KelBel

I was coiled and was told it would possibly be about 6 months before I could drive again, but I had my licence back after 2 months! It took a few practices with my mum in the car with me for me to feel ok driving again. x

Hi Donnamarie After finding this site before my 1st follow-up appointment, I made notes of lots of questions to ask, hence why I know the size and location of my annie. I also know that I had 1 micro-plex framing and 3 hydro-coils put in it?! I have no idea what a microplex framing is but I know that I have 1! I apparently had a grade 1 bleed. Kel x

Hiya I have been told my one and only (I hope!) aneursym measures 13mm x 8mm x 8mm and is situated on the Right Posterior Communicating Artery. Kel x

Gill - my annie is on the Right Post Com Artery too - there must be a link then, since we have suffered similar episodes of migraine symptoms!... I did not suffer with as many as you in one day, only 1 episode a day maybe a few times per month or more... and hardly any in the year prior to my SAH, which is strange... If I am really tired or feeling stressed I have to make sure I don't look at any bright light or am near strong smells (perfume, raw onions) to ensure I don't start off the migraine symptoms! My migraines were diagnosed in 2002 or 2003 however I had for many years suffered headaches due to muscle tension in my shoulders and neck, especially after double-maths whilst at secondary school! Clearly too much concentration required! Kel x

I get occassional migraine aura, particularly if I have looked at bright shards of light or flickering light (if driving through a slightly wooded area on a sunny day and the sun flickers through the trees) or at work usually in the afternoon looking at data all day long... I don't always get the zig-zaggy lines, I can also get a rotating coloured orb in my right field of vision, quite pretty but gets in the way of being able to see properly! Gill - is your annie on the right posterior communicating artery? You describe my old (pre-sah) migraines to a T! The numb lips, tongue and numbness/tingling in my left hand. Then a dull thudding headache (sometimes with nausea and occassional sickness) which meant I had to lay down in a dark room and sleep it off for an hour or so, and after would feel almost hungover for a day or so Kel x

Hi Shelly Hope all goes well with your angio today. I had one in December and was quite anxious for many weeks beforehand...but all the nurses in the day ward and the nurses in the vascular unit were brilliant. The lady who was performing the procedure spoke to me before I went in, and explained what would happen and how long it would take, and asked if I had any questions. I was shaking when I got in there, partly because it was so cold in there!!... but they were great and kept talking to me throughout. It did take about 4 attempts to numb the area sufficiently with local anaesthetic, which was the painful part, but after that it wasn't too bad; they explained when they would be flushing dye through and told me not to swallow when they were 'taking the pics'! It was like a warm strange sensation through the RHS of my face (annie is on the right-hand-side) and then it was a little like fireworks going off in my head, but it only took about 35mins in total for the pics to be taken, then they applied pressure for 10mins on the groin area to 'seal' the puncture site, and I was taken back up to the ward for a 4hour lay down before I could do anything. Apart from feeling a little migraneous initially and taking some tablets, I had a little sleep, and was ok when I got up to pop to the toilet on my own and get dressed. I was a little achey for a day or so, and took 1 day off work, after having the angio on a Friday. I was still a little bit migraneous for about a week after, but managed to work through it I wish I'd taken the time off for a little rest! I must learn to rest more... take care Kel x

Hiya! I am also 38 and the auditory problems I have had post-SAH is that everything can suddenly seem so loud! I can be sat in the office at work and my colleague next to me will start talking to me, and then it seems as if the whole office (all 100 of them!) all start talking at once and I can't hear my colleague next to me...it's as if every other noise far away is much closer than the closest noise... does that make sense?! It is a pain, but I haven't had any tests. I would be interested in having tests though... So what happens now for you? Kel

Hi Juliette Welcome to the site. Hope to hear more from you soon. As others have said, any questions just ask, and try to take it easy as much as you can to let your brain heal. Lots of water and quiet time will help If you can get that with little ones around... Take care Kel x

I had borderline high BP for years but was only put on tablets 6 months prior to having my SAH. I am still on the tablets now, but am hoping with continued weight-loss I will be able to come off them at some point! I know when I lost 4st 9lbs 8 years ago my BP went from 150/90 down to normal 120/80 after the weight loss! Am hoping it will lower again now... Had my BP taken at the Dr's last Friday after rushing to get to the surgery from work, and it was 120/70 so he wasn't worried...it does make me wonder if my BP has now lowered with my weight loss... I will keep getting it checked every couple of months though. Kel

Hi Vicky Sorry to hear you weren't reassured by your consultant Do you have a telephone number to call the hospital with any queries you may have? Or speak to your GP who may be able to follow it up with the hospital on your behalf. You could even email the Patient Advisory Liaison Service (PALS) at the hospital (you should be able to find the contact details if you search online) and ask them questions to raise with your consultant on you behalf. Your consultant was out of order being so stern with you, and should be a little more empathetic with his patients! He does after all know the possible side-effects after surgery, at least he should do! Concentration being one of them, hence not being able to take in what he was saying to you... I have taken someone with me when I go for my follow-ups, as they are there as back-up if I forget to mention something or if I miss something that was said to me. I made notes at my 1st follow-up but didn't during my 2nd and wish I had done, as I did forget some things. I have been advised that there is literally no chance of a re-bleed. And ditto what Skippy has said about the compacting of the coils. I hope you manage to get some answers soon to help put your mind at ease. Take care Kel x

Hi Julie Welcome to the site! Congratulations on your recovery so far, you have come a long way in quite a short space of time considering the severity of your bleed and that additional complications during surgery. You are very lucky and it sounds like you are doing amazingly well. Ditto what the others have said; rest when you feel your body telling you to (and you will feel it and begin to recognise the signs). Keep up the fluid intake to keep the headaches at bay, and be good to yourself and try not to over-do things...(I do need to take my own advice really... as I tend to pack too much into my weeks...and then on Saturdays I end up like a zombie! ) Take care, and hope to hear more from you soon Kel x

Hi Amelia Glad your scan went well hun All you guys, well gals are lucky having cd's or radio to listen to - I was given earplugs and that was all... nothing mentioned about music, and the headcradle with the mirror only enabled me to see back down to my hands and legs and out of the 'tube', I couldn't see anyone will have to try to remember to ask about music next time... forgot again the last time... I have never had any dye injected either for the couple of MRa's I've had. Some machines are good enough not to require it now. goldfish girl - I think it depends what type of coils were used as to whether you are able to have MRi/a after coiling. Kel x

Hi Fiona At my first follow-up appointment (which I requested via the (PALS) Patient Advisory & Liaison Service at the hospital as I didn't know if or when this would be arranged...) I took along a whole list of questions, which I had written in blue ink with spaces for comments, and whilst at the appointment I made notes in red ink! I wanted to know the grade of my bleed, where my aneursym is located, what size it is, how many coils they used, how long my op took... etc etc I also noted all symptoms I had experienced since discharge, including the fact that my left leg still felt tight and they should have scanned it before I was discharged to check for DVT...but they hadn't, and I then had to go to A&E to get it checked a few days later at my local hospital as my blood test was indicating a problem - luckily it wasn't DVT, but I did have a bad chest infection that was dismissed by my GP even though I had said I'd had trouble breathing and felt heavy in my chest... I actually saw one of my neuro-consultants assistant at my 1st appointment, who had to phone others to be able to answer some of my questions... however this year I actually met my consultant; I thought for the 1st time, although I do have a vague recollection of seeing him before I was discharged... Be prepared and make lots of notes at your appointment as it is very difficult afterwards to remember all that is said (I forgot to do that on my recent follow-up! doh!) Take care Kel x

Hi Ian Welcome to the big BTG family! It is a scary place to be when you are released from the confines of your hospital bed and left to face the recovery on your own, without knowing what that recovery will entail. Now you have found others who can understand how you are feeling and help you along the way, you will be in a better place. Ask away and someone on here will be able to answer your questions or point you in the right direction at least As others have said, lots of rest and the 3 litres of water a day helps keep you on track. Take care, Kel x

Hi Fiona "Welcome to the big BTG family!" This site is a god-send for all of us, thanks to Karen and her team. You can ask anything you like, and if you are unsure about posting directly on the main forums you can always use the private message to send a query to one of us. Ditto what the others have said re.early days, baby steps, 3 litres of water, resting as much as you can, and getting help from friends & family to allow periods of rest. I look forward to learning more about you, take care Kel x

Hi all It sounds like we all have to find our own way of coping with things post-sah. Learning to accept what has happened and accepting who we are now, and listening to our bodies telling us when we need to slow it down a bit. We are all at different lengths post-sah and have suffered in different ways, i.e.severity of bleed, length of time between sah and diagnosis and operating, rehabilitation, aftercare, etc... so there is no one-size-fits-all recovery. We can only share what we have found beneficial and what helps in our situation. I realise I have been very very lucky with my recovery as I think at 15 months post-SAH I am back to probably 90+% of what I was pre-SAH. I still get frustrated at times that I get so tired, but I am still improving with time and challenging my limitations every so often (like upping weights slightly at the gym and upping the time I spend on the bike and cross-trainer etc...). My neuro-consultant also told me that I need to forget about my SAH and move on. It's not easy to do though, and I must admit I have not had a day yet where I haven't thought about it, but I don't get upset about it like I used to. Then again I do not have post-sah after-effects like others have. I do get a burning sensation in the top RHS of my head and have some migraine aura at times, but that is bearable. I have to make sure I allow some time just for me (I realise this is easier for me as I live alone) and I can relax in a nice warm bath with lavendar-scented concoction of bubbliness and read a book. Kel x

Hi Karen Sorry to hear you have been feeling so down, but well done for putting yourself forward for the abseil!! Wow. It is so depressing when you have to come back from a great holiday, back to 'normal'. I cried 'a lot' during my first 6 months or so post-SAH, even with counselling, but the counselling helped enormously. Have you been referred for it by your GP? It sounds like you do need to have a good cry and allow your emotions to flood out. I suppose you don't really get the chance or time to allow that to happen. I do hope you start to feel better soon xxx ((( BIG HUG ))) xxx Lynne - You are so eloquent in your replies and you seem to hit the nail on the head (so-to-speak ) every time, and your analogies describe situations perfectly x You are achieving so much in your recovery x Kel x

Karen Thanks for letting us know, that would be great if it does go ahead... will keep fingers crossed that we can in some way help towards greater awareness of our needs after SAH! Kel x

Thanks for starting this thread Momo. It is an interesting one... One of my counsellors told me I was suffering from PTSD however it was never officially diagnosed at my Dr's. I definitely suffered from it, and still do to some extent. I often get episodes of flashbacks, as I do have a very good memory of the event. Once my counsellor had said about PTSD and I was able to read up on it, I felt better and understood that I was having a natural reaction to my situation, and wasn't going mad! Initially I said "I can't have that, that's what soldiers suffer from when they've been to war!" but then it was explained that you don't have to be a soldier to suffer from this, you can get it from experiencing any trauma, and what we have experienced is certainly traumatic enough! Thanks too to Jen for the additional info. Kel x

Hiya I am sure I have read that there is a link between SAH and high BP, although that may be SAH caused by aneurysm rupture rather than NASAH. I personally suffered borderline high BP for up to 10 years maybe (with BP at approx 145/90) which only went normal after losing nearly 5 stone in weight many years ago... then I was put on BP medication 6 months prior to my SAH (as it had gone up to 150/90) which then lowered it back to normal (approx 120/80). When I saw an emergency Dr 2 days after my initial SAH my BP was 175/98. It has since been checked regularly and has been okay. It hasn't been checked for a while now but I have an appointment next friday for a check-up. Kel x

ooh you are terrible Lynne but you are right!! :lol: I have ordered mine too, as a stand-by should I need it. I do have the odd occasion where it could come in useful... Well done for reminding us again Jen - I have been meaning to order one for the past year now, since it was mentioned before kel x

Gill - it was absolutely freezing when I had my angio too!! Brrrrr

I had a CT scan initially to detect what was wrong with my head... then had a CT scan with dye to show up the vessels more clearly... they then located the aneurysm but couldn't see the bleed, so they done a lumbar puncture which still didn't show a bleed (this was 4 days post-SAH). Then I had the coiling op which is essentially the angiogram with constrast dye for them to do the endovascular coiling. Two months post-op I had an MRi/MRa check as I'd had some numbness and tingling sensations in my left-hand-side on a couple of occasions... but didn't have any dye injected... I believe Maggie said a few weeks back that she was told than an MRa is an MRi but the 'a' refers to the specific targeting of the arteries during the scan. I am not sure why they do or don't use the contrast agent, but would imagine they try not to use it unless they believe it is absolutely necessary to improve the images slightly?? (as there is a slight risk of it affecting the kidneys?) I then had a 1-yr angiogram check up where they used the contrast dye again, and I am going for another MRa on Tuesday evening as they will only need to do an MRa in December this year (instead of angiogram) so want current MRa pics to cross-reference to... phew I have now found the following information online which describes a DSA; Digital subtraction angiography (DSA) — Gives an image of the brain's major blood vessels. A thin plastic tube (a catheter) is inserted into a major artery of the leg and advanced through the body's major vessels until it reaches the brain's blood vessels. A contrast dye is injected through the catheter and allowed to circulate in the bloodstream. At that point, an X-ray machine quickly takes a series of pictures of the head and neck. The images track the movement of the contrast dye as it moves through the brain's blood vessels. This imaging technique lets the doctor identify and localize the source of a blocked blood vessel that caused the stroke. Some people may feel a warm sensation as the contrast medium is injected into the blood vessels I believe I am now right in thinking that a 'DSA' is what some of us are referring to as just 'angiogram'? 'Simples' or 'confused.com' You Decide! Kel

Hi Dermot I think all the GP's and Neuro consultants are rather vague on what we can do. I had my SAH in 11th Dec 2009 and was coiled finally on 18th Dec 2009... on 10th Feb 2010 I was told to get back to work, on a phased return and I was ok to go back to the gym but take it easy... I didn't go back to work for a couple of weeks after that meeting, and then took about 3 months ease myself back to full-time... and I didn't then go back to the gym until June 2010. I just wasn't able to do it before then, I was just too tired with trying to get back to work and back to living! When I did go back to the gym I was also worried about doing any weights initially, but I spoke to a personal trainer and he devised a new plan for me, so I started on low weights and have built up ever so slightly, and am still on relatively low weights compared to pre-SAH. I have recently had some slight dizzy spells on the cross-trainer, which my neuro-cons told me could be lack of fitness...but when I raised my eyebrows he then suggested it is perhaps dehydration due to the BP meds I take (which are a diuretic also). I wouldn't say I am fit, but then I wouldn't expect to get dizzy from lack of fitness either. I try to do the gym for an hour or so, 2 or 3 times a week usually, and try to go swimming once a week too if I can. I would approach your GP and a personal trainer at the gym to gauge their opinions, and like Jen suggested maybe contact the nurses who cover the phoneline on the Brain & Spine Foundation helpline. Hope you manage to get some suitable advice. It is difficult to know what 'taking it easy' actually entails, as it can be vastly different for us all. Take care Kel x

Bay, I know exactly what you mean. It is so frustrating. I have been told that I do not appear to have suffered any specific damage from my SAH and vasospasm however I still suffer episodes of fatigue, and some short-term memory. I am also more inclined to face things head-on now, whereas I might have just grumbled about it before - I think I would rather get it out in the open rather than stressing internally about things. I know Ern has mentioned many times about the benefits of yoga - perhaps he will see this post and tell you about it. I have only tried it once many years ago, but can imagine it would be a good thing to try now, because of the slow movements, concentration required and the need to increase your core strength for balance. Have you tried getting some counselling via your GP? I have mentioned before just how beneficial I found counselling. It really helped me to start to come to terms with things. Kel x