Daffodil

Scarlett, both angiograms scan you, it's just the method is different. With the cerebral angio they tube you through the femoral artery and squirt the dye into the specific sections of the brain they want and are moving the scanners around your head as they do it. Its a bit like a rotating flower. You have to take a deep breath and keep very still when they release each burst of dye but the theatre is much more open. You're not in an enclosed space. There's some very good threads on here that describe it if you search under angiogram. They helped me before I had mine. It's natural to be nervous. I don't know about the other type, I suspect they inject the dye locally and wait for it to show up in the scan. A Friend has had this and they use the traditional scanning equipment where you are partly enclosed in a the scanner tunnel. I hope you come to a decision quickly and your GP is sympathetic.

Hi Scarlett, I know the waiting and worrying is agonising , nothing we say can take the worry away for you but the fact they are listening and acting now is a good thing. Try to take each day as it comes. This phase will soon pass. I have had most of my treatment as NHS but my employee health cover meant my post coiling angio was done privately but i dont think it raised my standard of care and I still couldn't choose exactly when I wanted it done, they have a long waitin list in london for their private care. Mine got cancelled twice as you have to accept that you can still get bumped if there is an emergency. When i had my cerebral angiogram it was done with my consultant neurosurgeon on site but the procedure was performed by their consultant neurological radiographer. It was in the room where they also performed my emergency coiling and there's a significant number of people in the room with you. Basically the person who does the procedure has incredible levels of experience , my chap explained that you have to do 100s of coilings before they let you do the angiogram as the angio is more complex. As bluecat says it is absolutely the gold standard for investigation. Really amazing. I think any neuro team in the country will do their utmost to look after you. Go where you will feel most comfortable

Scarlett, if I had a cold then I would hesitate before taking it into a hospital. They try to minimise the risk of cross infection in the theatre but they say if you know you have something then try to stay away until you have a clean bill of health. I would mention it and see what they say.

Win you give the best and most fun advice. Scoobs, Definatly don't bottle it up. There's no joy that way. I saw a counsellor for months and wouldn't hesitate to go bak. I've blogged. I've talked. I've shouted. Ive meditated. I've cried and I laughed.( And yes win I also sang and had regulare movements) It all helps heal. You've had a massive change in your life. Not just the SAH and recovering but the change in work. Loss of driving to me and others is an annoyance, an inconvenience, for you it's a vocation snatched out of your hands by an unseen assailant. So it's ok I think to be mightily annoyed about that. Sandi and Mary are right though, if you can find some activity that uses your considerable other talents and put yourself out there, people will snap up offers of your help, that I am sure. now your feeling fitter that will help. Maybe Have a ponder about what jobs associated with your knowledge and experience that you could do. Think laterally. Maybe estimating for delivery jobs with removal firm? I'm just guessing but there will be options. So big hugs. You helped me when I first came on. It'll be a better day tomorrow.

Hi Lillian You've been through the anxiety mill, not surprising you get worried. I had my SAH shortly before your husband on March 8th and am doing ok too. Nearly a year on I would say your description of where he is at is pretty similar to me. Some days I can, some days I can't! A friend asked me the other day about headaches and I explained its more of a omni present ache which I am now familiar with but sometimes it peaks and that's when I need to go slow or get some rest, but my head pain is pretty much constant. Strangely often when I feel very rough I then have a period of improvement afterwards. I too have had a number of trips back to hospital over the last twelve months and scans where the symptoms were alarming enough for me and my husband to call the doctors who then advised us to come in. I believe over time that the need to check it out will diminish. I can see the worry in my husbands eyes when I am harder to rouse in the mornings or he can see I am in more pain than usual but I can't take his fear away despite what I say so Im sure that even if your hubby reassures you it won't stop your worry either. I just think that it will get easier the more time that passes. you've come this far and every day is a extra blessing for you both. For all of us.

David , I feel your pain. No really I do today because I braved the school quiz last night and I am paying for it today. but I am glad I went. Hubby has taken kids off now so I can rest...well I'm talking to you lot actually! I think that if physically you can cope with the trip then chuck your spoons out there but find a way to either build up some energy reserves first or after. So plan a week of really early nights and brain pampering at home, so that you have more to draw on when the time comes. In all seriousness can they offer you a wheelchair at the show? We have mobility schemes here that offer this frequently for larger events. Definatly wear sunglasses and ear plugs, you can pretend to be a celebrity! Lastly, just pick the bits of the show you really want to see, don't cram in as much. Stop longer in one place, take a little chair and just let the world pass you by, you might find you see a different side to the show. Sounds a great event.

Hiya. It's so natural to be worried but you must look after your health too. Don't beat yourself up about getting there every day, do you have other people going as well to share the load? I was in London during my stay and my family ended up creating a weekly schedule of who visited when, that way I had visitors most days and it didnt all fall to my husband and mum who were trying to look after the kids too. The important thing was that there was always one visitor who could 'sort things out' if they needed to and give them a list of things to check and ask and then they can update you. Also to be honest n the days i Had no visitors I just slept, but I had my ear plugs and eye mask to help which I could put on myself. Most food in hospital is pretty poor and their 'boost' drinks they give you are pretty gross so I agree that taking things in to tempt him is a good idea. I lost masses of weight post having shunt placed so given extra vitamins, On the fortified drinks thing I found the only one that tasted decent was 'build Up' in vanilla flavour but only if it was made with ice cold milk. A homemade smoothie might be nicer idea. Keith I hope will come up with some cool ideas for you. I also liked raspberry jelly with cream. I have far to many theories about CSF pressure maybe i will start another thread on those;-) When my CSF is high for me my appetite gets suppressed ( when it went mega high prior to shunt I physically couldn't eat, it was weird). So I may be alert and responsive but I just won't have any desire to eat. Its just the opposite when it goes to low is that I can eat fine but start being sick and can't stand the light. Now I have my shunt it only goes low but I have to be vigilant that i don't get 'high' symptoms. The challenge with CSF is that they just don't know what 'normal' is. If he is low pressure then make sure he lies flat for a while, if he's high pressure raising his pillows will ease head pain. If he needs a shunt then i can only say that it has helped me to better manage the pain and extremes of CSF pressure which aren't nice as many here can attest to. High or low pressure combined with recovering from the effects of the SAH is a blooming horrible so if it eases that for him it's probably a good plan . Can he communicate with you? A message / alphabet board might be helpful to communicate how he is feeling or what he wants. Make one up so that it's easy for him to tell you how he's feeling. Can you read to him or share some of the posts on here with him? Sometimes knowing other people have come through similar helps. I didn't find this group until 6 months in but they have held my hand and given me the courage and support at times when no one else could quite understand. My best wishes.

So I know its not good to promote Products on here so i wont name check but I stopped taking all meds for headaches and now don't take a strong prescription tablet unless I have a real doozy of one. When I have a regular SAH rubbish head I rub a teeny amount of a Natural anti inflammatory pain relief balm into my neck and 9 times out of 10 it eases it for me so I can function and get on with my day.

Oh and there's a book by the wife of singer Edwyn Collins ( never known a girl like you before) called 'Falling and Laughing'., her name is Grace Maxwell,. He survived a SAH and subsequent infections , and like your husband had challenges speaking but it's written from her point of view. I read it to try and understand what my husband might have gone through. It'll be a tough read but it may help you. Sure the library could get it in for you. Best wishes

Hi Vi, I think I signposted you here as I have had a huge amount of help from this group, I hope you do too. I had an EVD and coiling and spent two weeks in ICU and another five in hospital in London after a massive SAH Ive been off work since that happened last March but will be going back slowly soon. It took a while for my confusion to pass , , my frst few weeks i was away with the fairies. Also my SAH impact meant I had a shunt placed last July and it was after that I found more of my confusion with words lifting as it was most likely the hydrocephalus that I had developed that was exaggerating it. I presume that he has had scans since they removed the EVD to check his ventricles are behaving normally? If not then that's might be worth checking, quite a few members have required lumber punctures before the ventricles were happy to resume their job properly, in my case they haven't thus why I needed the above doing. The main thing is drink lots, sleep as much as he can. I can also recommend takin him ear plugs for sleeping in hospital and an eye mask. Bright lights and noise really don't help but are the norm in most wards. Any questions ask away, someone here will have an experience. Ps I live very near you

Queen square team have been my life savers so I'm glad they have helped you reach a diagnosis. Sorry it wasn't the news you hoped for , but it's good you know your next steps and very understandable to have nervousness. I had my second angio in september(dont remember 1st time) and its not too bad. There's a few threads on here about it if you search angiogram. There will be excellent neuro facilities near you who can do this I'm sure but you need to have confidence in the team treating you. Spek to your GP and get a plan on where you want to be treated. It's important stuff so I'm sure they'll support you to go elsewhere if that's your wish. Best wishes

I like to think we shunt ladies are special! I too am quieter and slower than previously, that's not a bad thing. I also had a date challenge when I finally came round as well so she's not alone there. Best wishes to you and your wife, glad to hear she's dong well,she will keep taking baby steps forward I'm sure. Look forward to hearing from you and tel her to ask any questions or concerns. Someone here will have an experience to share.

Wade. Welcome. Swirly, that's a very good description of post SAH feelings! I was pretty active prior to mine last year but I have found its taking time to rebuild stamina levels. I didn't train at anywhere near the level you did though, swimming and cycling were my thing but just regular fitness levels and I'm only just getting back to managing swimming regularly to be honest. some weeks I dot have the energy to do that though. I think for me I lost so much body condition with all my procedures ( i spent about 12 weeks overall in hospital last year) . This year is all about regaining strength and fitness but slowly does it. If I try and do too much too fast I pay for it. So that's my advice, really slow build up and if you feel rough take it back a notch and then build up again. Best wishes

Vanessa. GLad they checked you out. Even more glad everything's ok. THose LPs aren't much fun though are they:roll: reducing hours a little might be a good thing for a little during this 'blip' then build it up again from there. Best wishes.

Hey Vanessa. Good to hear from you. I agree with sandi and Louise. It is probably tiredness. I find a weird thing that my dizziness returns and I feel rubbish for a few days but it usually proceeds a period after that where I notice a slight mprovement in something. It's like the brain is extra working hard on something. I have some anti sickness tablets which I take when it's bad, and then I sleep and rest and cut down. At the 11 month mark it is much less frequent but it does still come back. Try and look at where you can save some energy. Easier said than done for you I know. One thing though, do get checked over if something has changed in how you feel in your head, pressure or pain etc you know that better than anyone as a doctor so I'll stop nagging now. Hugs

Wem, thanks for this. Your experience and others lessons is really helping me shape my return right now. I too am very lucky to have a very open employer...mind you I did help refine their return to work policy, oh the irony! . I agreed with bosses this week that I will start back beginning of April working two two hour shifts . Like you Wem, it will be home based and quite analytical work but im ok with that. We will then ramp up slowly week by week with a view that I probably wont be back at full capacity for quite some time. We will pause if at any point it gets too much and I probably will go to part time in the long run. I've been very open to changing roles, learning new things , and in return they're being very sensible and accommodating in how they plan on helping this be a success. so we shall see. So, some time for me to continue to build stamina before going back . I'm very fortunate that Im allowed to take this approach and don't have a vocation that means full on , full time work is the only option and that we can cope on one wage. Feeling pretty privileged tonite. And thankful I'm at this point that I now feel ready.

Dawn, I spotted this early on as a pattern for me too. My doctor explained its probably because the brain is using so much energy to heal itself as well as run its usual programme of body activities, it needs extra fuel. I keep a stock of those energy and vitamin milkshakes and then have one of those instead of snacking if I need a boost. Or I have good nuts, not the bad ones that Win likes ! or was that salty nuts win? If I can I try to eat healthy brain food, so avocados on crackers are my current favourite snack or scrambled egg with spinach. I would say don't stop eating while youre healing but maybe look at what youre eating and see if theres anything you can swap out to help lose weight. Oh and dark chocolate . Yum.

Im resurrecting this thread as im having DVLA license challenges. I can see its not unusual to have challenges but am looking for some ideas on how i can move forward. I feel so ready to drive now and getting fed up. I initially got told 6 months off driving post SAH and then my consultant informed me i had reset the clock in July when they placed the shunt and that was another 6 months wait. So it's been 11 months not driving. Hard for anyone but a real pain with younger kids. I have to beg lifts everywhere. I put my application in in November ,even got it faxed to the hospital direct to the team and now I'm still waiting. I called DVLA again yesterday. Stalemate. They say they are chasing my consultant but have to follow a protocol, so they give it six weeks each time they make contact. And they keep on trying so I "just have to wait". My consultants secretary says he has had it and she'll chase him again to check it's been done ( me thinks she doesn't ) and the DVLA wont write to my GP instead who is very happy to respond. What can I do folks? Answers on a postcard please.

Sometimes I feel like i have been on a long expedition this past year . Win's analogy resonates with me. It's so hard , unforgiving and scary at times but on BTG I have seen Steph and Wem that both of you are a few paces ahead of me on this journey, and it helps to see you there and know we are not alone. It spurs me on and lifts me up to be sharing this with all of you... There you are ploughing on through your own challenges but lifting your head up high and with inner strength and courage. Ahead of you and pushing onwards on this twisting path there is David, Cath ,Dawn, Mary , Win , Michelle and Sandi, ahead of them is BTGers from years and years back , louise , keith , lin lin and of course Karen and all the original band whose threads even now bring comfort and hope and knowledge to us and those who join us each day. All of us , some still on their journey , all on different paths but all starting from the same scary, dangerous precipitous mountain top of an SAH. We may not have a safety rope attached to join us but it kind of feels like we do. Be well. Keep pushing on.

Steph and Wem Hugs to you both.

I wish I'd been told...well what i think what would have been most helpful is some case studies of real SAH recoveries so I could navigate how I was feeling. Maybe a reading list, I would recommend some now. I got a good level of support overall but the following would have helped. That I'd probably suffer from panic and anxiety at some point after discharge and some information and techniques for me and my family on how to help if and when this shows itself. Some information on What symptoms are pretty normal and what aren't. I for instance got told a headache would be normal so I put up with excruciating head pain thinking that'd what I should feel like when it was in fact hydrocephalus returning, (not uncommon)but it was my GP who picked it up and ended up having emergency LP and blue lighted back for another 3week stay. That I should seek counselling ( idid anyway) that I should see GP regularly ( mines been fantastic ) and that I should speak to other people who understood ( I was fortunate that I had two friends who had TBIs who helped me understand the pattern of head injury and I found BTG after 5 months) . These last three I would say are the most crucial but no one suggested any of them to me, I had to find my own way and lucky that I could. I really feel for people who are suffering this in silence and isolation. Oh yes, and I have had good support from Headway and calling the brain and spine organisation .

Hi. Good thread this and Definatly shows a need for some consistency in level of support on offer. I have a good story to tell. I have two neuro specialist nurses and a hydrocephalus specialist nurse. They have been assigned with me since i was admitted and were amongst the first to speak to my family when I wAs most poorly and explained much to them. During my stay for the SAH which was for 6 weeks i saw one or more of them every day. On leaving they gave me a direct line number , on which have called them frequently , a mobile for more pressing questions and an email address from which questions are always answered. I have had 3month and then 6month clinics with them and whilst they can't answer my every question they have given me much reassurance. The support by this nurse specialists team since my discharge has been invaluable, in fact when I was readmitted requiring prompt attention for return of hydrocephalus in july We were struggling to get a problem with nursing on the ward sorted. I called my nurse team from my bed, dreadfully ill, and they came and took charge and basically made sure I got the medical attention I should have been receiving but wasn't. I know I get listened to and have a medical person who knows me and my history who can assess any symptoms and help me act. An example is Last week I was pretty grotty. I emailed them my symptoms and they called and said i should come and see them. They met me on arrival, checked my shunt setting, asked how I was, took bloods and then arranged for me to have scans. They spoke to me about my results,discussed what we did next and then called me the next day to follow up. I WISH all of you had access to this. It's not been perfect but I cant think what I would have done without this. I feel very blessed I was in London the day my head let go for the access to the care it gave me. That was my lottery number coming up.

Hi, I presume you've had follow up scans since June so hopefully you know that your brain is healing well, if you can hang onto this reassurance when your worry escalates into panic that will help you I hope. I tried meditation, it helps me to calm my mind. I have a wacky theory on the noise in my ears. You know when radiators get air in them they make noise? Well my lovely closed system has been breached not once but a few times and I personally reckon that there's some air bubbles in mine now hence the strange hissing noises i can hear all the time. Absolutely nothing to back this up but it makes me feel better to offer myself some explanation for something that shows no sign of diminishing and that I never had prior.

Hi tony Fantastic that you got such prompt attention as flying to hospitals is pretty dramatic I imagine. I hope your family is doing ok after the shock waves that seeing a family member unwell generates. I had my SAH at the age of 39, I have two young children. Previously fit and well prior, just going about my normal business as we all were. 11mths on and I'm just planning my gradual return to work. My headaches subsided around the 9 month mark and now come back when I'm tired, over stimulated or any emotional situation but I also have a shunt managing CSF pressure so the docs aren't sure which causes what. As Mary said the docs are amazing at treating the outcomes but not great at understanding our ongoing challenges. I saw my team this week for some checks and once again they expressed how little they know about the effect of blood leaks in the brain. I suppose from a learning point of view they can only work on donated brains which gives them the physiology of the damage but they can't ask how it feels in practice and us survivors are a rare bunch. So it's a learning curve. So I will add the same advice, rest when you can, don't be tempted to go full throttle for a while yet and be kind to yourself. Take things more gently and ask your family to help you do that. One last thing, it's VERY ok to let the emotion out, bottling things up is one guaranteed headache for me! (im sure that you don't conform to an Aussie bloke stereotype though !lol) So pleased you're with us Daff

Great advice through this thread and Ive taken strength from it today as well as the last few days my dizziness and symptoms have been a bit crazy so my negative head won over my usually positive head and also have had CAT scan, X-rays and bloods today so feeling a bit pants. Thanks from me. Donna , you say you've had a head cold. Look at people who suffer those who haven't had an SAH...my they do complain, so if you've had one last week then it's gonna make your dizziness worse, sorry to say but true. Give yourself a break here. There's a saying that time spent worrying won't add even a second to your life. I'm not saying stop worrying , none of us can completely but you need to find ways to live with the worry and not let it consume you. We are the lucky ones, I always think that had I known 10 minutes before my SAH I still wouldn't have been able to do anything to stop it and there's someone out there in the next day who will have an SAH and won't make it so I need to get on with my life and weather the storms as best I can because I've got this chance of living. Maybe a long time, maybe not, but I'm alive. My kids are young like yours and I have tried to do things bit by bit that bring back normal little by little. They get annoyed sometimes that "I'm always ill" but the first time i get to do something I haven't done in a while, like when i went swimming with them again, was amazing and they love you regardless. I think the longer you leave something the more fear can build up so set yourself challenges and tick them off one by one. Try new things. I haven't flown yet so we are planning a trip to Scotland to test the water on that before going further afield and we will probably drive to Europe this summer in search of sun. Donna, try to find different ways of doing things rather than just stopping yourself doing it ,if you don't want to fly then don't but find a way of getting there which in itself may give you a lovely experience. Equally a paddling pool in the garden can give hours of fun so don't beat yourself up for not doing stuff. Finally I'm sharing an apache blessing which I find very comforting. Hope it's not inappropriate. May the sun bring you new energy by day. May the moon softly restore you by night. May the rain wash away your worries. May the breeze blow new strength into your being. May you walk gently through the world and know its beauty all the days of your life.