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Perimesencephalic haemorrhage with EVD
Lori D replied to RuthB's topic in Non-Aneurysm SAH or Perimesencephalic SAH
Ruth, Sorry for my delayed response. For some reason, I don't always get notified with people's posts. I couldn't agree with your third paragraph more. I do get overwhelmed more easily, struggle with some short term memory.. but then also wonder if that's just getting older, haha. I also find it sort of hard to explain the differences/struggles in general. I would be frustrated with the zero follow up! That's ridiculous. However, if they have definitely diagnosed perimesencephalic, recurrence is definitely rare. So I guess that is reassuring. However, I have found through this whole experience, you most definitely have to be your own advocate for your health. I have found a few women with similar stories, (postpartum SAH) but nothing is ever exactly the same, or our neurologists say different things. So it's just so hard to pinpoint. Thanks again for your response, and hope all is well. Lori- 12 replies
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Child birth after AVM
jess replied to Jannaaarstad's topic in Cerebral AVM's - Arteriovenous Malformations
Hi there I have had two children naturally since my sah caused by ruptured aneurysm I had two brain aneurysms both been clipped xxx I would really try not to worry though and speak to your Dr they wanted me to abort my first child (thank God I didn't listen my neurosurgeon said I would be fine) get in touch with your neurosurgeons office someone will be able to help xxx And congratulations on your baby xxx -
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Reapplying for license with exceptional circumstances-UK only
Johnnie M replied to Daffodil's topic in Driving After SAH
Holy thread revival Batman!! So, how's the process of getting your licence back going GC? It's gone so quiet that there may not be anything to relate but have you had any luck, or forward movment, with the DVLA application? JM -
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Hey Andrea, Well done on getting to this milestone! All we can all do is carry on, but we have to adapt. Change happens - all we can do is help you adapt to deal with it in the best way you can. The way I'd look at it about your Mum is that she was there and helped get you on the right road to recovery, even though she was battling her own issues. What a lady!! And you were privileged enough to have her as your Mum! What better legacy can there be than that? Your battle probably inspired her to go on for as long as she could - that's what I call an inspirational lady. You? Well you're a chip off the old block! Carry on and enjoy your life as best you can, as your Mum would have wanted. Have a tear now and again but just remember it was your Mum that made it all possible and on those occasions, raise a glass and say 'Thanks Mum.' Here's to year 5 Andrea. May it be a good one for you. Macca
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Child birth after AVM
Skippy replied to Jannaaarstad's topic in Cerebral AVM's - Arteriovenous Malformations
HI there and welcome to BTG. I' not sure that any of our members have given birth after an AVM but there are a couple who have since their SAH. You say your neurosurgeon is no longer practicing, but surely there will be someone in that department who can look at your records and and your case and advise your Obgyn accordingly. Ask them to write to them as your surgeon is no longer practicing. -
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Hello! About 6 years ago I had an AVM bleed on my frontal left lobe. I had brain surgery to remove the AVM. I am now 6 months pregnant and my Obgyn wants written consent from my neurosurgeon on whether I can have a natural birth or if a csection is needed. The problem is my neurosurgeon is no longer practicing. Just curious if anyone has giving birth after brain surgery to remove an AVM and if they did it naturally or had a c section.
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Thanks everyone for your kind comments and advice, it's greatly appreciated.
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I was a similar age to you when I had my bleed (I was 39). My advice would be: - Drink lots and lots of water - Have a lie down or nap, even for just 1/2 hr, every evening - does wonders to just give your brain a little rest for a while. I had a whole year of this and still do it when stress levels are high - Take it easy with work. I had 3 months off and then 3 months building back up to full time. I'd recommend either Fridays off to give you a long weekend or Wednesdays. Wednesdays I found particularly helpful so that I was only working 2 days at a time - Build up your own confidence regarding exercise. Whilst I can't prove it, I'm sure strenuous in the days leading up to my bleed had some effect. But that's my own thoughts. I built up slowly, maybe only managing 5 mins walking at first (I was afraid to go out of sight of the house). I have found swimming to be an excellent, low impact exercise. I've recently gone on my bike for the first time, managing ~18 miles. Wonderful to have that freedom again (with a helmet of course!!). I wish you all the best in your recovery. Andrea
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Hi Ben, So glad you found us. You will be the one who knows if you are ready to go back to work. Having a bleed is so different for each of us, we all have a different time line. I went back to work before my Dr. thought I should, turns out he was right but after a couple of iffy months I was okay and still working. I am quite a bit older than you 66, 64 when I had my bleed. Even though you feel lucky for not having any major impairments when there are things not working the same as they did before in our bodies it is worrisome. You are early in your recovery, our brains are an amazing organ and will keep healing. I wish you well as you continue to recover and get back to your bike Jean
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Hi Ben warm welcome to the site, glad that you found us. don't worry they will extend your sick line its still very early days for you, take things easy rest lots and keep hydrated, slow and easy does it. take care
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All what Michelle has put Ben and hope you feel a bit better soon ..Slowly does it and keep well watered/drink plenty of water xxx Scary stuff but when you can talk to others about good days and bad days it is getting it off chest .. I have come on here all doom and gloom and left smiling . Do not get too stressed as that is bad for us, so sing, do anything to keep yourself happy. Good luck on recovery and remember it is early days so listen to your body xxxx Take care of you !! Win
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Hi Ben, Welcome to BTG as we call it, So sorry to hear that you suffered SAH, you will find a wealth of information here and we are all a big friendly bunch of people, it is also a nice feeling to know you are not alone after such an event. We are not allowed to give medical advice as non of us are qualified to do so, we can however share with you information about our own experiences. It is still early days for recovery wise that is, try not to push yourself to hard, make sure you get plenty of rest and stay well hydrated, staying well hydrated really can help with the headaches, There are a few members who are runners and into keeping fit, I'm sure they will come along and share their own experiences with you, although we always say make sure you take advice from the people who are treating you before doing any exercise. The recovery road can be a bit bumpy at times, fatigue is one of the side effects, listen to your body and your brain and if you are tired, try to rest, as both your body and your brain have suffered this trauma and they both need time to recover. Anyway try to be kind to yourself, I wish you continued improvement as you go along with your recovery journey. You can also pop into the Green Room where there is lots of daily banter, you have come to a great place for help and support and you will make a lot of friends as you go along, look forward to hearing more from you. Love Michelle xx
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Hi All It's great to have found this site which has so much helpful information I had quite a few unanswered questions since leaving hospital which have been addressed by reading people's experiencess. Thank you to all who have took the time to post them. I experienced a perimesencephalic subarachnoid heamorrhage 3 weeks ago whilst cycling to work, initial symptoms were a rapid on-set headache and neck pain that became worse as the day went on with vomiting. A CT scan within A&E detected a bleed the following day so i was subsequently admitted and had an angiogram 2 days later and commenced a 3 weeks course of Nemodipine. Previous to the bleed I was fit and active 43 year old, cycled most days, non smoker, eat healthily etc. Since leaving hospital ive had a few minor health problems; acute pain in my glutes and lower right leg which has now resolved; severe throat infection; Tinitus in my left ear and mild pain radiating down from the top of my head in to my left ear. My main concern at present is that food taste's strange and have a permant salty taste in the back of my throat which initially began as a foul bitter taste. From what I can gather a few people have experienced this which may improve in time? My sense of smell has also been affected. In context to what other people have endured I feel lucky not to have experienced any major physical impairment. My hopes for the future are to get back to cycling asap as I have a mountain biking holiday planned abroad in November which was booked last year. If this is safe and whether I'll be fit enough is questionable? So far I've been on a 8km walk and a gentle 20 min swim which wasn't particularly challenging. On discharge from hospital medics advised waiting 4 to 5 weeks before recommencing strenuous exercise. They also provided me with a 6 week sick note but the thought of going back to work in a coup,e of weeks feels a bit premature so may need to get that extended by my GP I wish everyone well on their road to recovery.
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Welcome to the site. We cannot give you med advice but you ll see many helpful threads. you should also see neuro ophthalmologist. Good luck.
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Hi William, Welcome to BTG. Casey raises a good point. Tiredness is usually a factor when this happens. Good rest is as important as good work and play. Also keep hydrated, lack of which seems to be a common contributor to headaches as is well documented on this site.. For sure your doctors are the ones to ask to check things out and provide reassurance. Not everything is linked to SAH but it tends to unfairly get the blame in a lot of cases! However it sounds like your diagnosis has been a bit vague from the way you write about it. So get checked out properly. Short term memory is a common problem but there are ways to combat it, ie by repetition until it becomes a long term memory, writing things down and so on. However, the bottom line is to get yourself to a specialist to check you out. A general practitioner, no disrespect, is not enough - they rarely know enough about brain injuries to give an accurate, or in some cases, the right diagnosis. So go and get checked and let us know how you get on. Better to be safe than sorry. Don't be shy about it, there is a problem you have identified and someone needs to do something about it. Your mission is to get to see the right person that can give you the right tests and information. This is your life we are talking about so don't put it off, get it dealt with, and by the way, well done for opening up about it! Now it can be dealt with! Always here if you want to discuss more - but we can't give medical advice, for a very good reason - we are not qualified - so go and see the people that are - your doctors. Please let us know how you get on. Good man WIlliam! Regards Macca
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Hi William I had an SAH 4 and was out for a while ..I went home as hospital said I'll never be the same ..I didn't even remember a thing about it !! I knew what was going on when I awoke in hospital after shunt for hydrocephalus was fitted ..This was in 2009 fast forward to 2010 as that's when I woke up for real. as scared the next step was death for me ..meanwhile my Daughter found this site. It was a Godsend for me as I saw people on here who laughed and joked so I knew there was a life after SAH/Bleed. Now fast forward to now I am deaf in right ear also and although I laugh it is getting to me Grrrr. Echo sounding in ear been to Audiologist and he put a tight earphone on my shunt and I told him it was hurting my shunt. He had never heard of SAH or knew nothing about shunts filled me with confidence Not !! Good luck and any problem shared does help us as I know once I woke up hubby wasn't as nice as he had been lol ..But he was there for me the time I was in Deep trouble with bleed.and other problems ...Welcome Survivor xxxx We are all Survivors good and bad days xxx Can walk 800 yards then back goes but after being told I'd never walk it is all a bonus xxx Speak Up lol
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William, sorry your symptoms have gotten worse. I had a nasah in 2012. I had similar symptoms except fot the gait. My double vision corrected itself quickly. I had trouble with my words as well. I still do sometimes if I’ve over done things. Do your symptoms seem worse. When you are tired? I’ve learned if I fail to hydrate well and try to push through ,when I know it’s time for rest, I pay a price!
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With many thanks to those members who are making a monthly donation towards BTG funds.....It's very much appreciated.xx
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Hey all. New on here so go easy on me 😁 Long story short: 2014 - I was diagnosed as having a Non-Aneurysm SAH. The onset symptoms were a so severe that my GP thought I'd had a full-on stroke. I got a shooting pain in the back of my neck and was unable to turn my head without it being excruciating. Initially I felt like it was a muscle spasm but then the classic thunderclap headache and offset gait snuck up on me. The hospital I went to were perplexed at first. I had a CT scan followed by an MRI and then a spinal tap/lumber puncture. I was discharged after a week and told to report back with any immediate symptoms. In the weeks following, I saw an ophthalmologist for double vision and hearing loss on my right side. Then, six months later I was sitting at home an experienced a severe dizzy spell (much like a sudden vertigo onset). I (stupidly) chalked it up to exactly that and went to bed. Woke up after sleeping 16 hours feeling no better. My wife took me to hospital and they immediately admitted me in the same way as before. After another MRI, I met with a neurologist. He told me that the MRI results identified a cerebrovascular issue and that my brain was not adequately getting the right balance of blood/oxygen. I was prescribed verapamil for daily use. Fast forward to 2019, I recently saw a new neurologist for a checkup. My primary issue of late has been significant short term memory loss. They have referred me to a neuro psychologist to get this assessed. Other than that, the medication I use helps combat the following: - Sudden headaches that begin behind my eyes with aura (much like an ocular migraine) - Pain in my ears and an echoing in my hearing - Speech disruption The speech disruption has me very confused. I will be speaking normally (usually when trying to explain something) - For example: "The weather this weekend is supposed to be bright and sunny" But instead: "The weather this benefit will be bright and sunny" This seems to happen a lot more these days. The word confusion is worrying for sure, tied in with memory loss. Anyone else on here have a similar experience? I am yet to find anyone else with such complicated (and ongoing) pathology.. Thanks folks!
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Think we are all anxious as what we went through is so scary Irene ..We are / were the tough ones in our family. Then when it happens to us it is hard to take in. I get anxiety but it isn't good for us. Can control mine xx I sing lol My neighbour called ambulance as he couldn't breath and his mouth dried up. He thought it was another heart problem. I took him round a packet of peppermints and a bottle of water as he has anxiety attacks like my Daughter does....So my Daughter went to Docs and Doc listened to her heart and she said it is fine. Only you can stop the panic. I told him loads of people have it and it cheered him up. This was when she was 15 and she has now learnt to cope with them...hard to do though. She is in her 40's now my little baby ha ha Wishing you all the best and I've already wrote to you oops sorry Mods as I didn't see this until I replied to other post !!
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Hello Irene, It helps to know we are not alone so that is the first step. You need calm in life and happiness so Wins orders are for you not to listen to others troubles. Keep away from any stress situations all though life is full of stress... I sing to get out of stress related situations ..Upsets my family as a bad singer. Welcome to the site, its has helped me no end ...just to go in Green Room and pour out my worries and know people understand Good luck and welcome survivor xxxxxx (was cooking a curry when I had SAH/bleed ) It must be the food that causes it lol Keep Well Win xxxx
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Hi Irene, I found it very comforting to read others stories, I still do. Now that I have my wobbly little sea legs under me I am so happy to reach out to others as they come on board. xx Jean
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Thank you Jean. It is so comforting to hear people’s stories and how they are getting on. So glad you are able to carry on your life and have had some fun too. Xx
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Hello Jo-Anne and also a warm welcome to BTG from across the waters. Glad you are finding the site helpful. Headaches is one of the debilitating side effects post SAH. Everyone is affected differently by the levels of severity. You will find that increased stress, not keeping hydrate with plenty water and lack of rest throughout your day my have a baring on how you are affected. Don`t hesitate to contact your medics to get peace of mind. Looking forward to hearing more about you progress in the days ahead. Please feel welcome to visit the Green Room where you can take part in the daily banter. There is always something there to make you smile and take your mind away from living with SAH recovery. Subs
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Hiya Charming, Also a survivor of SAH 4 and I didn't remember being ill. I did see my Parents who wouldn't speak to me. Weird dreams and a load of gobble de gook I spoke ..bit like now ha xx BTG/this site got me smiling again and singing to some others dismay ha ha..I knew I wasn't alone in this once shunt was put in... Good luck Keep taking the water xxx You have done really well xx Win xx
