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  1. 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.
  2. Hello, I didn't know where to post this so sorry if its in the wrong place, but my mum Win passed away last night. she was fine the early part of last week but on Thursday, last week, she started to become short of breath, had a cough & her feet were slightly swollen. My dad phoned the GP but he could only talk to him over the phone because of the lockdown. GP gave a prescription for penicillin & water tablets as he seemed to think she had a chest infection & he said the water tablets would help with the swelling. I had noticed a slight purple tinge to her fingertips over the last few weeks but put it down to her cold hands because she was bright and her usual self. But on the saturday she was sleeping alot & she was confused & fatigued. The symptoms seemed like a shunt malfunction or another bleed so we phoned an ambulance and they scanned her and all was fine there but we were later told she had partial heart failure? I never even thought there was anything wrong with her heart. They were giving her intermittent oxygen treatment to get her oxygen levels up but the doctors were saying that everytime they would remove the oxygen mask her oxygen saturation was not being maintained & would drop back down? There was no xray of her lungs or heart, no medications to treat the underlying heart condition that she apparently had? They were just focused on getting oxygen into her which they said wasn't working? On Wednesday they told us they were stopping the oxygen and she would go onto palliative care. They phoned this morning to say she had passed away overnight. My dad was allowed to visit her on Wednesday afternoon and he said she was talking and recognised him immediately. I spoke with her on the phone on Tuesday and although confused she was talking. We asked the doctor how could she die so suddenly when she seemed brighter but they told us it was some throat medication they had put her on which was making her alert??? We cannot get our heads around why she died when heart failure can be treated although not curable? It was so hard not being allowed to be by her side. I will be reading some of her posts on here. I would see her sitting there typing away, laughing & smiling. she enjoyed this site so much & it helped her alot after her sah Sarah
  3. 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.
  4. 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 😊
  5. 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 :
  6. Hi everyone, Sorry I’m not much expert in English it’s my second language. I’m Rajdeep Kaur. I’m from India, but moved Australia in 2009. I’m 38 years old mom, have two daughters one 8 years, and younger one 10months old. in January 2020 , I visited to India to meet my parents after 6 years. After 20 days my life changed . I was healthy never had problems like headache. One day I was dressing my younger daughter, suddenly I felt explode in my head. First I wanted to ignored then again unbearable. I cried , my parents rushed me to near hospital ( in India not good systems) , doctor sent us for ct scan then sent for mri , wasted one day then referred to other city. Again new neurosurgeon repeat tests and did angio gram . Finally they SAH premedullary cistern and tense ventricles. My parents have not much knowledge, next day I woke up with VP shunt. Spent 2 weeks in hospital and my husband also came in India from Australia. ATM still we are in India because of COVID. Now headache gone , but still feeling weakness in extremities. Most of time feeling sad and depressed. I asked from neurosurgeon about removal of vp shunt, he said he can remove anytime. None of test repeat again. My husband decided that I should start treatment from Australia. Again apologies for not good in English. Please share your experience.....
  7. Rajdeep, welcome and I am sorry for your trauma but also happy you got treatment whilst visiting your parents but can understand it has been difficult , but your family must have been so relieved that you were at least able to get the help you so desperately needed and I hope having your family around you is comfort even though travel home to Australia is not yet possible for you. take time to be gentle with yourself, no stress if you can, let others help you , eat well and allow time to rest your brain , if you can meditate or have quiet space that will help you rest your hurt brain. i had a SAH at 39 , I was fit and well before hand and my daughters were 6 and 9 at the time. They were scared but we were honest and they learnt to help their mum , to be more considerate and I think they have really gained something positive from their mum being so unwell. That was 8 years ago. I have a VP Shunt placed and was told it would never be removed unless there was risk from leaving it, but for me my damage from the bleed means my ventricles were too damaged from the blood and the condition that caused it, hydrocephalus, is now permanent. You may wish to ask your current doctor team in the hospital more about your Shunt placement I think but maybe you can also discuss with medics in Australia when you are able to return. Do ask if you have questions take care daff
  8. Hi Rajdeep A very warm welcome to BTG. You are in the very early stages of recovery. Some good advice above from Catwoman. It is very normal for your emotions to be all over the place, i was very much the same. I got very frustrated with myself. My children were grown up, i cant imagine how hard is is to cope with two young children, i found it exhausting doing the smallest of things. Maybe you can get a second opinion re your shunt removal when you get back to Australia. I did not have a shunt but there are members here that have and can share their experiences with you. Things will get better, it just takes time and learning not to push too hard. Your body will tell you when you need to rest. Listen to your body and be kind to yourself. Karen the founder of this wonderful support group told me that when i first joined , Wise words Wishing you and your family well and look forward to hearing more from you. Your English is amazing ! Take care Tina xx
  9. Rajdeep

    My story

    Hi everyone, Sorry I’m not much expert in English it’s my second language. I’m Rajdeep Kaur. I’m from India, but moved Australia in 2009. I’m 38 years old mom, have two daughters one 8 years, and younger one 10months old. in January 2020 , I visited to India to meet my parents after 6 years. After 20 days my life changed . I was healthy never had problems like headache. One day I was dressing my younger daughter, suddenly I felt explode in my head. First I wanted to ignored then again unbearable. I cried , my parents rushed me to near hospital ( in India not good systems) , doctor sent us for ct scan then sent for mri , wasted one day then referred to other city. Again new neurosurgeon repeat tests and did angio gram . Finally they SAH premedullary cistern and tense ventricles. My parents have not much knowledge, next day I woke up with VP shunt. Spent 2 weeks in hospital and my husband also came in India from Australia. ATM still we are in India because of COVID. Now headache gone , but still feeling weakness in extremities. Most of time feeling sad and depressed. I asked from neurosurgeon about removal of vp shunt, he said he can remove anytime. None of test repeat again. My husband decided that I should start treatment from Australia. Again apologies for not good in English. Please share your experience.....
  10. 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?
  11. 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!
  12. 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
  13. Thank you Win and Daf for your encouragement, i'm sorry I've not got back to you both sooner. My word I developed quite nasty low pressure symptoms following the shunt operation. I've spoken with the Neuro Surgeon, who said he wasn't surprised this happened as I've had high pressure for quite a while and will undoubtedly take time to get used to the artificial drainage. I'm still on Oxycodone long and short tec for the over drainage symptoms. I've noticed I'm able to be upright for a bit longer until I have to lay down flat to reset my system. I'm stuck at the moment due to Corona Virus lockdown, trying to cope until they can do the operation. I'm awaiting further surgery, where they're going take out the shunt and replace it with a Ventriculo-Peritoneal shunt. They've said hopefully, it'll be a bit less pressure sensitive and have more sophisticated valves that they can programme to help get the best balance between fluid manufacture and drainage. I know now just how much of a struggle it has been for me, it'll be coming up to 2 years end of May since my SAH. But in the flip side, I know I need this operation, I do feel lighter in my head and kinda have been feeling like I'm coming back. I understand that feeling Win, hearing and light sensitivity has dialed down a little too, still have a way to go at the moment, but I'm putting my trust in my neuro surgeon. One thing I do know, I thank my blessings to our NHS God bless you all, Sending much love Keep safe Xxx
  14. Hi Louise Im glad to find this site. I’m not alone. just trying to get myself as I’m before SAH . I want to live without shunt. I don’t know why I’m thinking 🤔 this. Trying to take things easy and hydrated. Sometimes feeling depressed. Hope you’re safe and well. Rajdeep
  15. Hello daff God is good creator for everything. I believe that Nothing in human hands . God choose place for me and my children. My children were safe and secure at my parents home. Even though time was very hard for my parents. yes sure I’m trying to get rest and plenty of water . Some days I feel headache and fatigue. Feeling anxious related to shunt , ‘Why with me “ I was getting smooth my life just last year , had to struggle to get Permanent residents in Australia. Now I’m stuck with thisssss .... not feeling good
  16. Hi there Warm welcome to the site, so glad that you found us. Wow what a time for that to happen to you home visiting with family and Covid not great.... I have a shunt it keeps me alive cant be without mine... take things easy keep well hydrated and remember your not alone - we all understand... take care.
  17. Hi Rajdeep, Hello and welcome...so happy you found this site...I found the wonderful people here to be so thoughtful and helpful as I was healing... You have been through so much and being away from home must be unsettling. I understand you feeling sad and depressed. I do not have a shunt so I can not offer any information on that. I wanted to answer you post to let you know, there will be brighter days ahead with your little ones and your husband. It takes time to heal a brain. Take care and keep us posted. I hope you get home soon. xx Jean I think your English is wonderful
  18. 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
  19. 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!
  20. 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
  21. 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🙂
  22. Posted on behalf of trish103 - Please respond to trish103 I am going into 2 years in November 2018 since my hemorrhage and my Shunt put in I have some I also had seizure back in February this year has any one else had a seizure I feel like my eyes are always dry and tired and are getting worse since my eye appointment last September I am going back to eye doctor this September does anyone experience problems with there eyes and ear when I get a cold it all feels worse because where the shunt is behind my ear I always feel clogged. Does anyone else feel this or had a seizure? trish1013
  23. 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
  24. 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.
  25. Bev, so you will have been high pressure before surgery and living with that and now the Shunt is going to regulate it to keep it lower, your brain is going to take time to adjust to this new state. I imagine you are feeling very sick, noise and light sensitive. Make sure they keep your anti sickness medicine smoothed out m I had sub cutaneous slow release pain release which meant I didn’t have spikes so much of pain, Try lots of small meals, ask people to bring you snacks, you appetite will feel supressed but try hard to eat small and often, also if you feel really bad have a can of full fat coke. I don’t think this is medical advice but it’s what my neurosurgeon suggested post my Shunt surgery. try and Lie as flat in bed as you can bear and then when you get up to sit go really slow, really really slow, imagine your head lifting but tiny bit by bit. Then swing your legs around and just sit on side of bed. Take your breathes and stay put for a few minutes, five if you can. Then try standing but don’t go anywhere unaided and always sit back down before lying down if you can. Then lie back but slightly elevated this time. Notice the difference. Suggest you ask for commode or wheelchair to bathroom in the early day’s, Practice that kind of movement before you start walking movement on your own and no sudden ones for now.keep your sunglasses on in ward! youve just had major invasive surgery, it’s going to have a real shock to the system I’m sorry to say but you will learn what is new state of balance. Not sure if yours has a gravitational valve , that can make a difference too. Ask if if there is an hydrocephalus nursing team, can anyone come and talk to you, that helps too. Shared experience of post surgery. Practices breathing and relaxation. And sleep as much as you can, it helps the brain settle from it’s heightened state of attack . sending gentle healing thoughts. You’re in the Shunt club now. Xx
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