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Everything posted by kempse

  1. Hi Adam and a warm welcome to Behind the Gray. I'm sorry to hear you had such a rough time. Not knowing what was happening and having no family around to support either would be a bad experience in anyone's book. Anyway I'm glad you're back home now where you can concentrate on your recovery. 6-8 weeks seems to be the standard that doctors tell you, or at least mine did too. I think it is very misleading give a time span like that as many survivors take considerably longer than that. As for telling you that yours was one of the good ones, well I've never heard anything so stupid! There is certainly nothing good about having a bleed on the brain, it's a serious traumatic event - end of !! Obviously some people to come out of it better than others and hopefully you will recover well. Tiredness/fatigue are very common and rest/sleep is a must where possible as is drinking plenty of fluids to keep any headaches at bay. Mine was caused by an aneurysm rupturing, so not the same cause but it was a low graded sah. I had 5 months off work, then only went back part time. Tiredness was a major problem for me, so much so that once I didn't wake up from a day time nap in time to collect my then 8 year old son from school! Glad you found this site and all the best in your recovery, Sarah
  2. Hi Dawny, A warm welcome to Behind the Gray and I'm sorry that your original post was missed and not replied to. I remember that hesitation about posting for the first time so can understand that it can take some courage to do. Hopefully your trust in posting has now been restored by the responses you have received Much of your post resonates with me although my experience was long before covid was ever heard of. I had a SAH in Nov 2008 and following my first check up they wrote to me telling me they wanted to recoil the aneurysm and they were looking at doing this within the next 3 weeks. I took this time frame to mean it must be fairly urgent and my emotions went into overdrive! This 3 weeks actually turned into approximately 8 months before I had the recoiling done. During that time I had dates for the procedure booked twice and both times they were cancelled - one on the morning I was due to go in. Since then I have been monitored annually as my aneurysm has a wide neck and I also have a 3mm aneurysm which they check at the same time. Over these 12 years they have twice called me in to discuss treating the aneurysm for a third time although this has never taken place. In 2019 they incidentally found a DAVF in my brain, but to date this has not been treated either. What I have learnt over the years, having gone through what I have, is not to panic like I did in those early days and be grateful that I am still being monitored. I hope you're not waiting too much longer - I also know the feeling of relief after the procedure is immense. Wishing you all the best, Sarah x
  3. I haven't had my Covid vaccine jab yet Hubby will be setting off for his injection in the next hour - he probably got his because he's in his sixties and I'm still a spring chicken in my fifties albeit only just! In the meantime I shall just have to continue ducking and diving to try and avoid catching the virus. I'm sorry to hear you had the virus over Christmas Tina, I hope you recovered well and haven't any lasting issues - sending hugs x Sarah
  4. Hi Sally, That's brilliant news xx I've only just read your post on my thread which was obviously posted prior to you receiving your good news. I agree, it's such a relief to hear things are stable after that awful 'waiting game' and well worthy of a Cheshire Cat grin!! Relax and enjoy - (well as best we can in this lock down situation) Sarah xx
  5. Many thanks everyone for your lovely comments - you all sound as happy as I am about this news! I just need the next 18 months to go in slow motion now! Thanks again, Sarah x
  6. Well, I am ecstatic on this cold, bright and snowy afternoon. I have just come in from decorating my daughter's new flat and find a letter from the hospital saying, "I write to advise you that the scans you had on 14th January show everything is stable" It then goes on to say "Dr. Dyde has arranged a further scan to be performed in 18 months and we will write to you with the results when they are available. Currently no further treatment is planned" I am so happy, I could cry! In fact I didn't just get one letter saying this, I got two - an identical letter which must have been sent just to make sure I'd read the first one correctly!! I dread to think how many months I have had all this hanging over me, so the relief is immense. I realise that things may change in the future, but 18 months respite is not to be sniffed at in my book Sarah x
  7. Hi Ann, So pleased to hear your coils are behaving as they should and the fact that you don't require a stent at the present time. Hopefully this will remain the case when they check in July. It does make a lot of difference who you see and how they come across and I'm glad you feel happier about things going forward. I'm still waiting to hear what my MRIs revealed. Hopefully I won't be waiting much longer. Take care, Sarah xx
  8. Well, I'm a small step nearer to finding out what, if anything, they plan to do with my dural arteriovenous fistula and/or aneurysms in that I had my MRI scans yesterday (14.1.21). I'd been getting anxious in the days leading up to yesterday, partly due to knowing how long I would be in the scanners and partly having to go into a hospital when covid cases are so high. (one of my employers have catergorised me as being clinically extremely vulnerable), Then to make matters worse the snow came! I went to one of my jobs yesterday morning and on the way down their untreated drive I started sliding on the snow/ice. Bearing in mind I was sliding downhill with a 90 degree bend approaching I decided the best option would be to turn into the open field on my left rather than risk losing control on the bend, hitting the fence and dropping into another field that I wouldn't be able to get out of! I was quite impressed that I made that decision as the grass brought me to a standstill which left me in a better position to negotiate the bend. This incident almost caused me to cancel the MRIs as I knew the snow would be worse on the higher ground that I had to take to get to the hospital and I knew my car wouldn't cope with it. As luck would have it my son was able to take me in his 4 wheel drive vehicle. No covid test beforehand and no questions asked if I had any symptoms on arrival at the hospita,l which I thought a bit strange. The scans were almost without incident although I was not happy that I had to wear a face mask whilst in the scanners. I had the usual problem of them not being able to find a vein in my arm in order to administer the dye. The first attempt failed, so he tried my other arm and eventually hit the target. I'd only been in the 2nd scanner a few minutes when he hit the button and I was slid back out again, the head restraint taken off and he told me he had detected metal and did I have any crowns. Once he established my crowns were secure and presumably would not fly out of my mouth and stick to the magnets, we proceeded with the scan! Once again I was glad when it was all over. Now the long wait until I hear from them - no rest for the wicked! Sarah x
  9. Hi Ann, Haha - these gong shows are becoming a common theme! On a more serious note, I hope all goes well on 5th and you're not waiting too long to get the results and hopefully some reassurance from those involved in your care. As you know I'll be having be having my MRI the week after you and whilst they are primarily looking at this davf they've found, they will also be checking on my two aneurysms. It's going to be an anxious time waiting to hear what they have to say and what they might propose to do. I'm trying to be brave about it all, but if the truth be known I'm petrified! I hope you're bearing up better than me. Take care and good luck Sarah x
  10. Hi Sallios I understand how frustrating and worrying it is for you, but as Skippy says, try not to worry too much. The vast majority of follow ups show the coiling to be successful. In my case however, the follow up showed the coils had compacted and I needed more coils inserting. When I received the letter saying they proposed to do this in the next 3 weeks I thought OMG it must be urgent and might something happen during the 3 week wait. This 3 week wait ended up being 9 months and nothing untoward happened during that time. This was back in 2008/2009 when I was new to all this and hence my anxiety levels were a lot higher which, I guess, is the case for most people and probably includes yourself. Your scan will come through at some point but please try not to worry in the meantime. Enjoy your Christmas, Sarah x
  11. Many thanks Ann and Jean for posting. I hadn't heard of the gong show expression Ann, but thanks to Google, I know now! That sums it up nicely! I hope you get your scan dates sorted and that it doesn't turn into a gong show! Happy Christmas to you and to everyone else who might be reading this xx Take care, Sarah xx
  12. Thank you Skippy and Tina Well, I posted that before the postman had been this morning and yes, he has delivered yet another appointment letter! Depending on which of the 8 appointment letters you look at, there is mention of MRA Head, MRI Head, MRA Head with contrast, MRI Internal auditory meatus Both. The only other thing I can remember her saying during the phone calls is that I would be in one scanner for about 15 minutes and in the other scanner for approximately 30 minutes. Whilst I might be a bit confused by it all, I trust they know what they're doing! Sarah x
  13. I suppose I was being optimistic when I thought I might get to the other side of Christmas before hearing about a date for the proposed MRI scan, but it was not to be. In fact, I didn't anticipate that getting such an appointment would be quite so complicated! I received an email last Thursday saying they, the radiology department, were ready to make an appointment for the scan and I was given the option to receive future correspondence by email or continue through the postal system. I chose the email option as I felt it would easier, quicker and cheaper for the NHS. I followed the instructions, got a ref no. and then had to ring the hospital, with this number to book the scan. During the conversation I was told she would have to ring me back after she'd spoken to her supervisor as she was having problems fitting it in. She also said that her supervisor wouldn't be in until 10am - it was now 8.30. She rang back about 10.20 saying that speaking to her supervisor hadn't helped much! It was during one of these calls that she informed me that I needed 4 examinations on two different scanners(unexpected news to me) and she was trying to fit them in together during January which was already pretty full. She finally came up with 14th Jan at 3.55pm and said the confirmation letter would be sent via email. About half an hour later she rang me again. Could we change the time to 2.55pm because she'd been told the scans had been booked the wrong way round as they needed to be done in a certain order. She said I would get another email letter to confirm. When I went into my emails, there were actually 3 appointment letters. Each one needed a code to open, the codes were sent to my phone and after a few attempts I finally matched the right code with the right letter! Thinking I might never get access to the letters again, I decided to print them all. The third, mystery letter has a time of 4.35pm If I turn up at 2.55pm on 14th I reckon I have all bases are covered! That's not quite the end of the saga though - yesterday morning 4, yes 4 letters arrived on my doormat - all from the hospital relating to this scan appointment. They are all the same format with varying times/types of scan and I've yet to compare these 4 to the 3 I've already received by email. So much for trying to help the NHS save paper etc. Sarah x
  14. Today was angiogram day. Up at 6.15am, all the usual getting ready and trying to be mentally prepared. Arrived at the hospital at 9 am. Should have allowed a bit more time for the fact that there was a limit of 3 people in the lifts at any one time. Then when a lift finally became available someone selfishly pushed in before me taking up the third position! Arrived on N Floor at the neuro day care centre. A nurse came and unlocked the door to let me in, asked my name, looked at her list and said I wasn't on it! Luckily I had my letter on me which fortunately confirmed I hadn't got the date wrong, so she made a phone call and it was confirmed I should in fact be there! She took my blood pressure, which unsurprisingly was higher than normal. Had my own room, changed into gowns and those lovely knickers that look more like a bath hat, had a canular put in arm and a named wrist tag put on in case I forgot who I was! Consent form explained, risk of stroke, death etc and then signed. I mentioned at this point that I hadn't noticed the pulsatile tinnitus for the past 2 weeks which was the reason I was having the angiogram. She said she would mention that to the radiologist. As she left the room, another nurse came in, introduced herself and said she would be taking me down and looking after me. She asked me to move onto the bed from the chair so that we could go. At this point someone else came into my room and said I wouldn't be going anywhere as an emergency had just come in. This didn't help my anxiety levels although I do appreciate emergencies take priority. With unspecified waiting time ahead, the tears started to flow. I decided to lie down and try and pass the time be having a nap. A few minutes later the neuro radiologist walked in - he'd got the message about the PT and decided not to do the angiogram after all, explaining his decision to me. He already has the pictures from last year's angio and now he is going to arrange an MRI scan at the beginning of next year. If the davf is still there (?) he will have a discussion with his 'team' as to the way forward for treatment. He thought that would most likely be gamma knife treatment. Time will tell. In the meantime, I am happy not to have had the angiogram today and can now relax over the Christmas period without any 'angio results' hanging over me. Sarah
  15. That is so kind of Macca's family, enabling this site, which helps so many, continue into the future. Macca will always be remembered by those who 'met' him through this site as someone who always put others first, always willing to help others with his sound advice which was gained through his own recovery from a sah. He had an amazing gift of writing his posts so eloquently, leaving the reader with knowledge and advice that came from the heart. Sarah x
  16. You've nudged my memory SM mentioning that - I signed the consent form on Monday at the assessment, then the nurse said she would go and find a doctor to come and explain it, then he would sign it. She explained in minute detail about the actual angiogram procedure, but nothing as to the reason why. She came back without a doctor, saying they were all on emergency cases, but a doctor would sign it on the day. So hopefully I'll get some answers then. Thanks, Sarah
  17. Further to my last post, I had my pre-assessment on Monday which was much longer than those I have had in the past - 2 hours in total. I was given a home Covid testing kit and told I would get a call as to when to take the test. Well I've had that call now - I've to take the test next Monday 30th and then self isolate until Thursday 3rd Dec when I will be having the angiogram. I never did get the letter telling me exactly what they're looking for, so I'm guessing that last year when they found this davf by accident whilst looking at my aneurysms, they maybe haven't got enough 'close up' pictures and want to double check the feeders, venous drainage etc. That makes me sound like I know what I'm talking about, but I don't lol - perhaps they'll explain it in more detail at the follow up, which if my previous follow ups are anything to go by, it could be months away. Anyway, just another 6 days of anxiety until the angio is over! Sarahx
  18. Hi Ann, I'm sorry to hear you are in this situation. I can't answer your questions unfortunately, because I've not had a stent inserted. I can empathize however, because twice in the past 12 years since my bleed, I have been in the situation of my neuro team talking to me about having such a procedure and likewise mine is in a very challenging spot. I was also told I'd be on blood thinners for life if I were to have the procedure. Last year I got to the stage of an angiogram before they decided my aneurysm was stable enough not to put a stent in, but I still have annual scans so I doubt I'm out of the woods just yet, which just means I have this concern constantly at the back of my mind. Hopefully you will know more when you've had the MRI in 3 months' time. In the meantime try and relax and enjoy the upcoming festive season or as much as we can in this crazy climate! Take care, Sarah x
  19. Well it's a month since I posted saying that I should receive a letter telling me what had been discussed and decided at a MDT held on 9th October regarding my case. I still haven't received that letter, but yesterday I received a phone call from the hospital's x-ray department wanting to make a pre-assessment appointment with me in preparation for an angiogram that had been requested by my consultant. This came as a bit of a shock as I've not heard from the consultant to explain the purpose of this. He must have something up his sleeve because you don't request an angiogram without reason. I will update when I know more, Sarah x
  20. Many thanks Tina, Daff, Chelle and Claudette for your love and kind words. Today is the day I am being discussed in the MDT meeting, so hopefully I will hear something in the not too distant future. It has certainly been an arduous journey Claudette and losing 6 close family members during that journey has made it so much harder. Love, Sarah x
  21. Just a quick update on this thread. To recap: incidental finding of dural arteriovenous fistula following angiogram which was to see if aneurysm needed further treatment. Due to me being asymptomatic, it was decided in January 2020 that the davf could be left alone and a follow up scan was scheduled for Oct 2021 although I was asked to report any symptoms should I get any. I was also told that, in my case, the fistula could not be treated by embolisation or via craniotomy due to it's deep location, so the only option would be stereotactic radiosurgery. Fast forward to the beginning of August and I started getting pulsatile tinnitus which is one of the symptoms of a davf. My tinnitus is not all the time and it is not very loud. However, I had a telephone consultation today to discuss this with my neuro team. The result of that conversation is that I will now be discussed at their next MDT meeting which is this coming Friday. Following that I should received a letter telling me the outcome of that meeting. In the meantime, I will await that letter with trepidation! Sarah
  22. Hi Macca, Congratulations on both your 8th wedding anniversary and your 10 year milestone. You are an inspirational person, who not only had to contend with your own recovery from sah, but have helped so many others, me included, through your very wise words along the way. I really admire your eloquently written posts which are always positive, helpful and written from the heart💜 I hope you both enjoyed your Italian - felice anniversario ! Love, Sarah x
  23. 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
  24. 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
  25. 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
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