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Showing content with the highest reputation since 21/05/20 in all areas

  1. 7 points
    I am so glad to have found this site or to be honest my wife did! I have been in touch with "HEADWAY" and they have been great but this site seems so interactive and understanding. It has been more than a year since my SAH and all the complications that I endured ie Hydrocephalus,drastic decreasing of sodium and Vasospams. I really do not remember the event happening but thank god my wife was here with me when it happened, or I would not be here talking about it. I have a shunt fitted and would love to hear from others with one implanted, as I have had problems since I have recovered. This site proves the old adage "It takes one to know to know one". Many thanks!
  2. 4 points
    Iola, It’s nice to hear from you, I’m sorry you are finding things troubling at the moment but you are doing the right thing which is to come here and talk , we will listen . stress is rubbish and doesn’t sit well with our damaged brains. yes we heal, we adapt to change and we go on to rebuild lives but our resilience to weather emotional trauma I think is never the same, we react differently, it effects us in much more vivid ways and so we have to try and notice both our triggers and our traffic lights. what do I mean? Well for me being around toxic people is a real no no. A trigger which will raise my BP and my cortisol levels , I jettison them fast these days or just exit the situation ( safer than saying what I feel) which makes me less popular that I may have been previously but I don’t want their complaining, ( I can hear Win echoing that to me from years ago to stay away from those that moan, she was right! ) . also when I do too much or am emotionally strung out my brain shows me in odd ways, stiffness in jaw, pain in phrenic nerve , and I know I need to heed that and slow or stop and take some quality quiet time. Healing space to be kind to me, my body and my brain. I dont want to run a red light, Ive run so many , it hurts too much, so I pay heed now, it’s all I can share. I wish you well.
  3. 4 points
    Hi Macca and Louise Many thanks for your replies. We had already filled in the forms ourselves but we will get advice when we do the appeal letter. Again many thanks for the advice -be safe and be well to you both.
  4. 3 points
    Sean, I am another member of the shunt club, mine is also altered magnetically. I can't even remember having it fitted so I don't know if I had it reset in the early days. I have had later MRI's which have altered my shunt setting due to the magnetic field. It was just set again to the original setting. That is a very easy procedure which only takes a couple of minutes. As Daffodil says, it can take quite a while to get the correct setting for you, bit like trial and error. Have you ever thought of asking for a sedative prior to a MRI in the hope that it may help you to tolerate one?
  5. 3 points
    Hi Daff and all! I have been for an MRI on several occasions, even the mobile one parked outside the NHNN entrace, each time I panicked and only managed to last about 5 minutes in them, so no clear result. They are organizing an 'upright' scanner for me, but it's a Harley St job and there is a waiting list, but I've been told I'll be a priority, so I'm hopeful. My shunt can be magnetically altered to different settings, mine is on 5 and I have had follow ups with the Hydrocephalus specialist nurse who was great! I still get pain down the back of the shunt side of my neck, also down my ribs to the abdomen, this the drainage tube. I had never even heard of Shunts before my SAH and thought all brain Haemhorrages were fatal, what little do we know! Thanks everyone!
  6. 3 points
    Hi there Warm welcome to the site, glad that you found us. I too have a shunt and also a tube in my brain isn't Science just wonderful.. Take care
  7. 3 points
    Hi Sean, Like yourself and Daffodil I am a fellow NHNN patient. Had my bleed five years ago and had my shunt fitted about two weeks after. I had an EVD before this and was not able to come off it. From my follow up appointments I know I am still hydrocephalic (to be fair I can hear the shunt draining anyway). Thus far the setting I have has worked. Since discharge I have had an MRI every six months which have literally just dropped to yearly MRIs for both my brain and also spine (I developed a rare side effect of arachnoiditis and arachnoid cysts on my spine, which need monitoring). Getting used to everything post haemorrhage takes time. Even five years down the line I am still adjusting to life post haemorrhage. Daffodil's posts about her hydrocephalus are useful (I read them after my haemorrhage). Take care Gemma
  8. 3 points
    Welcome to BTG and very glad you found us. I don't have a shunt but there are a couple on here who do, so when they see your post they'll be sure to reply. Can you tell us a bit more about yourself - especially the circumstances surrounding your SAH? Take care and feel free to ask any questions you like - we cannot offer medical advice, but we have a wealth of knowledge and experience.
  9. 2 points
    Hi! I also had a SAH 7 years ago, have a 14 year old daughter (and 10 year old son & 2 year old daughter). I have primarily been a lurker on this board, but I wanted to let you know that I relate to so much of what you post! I feel the same on the outside but still struggle with word recollection, my memory isn't as strong as was and I have a constant low grade headache. I strongly believe that stress caused my original SAH, as does a friend of mine who is a nurse. Ultimately my neurologist told me that I will never know the true reason as I didn't have any obvious reason for my first bleed. Sending hugs and wishing you well.
  10. 2 points
    Karen Thank you for your reply. I wasn't sure if I was just being OTT with it. I'll write down my questions. I hadn't thought of speaking to the GP, she is not that experienced with this sort of thing but will get the migraine side of it I would think. On the whole I'm not too bad on the stress side. I'll stop what I'm doing if I feel a headache getting worse and try to remain calm about most things. There are times though when I remember the time bomb and go a bit wobbly!!! Another cup of tea!! Lynne x
  11. 2 points
    Hi Lynne and welcome... If the op should have taken place in March, then if it were me I would definitely push to get the op re-scheduled. Write down a list of all the questions that you need to ask your surgeon, as it's easy to get distracted and only realise when you've got off the phone that there was something important that you needed to ask. Tell them that you've got a list of questions, as most are pretty good in understanding that our short term memory is a bit shot post SAH. Make the most of the opportunity to speak to him/her and also ask him about question no 2 . No question is ever too silly either. The stress and worry to you won't help the symptoms that you're currently experiencing. It might also be worth contacting your GP to see if there's anything that they could prescribe to temporarily help with the flashing lights/dizziness. I suffer from occular and classic migraine and the aura/flashing lights is normally an indicator that I'm going to probably get the mother of all headaches! I was put on a medication called Propranolol and it's greatly reduced the incidences of them. I wish you luck and try to keep your stress levels down as much as possible. x
  12. 2 points
    I was told at my first clinic appointment after my SAH, that if I ever needed a MRI scan I needed to inform them of my shunt. Our local hospital can't reset shunts so for any MRI I have to go to a hospital that has a neuro dept and the facilities to check and reset my type of shunt. Initially, approx. 14 years ago, the procedure was to have a skull xray before the scan and then one afterwards to see if the setting had changed. The radiographer was very good and showed me the before and after films and yes it had moved. I then had to have it reset to the original setting which, at that time, meant getting my notes to check what the setting was initially. At a subsequent MRI there was no xray, just a nurse with a piece of equipment that read my shunt setting prior to the scan. She came back after the scan , checked it with her "toy" and it had moved again so she just reset to the original. Those checks and reset were actually done in the waiting room , so quick it was. Going off the shunt subject, I have permanent dizziness. Rightly or wrongly as I am not medically trained, I believe that my permanent dizziness was caused by the hydrocephalus and not the SAH. I didn't get rehab or I may have managed to conquer it at that time. Apparently physiotherapy can help. I now have coping strategies that I have learnt myself by trial and error that help. If Sean isn't having physio it may be a good idea to request it as the earlier it is put in place the more chance of success.
  13. 2 points
    Hi All - I am Sean's wife Julie (think I spoke to one or two of you on my post re PIP). Firstly I wanted to say thank you - Sean is over the moon to be able to chat with people who have had similar experiences and I have noticed a change in Sean in that he looks forward to coming on here and learning and reading and corresponding. Super Mario - I wanted to ask you a specific question if I may regarding the fact the MRI changed your shunt setting as we have been getting a lot of conflicting information (Sean knows I am writing this as he is watching me 🧐). When the MRI was first mentioned (we knew they wanted to do one 6 months post SAH) they knew Sean was claustrophobic so suggested the upright then dismissed it as shunt was not suitable. Anyway as Sean said 2 attempts on MRI's and now they are saying the upright is suitable. Anyway - apologies I can rumble on - my question is before your first MRI were you told that your shunt could be altered by the magnetic field or was it a complete surprise to you that it happened? Because of Sean's dizziness they need the MRI to check everything before they decide if the shunt setting is correct or whether the dizziness is something that will be there permanently. As well as checking the coils and the 2 untreated aneurysms he has. Again many thanks and will try not to hijack Sean's post again but interested in your reply Super Mario 😊
  14. 2 points
    Hi Sean, fellow National patient here and I also have a VP Shunt fitted. Here to tell the tale thanks to the amazing staff there and the work they did and have done since. I remain a outpatient at the National and attend Shunt clinic annually now but I had MRIs annually until last year as also have smaller anneurism and a neck on my coiling they kept watch on. They are a great team, and I recommend the Neuropyscology follow up if they offer it as really helped me in the first couple of years post mine. MRI scanners at NHNN are very loud ... I take my own ear plugs to wear under their headsets and I also make up silly songs to go with the strange banging and clanging ....oh and suck a polo before I go in , that calms Me and was a great tip I got from a lovely woman I met here who reassured me - Win. I think I must have had over 10 scans in my first year which is crazy really as initially i didn’t have a Shunt fitted just an EVD but after my first discharge after 7 weeks in I ended up back at queens sq and requiring more surgery for Shunt placement and then it took a fair while to get setting right for me. I’ve tracked on here my recovery with hydrocephalus so I’ll try and find that and link for you. Feel free to ask me any questions, Go steady and slowly. No race or rush needed. Try to sleep a little upright and make sure you eat frequently Ps have you seen the cat statue in queens sq gardens, I visit every time without fail. First thing I remember from when I finally wheeled outside for fresh air ... Edited to add link :
  15. 2 points
    Thank you for the link you sent me Subs, it was very informative. My SAH occurred in April of last year, it was totally out of the blue and it happened whilst I was sitting at home beside my wife. I do not remember it but my wife said I was going mad with pains in my head and neck and my temperature was getting higher, so she rang an ambulance and I was taken to University College Hospital and they transferred me to the National Hospital for Neurology and Neurosurgery at Queens Square. They fitted coils and a few days later I developed mild Vasospasms and my sodium levels plummeted, within a very short time I was diagnosed with Hydrocephalus – everything that could go wrong was hitting me! I had an emergency procedure to have a shunt implanted, the pain in my head and especially my neck was still bad and I was suffering double vision but I was getting slowly better and after 4 weeks I was discharged. I am lucky that I am still monitored by the National hospital especially as I have 2 small untreated aneurysms which are too small to coil. I still have impaired vision but not seeing double, my balance is not great and I have bouts of dizziness and my jaw hurts and clicks when I am eating. Everyone involved were fantastic and I just need to get over my fear of MRI scanners, but apart from all of that I am doing well🙂
  16. 2 points
    Hello and also a warm welcome to BTG. The after effects of SAH are varied and often complex depending on the nature and position of the bleed. When discharged survivors are often left with so many questions unanswered. This is in the main because every case is quite unique and only as time passes do you and your family become aware of how debilitating or otherwise your brain trauma has been. As Sami mentioned, there are members who are recovering with shunts, and shunts have been the subject of much discussion on this site. The following link will provide much information for you meantime. https://web.behindthegray.net/search/?&q=Shunt&search_and_or=or We look forward to hearing more from you when you can. Meantime I wish you well as you deal with your recovery. We are here to help and support you. Subs
  17. 2 points
    Hi there warm welcome to the site glad that you have found us. I think everyone feels that concerns about re-bleed as time passes that feeling should lessen it did with me... Yep 'we do get-it' take care
  18. 2 points
    Hello Paola .... and a very warm welcome to BTG. You are right .... here you are in good company and you will find great help, support and reassurance as you read the recovery journeys of our members and discover their wllingness to help you with any questions you may have. You certainly were dealt a harsh blow nine months ago firstly with the SAH and then to suffer a debilitating stroke. You have done so well to regain what you feel is 85% of where you used to be. SAH recovery is still a lengthy process depending on the extent of the brain damage caused by the bleed. The majority of survivors discover that they are aflicted by headaches, tiredness and frustration. The latter being that you want to return to the 100% you were before, but in different ways, you know that life and emotions have changed considerably. Returning to work, and managing the usual housework is often a big challenge going forward. The anxiety of possibly having a rebleed is often felt by our members, however the facts borne out even by this forum members, is that it is very rare indeed. Hopefully over time this will become something that finds it`s way to the back of your mind. Often your immediate relatives are even more worried about a rebleed than you are yourself. I do hope you have family and friends who have supported you along the way so far. Please don`t hesitate to ask any questions of our members and we wish you well as you continue your SAH journey. Subs
  19. 1 point
    Hi Ggirl, Welcome to BTG as we call it, so sorry to hear that your dad has suffered SAH and is in ICU. I was not sedated after my surgery so sadly I can't comment on that, there some members who I am sure will come along and share their experiences of this with you. You have come to a great place for help, advice and support, although we can't give medical advice, we can share with you our own experiences of SAH although you will find that everyone's SAH and recovery are different, we have all taken the journey that your dad is now on. Any questions you have feel free to ask, we are here to help you to understand what may lie ahead as your dad goes along the recovery road, also to support you as you must have so many questions, it can be a very scary time for the rest of the family when they have a loved one in this position, don't be frightened to ask questions, we are a friendly bunch and where we can help, we will. If you go into the page Introduce Yourself, maybe you could tell us a little more about what happened to your dad, also tell us a little about yourself too, you will get a lot of replies by doing that, only if you want to do it though, you don't have to, it just helps us to understand your situation a little more. I would just like to wish your dad well and please take care of yourself to during this difficult time. Love Michelle xx
  20. 1 point
    Lynne , agree I would speak to GP and ask them to refer as well but definitely speak to the consultant in June i think we all are wary to be in hospital inthese times but equally I think if the procedure was deemed to require surgery and now things are not improving but actually new symptoms it’s time to have the conversation. Stent diversion is less invasive people have reported than being clipped, so through the groin as per coiling I think but I’ve not had that experience of a stent. Others may be able to reply on that. Good Luck, keep us posted x
  21. 1 point
    Hi all A newbie here. I came across this site by accident and wish I'd known about it before. I had an unruptured right sided ophthalmic aneurysm clipped 2 years ago and was diagnosed with another on the opposite side, same place, last September. They found the second one as I was still having visual problems so they investigated. To be honest I was surprised to hear I had another one but had no obvious symptoms and was told it would be treated. I was seen in December 19 and advised a flow diversion stent will be fitted which was booked for end of March 20 which of course with the current Covid situation was cancelled. I have two questions. 1) 8 months on from diagnosis I now have, and have had for some time. symptoms due to the location of the anni - vision, flashing lights, permanent head pain, dizziness. I've managed to get a video consultation with my surgeon on 3rd June after emailing him directly. I'm concerned about the development of symptoms especially as with the last one they were very keen to fix it quickly. I don't know whether to say I consider this to be urgent now? I've had no real feedback from the hospital and was just told they'd be in touch at some point. I want to make the most of this appointment so I'd like to know what others think. I believe the risks of attending a hospital are much lower now, I have no symptoms of Covid, the hospitals are beginning to see other patients. Would others push this with the surgeon? Or should I be patient and live with the symptoms and the every day fear that the anni is growing and could rupture at any point. 2) I only have experience of being clipped. The recovery was long and hard. What are others experience of the flow diversion? I'm self employed now and would rather not take a long time out. I will of course if I have to but what on average is the recovery time and the level of discomfort afterwards? Thank you in advance. Lynne
  22. 1 point
    Hi everyone, It has been awhile but I've been on a ride that is hard to explain. Hit my seven yr mark this year in April and that is a big accomplishment. However, I started having dizzy spells and one day I felt like either a neuron finally found its mate, in my brain, or some electrical current shorted. It was not painful but did give me a sensation of twirling quickly and then stopped. Scared me to death but I knew it was not a bleed because there was no pain. But, I was like, "what was that?" Head was heavy and hurt and kept feeling dizzy. Went to dr and had a MRI and all clear. Then I realized a few things, I was taking an abundance of vitamins, my stress level was high because of a new project I said I'd work, and my daughter has had some health issues we need to combat, not to mention she is almost 15 and sassy. I stopped taking the majority of the vitamins and started feeling better. Now, my job. I have complained throughout the years I need to stop working and I need to push away from stress but something always brings me back to my work. With the last two months, I held on tight to my job because of the unfortunate folks that have lost theirs and my heart goes out to them. The other is this sense of independence I feel when I work. I cannot say I love it but it's what I know and maybe that's the problem. As for my daughter, she is my heart and worry about her future. I just read in an article about a woman that had a SAH and she feels it is due to stress and lack of sleep. It's scary to think what stress can do to the body. It tortures the body and brain. So, I went to see a neuro psychologist and had one session with him and now cannot seem to reach him again so I guess I am seven years too late talking about what happened. So, that's done. So so here I am talking to you because, well, it makes me feel better so thank you for listening. ☺️ iola.
  23. 1 point
    Hi there I haven't got a shunt after they took my temporary one out but anyway I have brain zaps lightheadedness and headaches even after 18 years it's worse when I haven't drunk any water so make sure you have plenty of also gets worse when I do to much or am really tired xxx Hope things improve for you soon xxx
  24. 1 point
    Hi Sean and Julie. great reply from SM which I hope will Help you. Hydrocephalus itself is pretty damaging to the brain and like SM I think the impacted balance and dizziness was mostly the lasting effect of that although equally caused by bleed too but 8 yrs on I’m so much better now and can do most things. Sean not sure what Shunt you have placed , I have a Meithke ProGav, but most placed these days have gravitational valves, adjustable external magnetic setting which also can be checked using a special tool which the specialist nurse can look at. (Mine is being monitored because we aren’t sure if my valve is playing up but no Shunt failure symptoms thankfully . To check setting Its very simple , a sit downpainless procedure. ) Pre any MRI they will confirm what Shunt you and as a result there should be no issue to the setting but the scan team should confirm that before you go in. Do speak to the Shunt specialist too if you have concerns To check on actual Shunt function they’ll often do a ‘Shunt series’ which is a X-ray of the tubing in the abdomen and neck to check any blockage etc and then will often elect for a CT scan as they just look at ventricle size changes. When they do a MRI it is going to get that closer look at the blood vessels plus check ventricle size so that’s more about the SAH bleed , how the coiling is holding and other aneurisms, overall brain health. That’s been my experiences and how it was explained to me. With my decisions for changes in setting we based it very much on what I thought would improve my quality of symptoms and frankly my getting worse not better. Also because I had had three months of living without a Shunt I knew exactly what high pressure hydrocephalus felt like for me and equally low pressure symptoms as well as I went on to have many lumber punctures which drained off CSF before Shunt placement but which sent me low pressure. So I could tell that my setting of ‘5’ kept me way to low pressure for me. I would fall over , I felt nauseous all the time, I had pain in my eyes, neck and had fingertip pressure pain all over my head but always felt better lying down. So we gradually increased the setting over a period of months. It wasn’t an easy period , I went back in overnight a few times because they were concerned I could have CSF leak etc but over time we found ‘my’ setting and I had to then adjust to living with a Shunt whilst recovering from bleed. With a Shunt Our brain juice control system is not the smooth automatic system it was anymore but a little clunky and awkward , I hear it whirring n . draining, as it does it’s overflow work but I know when I have had a big valve release and I have an ultra sensitive reaction to barometric pressure , (that’s a symptom and something we all have shared and find we have in common on here.) SAH recovery with hydrocephalus and dealing with effects of a bleed is essentially two conditions , both causing brain injuries colliding and it can be a little bewildering at times but do keep a diary and track how it sits with you. You will know your body and what feels right. i know the MRI scans are tricky but yes agree maybe ask if they can work with you to help you feel more comfortable with the procedure . take care and glad it’s helping to talk.
  25. 1 point
    Suffered my haemorrhage in June 2004, treated with coil embolisation (11 coils) at King’s Collage Hospital, London. Over the following years had another four embolisation (23 coils) plus A stent. Took about five years to get anywhere near back to my old self, my wife doesn’t agree that I’m close to the man I was. Still get tired easily especially when taking on anything that requires intense concentration. Consider myself extremely fortunate as I’ve seen sufferers that have been left with severe morbidity, so if you’re anywhere near the person you where before your event consider that a plus and make the most of what you have. The worst thing you can ask is “why me”.
  26. 1 point
    Hi Paolo, Welcome to BTG, so sorry to hear that you suffered SAH and a stroke, you have come to a great place for support, advice and friendship. We all get it because we have been through it and although we can't give medical advice, we can share with you our stories of our recovery journey. I also had SAH and a stroke, my stroke came 6 months after my bleed, they were not sure if the 2 were connected, my stroke also affected my right side, I was fortunate only to be left with some numbness on the inside of my right foot and I still have slight weakness in my arm and leg but nothing that I can't cope with. It is good to hear that you are recovering well. Still take care as fatigue can be an after affect of SAH, drinking plenty of water and resting when you are feeling tired will really help. The fear or concern of having a rebleed is quite normal, I don't think any of us here have not had that worry, as Louise said, as time goes on it does become less of a concern. It is sometimes just nice to have somewhere to come and off load your worries and fears with people who have an understanding of what you are feeling, I will be 6 years since my SAH in June and I can honestly say that this site has been my saviour, everyone is very welcoming and friendly, it's like having a second family. I wish you well as you continue along your recovery journey. Love Michelle xx
  27. 1 point
    Hi everyone. My name is Paola and I am 9 months post an unexpected SAH which was followed by a stroke affecting my right side and leaving me with double vision. I spent a week in ICU, several weeks in a recovery floor and then several weeks on a rehab floor in the hospital - in total, 6 weeks. Learning how to walk again, feed myself and simply just learning to do simple tasks like brushing my teeth. Fast forward to today, I am 85% back, working, driving and just so grateful for my recovery and really... just to be alive. Like many have said, now that I am at a point or regaining some sort of control of my life I am plagued by moments full of concern about a re-bleed. I am very glad to have found this forum; it is comforting to share the fears and successes and express emotions with people who just get it and also to be able to read encouraging data supporting the unlikelihood of it happening again. Thanks!
  28. 1 point
    Hi there Warm welcome. I applied for PIP and wasn't turned down thankfully, just wanted to say I went through CAB (citizen advice) and cant praise them enough, don't fill the forms in yourself as they have correct terms to put in... I hope you don't have to wait too long for the right decision to be made...
  29. 1 point
    Iola, good to hear from you! Get on here and vent all you want. That’s what it’s for. Believe me, I know how stressful raising teenage girls can be. I raised two. Good luck! Let us hear from you often. The folks on here are happy to help. Casey
  30. 1 point
    Hi, As Supermario says make sure you appeal within 28 day of the the date on the decision letter - not from when you receive it. Unless theere is something blatantly wrong, the DWP will usually back their own, original decision. So try and get your appeal letter prepared before it arrives so it is ready to send off straight away. You can always amend it slightly if there is something unexpected in your letter. Make sure your letter says I wish to appeal the decision of --/--/----. When the appeal date is due, make sure you attend. The decision will more likely go for you if you attend than if you don't. DWP don't even attend a lot of appeals anymore. They are currently losing about 70% of appeals. It seems they are playing a percentage game. The people hearing the appeals are generally very nice, so there is no need to be nervous. You can take a friend with you or a representative if you wish. Good luck, Macca
  31. 1 point
    Hi Mario Many thanks for the reply - as I said in the OP I was looking for anyone with recent experience - would never expect to get "advice" online. Saying that many thanks for the link to yourable and the information you have provided - it is certainly been helpful and will give me something to look at over the next day or so. We are aiming to call on Friday to do the MC but wanted to have a better idea on what to expect and you have certainly given me that. We realise that this is a long process and current events have made things so much longer. Stay safe, be well in the current climate and thanks for your reply.
  32. 1 point
    So so sad to hear of the passing of the amazing Win. Always had a cheery tale to tell and positive words for newcomers. Our loss and a new angel for heaven xxx RIP Win xxx
  33. 1 point
    I don’t even have words to say. I am very sorry for your loss. I was just thinking about her this weekend. RIP😿😿😿😿😿
  34. 1 point
    With many thanks to those members who are making a monthly donation towards BTG funds.....It's very much appreciated! x Also, a big thank you to Marobinson71 for a very generous donation and it will help to keep BTG up and running for a further 3 months, which is fantastic! Thank you guys! x
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