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Everything posted by VanessaW

  1. Thank you so much everyone for your thoughtful replies. It is heartening to being able to receive this support, because there is so little elsewhere (aside from the few friends/family who have some understanding). I suppose I still haven't quite accepted that I am different now and I am still waiting to get back to who I was before, not that I am even sure what it means. It is like chasing after a ghost. Hope you are all having a lovely Sunday Vanessa xx
  2. Hello everyone, I hope you are all ok today. I haven't been on this forum for a long time. I had a non aneurysm SAH nearly 2 years ago now. I have managed to make a pretty good recovery and return to work as a doctor. I still get periods of bad headaches though and some nausea. I think that I cannot expect more recovery now, I seem to recall the neuro team telling me that you get most of your recovery in the first 12-18 months. Do people agree with that or are your experiences different? I have started to get a bit depressed about this having been in the midst of a 6 week headache which at times has made me contemplate a trip to A&E. A recent MRI was clear though, so I don't worry that something is going wrong again. It makes life difficult doesn't it, I never miss work, but I still feel quite often. I am grateful to have made the recovery I have, but people around us don't realise that you can still feel rubbish years after one of these events. Statistically as far as the hospital is concerned I will have been counted as a full recovery. It's just not true though, apart from headaches and nausea, I still cannot face going on a plane, I can't drive long distances and I cannot do as much exercise as I would like as it makes me sick (I used to be an exercise maniac). Sorry for being moaney!!!! best wishes to all Vanessa x
  3. Congratulations Kris your posts are always inspirational. I hope I feel like that at 2 years, it sounds so hopeful. It's good to have come to some lovely and useful conclusions for your life and spiritual development. I can relate to the pursuing of passions, I am very much like this and would like to be happier just being, rather than pursuing and conquering and doing and all that jazz. best wishes Vanessa x
  4. Thank you to you all for your kind thoughtful replies. It's nice to know that other people understand. I definitely think I need to be more patient. Patience is not my middle name, but this gives me the opportunity to practice being more patient....boooooo! Best wishes to you all in your recovery Vanessa x
  5. Hello everyone, hope you are all ok. haven't been on the board for a while, been slaving away for the NHS. Am now 10 months in since SAH and able to work full time as a doctor. A few weeks back I was thinking this is good, my headaches are really mild and I didn't have to take paracetamol for about 5 days!!! Now they have gone bad again and have had bouts of nausea too. It's really damned annoying isn't it, you think to yourself, Hurrah!! it's all finally going away and then it comes back in a big way. I kind of feel overall that I've lost my mojo since the SAH, I can't run for more than 10 minutes - I used to be a big runner - now it makes me ill. I feel like I've lost my edge mentally, although I'm a competent doctor, I don't feel like my brain works as well as it did; my memory is not as sharp. I feel a bit brain dead and my attention span is poor, I have to make a really massive effort to concentrate all the time and it is doing me in. I feel like I have candy floss in my head. It's depressing isn't it. I know rationally that I am lucky to be alive etc, but I just don't have any joie de vivre anymore. Anyone else feel like this? Does the mojo come back or is it lost forever? Vanessa x
  6. I always say I have had a brain haemorrhage, it sounds more dramatic, deservedly so and gets a big response. Well, may as well enjoy the response and the amazement of people at us having survived such a bad event!!! Best wishes to everyone here, not been on the board for a while. I do hope everyone is well and still recovering nicely, coping with the aftermath of SAH. I'm back at work full time now in respiratory medicine. It's going well, it makes me incredibly tired but am managing shifts up to 10 hours..........not sure how long I want to be doing these kind of hours. In august, I will be starting longer shifts of 13/14 hours, not looking forward to that. Anyway, my symptoms are still improving nearly 9 months in. I am surprised by this, but I hope it gives other newcomers to the board hope that the recovery carries on for a long time. best wishes to all Vanessa xx
  7. Thanks for your replies. After the dizziness I got a crashing headache and felt rubbish so a fellow doctor persuaded me to go and get a CT scan which I did, it was clear. They also did a Lumbar puncture, also clear. I was a bit resistant to having investigations as I didn't really think I was having another bleed, but in the back of my mind I was a bit worried, so I am glad I did. So now I know that even 6 months into recovery, the chronic headache etc can suddenly become acute and terrible out of nowhere but there is no cause for concern. It's a right barrel of laughs recovering from a SAH isn't it! Perhaps it is because I was more stressed at work last week. I don't know. I may cut my hours down a bit this coming week. Best wishes to everyone Vanessa xx
  8. Hello everyone, i posted recently to say how well everything was going back at work, but today I am in a bit of a panic. I have hardly had any dizziness lately (still have headaches and nausea and memory and stuff) but not much dizziness, until this week where it seems to have come back especially today, I feel like I am on a boat. It's horribly unnerving and reminds me of the odd dizzy feelings I had in the 2 weeks before I had the SAH. I feel worried today that I'm about to have another SAH. This is the first time I have had such a panic, it's not something I've worried about previously. It's 6 months today that I had the SAH. The other day, I had to walk past the A&E dept that I was ambulanced into when it happened and it seems to have all come rushing back to me. It's odd, I feel really upset and strange today. Do other people have this? Have I gone a bit mad? Hope everyone's well Vanessa xx
  9. Hello Perhaps I should have added that shambles aside, once I found out their phone number,the QMC neurovascular nurses themselves were very good indeed. I have phoned them on several occasions to ask about various symptoms, medication and memory problems. Usually they can answer my questions, but if they haven't been able to answer, they have passed the query onto my consultant and come back with an answer. It's nice to know they are there. best wishes Vanessa
  10. Hello everyone, I hope you are all keeping well, recovering nicely and enjoying life as much as possible. Thought I'd give you all a quick progress report. Had my SAH in August last year, went back to work as a doctor in December. Been on a phased return and am currently up to between 6 and 7 hours a day working. I am pretty tired, but ok. Still have headaches and nausea and I must admit, my short term memory has been rubbish, I didn't know how much it had been affected until I went back to work and I was struggling to remember patients from one day to the next. I found this very difficult to deal with. I have been well supported by colleagues though, I've not had to deal with acutely ill patients, and the memory is getting better slowly. I love being a doctor and I like the hours I am currently working, but unfortunately I need to be working a lot more hours!! it's ridiculous and inhuman! I can envisage doing another couple of hours a day later on, but not more than that. It's a really arduous job physically and mentally. I just don't know if I am going to be able to do "on-call" where you have to sprint around the hospital for 13 hours upwards dealing with some acutely sick patients!!!! Have to have some discussions with occupational health and the hospital trust to decide what happens in the future. Overall, it's been a positive return to work and I am amazed to have gotten this far. I hope I still have a career ahead of me! Wishing you all well Vanessa
  11. Hello there when i was getting ready to be discharged from QMC in Nottingham, the consultant told me there was a specialist nurse I could talk to and to ask the nurses on the neuro ward for details. When I asked about this and for any support groups, they told me there was no such thing and I would have to find something on the internet!! So I went home from hospital with no support whatsoever. It was only when I went to see my consultant for a follow up 6 weeks later that I asked him again and he said there are definitely two nurses you can talk to and eventually his secretary gave me their phone number. Also there is a support group round the corner from the ward I was on. I was not impressed by this shambles I must admit. It's such a shame that the support was available, because I really could have done with it, but none of the neuro nurses knew this. best wishes Vanessa
  12. Hello everyone Happy 2013! hope this year is good - last year was rubbish!! Just to clarify for people. A SAH is definitely a type of stroke. There are two basic types of stroke, haemorrhagic and ischaemic. A haemorrhagic stroke is one caused by bleeding in the brain. An ischaemic stroke is caused by a blood clot in the brain. 80% of strokes are ischaemic strokes. A SAH is a type of haemorrhagic stroke (there's more than one type of haemorrhagic stroke). SAH has the highest death rate of any stroke, so well done to us all for surviving! However, the good news is that the recurrence rate is low. Not sure of exact figures, but very low percentage. That is good news. The risk of recurrence is rather higher for other types of stroke. For those people including myself with small current untreated aneurysms, these are usually monitored with MRI scanning thus keeping the incidence of another bleed very low indeed. Also people who have been coiled/clipped are usually monitored to check for new aneurysm formation, again keeping the risks very low. Hope that helps Vanessa
  13. Hi Claire sorry to hear you have had a rough time of it all, it must be nervewracking having such uncertainty. I am not a neurologist, but a few things to note are as follows: a fusiform aneurysm is an aneurysm! sometimes it is regarded as a "dilation" of a blood vessel, but strictly it is classed as a type of aneurysm. 2mm is very small. It sounds like you have been messed about, but it's important to note that imaging techniques, whether CT or MRI or whatever are not infallible. I have a 2mm aneurysm (not the cause of my SAH) which was discovered incidentally. When I had an MRI as an inpatient they mentioned that it had been difficult to visualise this, despite them having seen it on a CT angiogram. In a further MRI, they could visualise the aneurysm quite well and tell me that it has not grown. I'm just saying that though these techniques are great, they are not perfect. 2mm aneurysms are usually left and are monitored. However, your neurologist might have a different opinion/protocol, I could not possibly comment. A couple of medical research papers that i looked up indicate that fusiform aneurysms can indeed cause headaches and other symptoms such as dizziness. I am not saying this is the case for you, your neurologist knows best, but it is not impossible. After the scan report, they should have given you a definite plan, i.e. whether you be monitored or if you need a follow up appointment to discuss any possible treatment. This is usually instigated by the neuroradiologist. It's not good that you have been left hanging. I don't know where you are in the country. I just contacted my neurologist's secretary and asked for an appointment and got one pretty quickly. Maybe I was lucky, but you should have one to discuss your worries and decide on a plan. Ask your GP to intervene on your behalf if you are not getting anywhere. You could also seek a second opinion, you are entitled to do this if you remain unhappy. Best wishes Vanessa x
  14. Hello everyone just wanted to say thank you for all your positive encouragement for returning to work. I've been back 2 days now and though I am supposed to be on half time, I have found that it is virtually impossible for me to start a new medical rotation on half days so I have been doing considerably longer! Half days is not long enough to learn all the stuff I am supposed to learn. No one has put any pressure on me at all, everyone is lovely. Still feeling pretty ok, but I will have to watch that I don't do myself in as I don't want to mess up my recovery. Will definitely leave early tomorrow! This forum is a lovely source of support and encouragement. Thank you. best wishes Vanessa
  15. Hello everyone, hope you are all well. I am going back to work as a doctor on Wednesday!! I wanted to go back as this will be the start of a new rotation for me, but they led me to believe last week that it would take a while to sort it out. Today they have said I can start on Wednesday and I suddenly feel unprepared mentally!! I feel fit enough to go back part time, but anticipate that it will be very tiring. It's only 3.5 months since my SAH but I am keen to return to work as have been getting really depressed and bored recently and need some structure in my life, not to mention money. Am planning half days to see how I get on, with flexibility to reduce my hours more if I need to and hopefully to gradually increase them over the next 4 months of the rotation. They have said my post is supernumary, i.e. they have created an extra post to phase me back in. I won't have to do on-calls or awful shifts and I won't have any pressure on me. It's as good as it could be really for a doctor. I am quite scared!! Will let you all know how it goes. warm wishes Vanessa xx
  16. HI Mary since my SAH my vision has deteriorated quite a bit in terms of reading. I haven't lost any of the visual field or distance vision. Went to the opticians last week and have to have a new prescription for reading glasses which varies depending on whether it is computer or hard copy that I am reading which is a pain so I am going to try out these varifocal things which has both prescriptions in them. My eyes get tired and blurry after a while, so I try and give them a rest periodically. I have to have good light or it hurts and if I have a headache to start with, then reading a lot makes it worse and makes me have eye pain. best wishes Vanessa xx
  17. Thank you everyone for the lovely interesting replies. It's hard to strike the balance I find between asking for help and feeling like a pest. I too suffer from the thought that it should be obvious that my life is very difficult now and I shouldn't always have to ask. I say this partly because in the past if friends have been in bother I have often helped without having to be asked so why don't they do that for me? This is one of the challenges of life anytime isn't it, whether one is ill or not, dealing with out expectations of others and sometimes people's lack of empathy. It is not easy and I find it a struggle to deal with the resultant anger. I am desperately hoping that I learn something worthwhile about dealing with other people from this experience and don't just turn into an old moo!!! best wishes Vanessa xx
  18. Hello everyone, hope you're having a lovely Sunday. Sorry I am about to whinge again!! When you have your SAH, it's all so dramatic and everyone's worried and wants to help and is all concerned. Then some time goes by and your friends/sister realise you are alive, not massively disabled (in my case), still know my name and look pretty ok. Then the phone calls, etc lessen and it feels like some people forget about you. Is it just me or do other people have the experience where you feel forgotten about? I think I feel this very acutely as I am single, but though some friends are great, others are not. I really appreciate the kindness that has been shown to me and I still make an effort with people and I don't want to end up all bitter and twisted and angry at friends who I am currently thinking are being selfish. Does anyone understand this? or have I just gone a bit mad because illness is quite isolating isn't it and I think it can be tempting to go a bit me me me!!!. Perhaps I need to lower my expectations. warm wishes Vanessa xx
  19. Hello sorry to hear you are suffering, it's the last thing you need after a SAH. I seem to recall having chest pain after I left hospital after my SAH, it was definitely muscular, it hurt when I breathed in deeply and moved, and it sorted itself out after a week or two. Have they done an ECG (a recording of the activity of your heart), I'm not saying you need one, but just to reassure you? It sounds muscular from what you are describing. Make sure that the pain doesn't encourage you to breathe in a shallow manner, this makes things worse. Make sure that you periodically take a few deep breaths, this will restore proper movement to your chest wall, reduce your anxiety and get the muscles moving properly around your chest and torso. Never underestimate the weird pains and aches you can get after a spell in hospital, it is common, through lack of activity, anxiety, lack of nutrition (hospital food where I was a patient was inedible!) etc. It will get better. best wishes Vanessa x
  20. Thank you to everyone for your kind support when I was in a pit of despair. Have clambered out of the pit for the time being. It's good to know there are people out there who understand. warm wishes to you all Vanessa xx
  21. Mary you have been through such a lot you should be proud that you have managed so well so far, though I totally understand how this all is at times. It's all so random isn't it, it's so unpredictable, no wonder you feel fed up sometimes. Please don't feel guilty or think that you are whining, we all need to vent and this is the right place to do it. By the way, you helped me the other day when I was in a pit of despair, so did many others on this forum. Thank you. I am sending you a lovely hug and fingers crossed for a lottery win! Vanessa xx
  22. Hello everyone, I hope you are all feeling ok today. I just wanted to vent a bit if that's ok. This week my headaches have been bad after 5 or 6 weeks of them being very mild. Is this normal? I feel like I am going backwards in my recovery at the moment. The week before I had disabling nausea. It is making me lose confidence in ever recovering from this thing, especially as am supposed to be going back to work as a doctor in a month. I really have to go back because I only had one month of sick pay and my stupid work have not sent me the statutory sick pay forms, but overpaid me sick pay instead and are now asking for it back. Critical illness policy won't pay out. I am going mad with boredom, despite trying to keep occupied. It all feels like my life is in ruins. sorry for whining on, I know everyone thinks I am lucky because I don't have any obvious disability, and I do have some perspective of course and am grateful that this is the case, but I am fed up with feeling ill every single day. How do you all keep positive? I have been mostly pretty good and positive so far, but recently have lost it. I have even at times thought the unthinkable i.e. perhaps it would have been better for me if I had copped it in the first place. I know that's a terrible thing to say, surely I can't be the only person to have thought this? best wishes Vanessa xx
  23. Well said about Money!!! I agree, it would remove the pressure to return to work, worry about mortgage payments etc. Vanessa xx
  24. Hi Bev Sometimes people can have a SAH following a trauma to the head, that didn't happen to you so your bleed was non traumatic. As they haven't found a cause they call it a spontaneous bleed, i.e. there is no known cause such as an aneurysm, an AVM or other abnormality that they can detect by imaging such as CT and MRI. The Sylvian fissure is an area in the brain where if there is blood in it, the SAH is more likely to have been caused by an aneurysm. Your report says blood was adjacent to but not in the sylvian fissure. This all indicates a non aneurysm bleed and that is what the doctors are looking for, identifiable causes that can be treated. Most NASAH are caused by the rupture of a superficial blood vessel. I know it's frustrating because that's not a great explanation either. It would certainly be reasonable to ask for a more detailed explanation than the one you have. There should be reports of all the imaging you have had done and it would be reasonable to ask for more details presented to you so you can be reassured that they have looked for everything possible. Perhaps your GP can assist in this as they will have copies of all the imaging reports. It might help to put your mind at rest if you have more details of what they have looked for. best wishes Vanessa
  25. Hi Bev, I'm really sorry to hear about your latest developments, it must feel rubbish for you. I had a perimesencephalic NASAH bleed with no explanation. The tests I had were: one CT one CT with contrast dye one CT angiogram one MRI of brain and spine - no contrast The radiologists could find no reason for the bleed, they could see a congenital anomaly called a "fenestration" which is something that some people have in a big blood vessel leading into the brain and occasionally an aneurysm can hide in there, but there was no aneurysm in my case. They found an incidental aneurysm elsewhere in my brain which didn't cause the bleed. In the MRI they did the whole brain and spine to ensure there were no blood vessel oddities such as AVMs in the spinal vessels that could have caused a bleed. I hope this was done for you. If you had a permesencephalic bleed, your doctors should have been especially looking at the circulation at the back of your brain (the posterior circulation) and going down into the neck for causes. I imagine your doctors will have considered all these possibilities. Overall I am satisfied that they looked thoroughly enough. I also largely accepted that there is no explanation. It's a bit rubbish isn't it. My neuro consultant said that he has only known one person in his entire career experience a second NASAH, so I am hanging on to that and assuming there is not going to be another one. It's natural though to have concern about a repeat bleed. I hope you can find a way towards accepting it all, though I know it's difficult, especially as you have experienced this seizure. Perhaps your medics will be amenable to further MRI studies to put your mind at rest. I wish you all the best Vanessa x
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