which presents itself as memory problems and my processing of information is slower than it used to be... Let's see. I also am much more phono-sensitive. I still get tired much more quickly than before. And it takes a day or so of doing absolutely nothing to recover from the fatigue. My mouth (result of the craniotomy) doesn't open as wide as it used too which has caused problems for dental access. I have to be sedated in hospital to have a filling in the hope that it will relax the muscles so that i dentist can get in there. None of which I was warned about in hospital. The crainotomy has also left me with a constant feeling of pressure on the right side of my face just above my eyebrow. I look as if I have had botox but only on one side of my face as my right eyebrow no longer moves! The onky thing that bothers/worries me are the headaches as it is both a constant reminder of the SAH and a worry about the unruptured anni or infindibulum. But I'm still here ... Leo xx

Hi, I do. But only after, as Janet has said, speaking to neuro OT staff. When I satrted neuro rehab in January this year, I never considered myself to be disbaled in any way. Sure, I knew I had ongoing problems but the word disabled never even occured to me. In fact when I was in a group meeting and they kept referring to my disability, I looked behind me in the first session expecting to see someone behind me. I'm only 37 and it was a shocking concept. But it has been so empowering to finally face up to the fact that I do have on-going problems and that life will never be quite the same for me again. I am really grateful that I managed to get onto a vocational neuro-rehabilitation course because without it I wouldn't have a clue about my employers responsibilities towards me because of my disability. I would just have tried (and failed miserably) to carry on under the same work load and pressure as before - causing myself more harm especially in terms of self confidence. What has become very clear from the course, is that if I were to apply for a job, I would tick the disabled box because if affords us certain legal rights under the Disabilty Discrimmination Act which will come in handy when having bad days due to headaches, fatigue etc. OK, I'm tired now. I'll stop ranting. Leo xx PS: A minor, more cheeky point associated with being 'disabled' is being able to qualify for Blue Badge which is fantastic on wobbly leg/headache days especially in the city!

Hi Everyone, I have wanted to ask this for some time but didn't want to appear silly. Did anyone else have lots of headaches prior to their SAH? When I mean before the SAH I mean months and months and possibly years. I'm asking because I did. I had so many headaches for about three years before the SAH that I had tablets in every handbag, my desk at work at my flat and my parents house. I never went to the doctor as I just thought they were stress related due to work and family stuff (my Dad has cancer and my Mum had a stroke 5 years ago). I just got used to taking painkillers nearly everyday for headaches (they are much worse now when they do come). After the SAH, all neuro medics bar one told me that headaches have nothing to do with an SAH. But one neuro registrar said that they were warning headaches and I should have seen a doctor. I'd just like to know out of curiosity, how many people on the forum also suffered from frequent headaches in the months or years leading up to their SAH. Have a good evening everyone, Leo xx

Now that is impressive!

Actually I didn't think of asking my GP so thank you for the suggestion. I must say, I think I have been quite lucky with my GP. He admitted to me when he fist saw me after the SAH that he didn't know very much about it but since then he has certainly worked hard to get me seen by the right people for neuro rehab and actually seems interested in how I am getting on. A rare quality in a GP. Thanks again, Leonie

Hiya Perry, Thanks for that I have tried to contact my surgeon but so far no luck. His secretary wouldn't even allow me to book an appointment as I am not a private patient - charming! Hope you all had a relaxing Bank Holiday, Leo xx

Hi Melissa, You are definately not alone. I'm 15 months post SAH and still have some very bad weeks with fatigue. Like you, I have had conflicting information from the neurosurgeon and neuro registrars - basically, I think that once your operation is deemed a success, the surgeons do not really know or care to know about the fatigue or emotional side-effects of an SAH. I didn't actually know what fatigue was until I had my SAH and it must be so much harder with a beautiful new baby. Over time (a VERY long time) it does get better but everyone is different and your brain will recover & need rest at a rate that is individual to you. Any info bandied around by support groups like the 'Brain & Spine Foundation' are generalisations - not everyone will return to work within 3 months etc. It really is a case of doing what you can, when you can and that can be the hardest adjustment of all. I'm still struggling with it! But, you are definately amongst friends here with a wealth of knowledge, advice and compassion. Welcome, Leo x

This is the one time I didn't want to be the first at something

Hi Tina, When I looked it up I found all sorts of things about hearts and stomachs and very little to do with brains which added to my confusion. Nice to know its not just me being a doofus! You are probably right - next stop, the consultant again. Thank you, Leonie

Hi, Last week I had my first angiogram because my neurosurgeon and the neuro radiologist at my local hospital apparently disagreed about whether I had a second or third unruptured aneurysm. The angio whislt unpleasant went OK and didn't hurt but I am left totally confused by the differing diagnosis I was given by the surgical team and radiologist. They both agreed that I have two infundibulum blood vessels in my brain (abnormal v shaped vessels) but gave very different explanations (at different times, both when I was alone). Neuroradiologist: nothing to worry about, they won't grow or change Neurosurgical registrar: They can grow into aneurysms and rupture, therefore they have to be watched and monitored as if are already annis. As you can imagine, I went from elation to confusion in the space of a few hours. I have looked them up on the internet but I just can't digest all that guff right now. Does anyone else have an infundibulum out there? And if so, what did your surgeon say about it? In confusion, Leo xx

I think this is a fantastic idea but could I suggest we start with information for the ambulance service before moving onto GP's? That is because, like my own experience, it seems that it is almost commonplace for SAH to be misdiagnosed as a migraine by paramedics and then triage nurses. I have no idea how we would go about contacting them other than through the ambulance complaints service but they may know who we could contact? The is a huge undertaking but very worthwhile as I was discharged with no information. The only printed info availbale on the ward was for stroke survivors evenn though I was treated in a major neurological centre. The booklets friends eventually sourced for me from the Brain & Spine Foundation were helpful but very vague and cautious. Until I hit upon this website I had no idea that the pain and emotions I am still feeling are within the bounds of normal as the booklets are very conservative - possibly not to scare people but I ended up feeling lost. I am really pleased that we are discussing this Leo

Hi Everyone, I too suffer from fatigue. It's been nearly a year now (on New Years Eve) and I still have headaches most days but the really severe ones aren't as frequent. I sometimes feel like its one step forward, two steps back because good days (where I amlost forget about the SAH) are followed by a huge crash - my head feels like it is going to explode and I can barely move with fatigue. On those days my head feels almost as bad as the weeks immediately following the coiling and I get really, really scared. Love Leo xx

Hiya all, Just a quick update. I have been to see my G.P. and the family planning nurse and they confirmed all that everyone has been saying in response to my initial query. The 'mini-pill' has been recommended but we just have to make sure that whoever is presecribing it knows about our SAH's as some are not suitable. I've been given a trial run of a new one called Cerazette. Fingers crossed then! Love Leo x

Hi Everyone, Thanks for your replies. I am glad the 'get-off-the-pill-now' is a common surgical response but like many of you I have never had high blood pressure so the whole thing is a mindfield. If only there was a comprehensive A to Z of dealing with the after-effects of a SAH for women (sorry men but it's nice to be selfish every now and again). I will talk to my GP but I am now armed with a few pill names and questions about the coil - I hadn't even thought of that! THANK YOU, Leo xxx PS: Try not to worry too much Laura - am sure your GP is doing what is right for you and if you have any concerns, just ask them.

That's fantastic. I am trying to gather the courage to go to the gym ... nothing fits and I am tired and out of breath half the time now. And I know it is due to the two stone I have put on since my SAH. Please let us know how you get on with your classes - you may just be the inspiration that gets my bum off the sofa! Best wishes, Leo