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Hello everyone, I am so happy to have found this place!! I have felt totally alone with this for the last year and a half, and put a lot of pressure on myself to just get back to normal. I had my perimesencephalic subarachnoid haemorrhage in May 2017, and then developed hydrocephalus, so had an EVD in for 8 days. I was in hospital for a total of 11 days, and went back to full time, energetic work in the September. Now I can see it was way too early, but all I could find at the time online about this type of haemorrhage was that the prognosis was really good. I didn't see any stories from other people. Now I would love to talk to other people who have had the same thing - to hear their story and about how they recovered; to compare and contrast basically. Have you had a perimesencephalic subarachnoid too, ideally someone who also had the EVD? Please let me know, I would so appreciate to hear how the journey has been for you. Thank you, Ruth
Hi, Im Gemma and I'd like to tell you my mother's story and ask some advice from anyone out there who can relate. my mum had her SAH 6 weeks ago (7/3/17) My mum is 50, very fit, non smoker. She found out she had an aneurysm 8 years ago, as it was small she was advised to just have it monitored each year and was told it wasn't at risk from rupture. She had a seizure and went into a comma 3 minutes after the headache and sickness started. Her SAH was graded as 5 (highest grade) as she was in a comma with GCS 3 on admission and did not regain any consciousness for 4 days. scan showed 2 aneurysms, the new one (de novo aneurysm) was the one which had ruptured. She was put on life support to see if swelling would go down in her brain and 24 hours post admission coiling of the aneurysm via angiogram was attempted but unsuccessful. Clipping of the two aneurysms were later successful via craniotomy. Mum was in a comma on full ventilation for 4 days. She came round and was able to move all limbs and respond to simple commands. However on day 8 she suffered serverly from vasospasm causing her to become unconscious (GCS 5) and loose movement in her left side, triple H method was not enough to control the spasms even with her BP being maintained at 220 systolic so she underwent a chemical angioplasty. The spasms continued in a milder form up to day 20 when she was finally weaned off of noradrenaline. She also suffered badly with hydrocephalus (excess CSF/ brain not absorbing CSF) so she had to have her EVD (drain) in place for 20 days after surgery, She spent 3 weeks in neuro critical care and a further week on a neuro ward. she was released home with a carer. amazingly my mum is up, walking, talking, with only a 2% left side weakness remaining. Her only symptoms are extreme tiredness and substantial loss of short term memory/ lost ability to process/ sequence in the way she use to and moderate confusion. she has amazed everyone. She has no memory of the 2 weeks prior to her SAH or anything about the ICU My questions are has anyone experienced anything similar? What was your cognitive recovery like? I am meant to be getting married in Cyprus in 4 months (5.5 months post SAH) from me in the UK it's a 4.5 hour flight and it will be very hot this time of year. Do you think there is a risk of rebleed or any other complication from the flight or heat? Thanks in advance Gemma
lawson8879 posted a topic in Subarachnoid Haemorrhage DiscussionHi All Well I am now coming up to my 6 month mark and this week feel really rough again! I short, I had a bleed, which then led to hydrocephalus which was treated with an EVD and no shunt fitted, I suffer from Dizziness and sickness which shows no sign of let up!! They can find no cause for the intracerebral bleed.... I had a great Christmas and then have gone back to work three mornings per week which has been tough but I need it for my sanity!!!!!! On Tuesday I was talking to another Mum in the playground and must have turned my head the wrong way and the whole playground started spinning it was like I had come off a roundabout - awful. Since then my head has been really bad - 5 days now - as if something has been all swooshed up inside my head? Does that make sense? Is this normal??? I also have a complaint going through at my hospital - I was in there for 48 hours before a CT scan and allowed to fall twice during this time (I had no balance and was barely conscious, vomiting and worst headache of my life) and the hospital are denying that I had any balance problems!!!! They have admitted the falls, but said a falls risk assessment was carried out that showed no risk of falls...... I was heavily bruised but nothing too serious, but my question was if you had scanned me sooner could this have avoided the hydrocephalus? I do believe that my worst symptoms are the result of the hydro and evd placement and spend all my time thinking "what if" they had scanned me sooner it is driving me mad!! The bleed was cerebellar I believe which I think is balance? Sorry for al the questions - I was looked after wonderfully when transferred from my local hospital to Salford Royal but you get no aftercare at all and are left with all these questions and worries... Thanks All, yet again, for your advice )
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