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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

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

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

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.

Yesterday I went for a neurophsycology assessment which my neuro team referred me for and I thought I would share how that went. My history is that I suffered a grade 4 SAH last March presented with hydrocephalus. The family were given a Very poor initial prognosis for me but after surgery to place a drain and a successful coiling I did tremendously well in my recovery up until the return of the hydro meant I had a shunt placed last July. Cut to now and I am on a gradual return to work and having many more good days but struggling with some cognitive issues, specifically concentration, reduction in previous depth of thinking and loss of words or misplacing words. At my last neuro check up the team thought it worth this getting checked so yesterday I spent the day in London doing just that. It was quite intense. I drank lots of water and kept my sunglasses on for most of it. It involved a lot of observation tests ( a lot of pictures of men from the 70's it seemed) and also memory ones as well. Mental arithmetic was checked and then there was the logic tests and word association and ' what's missing here' pictures. It went ok I think. I couldn't do some things at all though. Guessing the shadow animal I eventually said for one ' llama' just to say something Also during the test where I had to name as many animals as I could my brain kept saying ' banana' over and over.....managed to keep that to myself though so that's got to be progress. The outcome will be reviewed and I get to go back in a few weeks to get results to find out if there are some things affected that I can work on so it'll be good to know for definite rather than my kids just pointing out when I say something silly in the wrong place. They also mentioned they are doing a workshop for people who've had SAH so they would talk more to me about that when I go back. All in all an interesting and non scary experience. Hard work. Tough doing the train there and back. Mentally tiring. But overall good. Anyone else had these tests? What was the outcome?

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:

Hi all Well I was feeling better and now for 2 days have been nauseous. Was sick once yesterday. However if I tip my head to one side it feels like everything then moves in my head about a split second later. Could the hydrocephalus be returning? It is 9 weeks since they removed the evd and a scan 3 weeks ago showed no fluid. Do othes have this dizziness feeling? Where do you go for advice.. Thanks xxxx

Hi there I am now 10 days out of hospital after having a brain bleed which resulted in a clot which they are hoping will absorb itself. I had an angiogram and MRI during my two week stay in hospital, as well as having an EVD draining fluid for 6 days. The consultant could not find an aneurysm on the first scan and I have to go back for another MRI and angiogram in 3 weeks - I have just turned 34 three days ago. I am terrified. I have a one year old and a four year old and am finding I have good days and bad days but the sickness is getting unbearable! I am on Cyclizine but if I dont take it I can be so sick. Is this normal three weeks post op?? Am very scared and worried. Why has this happened! Thanks Jo

Hi, I'm not sure if I should post here or in the avm section but here we are.... Three years ago I had a large avm removed and suffered an SAH during the 14 hour op. Because of the SAH I completely lost use of my left side and had to spend six months in a rehab hospital learning to use my left arm/hand/leg/foot etc again. A horrific time and one which still terrifies me today. Three years on I'm still suffering the after effects of such a huge ordeal. I can walk unaided (albeit a bit clumsily) but have v little use of my left hand and only some small use of my arm. I have many other problems due to the avm/SAH but I'm just detailing the physical problems here for purpose of this post. After the craniotomy the hospital did a follow up angio which they were surprised was clear (the prof thought there'd be some residual avm left). Then two years later, I had an MRI with contrast dye as another check to put my mind at rest. They told me the MRI doesn't show up small parts but they were 95% sure it was gone. He slso was satisfied an angio wasnt needed. I was happy enough with that and was discharged. However, when I saw my rehab consultant (6-9 monthly check up) I told her I had been having headaches lately and had noticed again a slight noise in my right ear. The avm was originally found because of a v audible and loud whooshing noise in that ear. Because of this she referred me back to the professor who discharged me last year just to be sure. I saw him today as a re-referral. As expected he said they would do an angio purely to put my mind at rest and also obviously to check there was no avm left. I explained I was literally terrified of an angio because of the risk of stroke but he just kind of said well its the only way you'll be satisfied. He's right in a way; obviously I'd like to know 100% but I absolutely don't want to have another angio and risk another stroke. I am so frightened that it'll cause a stroke. I know the risk is roughly 1 in 1000 but I also know my luck and that if one persons going to have one it'll be me. The thought of going back to square one - that terrible, dark place of losing mobility and working working working constantly to get tiny parts back is too much to bare. I just can't face even a slight chance of it happening again. The flip side is what if an angio does show up residual avm and basically it gets caught before it gets massive like the last one? Or, i don't have one and end up cap in hand back there again in ANOTHER years time? I have trouble making decisions as it is but this is even worse than usual. I feel like its a toss up between a rock and a hard place. Does anyone have any experience and/or advice on what the best route to take is? Or helpful stats? anything! Any help would be truly appreciated.

Please go easy, this is my first post, might be in the wrong section, sorry if it is, might offend some, sorry if it does, no intention to, just need some help, I am wanting to know how other people with SAH Haemorrhage are suffering, I want to know if what is happening to me is normal. Mobility Issues (starting to get worse) Leg Pains Left hand shakes a lot Body Convulsions Depression Headaches General pain Hearing Stuff Seeing Stuff Smelling Stuff Throwing Drinks over myself(or food) Incontinence at times (Urinaly) through not being able to get there on time I spoke to my doctor about him sectioning me, he said the fact that I asked about it shows I do not need sectioning. But I can not cook, taking care of peronal care can take in excess of an hour, I can not work, I can not walk my dogs, everyone wants me to give up smoking (a contributing factor rather than the cause of my SAH) but how can I with all this going on. I have really bad thoughts, but I would never act on them I feel it is a selfish thing to do (just my opinion, please do not judge me on this). My doctor has been great and it seems now like help is starting to trickle through, just had our first financial problem, think we have 2 more months before our lives fall apart in that way. Had my SAH aged 34 on the 1st of feb, 1 week in intensive care, 4 weeks in a ward, I was walking around, my only issue was pain, now look at the list. Yesterday, I was walking on frogs (seeing stuff) Smelling toffee apples, my dog I kept thinking was dying, I kept letting my cat in but it kept getting back outside, no windows or doors open. I suppose I was hoping to hear about how other people have attached things to their SAH and not feel like I am going nuts, even though I sort of am, lol Cheers to those that can help me.

Hi everyone, I'm Nicola age 45 and I thought I'd give you my story. I had an SAH 2 weeks ago today. My partner phoned 999 and luckily, although they assumed a migraine, they took me into hospital for tests, just to be on the safe side. They found a bleed on the brain and so transferred me to Southampton Hospital. At Southampton they did 2 scans and found no aneurisym so they could not tell me how/where the bleed came from. Around 4 days later they advised I had hydrocephalus and they then did a spinal tap - taking around 2ml fluid (which was yellowy/blood stained) which helped to reduce the blinding headaches but gave me cold sensitivity in my face - rather like sinusitis pressure around eyes, nose, cheeks, forehead and also around my head. It helped to keep a towel on my head to retain the warmth for the next 2 days afterwards. I also had high Blood Pressure although the readings didn't mean much to me - something like 145 over 80, 170 over 90, 155 over 80. I'm not so sure of the second figure but the first figure averaged around 148-155. Gradually the pain has moved down the spine and settled in my coccyx area - which is great because the headaches are less frequent and less severe but it brings with it very painful spasms/cramps in buttocks and what also feels like cramping pain in the cervix and deep within the coccyx area. When the spasms start it's hard to walk or move. I'm hoping this will quieten down soon as the blood gradually disburses through the body. I went shopping yesterday for several hours (12-6pm) and was really surprised that I felt energetic enough to do it - I had lots of rests/sitting down but other than 3 bouts of headpain lasting around a minute or so, I felt OK and like my old self. However once I relaxed in the car and got home I had problems getting out of the car due to bad spasms/cramps and I still feel very tired today. I obviously overdid it - but when I 'overdid' it in hospital, ie. like walk too far, I would get so much pain I had to stop. It seems that my body wasn't so vocal this time and I paid for it in the evening and today so I now realise I need to pace myself better. Today I decided to get my eyes checked as I'm still getting eye strain type pain and my old prescription hadn't been working for me for a while - so I thought I'd best get it sorted rather than agitating my current headaches with eyestrain. The optician wasn't happy with what he saw, and has now given me a letter to pass to my GP to ensure that I am seen by a specialist within 1-2 days, because he could see a haemorrhage in the top of my left eye, and both eyes are showing pressure to the nerve area (he showed me photos they had taken of my eyes showing all the veins etc, and usually you can see a very defined circle, which is the centre of all the nerves in the eye - but in my photos the circle was not clearly defined and this was due to pressure). He said had I not told him what happened 2 weeks ago he would have been sending me across to A&E immediately. Hopefully if there are any problems these will be picked up. I'm just wondering how many others have had eye problems or the cramp issues? Thanks Nic xxx

Hi all - unfortunately I find I havent posted here on BTG since I was still in rehab hospital in 2010. Here's a (hopefully working!) link to my original post... http://www.behindthegray.net/vbulletin/showthread.php?6272-Hi-All-Erin-AVM-Removed-SAH-on-9th-June-2010. Please excuse any typo's - i now can only use one hand when typing and have lost quite a big chunk of vision in the left of both eyes so often miss letters Ive now been out of hospital two years. Physio stopped pretty quickly after discharge so its all been down to me and I do my exercises at the gym when I can, although any slight cough or anything I get now floors me so that has to go on hold while im taking the exceptionally long time i need nowadays to recover! I I was unable to return to my old job in dwp as they wanted me back pretty much straight away which i just coldnt do so i had to take a package. its seen us ok isn and although im still not able to do a regular type job - im hoping i will in time to come. Im building towards it but the physical loss, psychological loss, fatigue and loss of vision side of things (plus many more ill not list!) are making that difficult. About a year ago I set up my own photography business - having ound the time now to explore the things I love and interest me. I enjoy it immensely and have made a few sales but its only a very small sideline really. The problem there really is that I find the sales side of it excrutiatingly hard,; I've lost a lot of family/friends and subsequently confidence since the avm/sah. What id like to do in the meantime is volunteering. Ive already applied to Brain & Spine (got a "we dont take/need volunteers, soz" reply from them - yeah, righto!) and headway which is a bit up in the air but really im getting nowhere! I'd like to help in the brain injury area as I have the empathy and experience but am open to most things. I'm also unable to do much 'physical' stuff but i can get around and mostly get by with just using one hand, but it obviously does have limitations. I still feel I have so much to offer. Has anyone had similar problems or any ideas in what I can do? Any advice / help / anything would be appreciated! :confused:

Hello All,I'm going to detail my story for the first time. I hope this will encourage some of you to share any imilar xperiences with me. I also hope that hearing my story may help somone else in a similar position. I knew my life was going to change forever on Wednesday 9th June 2010. I didnt quite realise how, or how seriously. I've suffered fom headaches for a long time, as long as I can remember in fact. When I was pregnant with my daughter 6 years ago I noticed a mild whooshing noise in my right ear but thought nothing of it - how stupid that was! It wasn't until I experienced severe strss at work late last year that I found it got much worse, and louder. The headaches also became more severe. I went to my GP who referred me to an ent consultant. Off I went, and after he did a few ear/hearing tests he said he thought it was probably pulsatile tinnitus. Because - and ony because - I was private he sent me for an MRI, just to confim. Had it been NHS this would not of happened. I had the mri a few days later and returned the next day for the results. Looking back, the radiologist and nurse who did the mri had a strange, concerned look on their faces that day; no doubt feeling sorry for me when they discovered the truth bhind the whooshing noise. The ent consultant held up my scan to me and told me I had a large AVM. He sent me home with no explanation and my scans. That was possibly one of the worst days of my life. 11 December 2009. My husband Alan was out, I had to pick the kids up from school then turned to the internet for answers. Th prognosis idn't look good. I was terrified, and rightly so, and I'll never forgive hat ent cons. for doing that to me in such an abrupt way. The next few days were spent in tears as I faced up the reality of my condition, but I had to wait another 6 weeks for information and a consultation with a proffesor ho specalised in avm's. In Janury this year I went to the avm clinic at newcatle general, held once a month. There I saw Professor Mendelow who explained my condition to me. I had a very large avm, a grade 4 (on a scale of 1-5, 5 being the worst). Great, mine would be one of the worse. He showed me his stats and told me my chances, explained the risks etc and said it had to be removed, if it stayed in it would most certainly hamhorage. I then began to have a series of embolisations to stem the blod flow and reduce the size of the avm. I had one a month for next four months. These went well and finally I had a craniotomy on that fateful day, 9th June 2010. To say I was terrified doesn't even come close. I was told my main risks were hemanopia, or risk to life, limb and mind. Very broad scope that but I signed the consent and went in for what should of been an 8 hour op. Bad enough in its own right but, things didn't go to plan. Why does that not surprise me? I suffered a massive haemhorrage uring the op, lost 15 pints of blood and it went on for 14 hours, not 8. I was sent to ICU where my husband sat probably dumbfounded thinking, erm, I didn't sign up for this. I then went to HDU where a few days later I came round fully, and was immediately made aware of my plight. I head them saying amid my haze of pain and confusion I had left side paralysis and that brought me back in the real world sharpish. As I became more awake I discovered the reality and what a shock that was. I'd had an SAH during the op which had left me with left side weakness. I couldn't move it at all. I was traumatised. I went onto a normal ward and began the recovery process. Physios told my husbands it would take up to six months to regain full movement. However a few weeks later theywere pleased with my progress - I'd been able to move my leg and arm and hand a little bit. I was transfered 4 weeks after the op to a neuro rehab hospital, which is from where I now type - very poorly, apologies. It's nearly 3 months since the op that changed my life forever. I'm doing well though, I have movement in my left side now and am now in the process of rebuilding and gaining strength in my left side. I have about another 2/3 months left in rehab. It's hard, learning to accept whats hppened is difficult. Worst part is mising my children (aged 8 and 5) and my husband. I see them every day as its near to home and weve all learnt to adapt to this situation and take each day as it comes as best we can. I do get down but mostly worried about whats i'm left with but I just try and focus on the day I get home permanently. The avm was successfully removed but I still need a folow up angio in January to be sure. If any is left I'd then need gamma knife. Please let it still be gone! My op meant I had an SAH. Its not the avm why im still here doing rehab - its the sah. someting i didn't even know could happen. Thats hard to take. The sah gave me left sided weakness which I now have to rbuild. I also have strange bright white 'blob' on my left side vision. Nothing they can do about this. They said it may go, it may not. Its very annoying but doesn't stop me seeing, just have a bright white light there all the time. I also have muffled heaing, upon hearing music. This again is very annoying but doesn't stop me hearing. Nothing they can do, again, symptomatic of haem. staying away from my family in rehab for months is very difficult but im slowly getting there. I am walking with physios and hopefully will be walking on my own by discharge - November time. My arm and hand both have movement but presently I can only include them in very few tasks. I worry terribly about this. On bad days I get scared I'l never be able to use them properly again. On good days I can see it improving and that I'll have them back in use to some degree in a few months. I'll leave it there for now - one handed typing isn't fun! Again, apologies for missing letters out etc. I'd love anyone to get in touch with advice on any of this. Namely, have any of you suffered with the left side weakness, or the impaired vision, and also the muffled hearing (music only?!) and how have/did you overcome this? Any advice greatly appreciated. I'll also be happy to offer any advice on my experience if needed by anyone in a similar situation. Thanks for taking the time to read my story. Erin

Hi, I had a grade 4 SAH in Feb of this year. Any and all complications that could have happened...did. But, I did manage to shock the doctors and survive, not only survive, but with just a few nagging side effects (vision problems and depression). Which brings me to the reason I am posting today. I was wondering if anyone else has had new or worsening depression symptoms since their SAH? My doctor is having trouble treating my depression because he says it's 'vascular depression' and that anti depressants won't work properly on me because of the bleed and stroke that I had. I was hoping someone here would maybe have some advice on how to deal with this depression. Thank you, Stephanie

Hi All. Had my SAH 14-Jan-2010 at 26 y/o. Was playing indoor soccer and was keeper, at that point had been playing that position for 20 years and is the only position I really know how to play, absolutely love playing. Anyway, first half, guy had a breakaway, I came out and challenged him, and as I slid in for the ball he took his shot. Took a full strength knee to my temple, and then my head bounced off the ground, which was just astro turf over cement. LOC of 5-10 seconds. Woke up saw everyone standing around me. First words were "Did I save it?" I did. After much ballyhooing I finally went to the hospital, had a CAT scan, and was then thrown into an ambulance and rushed to the Trauma center. Fortunately, they monitored the bleeding, and no surgery or operation was needed. Spend 24 hours in the Trauma unit before being released. Made pretty much a full recovery, however, I do have some sensitivity to noises. Certain frequencies or sounds or noises I cannot tolerate at all anymore, and they go straight to my head and I got excruciating headaches. Also just get headaches from time to time which never used to happen. Oh well, it could have been worse. During one of the many MRI/CAT scans, they also noticed a meningioma tumor, which is benign. I'm now subjected to MRI's once a year to monitor it. I do have a question... one doctor told me I couldn't play soccer (as keeper) ever again. Which was not what I wanted to hear. At all. Another doctor told me after 5 years from the injury I could start playing again. Anyone know anything about this or can provide feedback? Thanks!