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Found 34 results

  1. Hello everyone, first of all, I want to apologize for the faults you will see in the text, I'm from France, but it's the only website where I can find answers. My name is Alex and I'm 28 years old. On october 22th, my 22 years old little brother suffered 2 ruptured aneurysm... he was sent very quickly to an hospital, where the doctors healed the bleeding brain by putting spirals inside ( i'm really sorry, I don't know th real term). After 1 week of artifical coma, he woke up very easilly, was able to talk, to see very well, to hear and even to move (only the right side) But, because I have the feeling that there is always something wrong when he gets better, 10 days after, he stil has no short term memory, for example, when somebody leaves his room after a visit, he forgets everything, he can't tell me who came to visit him. I feel really upset and sad. Do you know if there is a chance for him to get better? I know that our lifes will never be the same again, but I really hope that he will be able to get a " independant" life. he's my little brother, the only person that matters to me, since my parents passed away... I don't want answers, I know it's impossible without being a neurosurgeon, but at least, hear about your stories, if anybody has ever been in this type of sitution. Thanks and sorry again for the bad english. see you
  2. Hi, wondering if anyone can just help settle our worries a little bit. I know every case is different would be great to hear what other people went through watching a loved one during recovery. 2 weeks ago my Dad (aged 51) suffered a very large SAH. The last 2 weeks have been such a rollercoaster from the point where we were sat in room with a doctor telling us there was nothing they could do as he was not responding, to the doctor coming back in saying scrap that, he has just started responding. He has been in Neuro critical care and the staff have been absolutely amazing. He recognises us all, he can eat and swallow, his eye sight seems ok as he can read big signs on the ward etc. 2 weeks on he is extremely confused and just rambles on his own little world about random dates. Each day he thinks he is a different country in a different situation. Is this confusion all normal? If we talk directly at him and ask him direct questions his memory is there and he knows the answers. But we just want the normal dad back, not the confused one. Is the confusion and being in your own little world normal and if so how long did it last for other people? Also the surgeons have said they have looked at all jis scans and stuff and stuff and they have decided they do not want to intervene or operate as the risks are too high. They have just said they will continue to monitor and it will take months and months for recovery. Is it normal for people to be untreated? Especially when it's a large bleed? Thank you, just looking for some re-assurance that the confused patient is normal and all part of recovery. Thanks Dotty
  3. The Brain and Spine Organisation publish a good set of literature on SAH which My family was given after my SAH , they run a helpline which I have called in the past and now they are organising their first ever conference solely about 'life after SAH' this November at the National Hospital in London which is where I was lucky enough to be treated. The agenda looks pretty good, I have personally met the Neuro physiologists speaking as they ran 6 group sessions I attended post my pysch testing over a year an a half on to help me develop some techniques to help cope with my cognitive challenges and they were very helpful and run this course throughout the year so will have picked ul a lot of experiences I am sure. It's a full day which might be a little much for any one in early days post bleed but maybe useful for a carer also? Anyway thought I would share. It costs £10 and maybe worth it for anyone within travel distance. http://www.brainandspine.org.uk/life-after-subarachnoid-haemorrhage-conference
  4. Hi, I am posting for a dear friend who has anxiety attacks during which her blood pressure gets high. I am just wondering how common are these anxiety attacks and what is your normal blood pressure after the SAH? How frequently do you get anxiety/panic attacks? Your response will be greatly appreciated.
  5. Hi - I've used Titanium as my 'stage name' as, along with platinum, it's one of the sturdiest metals and that's why it's often used to decorate (aka repair) our brains. Firstly if you're a fellow SAH survivor reading this I want you to pat yourself on the back as the quoted SAH death rates vary from 45% to 80% within a month, combine that with the fact there are only 8-10k cases in the UK every year so some GPs only have one patient during their whole career then I think we're doing well! Especially when people hear you've had a brain haemorrhage they always have a tale of a relative or friend who had one too but they weren't lucky enough to wake up again. I had my first SAH in August 2010 (no headache previous to it) - I was walking on a treadmill at the time so have realised that I shouldn't believe what they say - exercise is actually bad for you! The SAH was clipped and I went through the learning curve pretty quickly as I run my own business so had to be on the ball to pay my staff wages at the end of the month. Part of me wanted to be able to be at home to do a proper recovery but the other part of me knew that I could do that for a long time but going back to work would still exhaust me whenever it happened and by having to use my brain it got it back into the groove quicker. As I was only 38 at the time I knew I was lucky in that youth was on my side. I had my second SAH on Friday 13th (previously my lucky date) in 2015 - again with no headache prior and literally just heading off to work. This time they looked to see if they could coil and they were able to so I avoided having hair like a nest this time. Within 8 weeks afterwards I had a large seizure (again no warning and hadn't had one prior) but fortunately the ambulance arrived quickly and gave me an oxygen fix - since then I've been on Keppra although it's questionable as it delays brain recovery (anti-cholinergic drug). I have had 2 cerebral angiograms since and have refused to have another one moving forward. The last time something happened in my brain that the neurosurgeons haven't heard of before so given the high risk I don't think my brain will entertain it again whilst I'm awake (plus they damaged the femoral nerve artery so it was mega painkillers and unable to walk for a week). They discovered I need more metal in the second SAH by it hasn't grown since the previous CA and I now have a third unruptured aneurysm but we're just leaving it until next year - I've done a comparative on the last 2 CAs and it hasn't grown significantly so it's safer to leave it be methinks. (Especially as I'm reading 'Do No Harm' by Henry Marsh - an insight into the world of neurosurgeons (humorous in some places and a wake-up call in others). So, that's the harbinger of doom part written. Do I lament my misfortune and wrap myself in cotton wool? Absolutely not. Every day when I wake I smile because I've woken up on the right side of the grass; when I'm tired as I've been working on a screen all day then I put music on and do silly dances; I laugh internally when I express my opinions knowing that I don't really have many brain barriers now so that's my get out of jail card; I can't drive so I see and hear the tapestry of life when travelling on public transport and I appreciate everything around me when I'm on foot. I'm not married and I don't have children (as far as I know) - it's just me, myself and I but the three of us seem to be titanium when it comes to coping with these brain hiccups. So, in the grand scheme of things I think I'm actually quite lucky and long may the luck prosper! Sarah SAH August 2010 - clipped; SAH March 2015 - coiled
  6. Please help if you can. Is there anyone on here who has experience in residual aneurysm after subarachnoid haemorrhage with clipping as treatment. My mother had a grade 5 SAH with serious vasospasm and hydrocephalus 3 months ago was in a coma and on life support and told she wouldn't make it! Well she proved everyone wrong and has done amazingly! She was home, (after just a month) and is walking, talking and living fairly independently, with just memory, fatigue and mild confusion issues. However after an angiogram yesterday we have now been told that 3mm of one of her aneurysms have been left behind... We don't know yet what they will do about it or how worried we should be... has anyone had a similar issue? also she was flying to Cyprus for my wedding in August (5 months post SAH as she is well enough in herself for the trip) but now I don't know if this has risks? please help thank you xxx
  7. Introducing myself

    Hi. New to forum and would like to introduce myself. Had SAH on 4/13/2015 on a trip to Albuquerque, NM for continuing education. It was coiled. I am a self employed real estate appraiser in East Texas. 51 years old at the time. Male, was a smoker and fairly heavy drinker. No longer. Grade 4 SAH on the Hunt and Hess scale, out of 5, which means I had a 20% chance of survival. Then you figure in I had Torsen's syndrome, blindness caused by blood forced into the eyes from the bleed. I've read that Torsen's syndrome multiplies your chances of the SAH being fatal by 4.8. Sorry if these topics have been covered before or if my statistics are not accurate. Make no mistake, I don't know much medically. Anyway, apparently the odds were against me surviving but I did. Was blind in both eyes for about four months before having a surgery to restore my vision. The synthetic fluid used to replace ones natural fluid in the eyes caused cataracts. Then had cataract surgery a few months later. A breeze compared to what else we have been through. I don't remember the event or anything else for 5-6 weeks. Spent 26 days in Neurological ICU in NM, my wife says (My unbelievable caregiver). Flown on Medical plane to a suburb of Houston and spent another month or so in rehab before be discharged for PT in my hometown, 60 miles north of Houston. Went through 6 weeks of PT in my hometown. Another 3 months in another, highly touted, physical therapy institution in Houston. Made significant improvement but still had, and still have, physical deficits including balance, walking/gait and fatigue. Thankfully no depression, which is amazing, as I had major depression prior to the explosion in my brain, since 2001. All the improvements in the deficits continue, though at a much slower pace than I wish. I am, however, very grateful for any progress! I could go on and on. But don't know how much information would be useful. I, like everyone else, would like to know when, or if, I will fully recover? I don't think any human, knows. What I do know, is I will continue to strive for it
  8. I had a SAH on the right side of my brain 2 months ago. With a 100% blockage on the left side . This has been the worst nightmare. At least I am still alive, but the pain I continue to have is unbearable. Not only the migraines, but different pain in my legs and arms. No one seems to be especially concerned with the pain I am in. After the first angiogram in the hospital, they kept me in neuro ICU for 5 days. I had a second angiogram a 2 weeks after. The neurosurgeon said he wants to put in a stent and that he thinks this needs to happen sooner than later. 2 weeks later we go to an appointment, he states he wants to put me on Plavix, then he will schedule the angioplasty. I return a month later with no further tests and he tells me he is not doing the angioplasty (with no real explanation). The brain spasms(vasospasm) kept for about a month. I think I still have them. Best way to describe is squishy head. I have episodes where I lose balance, my vision will have a vibration effect, bursts of white stars where I almost fall. I take 10mg of Norco and the pain still will not go away. However, the neurosurgeon said the migraines have nothing to do with with the SAH and gave me Fioricet ( which does not work). I had migraines before, but nothing like this. Not to mention, these are WAY different than any migraine prior. I can't work full-time. I am so sensitive to all light, especially the sun. I cannot look at my computer at work for more the 4-5 hours. I sit in my home after work crying half the time. I am scared to do anything strenuous or exciting, bending over hurts my brain(blood rushing), being outside in full sun hurts my eyes(even with sunglasses on). I have had about a total of a week relief(combined days) in 2 months from migraines. Hopefully, this new neurology appointment June 1st will come up with a treatment plan. Can anyone help with any suggestions?
  9. Hi my name is Fay I'm 29, I suffered a SAH 2 years ago now, I feel I have fully recovered. I have recently found out I'm expecting (I'm currently 10 weeks, were over the moon) I am due an MRI scan in June to check on my other aneurysm which I have and my current one which was coiled off. I contacted my consultant and spoke to the nurses which have taken care of my after care and have been brillant. I spoke to them and they didn't seem to concerned they didn't want to see me and they said there is no link to pregnancy and brain aneurysm but they would let the consultant know about my news. They changed my MRI date till after my due date. I was just wondering if anyone has gone on to have a child and what care they got from there consultant? Or am I panicking over nothing? I worried when I push there's a lot of pressure on my head. thanks in advance xx
  10. Hi, on 25th January 2017 I was admitted to hospital after an MRI revealed two SAH's on either side of the brain. The past three weeks I had headaches and left side neck pain that would develop during exercise and then continue during the day. They were quite intense during the workout and would reduce in intensity for the rest of the day. I kept exercising and then I got a severe headache one training day. Convinced it was coming from my neck I did every type of massage and saw the chiropractor who said my neck was the best he seen it. Three days later, while exercising (all sessions were with medium sized weights) I had an explosive headache and couldn't turn my neck. I made an appointment for GP next day and she recommended, after I told her that my mother had an aneurysm in an artery of the brain, to have an MRI and gave me some migraine meds. They didn't help and the next day I went for MRI and was told to go directly to emergency due to bleeds. They couldn't find an aneurysm initially but with a subsequent angiogram they found an aneurysm in the internal corotid artery. They did not think it was responsible for the bleeds but suggested stenting it just in case ( it was small). They told me at first that they thought I had reversible cerebrospinal vascular spasm, a controversial diagnosis. Some doctors said they didn't think that was the cause of the bleeds. My question is what reasons have members been told as to the cause of their bleeds. I'm really quite scared that it will happen again if there is no reason for it. Also have many of you had a SAH during exercise? Have you been told not to exercise again except for gentle stuff? Thanks for reading my story.
  11. Hello everyone, My mother suffered a SAH in 2012 which was coiled. This site really supported her and my family throughout her initial recovery, so I'm really hoping for some advice. My mum has been doing fairly well up until recently. She gets the usual headaches and pressure feelings, but recently (in the last month or so) she started to get quite sudden headaches. They mostly subside after taking paracetamol but often can linger on and occur again later in the day. She says the come from nowhere and can be quite intense. I'm wondering if anyone else has every experienced this in the years post-SAH? The worry is always there as I would never want her to go through another SAH so any advice is greatly appreciated.
  12. Hi, I am new to this so I apologise if I am not writing in the correct forum. I already have a post in the SAH part. I am a 22 year old non smoking female. Looking for some advice from people who have experienced Permiesencephalic Sah ?? I have recently been to A&E for a severe headache, it started off as a bad migraine. I thought nothing of it as I had a cold and thought it was turning into the flu, I could not walk or bare any light I had pins and needles in my left leg and they would often feel weak. - diagnosis was sinusitis on my left side. However, a consultant noticed something on the CT scan and believe it to be a SAH on my right side. I have been referred to a neurologist and am waiting for an appointment to become available. I have been left in the dark, so to speak, with regards to what is happening and what will happen when I see the neurologist. It's on my right temporal area and I still get pressure headaches and sensitivity to light on the odd occasion, I have also become a bit ditsy and forgetful and zone out a lot. If anyone could tell me what to expect, or what could happen I would appreciate it. Would I be put on tablets? Is this very serious? Do I need an op? Can I travel abroad? Can I have a baby? Is this bleeding on the brain or an aneurysm? The letter from hospital stated this word for word, if anyone could shed some light as to what this means? Subtle areas of linear high density are demonstrated in the right temporal parietal region and could represent a small volume of SAH. Extensive inflammatory changes are demonstrated involving the left ethmodial sinus left sphenoid sinus and the maxillary antrum. GP to arrange urgent neurology appointment for SAH My first visit to a&e was on the 19th December, I was given antibiotics for sinusitis.
  13. Cassandra

    Hello everyone. I'm Cassandra, I'm in my 50s, and I collapsed at work in June 2015 with a sub-arachnoid haemorrhage due to a ruptured aneurysm. The aneurysm formed at the site of a really small AVM on the right hand Anterior Inferior Cerebral Artery in my brain stem - an area of the brain one of my specialists describes as 'eloquent', meaning it was a sort of 'Grand Central Station' that basically ran my entire life. For 4-6 weeks prior to the SAH, I experienced a range of symptoms that could well have been related: double vision, dizzy spells, stabbing pains up the back of the head, a regular, rhythmic sound in my head and excessive fatigue and exhaustion. I was referred to a cardiac specialist by my GP but my SAH intervened! I had the aneurysm embolised during angiography, but from what I understand both cranial nerves # 7 and 8 (facial and vestibulocochlear nerves) were damaged through interrupted blood supply and the procedure. I had a 'tiny stroke' which contributed to mild and temporary facial palsy which has pretty well 100% gone away. I have no memory of the first 6 weeks, but I'm told that it was a miraculous recovery from a huge bleed and that I had no vasospasms. I did have hydrocephalus so got a VP shunt (the non-adjustable type which just uses pressure to modulate the flow). Sixteen months after the event, after steady incremental improvement I am mobile and can lead about a 75% normal life. I can't drive or work. The biggest issue i have (aside from the almost constant fatigue) is the continuous chronic feeling of numbness, congestion, heaviness and pressure in my head - largely on the right side. This is the one thing that makes me say ‘I can’t live like this’. My anti-depressant is helping me manage it short term to medium term, but long term, if there is no change, it stands in the way of what could be close to a 100% recovery. None of the four specialists who have handled my case have offered a useful or helpful prognosis or explanation for what is causing this numbness, congestion, heaviness and pressure, and I don’t think waiting to see if it improves over time is satisfactory. I can't help thinking that three years down the track, with no change, a specialist will finally pay attention and say, Oh, let's have a closer look.... I'd rather look now! My husband has done some research and I have found that there appears to be a connection between ongoing neural inflammation and ‘foggy brain’ and a significant ‘double-edge sword’ role played by activated microglia on inflammation I found two papers that support this but no-one in the medical field was impressed.. Norman Doidge, author of The Brain That Changes Itself and, more recently and relevantly, The Brain’s Way of Healing” talks about the role of the glia cells and, importantly, the production of toxic cytokines. He makes a strong case for positively influencing how the brain handles this activity - and others - through laser light treatment. I tried weekly treatments for 3 months, but at $70 a pop it was becoming a bit of a financial drain. Anyway, I've followed this forum for a while and with the help of my husband have signed up, and am hoping to get some insights from others!
  14. Myra

    Hey! My name is Myra and I am from Georgia in the US. I have been so thankful I found Behind the Grey! I had a SAH September 22, 2016 while running on the treadmill at the gym. I was stabilized at our ER and then airlifted to Emory in Atlanta. They said I had a non-aneurysm SAH. I spent 10 days in the neuroscience ICU. They didn't really give me any information about SAH recovery at discharge, so this group has been very comforting to me to know I am not alone. I still have headaches daily, sometimes pretty severe ones, and have expressive aphasia and short term memory issues. The doctors say these things will get better with time. I started back to work, for half days, on December 1. I have been pretty fatigued since starting back but love my job and really want to get back to the life I had before. I am a RN. I worked in surgery for 7 years, and just went to work full time at a busy endoscopy center in July, while keeping my OR position at the hospital as well. Starting back to work seemed to push me back in my recovery but I am trying to push through. I just had my follow up cerebral angiogram yesterday. And it was normal! However, I have had a nonstop headache since and my expressive aphasia has worsened again. Has anyone else had any experience with this? Any thoughts are encouraged! Thanks! -Myra
  15. Renfield New Member

    Hello everyone. I am a 55 year old male. Non-smoker all my life with a late developed asthma, (49 years old), as the only real medical problem I have ever had. It has been 6 weeks since my SAH. I spent 3 weeks in hospital and I have been out now for 3 weeks recovering at home. The consultant advised me that my bleed came from a vessel that was shaped in a fashion not conducive to being treated with coiling/embolisation. He therefore fitted a clip which has hopefully sealed off the weakened area of the vessel. It's a shame that things could not have been treated using a coil and via Angioplasty. Like many of you, I had my scalp cut from the middle of my forehead, along the (receding) hairline, and curving down to just in front of my right ear. The scar traces a kind of semicircle and where it travels down onto the side of my face, it becomes quite thick and noticeable. Being male, I guess I'm fortunate that it is partially concealed by my side-burn. Like most of you I expect, before it happened to me, I knew little or nothing about such conditions. My experience was lying in bed on a Sunday morning, raising my arms over my head and stretching and arching my back slightly, I felt an explosion of pain at the base of my skull. I stayed largely in bed for the next 4 days hoping that things would get better. I was experiencing, headache, neck pain and stiffness, zero appetite, occasional nausea, light sensitivity. All the usual things as I have subsequently discovered.Finally, I called an ambulance and was taken to hospital. I had not improved in the 4 days I had been lying up, and so decided finally to get a medical opinion. Like most men, I have no great faith or liking in Doctors or hospitals. Women are far more sensible in such matters. Even then, the main reason I called for an ambulance was only because a fall I had had 8 days before made me wonder if perhaps the pain was a delayed effect and maybe I had a cracked vertebra or something like it. I realise that I must have been in denial, as I couldn't really bring myself to believe there was anything seriously wrong with me. When my local hospital advised me they were sending me to a specialist Neurological hospital, this was regarded by me with a large amount of anger and annoyance. When I had arrived and been assessed by the hospital, then told they were actually going to have to cut open my scalp, cut a square out of my skull and operate on my brain, my anger only increased. Could this really be happening to me ? Could things really be this serious? Well...most of you know I guess. I can hardly be unique in my thoughts and emotions. I spent the next 3 weeks in hospital, mainly pushing for them to release me back home. I am not a good patient. I was almost at the stage of discharging myself and making my way home. I had never spent time in hospital before. Life in a ward is constant disturbance, lack of privacy and general powerlessness. A private room is quieter, there is less disturbance, but the experience soon turns into a type of solitary confinement. Its almost a toss-up which is the worse. They are both bad in different ways. Fortunately for me, they agreed that I could go home after 3 weeks. Many people may have had to stay in hospital for longer periods I expect. For me, that would have been positively hellish. Six weeks later, there is now only one small scab left on my forehead. The scar-line is clear but where it travels onto the top of my face it develops into a kind of welt. As I say, this is largely concealed by my sideburn. I am more conscious of the scar than I thought I would be. I have never thought of myself as overly concerned with vanity, but I have not gone out of my house without covering my head with a hat of some sort. Baseball cap or woollen hat. I don't experience much in the way of pain. The scar where it reaches my face tingles quite often. I have regular pain behind my right eye and discomfort on the area of my skull that was effected by the surgery. I rarely have to resort to any kind of pain relief fortunately. When I do it's simply a couple of paracetamols. I am not noticing any difficulties mentally. If anything my short term memory seems better that it was before. My speech is not slurred and I have no difficulty in conversation. I am convinced that anyone who knows me, would not notice any difference conversing with me on the telephone now and before my SAH. I don't want to do anything much. I limit myself to small amounts of housework, domestic items and correspondence or financial chores each day. I will do perhaps 3 such items in a day broken up by reading and sitting down and resting. Concentrating can be an effort and I am only wishing to watch TV programs of 30 minutes or an hours duration. The thought of watching a film and concentrating on it for 90 minutes or 120 feels too much trouble. Reading, strangely, is totally different. A good book will engage me totally for prolonged periods without any difficulty or mental fatigue. Regular sleep patterns are totally disrupted. I basically just sleep when I am able, normally only succeeding at about 7 in the morning to 11 or so. I lie in bed and rest a fair amount but normally resort to listening to the radio or other audio files as sleep doesn't come. I don't want to see friends or family particularly at the moment. I don't think I am turning into a recluse but I feel like I don't want to go to the trouble of having people around and conversing with them. When I got home from hospital, the 3 weeks I had spent in there had weakened my leg muscles considerably. I felt unsteady and weak. I had lost about 1 & 1/2 stone in weight. Now I am able to walk about the house fairly normally and will start to go for outside walks, weather permitting, any day now. I will start of with short distances and work my self up to a 3 mile local route on the flat. I worry about future possible occurrences. I worry about how my lifestyle may need to change and also I have a heightened sense of my own mortality. I expect this is normal. Not just for SAH sufferers but for anyone who experiences a major medical problem. Well that's enough of an introduction for now. Hope to talk to some of you later and possibly to exchange experiences and maybe give and receive some insights.
  16. There seems to be some links with SAH and heart issues - so my poll is just to see how many of us later go on to develop heart related issues. I had my SAH 5 years ago with complications of hydrocephalus and I'm currently being checked out for heart issues - the symptoms of which I only really started to notice a year or two after my SAH Thank you for taking part in my survey! Snootybutnice x
  17. I think I have shared that I started a blog , pogoestifty when I was back in hospital again post my SAH waiting to hear whether I needed a shunt which did. I found it great therapy ever since and it allowed me to track my progress and share with family and friends how I was doing. I blog less these days but have just posted for New Year and I thought I would share some of my list on that post here on BTG which as a forum helped me so much to make my adjustment and peace with what happened. "So as we head to the start of another year I thought I would share my lost and found list of living and adjusting to life post my SAH bleed and the subsequent surgeries for that and my shunt James which has left my brain changed forever. I lost brain a lot of brain cells 8/3/2012 due to the severity of bleed and through the surgeries and hydrocephalus but I have learnt , regained and found new ways of learning since then and I now treasure and treat my brain a lot more kindly and tread a little more gently through life. I have lost touch with some friends since that time but have gained an understanding of what true friendship looks and feels like. I am blessed to have the people that I do and I don't ever take their friendship for granted. I just hope I can one day help them the way they have helped me . I have lost a lot of worry and fear, it's strange how an event that forces you to know your own mortality can do that but I have found I am much more at ease and accepting of situations and really don't worry about much. I lost a little of my ambition. Well I think it's safe to say I have realigned it to the possibility of achieving whatever my current state allows but in doing that I have found I enjoy just doing what I do, for now anyway. I have lost respect for people that just moan and witch about everything and everyone without doing something to change but have found courage to walk away and distance myself from that. You don't ever need that stress in your life and it appears my brain hates the effect of it therefore I do not allow it in mine. I have lost a lot of social fun times and this has been hard to adjust to as you see I liked a bit of scene, a party, a loud concert but I have found I adore a 121 conversation just as much these days , it requires less energy and booze than dancing on a table and I don't care too much about the subject on offer as long as it's one that interests, intrigues or inspires and is with good company. I have lost living for tomorrow or in the past. I have found I can only do what I do and live in today and with a bit of luck and a fair wind I will have another one tomorrow and if it doesn't well I can say,'well today was a good sort of day' I have lost the ability to sleep completely flat due to the effect of my shunt at night so now sleep Barbara Cartland style propped up on cushions but without the pink nighties and feather boas but have found that you really can get used to and adjust to anything if you keep a positive outlook. I mean every time I forget and tip my head to far or back I get to hear my gravitational valve work and move, how cool is that, I get to hear the internal workings of the rubies at work with the hamsters. I have lost count of the pills, procedures, scans and doctors I have seen but I have found that progress is best measured by looking at your lowest point and then where you are today, nothing else really matters. I have found it always good to try help someone else no matter what your struggle is and so I have the lost the inhibition to offer help if I think it's needed. I have lost the feeling that I have to go it alone for something to matter or be worth something and learnt it's actually better to #lean in , you can take the corners better and it makes it easier to hug other people if you do. " What did you find and lose? Happy. Healthy 2016 to you all.
  18. 3 months ago I was at the gym when I had my SAH. I don't remember much being in the hospital for 2 1/2 weeks, but I remember having the SAH. I didn't have an aneurysm though. It just bled, as I was told by my doctor, from the base of my brain. My recovery has been pretty good, but unfortunately I did have to have a shunt put in. To be honest, this pretty much terrifies me if the shunt malfunctions. Maybe I'm overreacting, but what happens to one when the shunt malfunctions? Will I have enough time to get to the hospital? I've looked into getting a Endoscopic Third Ventriculostomy. I'm going to an appointment next week and going to ask the doctor if I'm a candidate for that surgery. Anyway, does having a shunt terrify anyone else here other than me? Paul.
  19. Hi all, I just wanted to start with saying how glad I am that I have found this forum and that this is my first post after reading through a lot of the topics which have been really helpful. I should probably start with a bit of background. 3 and a half weeks ago my Dad collapsed at home following an SAH and within hours had the complication of Hydrocephalus; 18 hours later and 3 different hospitals Dad had a EVD fitted and a coiling procedure. Within a week the drain had 'blocked' and it was removed. He has since had 3 lumbar punctures and it has been 10 days since his last one. He has also had issues with regulating his sodium and has twice dropped to a very low level, they are now managing this with slow-release sodium tablets. At the moment he is currently still in hospital in a medium-care neuro ward. After speaking with the nurse yesterday he is no longer having BP/heart rate obs etc and is not receiving any PT as he is able to walk/move limbs and no speech therapy as he is talking clearly and grammatically. The most obvious problem for Dad now is that he is having difficulty with his memory in a number of ways. A lot of old memories have been brought to the fore; he is having trouble with new memories in that some are not 'sticking' and others would never have happened (like driving to the hospital that morning or going to one of the other patient's house) and could be considered 'fairytale'. We (Me and Mam) visit him for 3 hours a day and have been talking through where he is and what has happened; which seems to be 'sticking' a lot more in the last few days. We also talk through why the 'fairytale' stuff could not have happened. So these are the main areas that I could really do with some help and guidance as I can't really find anything much on the internet. 1. What should we be expecting/asking for from the hospital (we are in the UK) and what should they be doing for Dad 2. What can we do to help him recover, feel happy and make sense of everything that has happened. 3. What helped you the most in your recovery? I'm sorry for the really long post, its the first time I've written all this down. I would be so grateful for any personal experiences or websites that you could direct me to. Thanks, Laura
  20. New Member - Joanna

    Hi there I've just joined 'behind the gray'. Late November I was teaching my Grade 12s when I got a sudden, severe headache. I went to get painkillers and luckily one of the office staff realised I needed more than paracetamol. An ambulance was called, a CT scan was done and I was told I had a bleed on the brain as I was pulled out of the machine. I have to admit I had pretty much come to that conclusion myself. I then had to be transferred to another hospital where I needed immediate surgery. You all know the way I was feeling I am sure as my blood pressure was through the roof and my limbs were numb. I thought, "this is it....". But to make things that much more difficult we had only just moved to Japan (from New Zealand) in August. English is not widely spoken where we are and I had not really had a chance to learn much Japanese. 'Diajoubu' was said to me a lot by the doctors and nurses.... I was diagnosed with SAH caused by a ruptured aneurysm. The doctor explained (through a translator) to my husband that it was right in the middle of my brain so a coil was much safer option than trying to do a clip. He was also told all the other terrible statistics. Luckily, I came out of the surgery with little obvious damage. They said I would need to have spinal taps every day for a couple of weeks but in the end I only had to have them about 5 times. They decided to stop them for some reason. I did have severe headaches for a couple of weeks. The Japanese tend to dish out far less painkillers than Western doctors..... After a few weeks I had more MRIs and a catheter exam. This exam showed a remnant of the aneurysm that the coil was not covering. I've been home for about 2 months now and have had another MRI recently that seems to show that the remnant has gone but they won't know for sure until the next catheter exam. My eyesight is definitely worse. I have had to get glasses for computer work. I am also starting to realise that my short term memory has been affected. I still get headaches at times but I only take the painkillers now as needed. Anyway, so that's my story in brief. I would love to hear from anyone else who has gone through this in a non English speaking country. Although the medical staff have been lovely in both the hospitals I was in, it has been frustrating and difficult either making myself understood or understanding them. A lot of my questions went unanswered. Thanks for reading! Joanna
  21. Hi there, I'm new to this forum. Initially I wasn't going to look too much into sah recovery, since I didn't want to cause anxiety or fears about what to expect. I know we're all different & I've reached a point where I just need to ask other sah 'recoverers' this question.... Have any others found that, since the bleed, neck & shoulder muscles spasm or ache, a lot? I had a coil fitted on the 18th feb this year (2014) & things have been tedious as I'm sure many of you will be aware. However, I've been making strides as much as I can, initially coming off as many of the medications as possible, which has helped me a lot. One of the things that has been the most trouble for me has been the relentless onslaught of neck/shoulder issues, which I never had before. To begin with I actually thought it was one of the meds, so I came off it. There was an improvement for me, but I'm constantly plagued with this neck issue & feel that it must be related to the sah? (Central nervous system and wotnot) I've never been so ergonomic in my life, trying all sorts of things to try & help it! I've also had a constant issue with a "headache" (but its not really like a headache as I'd have known a headache before the sah) that starts in the neck - especially if my head is very slightly down. (Again, I'm suspicious of it being a muscular issue) At this point, I suppose I just want to find out if others have experienced this? I've yet to go for my follow up scan since I got lost in the system & accidentally discharged. My gp sent a letter & I need to chase it up. My reason for delaying is because travelling in a car brings on something I can't even describe, it's a very very weird sensation that starts, I think, where the brain stem begins in the back & travels up into the head. It has improved somewhat over the last month or so, but I have a bit of a fear of it! I feel certain it will go but I'm not sure why I feel so sure of this. (Hopefully intuition & not wishful thinking). I did do a search for muscles, but haven't found any similar experiences from others stories? I hope all who've posted & read are constantly improving. I met a lady a few weeks ago who had a sah over a decade ago, she was a wonderful person for me to meet right now because after about 1+yr, she felt more or less normal and pretty good. She said that in the years since it happened, she is BETTER than she was before the sah because the recovery made her make a lot of good changes! She goes mountain climbing & kayaking & is a true picture of health & vitality! I just thought I'd add that in at the end, since I found it helpful & encouraging.
  22. Hi everyone I felt the need to come back on here after receiving some news this week from the hospital I was coiled at 4.5 years ago. I had a follow up MRA on 8th March this year and then had a follow up appointment with a Neuro consultant 19th March. I have been waiting since then to hear when they might repeat the MRA. In my mind, as there has been no change to my coiled PCOM aneurysm I had assumed I might get scanned again in about 3 to 5 years time... When I was at my appointment on 19th March I happened to notice an email on the consultants PC that was about me (attention to detail or just nosey...) and it mentioned that the "ICA is less conspicuous now"... I naturally asked what that related to and the consultant calmly advised that it was nothing to worry about, it is just a very small 'blister' in my brain that they have been keeping an eye on (what the hell???) and that it cannot cause another SAH so it is nothing to worry about. I left feeling a little unsure about this explanation, as in my mind a 'blister' could also mean an aneurysm!? But I tried to trust the consultants judgement. On Weds this week (08/07/14) I finally received a follow up letter from my appointment in March! (It has never taken this long before...). It reads, and I quote; 1. "In Decemeber 2009 she suffered grade 1 subarachnoid hemorrhage and underwent coiling of a right PCOM. She is also known with a small cavernous ICA aneurysm" 2. "the patient has been well and has stopped smoking" 1. The spelling and grammar is atrocious! Also they are now telling me that this ICA is in fact an aneurysm!! I specifically asked at the appointment what that meant and he specifically called it a 'blister'. He could have actually explained then that it is another aneurysm. I would possibly not be quite so stressed about it now! 2. That sounds like I have recently been smoking but have recently given up. Fact is I have not smoked since January 2007, which is actually 3 years before I even had my SAH in December 2009! I have called the Neuro dept today and spoken to a secretary who was going to email my specific Neuro consultant (not the guy I saw in March as I tend to see whoever is available, I have seen my Neuro consultant once, 3 yrs ago). The secretary was really good and completely understood my concerns and she hoped to get an answer today for me but I did not hear anything so I am hoping to get an answer on Monday now. The letter does state that following their review they have decided to scan me again in 2 years, so I guess this 'small cavernous ICA aneurysm' is not a problem then... But I do need to have some questions answered. Like; how long have I had it? How small is it? What could it cause if it gets bigger, if not a SAH? Questions I now need answered! It's not devastating but it's not great is it?! Kel x
  23. Hi there, My mum is 48 and had a SAH on the 19th of March 2014. She had the coil operation on the 20th of March and was discharged from hospital on Monday the 7th of April. Whilst in hospital my mum also had vasospasm, seizures and hydrocephalus. A lumbar drain was used to deal with the hydrocephalus and she is on keppra 500mg for the seizures. I was so pleased to have mum home and have been doing my best to look after her but she has had a constant sore head since she's been home. She tells me that the pain isn't getting worse but some days she can barely do anything apart from sleep or hold her sore head. The pain relief she has is codeine 30mg but this doesn't seem to have much impact. She finished her nimodipine course at home and then restarted her blood pressure tablets. I know that I am lucky to still have my mum with me without any major physical problems but I feel so helpless to see her in so much pain! She's been home for a week now and thought I would see some sign of improvement. This Wednesday will be 4 weeks since her SAH, and I know this is still really early in her recovery! How can I help her? Any tips for dealing with a sore head? She doesn't think she needs a doctor but when do I phone for advice? I have an oximeter, blood pressure and heart rate monitor and home and all of these things are fine. She's eating breakfast and dinner and drinking fluid - I've even got decaff tea bags! Some advice would be great! I want to look after my mum - I don't want her to get unwell again! Thanks, Chris
  24. Hello,I'm new here. . my headache actually began two days earlier,but those were nothing to the incredible pain that began in base of my head,I could only think this was like getting kicked in the head by a horse! I assumed it was a migraine as currently, there are many stressors in my life.. but it got worse. I felt nauseous, my eyes and ears were pounding and throbbing.i felt weak. Finally, I went to the ER, where after vitals,et Al. . A cat scan as ordered, when they advised us I would be admitted. . An angioplasty was completed and I was finally told I had a bleed, located behind my right eye, above my ear. They were unable to locate an aneurysm. After 5 days in ICU, I was released. I still have headaches, I don't feel the same and I have practically no energy. I realize I have this now,but as I read other stories,I think others had a way more traumatic experience. And I wonder, if it was really a SAH. A week later,I was on the phone the with my doctors nurse who, as I told her I was not feeling very well, advised me to go to the ER again. This time, the bleed had been absorbed. I finally see the neuro on Thursday.
  25. Head Dent

    Hi All Love this forum it is like having some friends who can actually help! Last night (I have been feeling worse this week) I touched the spot on top of my head where the EVD drain went in after they made an incision and there is suddenly a noticeable dent that was not there a few days ago. My husband thinks that I am mental by the way, with my ever changing symptoms Is this normal?? I am terrified my head is caving in. Surgery took place on July 18th and it is today Sept 14th. Could this have anything to do with me feeling worse this week or am I being paranoid? Thanks Guys XX:crazy: