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kempse

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kempse last won the day on December 31 2016

kempse had the most liked content!

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About kempse

  • Rank
    Senior Member
  • Birthday 11/01/1962

Profile Information

  • Gender
    Female

Converted

  • Biography
    Am married with 3 children, aged 9, 15 and 17
  • Location
    Derbyshire
  • Occupation
    Bank clerk
  • SAH/Stroke Date
    08 November 2008

Recent Profile Visitors

1,283 profile views
  1. Sarah, I am so very sad to hear that your lovely Mum has passed away, you must be devastated - my thoughts are with you. Reading all these tributes has brought a tear to my eye as I too will remember Win as a lady with a great heart, a fabulous sense of humour and an infectious singing voice. She was a remarkably strong person for recovering so well after her sah with all the added problems that she encountered along the way which you bravely shared with us at the time. Then we met Win on here and she became one of the family and kept us all entertained with her upbeat attitude. She will always bring a smile to my face as I remember her posts in the Green Room, she will be missed by us all. Love to you and your Dad, Sarah x
  2. Hi Daff, Sorry, I'm another late one! Well done for achieving what you have over the past 8 years, it certainly can't have been easy especially during those early years and yet you have always selflessly managed to help others on here with your excellent posts. Recovery is all the more difficult when you have to tend to children, so congratulations on doing such a good job with raising your girls. Your positive attitude is an inspiration to us all, Love, Sarah
  3. Thankfully I've not suffered with tinnitus, but I can imagine it must be very annoying. I have however read up on the condition recently and apparently it is quite common amongst the population. It appears to me to affect a lot of people after having had a subarachnoid haemorrhage. There is more than one type of tinnitus and apparently, according to what I've read, tinnitus is rarely an indication of a serious disorder. However, I have recently discovered what one of these rare and serious disorders is, having been diagnosed with a Dural anteriovenous fistula. I do not have any symptoms, but when I asked my consultant what symptoms I should be looking out for, he replied Pulsatile tinnitus. (There are other symptoms caused by a davf, but that was the only one he mentioned to me) I would stress that most cases of tinnitus will not be a symptom of a davf. A GP should be able to say whether tinnitus is pulsatile or not and if he/she thinks it requires further investigation. The following is a very brief insight into a davf:- The dural arteries bring high pressure oxygen-rich blood to the brain and the dural veins take the oxygen-depleted (deoxygenated) low pressure blood back to the heart. A DAVF causes the high-pressure arterial blood to enter into the veins or sinuses that normally handle low-pressure blood returning to the heart. This can result in ruptures leading to bleeding and brain hemorrhage as well as other neurological issues. Sarah
  4. Many thanks Karen, Fiona Macca and SM Yes, I can live with those odds, it could have been a lot worse. I was definitely feeling more relaxed about it all after the appointment than I was before it. I don't think I'll have a problem with getting on with my life, after all I've managed to live with these two aneurysms for the past 11 years. The nurse said on Monday that although the fistula was discovered incidentally from the angiogram done last October, they had looked back at the MRI scan I had last April to see if it was showing on that scan and it was, it's just that they weren't looking for it. What I should have asked and may still do so, is whether they had looked at any scans further back to check if it was showing on those. I just thought if it was there a few years back, then I would be even more reassured that it was going to remain as it is and probably not cause me any problems in the future. I was assuming that both the annies and the fistula could be checked on the same MRA, but it's whether they want to leave the checking of the aneurysms that extra year. The neuroradiologist had told me I would be called for an MRI in Oct 2020. Anyway the nurse said she would write to me this week, so I will await her letter then make contact to clear one or two things up. The support I have received from you all on here has been a great help to me and I really appreciate it, Thank you. Sarah x
  5. Well, I had the appointment 2 days ago to discuss the dural AVfistula that they had incidentally found in my brain whilst checking my 2 aneurysms. All my planning in allowing enough time for picking my sister up, rush hour traffic, parking at the hospital etc., just didn’t include the fact that my car might not start! Being on my own with nobody else up, I soon abandoned the idea of trying to get it going with jump leads, deciding it might be quicker to go back in the house and hunt for my daughter’s car keys in her floordrobe and go in her car, just hoping she didn’t need it! The parking at the hospital was horrendous, no spaces anywhere near where we needed to be, so parked a 10-minute walk away only to be told we were in a staff car park, so had to move! Finally arrived at my destination 2 minutes before my 9am appointment time. Despite the appointment letter saying I was seeing my consultant, (who I have never met), I saw a nurse practitioner, who, within a few minutes of arriving, informed us that it was her first day back following maternity leave. She was very nice, if not a bit rusty after her time off! At one point she tried to take my blood pressure with a small bp machine, but the batteries were flat so had to go off and look for another one and then when I asked her to write down my bp reading and what I should be aiming for, her pen had no ink left in it. She didn’t know the answer to one of my questions, so she went to ask my consultant. When she returned with the answer, I asked her another question and again she had to go and ask him for the answer. At this point he actually joined us in order to answer my various questions. It was explained to me what a dAV fistula was, plus the 3 different ways of treating them, all of which I was familiar with because I had read so much on the internet. These 3 procedures being: endovascular, open surgery or stereotactic radiosurgery. I was then told that in my case, the fistula was very deep within my brain and both the endovascular and open surgery were not an option as it was deemed too dangerous due to the location. The only option therefore was the zapping by radiation, but this could take up to 3 years to work and only had a 60% chance of working anyway. I was offered the option of talking it through with the radiosurgery team or the other option offered, was to leave it alone for the time being and be scanned again in 12 months’ time to see if the fistula had changed/grown. The latter option of leaving it carried a 1 – 2% risk of the fistula bleeding. The reason he was happy to leave it for the time being was because I don’t have any symptoms. Before this appointment I had never even considered the fact that 2 out of the 3 ways of treating fistulas would not be available to me, but I did already know that the radiosurgery experts had said in their MDT, having reviewed my case, that this type of treatment had a smaller success rate, but were willing to give it a go if there wasn’t a more attractive option. After trying to process all this and not really knowing what to do for the best, I told him that I was swaying towards leaving it and be scanned again in 12 months’ time, adding that I find yearly scans come round far too quickly and that I was so fed up with having to have annual scans, then worrying whilst waiting months for the results. He then said he was happy to leave it for 2 years from the last angiogram. He also said that if the fistula hadn’t changed by the time of the scan in Sept 2021 and if it was still not giving me any symptoms, it was his opinion that it never would change and he wouldn’t need to scan me again, so I could be discharged. Whilst feeling a little more positive at this stage of the meeting I agreed to go down this route, so I hope I’ve made the right decision and, in the meantime just hope I don’t get any symptoms and I’m not in the 1-2% that have a haemorrhage. I shall have to contact him again, because I’m not sure if he realised that I have annual scans anyway to check my aneurysms, so maybe I haven’t got a 2 year break after all – he had said the 2021 scan would be MRA not angiogram so I need to check this out. If anyone sees any new brains for sale on their travels, could you let me know please, or even a re-conditioned one would do! Thanks for reading, Sarah x
  6. Many thanks Colleen. The waiting since the shock of finding out, in the way that I did, has not been the best way to start a new year, that's for sure! Monday is within sight now, so I should know more soon. Thank you also for the birthday wishes - no partying as such yesterday - need to keep the old blood pressure down! Sarah x
  7. HI Jenni, It saddened me to read your last post, but never give up hope. I agree that life can be so cruel and I know from personal experience how upsetting these events can be and how it can be detrimental to your mental health - at least it was in my case. Take any help and support available, keep with this site, maybe visit the green room and hopefully it will all be of benefit to you like it has been with so many of us during recovery. Sarah x
  8. Hi again Jenni, The delay in getting attention certainly concerned me at the time and I did make a complaint, via my GP to the ambulance service although I never heard anything further. So yes, it's always a welcome miracle to come out the other side! It certainly is hard having children to care for when this has happened. Mine were 8,13 and 15 at the time of my sah and have all turned out fine despite the difficulties during my recovery. I'm not sure if my then 8 yr old even remembers the day when I forgot to pick him up from school because I'd fallen asleep! The double vision I had only happened the once and lasted approximately 15 hours, I had a ct scan etc, but in the end the hospital said it was an acephalgic migraine. The zig zag flashing lights came in episodes, the first being a day or 2 after the coiling and lasted about half an hour. My sah was 11 years ago and whilst I have suffered these ever since, the frequency has reduced dramatically. I was put on beta blockers after 2 years of having these which definitely helped reduce the frequency. (I'd been referred by my neuro consultant to see a neurologist and ophthalmologist) In the very beginning I could have these episodes several times a week, although my vision was ok in between. Despite having had hundreds of these episodes since my bleed, each year the frequency has gradually lessened until last year when I can only recall having had one episode. The ophthalmologist said it was aura of migraine in my case. Things will get easier Jenni - and the help you eventually receive from the brain injury people will assist greatly and once you feel stronger in yourself, things will become easier to manage. Take care, Sarah
  9. Hi Jennie, Excellent advice from Macca which hopefully will help keep you focused. It appears you are having a hard time of it all and you mention the fact that you regret calling for an ambulance at the time, which is making you believe things may have been different if you didn't have to wait 5 days before being operated on. Even if you had rung at the time, I doubt the outcome would have been any different. When I had my bleed at the age of 46 I did call for an ambulance whilst it was happening, but it was still another 10 days before I got operated on because the paramedic in the ambulance didn't think I needed to go to hospital! So it is not always clear cut between what you expect should happen and what actually does. After my operation I suffered with zig zag flashing lights in my vision, but not the blind spots or blurry vision you describe. I was also re-admitted to hospital a year later with double vision, but that has been the only time that has happened. I hope you get some answers from the next test they are going to do, but like others have said, it really is early days for you so don't just assume that things won't improve, because often things do - wishing you all the best, Sarah
  10. Thank you all once again. I really need to start that list of questions soon - there have been so many questions floating round my head that I need to catch them all and put them on paper - no doubt some will escape! I made a bit of progress today in that I've arranged for my sister to come with me - She said she would be up early that day anyway because her partner was going into hospital - just not the same one as me otherwise we could have killed two birds with one stone! Hopefully hubby will come too, so he can drop us off, so we don't waste time finding somewhere to park which is what usually happens when I go there. I think you're spot on again Macca - they should have told me this earlier - it was an appalling way for me to have found out. I do hope he can allay my fears - fears caused by the intricacy of it all. Obviously I have no idea how long I have been living with this abnormality, but it now appears that deciding to have that angiogram was probably one of the better decisions I've ever made. Sarah
  11. It's me again! I have finally this morning received an appointment through to meet with my consultant. It's a week today at 9am - which is far too early in my book. What's more it's not at my usual 'head' hospital, but at the Northern General across the city which means colliding with rush hour traffic - something that I have managed to avoid all my life! Even the location being the spinal injuries centre has got me worried! Oh well only another week of anxious waiting - albeit only round one! Sarah
  12. I did think it a bit strange Clare how she couldn't see it. I think she briefly said why she couldn't but I can't recall what the reason was. I'm not sure about making a complaint via PALS. I attempted that route when that 'hand' consultant was totally obnoxious with me about a year ago, but the first stumbling block I encountered appeared to be the fact that I live near a county border - living and having my gp's practice in Derbyshire but attending hospitals in South Yorkshire. I spent a whole day on the phone being flung from pillar to post - I was even diverted to the East Midlands at one point! At the end of that day I was no further forward than I was before I'd started so I'm a bit reluctant to try this route again! That's not to say I'm not happy with any of this, I'm not. There have been several unacceptable errors along the way and I've had to chase everything since having that MRI scan on 11th April 2019, the results of which have led me to where I am today. Thanks Clare, I value your input, Sarah x
  13. Thanks Clare, it's been an emotional few days that's for sure. I'm sure you're all right with regards to being called in if it were considered serious, or at least you would hope so! It does make me wonder how that department works - when I spoke to the secretary the other day, she asked me to read out what it said on the MDT summary because she didn't have it on her screen. With all this DIY malarkey, you may find me operating on myself before long ! Sarah x
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