Leo

Hi Everyone, I was on the pill before my SAH and the surgeon quickly whipped them away from me. Does anyone know if/when the pill is safe to go back on again? And if it is deemed 'safe' is there a particular brand/name I should be aware of? I am due to see my GP next week and would like to get as much info as possible to make an informed decision about the dratted contraception issue. Thanks, Leo PS: My surgeon told me last week that I no longer need an operation to fill the 1cm gap in my skull. Somehowe it has healed itself some 8.5 months after my craniotomy - I am soooo HAPPY!

That is such great news. I haven't started back at work yet and am dreading it as if I have a good (nearly normal) day, it takes me about two days to recover and start again! I only hope my employers will be as understanding as yours! - oh and congratualtions on recognising that it was an issue and being brave enough to ask for what you needed. It isn't always easy

Thanks for all of your messages of support. It has been a real help to know that patient notes are lost on what seems to be a fairly regular basis (not good but I no longer see it as a personal slight!) & that I am not alone in thinking that outpatient appointments are sometimes less than satisfactory for the patient. Who are those 12 year olds pretending to be registrars?? I am now due to see my neurosurgeon on Monday afternoon and will write a list of my questions down so I do not forget anything. Have a great weekend everyone, L xxx

Thanks Tina and Karen, I hadn't heard about that website but will be sure to look it up. My family probably think I am spending too much time finding stuff out about SAH & after effects but I LOVE THIS WEBSITE for all of the information and experience sharing. It definately feels like I am no longer alone. You are angels, Thank you so much. PS: Does anyone else get rather emotional at the drop of a hat??

Hi Tina, Sorry it has taken me so long to reply but this week wasn't a good one. Tiredness & stress led to my headaches getting much worse than they have been for weeks. I went to the hospital to see my consultant but he didn't see me - I was seen by his registrar - his junior. The hospital has lost my file (my Dad's went AWOL once for 6 months but they finally located it) but my scans were on computer. He said the scans didn't show my skull or the second aneyurism because it wasn't the right scan. He then asked my mum if the swelling looked OK to her and she said she thought it had gone down. The truth is I have put on so much weight my family cannot really be impartial judges of that. The registrar then said "Mum's know best" and said they would see me in 6 months time. I was really mad. I want a new scan but have to manage the situation with tact and charm. But if I was well and running at 100% brain function I wouldn't have left the hospital without an answer. As it was I just jind of retreated into myself (stupid, stupid) and allowed myself to be fobbed off. That evening I looked my surgeon up on the internet, found his email address and darfted him a letter cataloging my concerns. I didn't send it until the next morning after ringing the hospital to make sure I had the correct email address. The result of my email has been many phonecalls between myself and two neurosurgery secretaries. One of them even asked me how the swelling under my eye is! The constant strain of trying to get a sensible answer plus a death in the family last week & my own fathers ill health (cancer) have really wiped me out and I haven't been very smiley this weekend. The secretary told me to phone back on Wednesday after the Bank Holiday. But I feel I am fast running out of fight. Maybe it'll come back once everything settles down but for now I can hardly think straight. It has taken me three days to type this. Hope you are having a lovely weeknd & that my grim experience hasn't made you feel down, Love Leo x PS: I suppose the only good thing to come out of this is that I have finally acknowledged that none of my clothes fit and that I need to join a gym!

Hiya, I don't get tired jaws either but I can't open my mouth as wide as I used to (I have a big gob!) and often find myself wincing when I yawn or try to brush my teeth. My surgeon said this may be due to the nerves and/or muscles being damaged during my op. The ramifications of an SAH just keep on rolling in ... Leo xxx

I was (and still am) 36 when I had my SAH. Everyone keeps telling me I am "so young" or "so unlucky" to have had one - neither comment helps!

Thanks Tina, I too believe that things can only get better. My scar is mostly in my hairline too. I can brush my hair over it but then it looks like I am trying to be fashionably seductive ... in the garden!

Hi Tina, Being new to this site myself, I can only tell you that trawling through the various posts have helped me. I had my SAH on New Years Eve 2007 and mine was also clipped. You are definately not alone in how you feel, Best wisehes Leo xx

Hiya, Thanks for all of your replies once more. My GP wrote to my neurosurgeon and this prompted him to telephone me last week to set up an appointment with me out of clinic times, on the ward. He now wants me to have a CT scan to find out if I have a small hole in my skull which may be the cause of the lump. If the hole is there and is still open I will have to have another operation to seal it up. If it has already healed then my lump can be drained again - possibly third time lucky! But it is thanks to all of you who replied to my posting that I realised that my lump whislt not exactly rare, was uncommon and that is why I raised the issue with my GP. Thanks again, Leo xxx

Hi Everyone, Sorry for the delay in replying but I have been a bit too tired this week to turn the computer on as I had my first venture out into the local High Street - funny how I'd never noticed how loud everything was before! Thank you so much for your information regarding the bumps and lumps we all seem to have. it's good to know that I am not alone even though the causes cited by the various suregons seem so varied. You are all an inspiration to me! With love and hugs, Leo xxxx

Hi, I was just wondering if anyone on the forum had/has a lump like mine & how long it took to go down? After the crainiotomy my wound site immediately filled up with CSF and although it has been drained twice (and tested for infection) it filled up again. My surgeon just said it will go down in time. I am not ashamed of it, it's kind of like a daily reminder that I am a survivor but ... Does anyone know a rough approximation of the time it will take to go down? I had my SAH on NYE. Cheers, Leo xxx

Hi, I am a lecturer. Work has been really understanding but I feel so guilty at increasing everone else's workload. I know that the SAH wasn't my fault but the guilt remains. It seems that quite a few of us on this forum are teachers of one sort or another. Interesting! Leo xxx

Thanks to Everone for your replies . You have made me feel very welcome and it's good to know that my experience isn't an abnormal one :? and that the best way forward is to stop and listen to my body one day at a time. Lots of love to all, Leonie

Hi, A fab friend of mine introduced me to this website after I suffered a SAH on New Years Eve 2007. To cut a very long story short I was very lucky that it occurred after I decided on the spur of the moment to spend NYE with my parents. I jumped in the car at 11.30pm and I had only been in the house with them for about 5 minutes before the awful pain in my head started. I suffered the tell-tale symptoms of headache, vomitting, temporary paralysis down my left side and sudden sensitivity to light. My parents rang for an ambulance. They took their time to arrive and didn't want to take me to hospital when they actually did turn up. They told us that all I had was a migraine and that I would have to wait 5 or 6 hours for paracetamol. I know NYE in London is the worst day to fall ill but if it wasn't for my Mum insisting they take me, I hate to think what could of happened. Basically at the hospital they diagnosed me with a SAH on the right side. I was admitted into intensive care and had the more invasive clipping operation. I spent nearly 6 weeks in hospital and if it wasn't for the friend I mentioned above I wouldn't have not a single leaflet to explain fully what happened. The hospital didn't have any printed information available which is suprising as it has such a world renowned neurology department. I haven't returned to my teaching job and have moved back home to my parents as I couldn't walk properly or do any of the basic things one does by myself. Three months on I am walking without aides but still get very tired. I usually take a walking stick with me so that I have something to lean on when my legs become tired and wobbly. I also have a small aneurysm on the left side which the doctors were going to coil but decided after 2 months to leave it alone as they said it was too small and the risks of operating were larger than leaving it alone. It makes me uneasy but I couldn't really face another operation right now and I certainly can't afford to be off work for longer than 6 months and I am already at month 4. I still have a very large lump to the side of my head. It was drained twice at the hospital before I was discharged and immediately filled up again. The doctors have seen it.I suffer strange pains and sensations in it sometimes but my neuro surgeons say that it is CSF (brain fluid) that will gradually be re-absorbed by the body. Is that true? I haven't seen it mentioned anywhere. The only other thing I can say is that my family and friends ahve been amazingly supportive. They haven't lost faith in me or lost their patience with my long recovery. I feel incredibly lucky to have been in the right place at the right time when it occurred as I could have been in my flat alone. The surgeons were amazing and I am extremely grateful to them. I have tried to keep my sense of humour and this has helped stave off the depression that most expected me to suffer from. But I must admit, I do get horribly frustrated that I cannot do what I want when I want to! Thanks for reading my very long winded account (spelling mistakes and all), I think I need to have another nap now I think! Leo xxx (PS: Thank you for setting up this site)