Super Mario Posted January 4, 2020 Share Posted January 4, 2020 Sarah, as you know I am in the same boundary situation as you. I did use PALS for a similar reason as yourself at the same teaching hospital group and I did get a result, In my opinion you should at least give PALS a go. Link to comment Share on other sites More sharing options...
kempse Posted January 4, 2020 Author Share Posted January 4, 2020 Did you initiate the complaint at the hospital SM? Link to comment Share on other sites More sharing options...
Super Mario Posted January 4, 2020 Share Posted January 4, 2020 I rang PALS for Sheffield Teaching Hospitals, didn't actually go to see them. It could probably just been the person you spoke to. https://www.sth.nhs.uk/patients/patient-services Link to comment Share on other sites More sharing options...
kempse Posted January 4, 2020 Author Share Posted January 4, 2020 Many thanks for the link, Sarah Link to comment Share on other sites More sharing options...
kempse Posted January 6, 2020 Author Share Posted January 6, 2020 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 Link to comment Share on other sites More sharing options...
Super Mario Posted January 6, 2020 Share Posted January 6, 2020 Sarah, at least you are nearer to getting an explanation. The spinal injuries unit at NGH goes hand in glove with Neurology at the H. BIL is attending both for his Parkinsons. Hope the week doesn't seem to last forever. Link to comment Share on other sites More sharing options...
Tina Posted January 6, 2020 Share Posted January 6, 2020 Thinking of you Sarah and wishing you good luck for your appointment, hope you get some answers and peace of mind. Love & hugs xx Link to comment Share on other sites More sharing options...
Macca Posted January 6, 2020 Share Posted January 6, 2020 Sarah, just allow extra time to get across the city - the main thing is getting yourself heard and the capability of the consultant - you'll be getting it from the horse's mouth, which is what you want and need. As for the location, that might just be where the consultant is that day, so I wouldn't read anything into that per se. At least they have found the time to see you. Don't forget to make that list of questions you want answering so you don't leave anything out due to nerves or bad memory! And don't stand up for obnoxiousness - give as good as you get! Remember, they should have told you all of this earlier, and it's probably because they know they've not done what they should that he has found the time! Good luck! Macca Link to comment Share on other sites More sharing options...
kempse Posted January 7, 2020 Author Share Posted January 7, 2020 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 Link to comment Share on other sites More sharing options...
Louise Posted January 7, 2020 Share Posted January 7, 2020 Sending you hugs Sarah remember the question lists and keep calm... SO glad that someone is going with you... Link to comment Share on other sites More sharing options...
Chelle C Posted January 7, 2020 Share Posted January 7, 2020 Thinking of you Sarah, So pleased you have someone to go with you for your appointment, hope you get all the answers you so rightly deserve. Sending love & hugs. Xx Link to comment Share on other sites More sharing options...
Doonhamer Posted January 7, 2020 Share Posted January 7, 2020 Sarah, I have only just read your story. So very hard! Fingers crossed for you with the next step xx Link to comment Share on other sites More sharing options...
Colleen Posted January 12, 2020 Share Posted January 12, 2020 Hi Sarah, I can't imagine what you've been going through. I do not think I could be that patient waiting either. I truly hope you get the answers you need when you go in Monday and fully agree with Macca; do not let them have an inch! You are owed a full explanation of what is going on and all the options in full detail. I will keep you in prayers (belated Happy Birthday also, sorry to miss your day) Colleen Link to comment Share on other sites More sharing options...
kempse Posted January 12, 2020 Author Share Posted January 12, 2020 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 Link to comment Share on other sites More sharing options...
Super Mario Posted January 12, 2020 Share Posted January 12, 2020 Sarah, I hope you get all the answers to your questions tomorrow and that your worries/concerns are alleviated. Link to comment Share on other sites More sharing options...
kempse Posted January 15, 2020 Author Share Posted January 15, 2020 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 Link to comment Share on other sites More sharing options...
Karen Posted January 15, 2020 Share Posted January 15, 2020 Hi Sarah and what a nightmare for you! x I would take the exact same route if I had your circumstances. I guess that the medics have to weigh up the difficulties of treating it, the outcome for you.....up against leaving it alone, especially if you're not experiencing problems at the minute. At least you know that they will keep a good eye on it for any changes etc. I'm guessing that your annual aneurysm scan will just check the aneurysms themselves, but something that you need to ask as whether the two issues can be combined into one check up scan? MRA is used to evaluate blood vessels and help identify abnormalities and it sounds like the right option to me as they will know from your last scan precisely the area that they'll be looking at to check that there aren't any changes, rather than putting you through angiography. Good luck Sarah and I wish you well .... Big hugs! xx Link to comment Share on other sites More sharing options...
Doonhamer Posted January 15, 2020 Share Posted January 15, 2020 Hi Sarah, Gosh - incredible what you've been having to endure! Here's hoping that you have no more symptoms and closing down of that bit of case in Sept 2021! I'm guessing that's the lowest options for you. Hope you get the appointments rationalised. So much to deal with. Fiona xx Link to comment Share on other sites More sharing options...
Macca Posted January 15, 2020 Share Posted January 15, 2020 Sarah, 98%-99% against 1%-2% odds are pretty good aren't they? You've probably got better odds than the risk of getting run over when you cross the road! I think you should just be happy with that for now and get on with your life. Some people must be walking around with bigger risks than that and don't even know it. I was advised to avoid head contact sports and other than that I've been ok and I'm 9.5 years out now! Well done Sarah! I hope some of those answers and our support have helped put your mind at ease somewhat. Macca Link to comment Share on other sites More sharing options...
Super Mario Posted January 15, 2020 Share Posted January 15, 2020 Sarah, I entirely agree with what Karen and Macca have posted. Don't let that 1 to 2% worry you, many have problems that pose a much higher risk. Stay positive and live your life to the full. (Not work, work and more work) Link to comment Share on other sites More sharing options...
kempse Posted January 15, 2020 Author Share Posted January 15, 2020 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 Link to comment Share on other sites More sharing options...
Skippy Posted January 15, 2020 Share Posted January 15, 2020 Hi Sarah Sounds like a good option to take to me. I asked my consultant what the odds of my brain bleeding again were - he said 1% - 2% the same as anyone on the street. I asked him what the odds of my brain bleeding again were if I carried on smoking and he said 3% - I'm still here (the lower odds in my favour) and I haven't cut down smoking let alone stopped - and I'm still here (higher odds in my favour). Definitely get any confusion with scans cleared up and then enjoy life knowing that the odds are no different to someone who has never had a bleed. Link to comment Share on other sites More sharing options...
Chelle C Posted January 16, 2020 Share Posted January 16, 2020 Sarah, So pleased you have been given better news than you were expecting, I think I would have taken that very same option, Asking the question about it being on previous scans is a good idea, as you say if it has shown up on those and it hasn't given you any symptoms then as you say it's less likely to bother you in future. Hopefully you can relax a little now and get back to living your life with a little less stress. Love & hugs Michelle xx Link to comment Share on other sites More sharing options...
kempse Posted October 5, 2020 Author Share Posted October 5, 2020 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 Link to comment Share on other sites More sharing options...
Tina Posted October 5, 2020 Share Posted October 5, 2020 Bless you Sarah xx A very worrying time for you. Hope you wont have to wait too long for that letter ! Sending lots of love and hugs to you xx Link to comment Share on other sites More sharing options...
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