Daffodil

Hi Liz and welcome. Thee are a few members of the shunt club on here I had mine placed last July after the hydrocephalus that i got with my SAH returned a few months on. I've had a few ups and downs with the shunt but I now appear to be at a good setting for me and life is a whole lot better. It's taken a while and it's hard to know what's SAH recovery and what's shunt effects and recovery. Happy for you to PM any questions. Daff x

Hi there. Good to hear from you and sorry to hear about your husband but it is promising he's doing well physically. I would guess that maybe he is struggling with the effects of the SAH that they don't neccessarily warn you about, tiredness, tingling, continued pain. That combined with being back at work he may be struggling a bit and doesn't want to burden or panic anyone further.... I often felt i don't want to add any more drama to the family so I know I have avoided and kept quiet in the past, I'm getting better now at sharing but in the early days I defnately hid how unwell I still was, from myself as well as others. Perhaps you could talk to him and tell him that you found this site and read how hard people have find going back to work after SAH, there a huge thread n here about that on here. And it's true, it is. I am only just starting back next week after 14 months out and will only be doing a few hours and that's going to be hard so if he's full time back after 3 months then others who have done similar to him will attest that his brain is probably complaining loudly . Others will offer better advice but great that you're here. Don't push him though, let him know you're worried. Is there anyone else he will talk to? A friend? GP ?Might be worth suggesting.

Just spent some time with my best friend and I was saying how the gift of the SAH to me is I'm no longer scared of dying. Karen's quote could be mine. She sums it up well. I knew something was really wrong with me that's for sure but I never got scared, it was like the moment my SAH happened it moved me far far away from what was physically taking place. It was peaceful wherever I was. It was only Afterwards the incredible pain came. I can remember nothing from having a pleasant drink the night before in good company and then five days later wondering where the hell I was and what were all the beeps and tubes. It's how I imagine a lightening strike to be.

Hi Dave, I hope you are doing ok. Welcome to BTG. Sorry to hear you can't teach bikers for a while. It's may be a question for your GP. I posted up a link to a guidance document on the DVLA thread and I know a couple of other members got good support from their GP. I think the rules are clear that there is always license removal when there is seizure or any invasive head surgery, but less clear after that. But it appears that If the anneurism is considered managed whether coiled or uncoiled then you are probably ok.

Like you karen I also have another anneurism being watched in addition to my coiled large one with its neck and of course James Shunt. I am presuming that the questions asked by the DVLA have been satisfactorily answered after they reviewed my medical report from my consultant and as of yesterday they are happy for me to drive with no restrictions based on knowing I have all the above. It is all a little curious. The best source I found was the link to the document I posted on the other DVLA thread. That is pretty comprehensive as to what would be grounds for medical removal of license. My other quandary is I haven't worked out whether my insurance will be affected. That's probably a whole other thread.

David, I did a blog update today about how i feel on surviving and included an analogy in it strangely enough about what my brain feels like. I include all of you in the people who surround me by the way. http://popgoestifty.blogspot.co.uk/ It's part of my recovery plan to concentrate and write stuff down.

Rachel. That is such sad news about your lovely mum. I'm so sorry nothing could be done to save her. For those of us so very fortunate to make It through a bleed we saw the shock of the suddeness of the event and the toll it took on our loved ones. You have that shock combined with grief so I hope you are getting support to help you through this hard time. It seems to depend so much on so many factors all of which are beyond anyones control whether you will survive a SAH. Where you are, where the bleed is, how severe it is , how your body reacts to it and a lot just comes down to sheer luck. People can and have survived large bleeds in complex places , but many, most, do not. I would say though that it's a nice memory to keep that she was laughing and had no pain and also that she helped other people through organ donation. She sounds like she was a super lady.

Probably down to my Mums Gill. She lives down the road so it will be a short and sweet one. Thanks . This is a big deal for me. The kids will be thrilled.

Can you keep a secret? I phoned the DVLA and they told me theyve issued my license back to me today:lol: I've phoned and put my insurance cover back in place so I'm going to surprise the hubby tonight...actually maybe that's a bad idea, we are not all that keen on surprises any more. So it's 13 months and 11 days since I last drove. I will take it very slowly and very safely indeed. Promise.

I had high blood pressure picked up by chance at a work event about four months prior where I had organised a team to come in and run spot health checks...I was the only one who needed follow up...no irony there then. I had an ECG and bloods as it was unclear to the reason behind it. During both pregnancies i had normal BP so it was odd that it suddenly was alarmingly high .Tests all came back normal so the docs decided that we would just monitor it without medication and I was popping down for weekly readings ....next thing you know I am coiled, shunted and fully BP tabletted up ...but I don't think anyone would have suggested a brain scan with that little to go on. I didn't have any headaches just the very odd backache the previous year...

Hi melody. You're not alone. the waiting will be hard but make sure you are looking after yourself. Dad would want, no need you to. Induced coma is the norm for many of us post SAH and there is no definitive answer about how long they keep you there but it can't be rushed and it's the best way to start the healing. I was kept under for three days before they roused me, others have been under much longer. It sounds like your dad got prompt attention, that really helps in my experience. my best wishes to you and the family and I'll include little prayer for your Dad when I say mine tonite.

Hi, just to add that I read this article and thought I made a lot of sense, especially with Kris talking about PTSD http://psychcentral.com/news/2009/02/27/treat-stroke-victims-for-ptsd/4463.html

Win, I had a strange feeling in the year before my SAH, a restlessness that I couldn't understand and it made me very uneasy but strangely calm and settled. I booked us the trip of a lifetime because I thought we should just do it whilst we could. We did. Ranching in California and the coast road from San Francisco to LA. joyeous! I wrote to people I hadn been good at keeping in touch with and we had more fun than we had had in ages. Then whilst I was walking the dog the weeks just prior to my SAH he no longer ran off in front of me but walked close by my side and was like glue at home. It freaked me out to be honest. I remember saying to the dog one time ' is there something wrong with me?' I felt there was but honestly felt well apart from a very bad back pain which people have suggested might have been a sentinel bleed. I'll never know. The dog knew! Ironic thing was when I had my SAH it was on my regular day off , Another week and I would have been on that long dog walk, but instead I had worked in London for a favour and it saved my life.

Hi Mat Glad you are physically starting to heal but the emotion of what has happened is a rollercoaster and keeping any of it hidden will just hurt you more I fear. I used to try and hide my tears and worry in the early days for fear of further upsetting my kids ( aged 9 and 7) and husband further. I tried unsuccessfully to pretend I was ok. Then I would explode with anger over stupid things. So much for that plan. So I stopped trying to hide, to cope on my own with the enormity of what happened and asked for some help. I talked to Headway. I got myself a counsellor. I spoke to the GP. I opened up to my husband, my family, my friends and it was really hard to do all that, to make myself even more vulnerable it felt. And then it felt safer. I know that bottling the tears up is not good for a brain trying to heal. We have all had to face the truth that SAH brings us of our own mortality and fragility. Thats Never an easy journey and any emotions that prior to SAH you could just ' deal with' now take so much energy it's no wonder we get cross easy. Once I started talking and not trying to cope with this all on my own the outbursts stopped. If I get very tired now then I am defnately shorter tempered but im actually probably overall a calmer person now than prior to my SAH . Please talk to someone. You're talking to us but you need to have someone close to help you navigate this choppy water. I hate to think of you crying in secret. Everyone needs a cuddle when they cry. Take care.

Thanks team BTG, knew you lot would help me with my pickle of a problem. Skippy and Sarah its good to get the perspective from Further on the recovery line. I can see not wanting to be ' the person who had that awful thing happen' is probably where I am headed to in time but right now wrestling with the ' but cant you see im not better' ....ah well. Lin I think your perspective on the British attitude to disabilities , especially those that are hidden, is spot on. Kris, the meditating is helping me live in the now more, glad it is for you too. Michelle, my family are good at checking my eyes, that usuall tells them how I am that day, sound like your DAd gets it. Win, your sister sounds a hoot. Dawn, I think do the article by the way but keep it honest! What was hard as well as good. Mary almost forgot to tell you how well you look with your hair naturally grey:lol:..

Let me start this thread by saying I have come a long way in 13 months and I genuinely manage to feel the blessing in that most days. So why do I get so frustrated when people say 'well you're looking well'. I mean there's a compliment in that, they too are obviously pleased I'm not looking like I did in previous months, and I don't like to look ill, nor do I wish to offend by replying ' well actually I feel like poo'. Thing is my appearance now often belies how I am feeling most of the time which is tired, achey and uncomfortable. My hair has grown back and the shorter style is covering my shunt scarring and bumps nicely, ive put my weight back on, i dont stumble as much and my eyes show im in less pain. I still look very tired but to meet me you wouldn't know what had happened and i often feel placed in the same boat as someone recovering from a nasty cold. Someone complained to me the other day about their head hurting and I found i was irritated by that instead of sympathising. How mean was that? Is that my ego talking, have i got too used to being centre of attention that I can't feel the empathy to others? So is this part of the adjustment and acceptance folks? Is this about my realising that as my visible scars and physical signs of trauma fade that it is only me that knows that actually its not ' better' that I feel, just ' improving' . I know i am privileged to be recovering so Is it cruel to remind others that how I look doesn't always correspond with how I'm physically feeling or should I just smile and say ' why thank you kindly'. what do you do?

Hi Tulip. Sending a virtual hug to you and your mum. I read your story in the 'introduce yourself' area. I sincerely hope that today sees some change and improvement for your Dad. You mentioned that he has had a drain put in, an EVD? I can only share my experience that when mine got blocked and was raising the levels of pressure in my head I was a very happy bunny. Higher pressure is bizarrely quite a euphoric feeling, for me anyway ( I've had this a number of times). Then when the fluid is released either through a lumper puncture or new drain and you then go back to lower pressure it can be the opposite and you feel dreadful. Your Dad may be feeling the effects of this. All you want to do is lie still. Take each day as a new one. As a nurse you will be able to make sure he's getting the best care. Don't look forward to far and don't look back either, no good comes from that so just celebrate any improvement. I knew people were with me and never felt alone, I could feel their love. I couldn't hear them, I didn't know them in the early days but the presence was a comfort as yours will be for your Dad. My prayers and best wishes for you all.

Hi Philip and welcome. When I get tired post SAH it feels like my brain realises its almost out of energy so it shuts down less crucial functions, talking, balance, vision. I also find my pain levels spike. I have learnt that I just have to stop when that happens and not try and push through it. It's very early for you and you're doing well but remember to keep things a bit slow as you're still healing massively. Take care. Daff

Mary, cross pond politics will never end well!! I've had many late night beer laden discussions about what and how the government and rules here are that often impede what would be a US citizens core civil liberty, and similar disbelief that you can buy a gun at the same time as your twinkies. I think our driving decision and guidelines are sound in principle, when applied properly and when you can get into the detail, BUT the process and beuracracy to manage it is abysmal. I got my letter today from the DVLA. I have to wait up to another 12 weeks:confused: no reason other than it can take them that long to process it. I dont mind waiting for the NHS doc who saved my life to take his time to fill in a form. I don't mind and totally agree with the logic that says I shouldnt drive after they cut my brain open.( twice) I dont even mind that I havent driven now for 13 months but I DO mind that it is going to take a beauracrat 3 months to process a recommendation on what happens next...that's just bleep bleeping stupid.

As a complication from the SAH I developed hydrocephalus at the time and I now have a VP shunt which I know some others here do too. Shine is a charity that support sufferers of this condition and they are trying to organise a series of sessions to inform and educate about the effects of the condition and share tips etc. It will likely be held in the london area. If anyone else is interested in attending then pm me before middle of march and I can send you details. I'm going to try and go if possible and will share any findings that help this group. I want to know does every VP shunt act like a barometer!

The Welcome Trust in the UK have just launched a games app for phones and tablets that test your brain power but that they hope will conduct one of the largest experiments into how our brains work. Although the app is meant to be as appealing as possible, behind it lies serious science intended to address important questions in brain research. There are four games, each asking a question to explore a different facet of the brain: "How good is your memory?", "How impulsive are you?", "What makes you happy?" and "How much can you see?" Information about the study is here http://www.wellcome.ac.uk/News/Media-office/Press-releases/2013/WTP051980.htm And the app can be found here from here http://www.thegreatbrainexperiment.com/ I've been playing the games, they are hard work but think they could be helpful maybe for concentration etc....im hoping Kris or another member who understands neurons better than me will chip in and say if they think this is any good.

Nice one Jimmy.Really pleased for you and the docs making some sensible decisions in the mire of confusion that surrounds this. The DVLA confirmed today they have had response from my consultant ,( I had to wait post shunt another 6 months) finally, that only took another 3 months...but there is a backlog at DVLA to review it. Shock horror:shock: quel surprise! So I get to wait some more now...Hopefully next week I might hear and know if I can get back out on the roads again.

Hi there. Hmm. DVLA is a bit of a grey area, no pun intended. I think the facts are that SAH is considered a notifiable condition and is certainly included in their medical questionnaire so until they give you clearance to drive after you notify them then your licence is not valid but I thnk legally you are still allowed to drive ut they like doctors to make that decision. Have they written to you? Here's where I took my guidance from "It is the duty of the licence holder or licence applicant to notify DVLA of any medical condition, which may affect safe driving. The DVLA is legally responsible for deciding if a person is medically unfit to drive. They need to know when driving licence holders have a condition, which may, now or in the future, affect their safety as a driver.' https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/390134/aagv1.pdf It does also go onto say 'The Secretary of State, in practice DVLA, is unable to make a licensing decision until all the available relevant medical information has been considered. It may therefore be a relatively lengthy process to obtain all necessary reports and, during this period, the licence holder normally retains legal entitlement to drive under Section 88 of the Road Traffic Act.' My understanding from talking to the DVLA a lot is that if you had a seizure, a EVD , a shunt placed or clipping then it is 6 months clear from any of these episodes ( plus the lag to get them to get clearance from your consultant which takes AGES!) if you have just coiling then it is handled on a case by case basis but you need the DVLA to confirm that your licence is still valid. But it is a minefield of confusion and no clear answer...what one medical person says another disagrees with....best of luck. I'm still waiting with all fingers crossed

I wasn't too keen on the one year mark either. Mine was in March this year. I Wasn't sure what to do, how to mark it. In fact some family were horrified I wanted to mark it all. I did though. I brought together the scaffolding group of family and friends who have held me up over the last year and just had a quiet and thankful meal with them. I wore sunnies and ear plugs and didn't chat much but it was a good new memory to create for them and me and to mark how far I'd come. I hope next year maybe to do something noisier and more active but we will see. At the end of the day we survived something many did not. We all have different recoveries and deficits to deal with. We have mental and physical scarring that will take time to heal if it ever does. I decided to view my first year anniversary as a marker for how much had improved in that time. There was hope to be found in that year where everyone said there was no hope. So there's hope going forward. Congratulations on your first year passed!

So lovely to see loved ones supporting each other on here. I alway think it's harder for people trying to support and understand as a observer of what's happened. As a survivor of something like this you have no choice but to deal with the hand you have been dealt but I certainly have become more selfish since my SAH as I often i had to focus just on me to get through stuff. Probably doesn't make me very easy to live with at times. I'm a year on. I don't talk much about my bleed as the severity and location of it meant odds dictated I shouldn't have survived, they are still quite bemused I did. But survive I did and I am learning to accept the changes it has brought to my character, to my pace of life, my working ability. I'm not there at acceptance for any of them yet but it has got easier and it's really hard to explain that to a partner , the sense of loss and grief but also the fear. Stereotypes probably mean that's even harder for a bloke to talk about. Male sense of achievement is so wrapped up in providing and strength it's blooming hard to take the fragility of that ability to continue to do what you've always done. Give him some space but keep reassuring him. Help him see that change is ok. A cuddle, a kiss, a gentle touch on the hand. My experience is that these small acts are So healing. Equally as someone else has said I'm sure your taking on sme of the chores that may have previously been his to ease the load. My hubbie is a dab hand at washing now even if he will never fold it how I used to! Do I care? No, just lovely he does it for me out of love. Great you're on here. You guys are our rocks although we are probably pretty hopeless at telling you that. Note to self. Tell hubby he is amazeballs!