kempse Posted October 31, 2019 Author Share Posted October 31, 2019 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 Link to comment Share on other sites More sharing options...
Skippy Posted October 31, 2019 Share Posted October 31, 2019 Sarah I'd take your folder with these letters to your next appointment and ask them to explain - even if its to point out to them that its not instilling confidence in you if these are mistakes. Not good for your nerves at all hun x Link to comment Share on other sites More sharing options...
Tina Posted October 31, 2019 Share Posted October 31, 2019 Sarah, i agree with Sami, definitely take your folder with you next time and ask for explanations. Not good at all for your nerves bless you xx You just don't need all the extra worry of it all xx Hugs xx Link to comment Share on other sites More sharing options...
Winb143 Posted October 31, 2019 Share Posted October 31, 2019 Tell them that you are a bag of nerves over this and stress isn't good for us Sarah, hope you do get things sorted as it is your head and you want the right diagnosis given. Good luck XXXX Scary for you xxxxxx Agrees with Sami and Tina xxxx Grrr puting you through this xxx Link to comment Share on other sites More sharing options...
Louise Posted November 1, 2019 Share Posted November 1, 2019 I'd take copies of the letters just incase they miss lay them and take the folder with you like Sami suggests.. Link to comment Share on other sites More sharing options...
kempse Posted November 1, 2019 Author Share Posted November 1, 2019 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 Link to comment Share on other sites More sharing options...
kempse Posted December 30, 2019 Author Share Posted December 30, 2019 It will be 10 weeks on New Years Day since I had my angiogram and I still haven't heard anything from the hospital despite the neuroradiologist saying he would let me know the final decision, on whether I needed further treatment or not, after they had had an MDT (a meeting where the experts get their heads together to discuss my case). I have not been overly concerned that I have not heard anything, because he had also said at the end of the angiogram, that after having had a quick look at my photos, he didn't think it was worth the risk of putting me through more surgery. Whilst I was at my GPs this morning for an unrelated matter, I asked if they had had any correspondence from the hospital since my angiogram on 24th October. She found a letter, read it and printed me off a copy and suggested I contact the hospital as she was surprised they hadn't been in touch. She made no attempt to explain the content of the letter - probably because she hadn't got a clue. .. And whilst I haven't got much of a clue either. It has got me extremely worried. The letter says that the neck recurrence (which was the reason for the angiogram) seems stable. The letter then goes on to say that the recent angiogram revealed an incidental asymptomatic AV dural fistula. Imaging for review and suitability for stereotactic radiosurgery. There is some more gobbledygook then under outcome it says: Although the SRS treatment of dural AV fistula has a smaller success rate we can attempt radiosurgical treatment if there is no other attractive option. There is a bit more in the letter, but I have read enough for it to fill me with fear and dread. My response to all this unexpected news is tears. Sarah Link to comment Share on other sites More sharing options...
Super Mario Posted December 30, 2019 Share Posted December 30, 2019 Sarah, not surprised you were in tears, What a shock and to say you haven't been contacted by the hospital is appalling. You do need to get back to see neurology asap for an explanation of everything. You do need to contact them for an urgent appointment, you can't be left on a knife's edge. I do wonder if that letter was not for your eyes only the GP's as they are allowed to withhold information that is thought to be detrimental. In your shoes I would be feeling exactly like you. The Hallamshire is notorious for messing appointments up and not sending for you, especially neurology. I had problems a few years ago and a secretary at my GP's had to threaten them with logging everything on my patient record in the end to get a result. Referral letter they said they hadn't got in spite of it being faxed several times and receipt received. It was miraculously found on a shelf after the threats. Link to comment Share on other sites More sharing options...
ClareM Posted December 30, 2019 Share Posted December 30, 2019 Sarah my advice would be to call the author (doctor) of the letter’s secretary. Advise them you have been given a copy of the GP letter and it has caused you major concern. So much so that you are requesting an urgent appointment with that Doctor. Doctors can choose whether to copy patients in to hospital letters but as patients have a right to see them there should not be any information in them a patient should not see. Get on that phone first thing and take the first steps to getting some answers. The only thing I can say is that after a case has been to MDT if the patient needs to be seen urgently it is noted and multiple people would be aware. Good luck tomorrow and keep us posted - sending big cyber hugs xx Clare xx Link to comment Share on other sites More sharing options...
kempse Posted December 30, 2019 Author Share Posted December 30, 2019 Thanks for your advice Clare and Super M. Hopefully I'll find time between my two jobs tomorrow to ring them, if not Thursday. Looking at this correspondence a bit closer, it appears one is a letter to my consultant from another consultant neurosurgeon enclosing the minutes from his Stereotactic Radiosurgery MDT and what I was quoting in my earlier post was from those minutes, so maybe I wasn't supposed to see it - at least in that form. Having said that, the letter, the minutes and the MDT were all on/dated 15th November, so I think they have had long enough to get something out in the post to me - which would have saved finding out this way - not helped being on a day when I only had 2 hours sleep last night! Sarah Link to comment Share on other sites More sharing options...
Macca Posted December 30, 2019 Share Posted December 30, 2019 Hi Sarah, I've just read all of the above. In my opinion, you need to go and speak to the consultant asap. Don't accept the receptionist. You need to speak to the engineer, not the oily rag, so to speak. I would do it as a matter of urgency and forget your jobs until you see him/her. You won't be able to concentrate on them anyway until you get some answers. I would also sit down with pen and paper and make a list of questions you want answered, because you might forget to ask if you don't list them, simply because of the emotion going through your head. This is your life and your future you are talking about. Hopefully, the fact they haven't contacted you yet is a good sign, that they don't think it is as urgent as you think it might be, so try and be positive. Nevertheless, you need answers and I would say they are your absolute priority right now. Get into their ribs. If I could, I would come own there and do your job for you whilst you go and give your doctors the curly finger to come and tell you face to face what they are thinking. Good luck Sarah, and keep your chin up. Macca Link to comment Share on other sites More sharing options...
kempse Posted December 30, 2019 Author Share Posted December 30, 2019 Thank you Macca. I will attempt to speak to the engineer tomorrow and not the oily rag, lol. I've no idea who any of these consultants, mentioned in the letters, are. I've never met my consultant neurosurgeon and neither he or the neuroradiologist who performed the angiogram are listed as being at the MDT, yet there is one of each of these titled people listed as being at the meeting - just not mine - there was also a Senior 1 Radiographer present along with 'Physics' and 'Clinical Fellow' plus the MDT administrator. That's obviously the stereotactic radiosurgery team - Hopefully I will get through to the correct person. A very kind offer by you to come down and do my job whilst I do the business - hopefully it will all go to plan! Sarah Link to comment Share on other sites More sharing options...
Macca Posted December 30, 2019 Share Posted December 30, 2019 Sometimes I think these guys just don't appreciate the angst they cause when they say things to each other, but don't involve you or keep you informed. I feel your frustration and I really hope they see you asap. Macca Link to comment Share on other sites More sharing options...
Catwoman23 Posted December 30, 2019 Share Posted December 30, 2019 I didn’t read all of it since I m at work but it is crazy. If they order something, they need to call you. It s no excuse if it s ten weeks ago. If it was ordered over Xmas , I can understand. I don’t know about over there but we sometimes have portals where you can check your info. I would leave messages, write them a letter. Patients here say they will call the lawyer or congressmen or the evening news. I was told as a resident, if you order something, you follow and take action , otherwise why do we order things? I think that makes sense. my patients mostly are elderly and they don’t do portal but it is useful to some. They can only see limited info . They can see labs after five days so they don’t freak out if we haven’t called them. good luck. Link to comment Share on other sites More sharing options...
Winb143 Posted January 1, 2020 Share Posted January 1, 2020 Sarah I once said to a Hospital Doctor "It is my Body and I want to know what theses pills are doing to me" He told me and I broke down as they caused malformed babies....hence only the one Daughter as I wasn't on them then !! But this is about you and you have a right to know it, is your head, wish you all the luck in the world xxxxxx Link to comment Share on other sites More sharing options...
Chelle C Posted January 1, 2020 Share Posted January 1, 2020 Sarah, I really hope you get all the much needed answers to all the questions you must have, it's all stress you can do without. Good Luck lovely lady. Xx Link to comment Share on other sites More sharing options...
kempse Posted January 2, 2020 Author Share Posted January 2, 2020 Thanks to those of you that have posted on my thread since my last post. To update, I have spoken to the hospital, albeit only with the oily rag and was told that I was in the backlog of getting an appointment through to discuss all this. I told her in no uncertain terms that it was not acceptable that I had found out in the way I had, ie getting Dr. Google to decipher the medical terms and then being frightened to death by what I'd read. I only just managed to keep my temper under control when she said you shouldn't use Dr Google. If they had written to me back in November after the MDT, I would never have needed to. Whether it was Dr. Google or my consultant who explained what this condition is, it doesn't alter the fact that this condition could potentially be fatal. Anyway she said she will make sure my appointment is dealt with asap and get me into discuss it with the consultant. So more anxiety to contend with, Sarah x Link to comment Share on other sites More sharing options...
Macca Posted January 2, 2020 Share Posted January 2, 2020 Hi Sarah, Well done for speaking up for yourself. In this day and age, it's a bit much not to expect you to do a bit of research on the net - why shouldn't you? The only answer to that can be is they didn't want you to know or cause trouble for them. In reality, what they should have done is told you at the time they found out instead telling you off. I would back up your complaint in writing if I were you, not just for yourself but to try and ensure others aren't in the same boat. And if the information per chance isn't correct on Google, then ask them to take action to have it put right. If it is right then they have no reason to be scolding you in the first place, unless they were prepared to give you the information in the first place. If they'd done what they were supposed to you wouldn't have felt the need to resort to the Net. Make sure you chase them up. Also copy them into a written complaint, then they know you are serious and hopefully they will fit you in. Whatever they do, make sure you keep making noises about it until they take action. ie make things happen and make them do their job. That's what I would do! Link to comment Share on other sites More sharing options...
kempse Posted January 3, 2020 Author Share Posted January 3, 2020 Many thanks again Macca for taking the time to respond to my post. That's my view entirely. It wasn't as if I was trying to diagnose myself via Dr. Google or expecting to find anything regarding my own personal case, but as I had it in black and white in front of me that they had made an incidental finding of an AV dural fistula, I needed to know what one was - especially as the very first thought that came into my head when I read those words was AVM and my knowledge of those (albeit it limited knowledge). Not a million miles away from my initial thinking! Anyhow, I will no doubt find out more about my particular circumstances when I eventually see a consultant. - I'm still hanging onto your suggestion Macca that as they have not seen me yet, it maybe a good sign. Trying to remain positive, but not feeling it, Sarah Link to comment Share on other sites More sharing options...
Skippy Posted January 3, 2020 Share Posted January 3, 2020 Sarah - hold on to the thought that if it was "serious" they'd have contacted you by now. I would imagine that if it was putting your life in danger in any way that they would have called you and asked you to come in, rather than risk the delay in post at that time of year. Hope you get that letter through soon so your mind can be put at rest xx Link to comment Share on other sites More sharing options...
kempse Posted January 3, 2020 Author Share Posted January 3, 2020 Thank you Skippy, I am trying to think like that. I now understand that these abnormalities are graded in respect of risk with the lowest risk being just to watch/monitor it and the top end of the scale being a high risk of haemorrhage. I doubt very much I am lucky enough to be at the bottom end of the scale due to the fact that the summary of the MDT is partly getting an opinion on zapping it with radiation (My terminology not theirs lol). I also understand that these can be treated with super glue (again my terminology), so there is an awful lot I need answering which why I need an appt soon otherwise my imagination will be running away with me! Sarah Link to comment Share on other sites More sharing options...
ClareM Posted January 3, 2020 Share Posted January 3, 2020 I really feel for you Sarah as it is a horrible situation not having the information you need to put your mind at rest. I can only reiterate what Sami has said and what I know through my experience of being part of an MDT. If they considered it life threatening or serious you would have been seen by now, Doesn't help with your anxiety which I am sure is through the roof. Try and think positively and if you haven't heard in a week, give the secretary another call or even try and email them. That way it's documented and has a 'paper' trail. Thinking of you xx Link to comment Share on other sites More sharing options...
kempse Posted January 3, 2020 Author Share Posted January 3, 2020 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 Link to comment Share on other sites More sharing options...
ClareM Posted January 4, 2020 Share Posted January 4, 2020 If that secretary did not have the MDT summary on her screen she must have had computer failure or lost her log in! MDT summaries are clear to see on patients records whatever programme the Trust uses. I'd keep on at them Sarah, or go to PALs and make a complaint. Fingers crossed for you. Clare xx Link to comment Share on other sites More sharing options...
kempse Posted January 4, 2020 Author Share Posted January 4, 2020 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 Link to comment Share on other sites More sharing options...
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