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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

1,192 profile views
  1. Dear Loose Wires - just love the name! Congratulations on your 5th anniversary yesterday. Hopefully there is still room for a bit more recovery regarding those niggling things you mention. It's my 11th anniversary in a few days and I still have those afternoon appointments with my pillow most days! Best wishes, Sarah
  2. Hi Colleen, As you probably already know I shall reach my 11th anniversary in a weeks time, so I understand the 'hard to believe' bit. Well done on getting through those 11 years and staying as an active member of BTG during that time. Sorry to hear that you will be celebrating in such a way, but I'm sure you'll agree that having a tooth out is like a walk in the park compared to what you went through on this day in 2008. Wishing you all the best for the future, Sarah
  3. Thank you all for your replies. I will do as Sami suggests as I do think it's important to have any written communication to us about our brains factually correct. Sarah
  4. Last night I was filing a couple of bits to my ever growing 'brain' folder, one being a discharge letter regarding my angiogram last week, the other being a copy of the Consent form that I signed. The first document being typed and the latter handwritten. The discharge letter, which is obviously a standard letter has 'right ICA aneurysm' typed under the heading of primary diagnosis (main condition treated). The Consent form, under the heading Statement of health professional reads: I have explained the procedure to this patient. In particular, I have explained: The intended benefits: "To assess Right ICA aneurysm and cerebral blood vessels prior to further treatment..." I found this a little disconcerting when the aneurysm they were supposed to be checking is a basilar apex aneurysm and not a right internal carotid artery aneurysm! Two completely different places. Fortunately due to the comments made by the radiologist following the procedure I think he was probably looking in the right place! It's a bit like the letter I received following the MRI stating my aneurysm was 'not amenable for further endovascular treatment' when in fact it should have read that it "was amenable to further endovascular treatment". These may just be mistakes, but they don't help my nerves! Sarah
  5. Many thanks for your posts everyone. Macca, I'm 100% with you on those points and will ask the questions if the need arises. I'm also trying to get used to the difference between the way in which this and my previous radiologist communicate with me in general. One comment yesterday was that he was surprised I hadn't died when I had my SAH as the vasospasm was so bad. Plus he called me by my middle name on one occasion having used my first name at all other times. It would have impressed me more if he'd addressed me as Macca has above - 'young' lady Anyway, assuming he doesn't change his mind, at least I know they will continue monitoring me annually and because I've just had this angiogram, he said my normal April MRI's would now be in October so a bit of breathing space at last. Sarah
  6. Just to update, I have today survived the angiogram! I got up at 5am to be at the hospital for 8 which had been changed from the original 8.30 as my procedure was due at 9am. But when I eventually got down to the "angio" room at 10.15 I was told they hadn't had the results of the kidney function blood test. Apparently I should have had all the blood tests done at the pre-op assessment, but no-one took any blood. I don't think the radiologist was too impressed! So they did a finger Prick test and I must have passed as I was then wheeled into the room. When I recently purchased some contact lenses so I could see my brain on the monitors above, I didn't factor in that technology has advanced since my last angios 10/11 years ago and there was only one large monitor which I couldn't see anyway, so it was a bit disappointing! I was forewarned when the dye would suddenly heat up my head/neck, but at that point I was beginning to lose faith when he said "you will now feel heat on the left side of your head, I mean right side - sorry about that, I don't know my left from my right" I also got the flashing lights which I didn't get last time. It took about half an hour to complete and then the usual 4 hour bed rest. The neuroradiologist said he would look at the pictures in more detail, but he did say that, although blood was still entering the aneurysm at the base, he didn't, on first inspection of the photos, think it would be worth putting me at risk with more surgery - that was music to my ears! I just hope he doesn't change his mind when he's had time to take another look. Apparently I can't drive for 7 days, I don't remember that last time round. Oh well, I'm a lot happier now than I was early this morning! Sarah
  7. I also read that on Google Sally, but like you say I'm still ok and I've had literally hundreds of episodes. I'm having an angiogram on 24th October, I just hope that doesn't set them off again! Sarah
  8. Hi Jessica, Firstly I am so pleased to hear your daughter is doing well after her procedure, but sorry that she and you had to go through all this with her being so young, it must have been a very worrying time. I wish her all the best. As for me, I haven't had my proposed procedure, but coincidentally I was in the middle of reading your post when my husband handed me a letter which had just come through the letter box. It was a letter from the hospital with a date for my angiogram which is 24th October at 8.30 am😨. Immediately I saw it was the week after next my heart started beating extra fast! Despite having had a couple of angiograms in the past I still worry about the procedure, I even worry about sneezing or coughing during the angiogram. Perhaps they'll give me a sedative! Thanks for your offer to talk about diverters etc - I will bear this in mind. Sarah
  9. Hi Sallios If you're in the UK you should automatically get a follow up appointment and/or a scan to see how your coils have settled in, usually between 3 and 6 months after the coiling. Can you describe these auras you are experiencing? I experienced auras immediately after my coiling which was 11 years ago. The first episode whilst still in hospital. I would describe mine as crescent shaped, silver and black zig-zag flashing lights and it would continue flickering for anything up to half an hour. Sometimes there would be one crescent, sometimes 2 or even 3 on occasions and whatever direction I looked they followed my vision so there was no escape from it. It was still there if I closed my eyes or covered one eye. I too was worried about the frequency of these episodes and not knowing what they were or what was causing them. I began recording the frequency, the length of each episode and what I'd been doing at the time - the latter didn't prove much as I even got them during the night as they woke me up. I did mention it at my first follow up appt, but they didn't appear too concerned saying it was quite common following an sah/coiling. As I was being monitored annually and I was still having these auras 2 years later, I was referred to an ophthalmologist at the hospital who confirmed it was the aura of migraine without the headache. Following correspondence to my GP I was prescribed medication and was told it wouldn't completely get rid of them, but at best would reduce the frequency by up to 50%. I'm still on this medication and apart from one episode last week I don't recall having any others this year which makes me conclude that the reduction for me must finally be nearing 100%. I hope you succeed in getting an appointment soon, Take care, Sarah
  10. That's definitely something I shall be asking Daffodil, as far as I'm aware there has only been a very slight change in all these years and that was reported from my scan 3 or 4 years ago. This procedure that they are talking about now was mentioned back then and I decided not to have it done. There has been no change since then, so quite why they are putting this stressful decision to me again, I'm not sure. Thanks for the love and hugs Tina - much appreciated😀 Sarah
  11. Many thanks to everyone for taking the time to reply. All good advice. I will try and do what Sami suggests and try not to worry until the angiogram is done. I think he mentioned November for this so not for a few weeks yet. I was talking to my sister yesterday (she came with me to the appointment) and between us we feel that we came away with quite a few unanswered questions, so we have both started to write these down to ask next time we see the radiologist. I took a list of questions to the meeting on Tuesday, but forgot to get the list out of my bag! I’ve had great faith and admiration for my neuro team who have kept me safe for the past 11 years, what I liked was having the same two consultants from day one, then about 3 years ago one of them left to go to another hospital. I have never met his replacement and this year I find out that the one who did both my previous coiling procedures no longer does these procedures, so this was the first time I had met his replacement. I do still trust the team even though the two main players whom I knew so well are no longer part of that team. I probably shouldn’t read things on the internet, but I have done and the first thing I read was that Flow diversion for basilar apex aneurysms has rarely been reported. The article was dated Dec 2018. Anyway I haven’t got to make the decision just yet although I could well do without it hanging over me! Thanks again, Sarah
  12. I am in the unenviable position of having to make a decision about whether or not to have my aneurysm treated for the third time. Unfortunately, decision making is not my forte😨 Background is that in November 2008 I had a subarachnoid haemorrhage caused by the rupture of an aneurysm situated at the apex of the basilar artery in the brain stem. This was coiled 11 days later and again a year later. Since then, I have had this aneurysm, which has a wide neck, plus another unruptured one, monitored annually. Yesterday I finally had a meeting with the consultant neuroradiologist following the MRI which I had 5 months ago and also had to chase it up twice. What he suggested was to have more coils put in the base of the aneurysm where there is a gap and at the same time insert a flow diverter which, as the name suggests, diverts the blood away from the aneurysm eliminating risk of rupture which currently stands at a risk of 1% per year. All this appears to be a sensible idea but to achieve this I would need to put myself through a procedure which fills me with fear. I was also told there was a 5% chance of having a stroke during the procedure. Although I've turned this round to a 95% chance of not having a stroke it's not made my decision any easier. The other option is doing nothing now and continue being monitored on an annual basis which presumably is just delaying the decision. Anyway I came away from the meeting having agreed to an angiogram being arranged so he can get a more detailed picture of what he's working with. He also said he would get a second opinion from some consultant in Birmingham before going ahead with any procedure because of it's complexity. I have asked for another meeting with him after the angiogram before I try and make a final decision. Sarah
  13. Congratulations Karen on this 14th anniversary. Lovely photo - how you manage to look so good on such a hot day is advice I'm much in need of! I'm sure it will give much inspiration to those who are not so far down the recovery path - and here's to the next 14. Sending love and thanks, Sarah
  14. I'm sorry I missed your 5th anniversary Michelle, so it's belated congratulations for reaching another milestone. I'm glad you have come out the other side from having some mental health issues with such determination to move forward which is not always easy, I know. Your contributing posts on here are always warm, sincere and written from the heart. You will have helped many fellow sahers during the past 5 years whilst overcoming the struggles in your own recovery which is admirable. It's lovely that you and Jan have met through BTG and have developed a close friendship - long may it continue. Take care and keep strong, Love, Sarah
  15. Hi Jessica, I too am very sorry to hear your daughter suffered a sah at her tender age of 7. I can't imagine how awful that must have been for you both. It's not helped by the fact that there is hardly anything on the internet regarding children who suffer an sah. I would suggest writing down any queries or concerns that pop into your head as and when they do and then take the list to your next appointment with her specialist. Whilst 7 year olds are usually very active, I would imagine that she will become very tired after little activity, just like us adult sah survivors do in those early months and like the majority of us, she won't necessarily recognise when she needs to rest. Sleep, rest and drinking plenty of water definitely help the brain heal. Sorry I can't comment on stents as I didn't require one. I hope her recovery goes well.. I wish you both all the best and do come back if you feel you need any support, emotional or otherwise - we're a friendly bunch with combined personal experiences of sah together with what can be a rather long road to recovery. Best wishes, Sarah
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