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  1. Hi again everyone As the date draws closer for my procedure, on Weds 11th August, I just wanted to thank everyone who posted about theirs and who has been supportive and helpful throughout. I took great comfort in reading people’s posts before the op, and the natural anxiety and apprehension, but the relief to read the ‘hi everyone I’m back and recovering’ posts is something I’m holding on to and looking forward to being able to post myself soon! I had the pre-op tests a couple of weeks ago. Then I have to go for COVID-19 swabs tomorrow, isolation at home until I go in for the op on Wednesday. Please keep me in your thoughts and send virtual positive vibes on the day! xx
  2. Hi all My SAH was 2017 and I still worry about it happening again . I had coiling and worry it’s not as effective as other methods. Does anyone else feel like this? I’ve also noticed being irritable and cross about everything . Best Wishes Josie
  3. Hi everyone Firstly, I want to thank everyone for sharing their experiences and personal stories. I have many a time taken comfort and hope from reading posts on here but have never felt brave enough to post before. Apologies in advance if my first attempt is too long! I had a SAH caused by a small 2mm ruptured aneurysm in 2013. Thanks to the amazing medical team and surgeon who performed the coiling I survived. It has been a long journey and my life is completely different now but I have adapted as best I can. I have been regularly monitored with scans yearly or bi-yearly with minor neck residual fill detected and monitored, until a larger change in size/fill coil compaction was detected in 2019. After an angiogram to look more closely in November 2019 my consultant decided that I should have a recoiling due to be scheduled for March/April 2020. He said at the time there would be less risk doing the procedure than not. He also said if it was urgent they would not have let me out of the room. Then obviously it has been delayed due to COVID, which I fully understand. It is classed as elective surgery so therefore I assume not ‘urgent’. Although a telephone consultation with a neurologist I have never met (standing in for my usual) said it should be done within months not years. I have been trying not to worry and have had a call with the nurse who though it may be rescheduled in Sept/Oct 2020 until this third wave, which I know has hit the hospitals really badly, especially my hospital. It’s so strange, originally I was terrified by the prospect of another recoiling and was thinking I didn’t know if I could go through with it but now I can’t have it I feel very differently! I manage fine most of the time but then get a wave of panic wondering how much at risk I actually am now, at what stage does it become urgent, and what I would do if it happened again. I assumed that would be it and I would be unlikely to survive a second bleed but have read other experiences where thankfully this was not the case. I would be so grateful to hear of anyone’s experiences, opinions or replies in any capacity. I understand every situation is different and how long is a piece of string etc... Thank you for reading and thanks in advance for any replies.
  4. Hi everyone My Background: I had an SAH 9.5 years ago with 2 sessions of hydrocephalus- it was minor and I’m 95% back to normal now. My grandmother had multiple strokes. My uncle went blind in 1 eye following his stroke. My mum had a stroke (minor) last week following vertigo 1 week before her stroke. I read up on medical journals and vertigo appears to class as a warning sign for an impending stroke for a small percentage of the population. So...2 days ago I had vertigo (possibly brought on by stress of my mum having a stroke?). I just want to describe my experience to see if anyone here has had anything similar and then later went on to have a stroke. The doctors however won’t treat this as a TIA and didn’t see me but just send me meds for vertigo. xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx I had a sudden attack of vertigo the day before yesterday which went on from 7am to 6pm (ish). At first everything swirled around like being on a Merry-Go-Round, making me feel very nauseous and taking me off-balance. It gradually abated until I moved my head either up or down and then it started again. I was ok if I sat still and worked at my computer. After around 6pm I kind of went back to normal and the world just only seemed to move a little if I tested it by moving my head up or down or if I laid down - particularly if I laid on my back - but not full-on spinning. Today and yesterday I’ve had a few brief moments of the world spinning fast when I move my head up or down but mostly odd slow-moving spinning at other times followed by intense tiredness, as well as periods of normality. Today I went to bed at 2pm-7pm after waking up at 9am as I feel that tired. I was given meds for vertigo sickness which can make you drowsy so that could be the reason, but it’s unusual for me to feel soooo tired. My head feels only a little achey and dull pain across eyes and odd pain sensations in head. I’ve had high BP and blood sugars. Lately I keep having my arm, leg or stomach just spasm for no reason when in bed. I had eye tests yesterday and no haemorrhages spotted. I know that sporadic vertigo can be a sign of a TIA indicating a warning of an impending stroke. Has anyone here had a second stroke following an SAH (or a first stroke) where they had vertigo a week or so beforehand or can spot that they had a similar experience to me before a stroke?
  5. On April 15, 2021 I suffered a sub arachnoid hemorrhage. I was very lucky mine was small I spent four days in ICU And was discharged home. I am very fearful of this happening again, will my head ever stop hurting? I know it’s only been a short time not even three weeks, I’m so tired folding a load of laundry requires me to take a rest. Just looking for some support.
  6. Hi all, Just need some advice. In November I experienced a sah due to a fall off my horse. I've been back to work 5 weeks only doing mornings. I'm still experiencing tiredness, dizzyness and headaches, has anyone experienced this still after and if so for how long? I've been signed off for another 6 weeks to rest but I live on my own and can't afford ssp for 6 weeks. Hope to hear from you and any help accepted. Love shazza x
  7. Hi all, I don’t often pop in as it brings it all back to me , my SAH was in 2017 but to this day I’ve never quite felt the same . I get tired easier I don’t seem to have same energy levels and my mood is low a lot of the time and I cry at the slightest thing . Every night before I go to sleep I worry I will have another ruptured aneurysm. Is this normal after 4 years .
  8. My 75 year old mom had sudden onset of double vision, extreme confusion one day last summer. At first.. thought dehydrated or something.. after drinking pedialyte she was a little better.. took her to her dr, they sent her to neurologist and he found a meningioma on brain. Took her to eye doctor..eyes had no change from the previous visit. She started having pass out spells, thankfully the first two me or my son were right there and caught her so she didn't hit the ground.. the 3rd time she passed out she wasn't so lucky.. fractured skull and 3 brain bleeds..we are extremely lucky she's still here! Neurologist says she's having seizures when she has those spells. The reason I wrote all above is maybe someone has been through something similar .. I've told this to every dr and nurse that will listen.. all I get is.. that's odd. For the symptoms to just show up one day out of the blue.. it's just odd in my opinion. So, if anyone can offer anything .. I'd love to read! Mom's home now..I live with her because she can no longer live alone. I'm married with one child still at home.. work full time.. to say it's been stressful is an understatement. Times like these.. you find out you're all of a sudden an only child! Thankfully I have a wonderful mother in law and an ex sister in law that helps out a lot!
  9. I have a history of SAH with frequent headaches just want to check if anyone got a vaccine and how there health is going on? Bit scared. Thanks,
  10. Hi everyone I have trouble navigating this site, so I hope I'm doing this the right way. I am 3 months post subarachnoid hemorrhage, non aneurysmal. I have gone back to school and tried to not stress out and have been pretty successful, but - I have iron deposits that have formed on my brain as a result of the bleed. One question - has anyone had these and what symptoms have you had and two - I get burning in my head when I get the slightest bit upset. Has anyone had this burning in your head? And does it ever go away? Thanks so much. Debbie
  11. Hi I suffered a SAH 7 years ago and from the day I had the embolisation I have suffered dreadful migraines 2-3 days a week and constant tinnitus. . The neurologist has given me everything he can but nothing helps! Does anyone else still have long term headaches or migraines?
  12. Just had a phone call from the hospital: my coils are all functioning properly and everything is as they’d expect. Repeat scan in 12 months. I’m currently grinning like a Cheshire Cat. Such a relief. Mustn’t think about 12 months’ time just get on with life 🎉🎉 Sally xx
  13. Once of the most distressing things for me post SAH was my ability to cope with cognitive demand and sensory overload. It was painful. In time that’s passed since, 7yrs, I have learnt more about my triggers but also how to pace and rest in ways that’s right for me but I still know flooding can and does happen. I still wear sunglasses and earplugs on many occasions and still alway carry them. lots of people come to site and struggle with the sensations and how this feels And I think this is a great education video that explains it credit to Northern Brain Injury Association
  14. I am in the unenviable position of having to make a decision about whether or not to have my aneurysm treated for the third time. Unfortunately, decision making is not my forte😨 Background is that in November 2008 I had a subarachnoid haemorrhage caused by the rupture of an aneurysm situated at the apex of the basilar artery in the brain stem. This was coiled 11 days later and again a year later. Since then, I have had this aneurysm, which has a wide neck, plus another unruptured one, monitored annually. Yesterday I finally had a meeting with the consultant neuroradiologist following the MRI which I had 5 months ago and also had to chase it up twice. What he suggested was to have more coils put in the base of the aneurysm where there is a gap and at the same time insert a flow diverter which, as the name suggests, diverts the blood away from the aneurysm eliminating risk of rupture which currently stands at a risk of 1% per year. All this appears to be a sensible idea but to achieve this I would need to put myself through a procedure which fills me with fear. I was also told there was a 5% chance of having a stroke during the procedure. Although I've turned this round to a 95% chance of not having a stroke it's not made my decision any easier. The other option is doing nothing now and continue being monitored on an annual basis which presumably is just delaying the decision. Anyway I came away from the meeting having agreed to an angiogram being arranged so he can get a more detailed picture of what he's working with. He also said he would get a second opinion from some consultant in Birmingham before going ahead with any procedure because of it's complexity. I have asked for another meeting with him after the angiogram before I try and make a final decision. Sarah
  15. Hello all, I had my follow-up with my Neurosurgeon yesterday and left a bit uneasy. A shortened background: I had an aneurysm Dec. 10, 2010 and it was coiled. The same aneurysm ruptured again July 17, 2020 and was coiled again. The previous coils were still intact but a new aneurysm branched out off the old one. This is very rare to happen. Prior to my coiling there were talks of putting a stent as well. This was not done. My husband and I were told by two of the Neurosurgeons that it is needed as an added protection to not have another rupture. I was discharged after the mandatory 14 days and never heard about the stent again. This has caused me lots of anxiety. I told my husband that we have to be ready to fight (not physical lol) and advocate for myself and so we did. Doc said there is some remnant which is not uncommon. He showed us the CT scan and where my aneurysm is located is quite tricky. His words were, "There are no right or wrong answer. It's not black and white. It's gray." He also said that for every procedure there are always risks and that if we do the stent I will be on blood thinners forever. He probably saw the look of dismay on our faces. I was on the verge of tears. My husband said well we have to do something, anything. Everybody said a rerupture was unlikely but it did happen. Thankfully, Doc said we'll let the coils settle in and do an MRI in three months and go from there. Got to take the small wins. My question is: For you who had stents put in, how was the procedure? Are you on blood thinners? How has it affected your life? Thanks in advance!
  16. Hi, I was wondering if anyone has started suffering from tinnitus since they've had SAH? I've never had this before but started to get it 6 months after my operation. I've seen an ENT specialist,my hearing test was fine and he said he was sure the tinnitus had been caused by the brain trauma. However, when I saw the neuro consultant a few days later he said no, the tinnitus wasn't caused by my op if it had been I would have had it since when the op was done. No one can tell me if it will be permanent. At neuro they checked all over my head and neck pressures,all ok. I see ENT again in sept.Gp has given me sleeping pills,but I know I can't stay on them for long.I don't sleep too great even with the meds. The tinnitus drives me insane, to cope with that on top of everything else at times brings me to my knees in tears. Wondered if anyone else suffers with this too since SAH?? SarahLou Xx
  17. I read something in another post about family members in denial and it really hit a chord with me. I had part of my family completely and 100% unable to understand and accept anything that happened to me. They just found it better to ignore and put it out of their minds. It was very frustrating for me. I would like to say I felt abandoned, but I WAS abandoned. Another part of the family had an experienced retired nurse who explained everything. But the other half just gave me the "emperor has no clothes" attitude. Long story short, the marriage ended 6 months later and I'm probably the better for it. I'm not hear to complain, just wanted to hear if anyone else got abandoned too.
  18. Does anyone else keep reliving the event. Many times a day I go over what happened, how it felt and the sequence of events. I’m back there on that dreadful evening. I want to stop thinking about it and move forward but I can’t.
  19. First let me apologise for this post. It isn’t a happy post, but I need somewhere to rant where people will understand. It’s been 4 1/2 years since my haemorrhage was coiled and I have been through various CBT and OT treatments, as well as a stint on the anti-depressant Sertraline (because apparently my fatigue was due to depression!!). I’m angry (and frustrated) because despite explaining to my family, employers and Doctors, they don’t truly understand the fatigue. They try and are understanding to some extent. I’m sure we all know what the fatigue is like when it hits and I hate it. It makes me feel inadequate, lazy and useless. I think I am still trying to be the person I was before the haemorrhage and it’s starting to really hit that I’m not and probably won’t ever be. I’m currently giving work most of my energy (in order to pay the bills) but it’s leaving me with very little for my home and personal life. It’s like the haemorrhage has robbed me of this. Perhaps my current feelings are part of the acceptance process. I hope so. All that said, I know things could have been a lot worse for me, so I do count myself lucky. Also, having read through many posts here, there are some very brave people and I’m hoping I can draw some strength and inspiration from that. Thank you for giving me the space to get some of these feelings out.
  20. Hi Everyone, Today I had an appointment with my Optician, my normal 2 year check up. For just over a week I have been having a problem with my left eye, the only way I can describe it is to say it has felt like i am looking through a very fine net curtain, probably sounds a bit odd, Anyway i mentioned it to him today, so he set about investigating what it could possibly be, his first conclusion was the start of a cataract, which he said at the moment didn't need to be dealt with. He then decided to look a little more closely at my eye, putting drops in, the drops didn't cling to what he thought was the cataract as it normally would, he was a little confused at this point, so out came another piece of equipment and another horrid bright light, which was very uncomfortable to my eye. He discovered at this point that it wasn't a cataract, infact it was a problem with my Cornea, he did give it a name, which i can't remember, but he did say what I have is very unusual, he has seen this problem at the front of the cornea, in his 37 years as an Optician he has never seen it at both the front and the back of the cornea. Anyway to cut a long story short, he will be advising my GP of this problem and to let them decide if I should be referred for further investigation. Apparently this is usually connected to trauma, such as substance being splashed in the eyes and can also be connected to SAH, that he said could be why it has affected both front and back, he can't be certain but because I haven't suffered any actual trauma to my eye from an accident, he feels that the damage was probably caused by the bleed. I did ask why had I suddenly got this net curtain feeling, he said it has probably been a gradual worsening, i also asked what should I expect to happen, he feels that an eye hospital will weigh up the advantages or disadvantages of doing anything, as I have sight in the eye, although a little blury they probably would leave well alone, as it's a complex operation to correct it, using a donor Cornea and the rejection levels are apparently very high, which would mean I would lose the sight in that eye altogether, not something I even want to think about. I have no pain in my eye, it is more of an annoying thing, keep wanting to rub my eye to get rid of it, i have learned to cope with other physical issues, i am sure I will learn to cope with this too. I will be monitored every 12 months instead of the usual 2 years, so that they can keep a check on it, any problems in between and he has told me go go straight back for a check up, so can't really ask for more than that. I just wish I could recall the name of the condition. Love Michelle xx
  21. Hello again I hope you’re all OK and avoiding covid. My mum is 99 and has been staying with us since just before Christmas. She has dementia and it’s very hard for her and for us to deal with. My reason for writing is to ask if anyone knows whether we are more at risk of getting dementia as we’ve had SAH? I’d hate for my sons and family to have to cope with me if I had it now I’ve seen first hand what it does to people. Just wondered if anyone here knows what our chances are. Stay well x
  22. Hi, and thanks in advance for any thoughts. i suffered a very minor SAH a little over 2 weeks ago, after I was very stressed working towards my masters degree, and right after I hung up the phone with my father who had to go to the hospital and was being difficult and I was worried. I went to the hospital after that sudden, awful headache and pain in my neck. They saw a small bleed but after angiogram, MRI, CT scan, and 10 days in the hospital no aneurysm, source and it showed that it had "resolved." The ICU stay was traumatic and scary, waiting for a potential vasospasm which never came. I'm in NJ and the hospital was amazing and drs were amazing. They said it was one of the smallest they've seen. I never lost consciousness, just had a very bad headache and neck ache. I feel overwhelmed coming home, very sensitive to noise, and a bit tired because of the seizure medicines i think. I am scared and wonder if anyones symptoms completely subside? I'm scared. thank you.
  23. I had coils 17 months ago and still no follow up scan yet and have started to wind myself up that something could go wrong without the check. Received a letter about six months ago to say I’m still on the list but there would be a delay due to Covid. I’m trying to be rational telling myself that presumably if ‘they’ were worried I’d have been seen but I’m afraid I’ll be overlooked or something. Has anyone else had to wait this long for their first follow up scan?
  24. I had SAH with coiling and EVD 11 weeks ago. How long before I should get a follow up appointment? My GP says I should have one as does my contact from the Stroke Association and someone at Headway. I still have back pain although it’s not as bad as it was. What’s worrying me more and more are the auras. They are getting more frequent around 3 times a week. My GP knows about them and says to ring for a follow up hospital appointment. I keep trying but all I get is an answerphone and I leave a message but no appointment materialises. At a bit of a loss to know what else to do. It’s like a brick wall. Does/did anyone else have frequent auras ?
  25. Hello again. I’m seven and a half weeks post aneurysm SAH and I still get really bad pain down my spine which now also affects the area around my diaphragm. Has anyone else had this pain and if you have how long does it last? Someone at the hospital said it’s caused by blood in the fluid draining down the spine but it should go once I’m up and about. I left hospital four weeks ago and make myself walk every day increasing the distance. Not very far but I’m up to three miles a day which I’m pleased with as when I came home I needed a Zimmer frame to get around the house. I’d be grateful if anyone can give me an insight into this back pain from their experience. Thanks 😊
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