Erin

Michelle and Daffodil thank you so much for taking time to reply You're advice makes a lot of sense and I do agree with you both. I'm starting to think after a few days now that the angio would be so beneficial for that final peace of mind so I'm slightly more open to it, but obviously still terribly scared. I'm still not sure if ill go ahead with it. I can't shake the fear of it happening again and me saying basically I knew I shouldn't of had it. I have no one medical to talk to other than maybe my gp. Or a helpline. I may do that, I feel like I need a bit more light shed onto it. I did have an angio that was clear afterwards, so I'm thinking do I really need another one, if that was clear. I've also researched on the net and it seems that even if I do have another and it's clear, it could still show up in later years. Still working this all out! :/ Thanks again guys x

Were any of you concerned with the risk factor of an angio - a stroke? That is putting me off having another one, the risk of stroke.

Hi, I'm not sure if I should post here or in the avm section but here we are.... Three years ago I had a large avm removed and suffered an SAH during the 14 hour op. Because of the SAH I completely lost use of my left side and had to spend six months in a rehab hospital learning to use my left arm/hand/leg/foot etc again. A horrific time and one which still terrifies me today. Three years on I'm still suffering the after effects of such a huge ordeal. I can walk unaided (albeit a bit clumsily) but have v little use of my left hand and only some small use of my arm. I have many other problems due to the avm/SAH but I'm just detailing the physical problems here for purpose of this post. After the craniotomy the hospital did a follow up angio which they were surprised was clear (the prof thought there'd be some residual avm left). Then two years later, I had an MRI with contrast dye as another check to put my mind at rest. They told me the MRI doesn't show up small parts but they were 95% sure it was gone. He slso was satisfied an angio wasnt needed. I was happy enough with that and was discharged. However, when I saw my rehab consultant (6-9 monthly check up) I told her I had been having headaches lately and had noticed again a slight noise in my right ear. The avm was originally found because of a v audible and loud whooshing noise in that ear. Because of this she referred me back to the professor who discharged me last year just to be sure. I saw him today as a re-referral. As expected he said they would do an angio purely to put my mind at rest and also obviously to check there was no avm left. I explained I was literally terrified of an angio because of the risk of stroke but he just kind of said well its the only way you'll be satisfied. He's right in a way; obviously I'd like to know 100% but I absolutely don't want to have another angio and risk another stroke. I am so frightened that it'll cause a stroke. I know the risk is roughly 1 in 1000 but I also know my luck and that if one persons going to have one it'll be me. The thought of going back to square one - that terrible, dark place of losing mobility and working working working constantly to get tiny parts back is too much to bare. I just can't face even a slight chance of it happening again. The flip side is what if an angio does show up residual avm and basically it gets caught before it gets massive like the last one? Or, i don't have one and end up cap in hand back there again in ANOTHER years time? I have trouble making decisions as it is but this is even worse than usual. I feel like its a toss up between a rock and a hard place. Does anyone have any experience and/or advice on what the best route to take is? Or helpful stats? anything! Any help would be truly appreciated.

thank you all for your help and adice im going to make a list of all the suggestions tomorrow and google / look into them. It is scary oing this and id have to onky do a few hours at a time due to fatigue (hence volunteering) but i will look into all of this and see where i can go from there Thanks again everyone x

No not yet karen but ill add it to my list thank you!! Good call

Hi all - unfortunately I find I havent posted here on BTG since I was still in rehab hospital in 2010. Here's a (hopefully working!) link to my original post... http://www.behindthegray.net/vbulletin/showthread.php?6272-Hi-All-Erin-AVM-Removed-SAH-on-9th-June-2010. Please excuse any typo's - i now can only use one hand when typing and have lost quite a big chunk of vision in the left of both eyes so often miss letters Ive now been out of hospital two years. Physio stopped pretty quickly after discharge so its all been down to me and I do my exercises at the gym when I can, although any slight cough or anything I get now floors me so that has to go on hold while im taking the exceptionally long time i need nowadays to recover! I I was unable to return to my old job in dwp as they wanted me back pretty much straight away which i just coldnt do so i had to take a package. its seen us ok isn and although im still not able to do a regular type job - im hoping i will in time to come. Im building towards it but the physical loss, psychological loss, fatigue and loss of vision side of things (plus many more ill not list!) are making that difficult. About a year ago I set up my own photography business - having ound the time now to explore the things I love and interest me. I enjoy it immensely and have made a few sales but its only a very small sideline really. The problem there really is that I find the sales side of it excrutiatingly hard,; I've lost a lot of family/friends and subsequently confidence since the avm/sah. What id like to do in the meantime is volunteering. Ive already applied to Brain & Spine (got a "we dont take/need volunteers, soz" reply from them - yeah, righto!) and headway which is a bit up in the air but really im getting nowhere! I'd like to help in the brain injury area as I have the empathy and experience but am open to most things. I'm also unable to do much 'physical' stuff but i can get around and mostly get by with just using one hand, but it obviously does have limitations. I still feel I have so much to offer. Has anyone had similar problems or any ideas in what I can do? Any advice / help / anything would be appreciated! :confused:

i am 5 months post sah, am still in rehab hospital for another few weeks, but am suffering terribly with fatigue. since ive started to walk again and come home at weekends, do more etc, its much much worse but i guess that stands to reason. saw my neurosurgeon on tues who said it'll be like this for up to two years following sah/craniotomy but i think it's something that we all have to learn to live with and adapt to. it gets me down as i'd love to do more, walk further etc but my low energy just does not permit it. i'm really hoping it will improve though.

oh its ok i googled it, thats diff to my problem! i'd love to know if there was a term for my eyesight problem though, a i said noone has really given me much info.

thanks karen i have th book, only read few bits though as realy im more interested in the weakness - thats impacted me the greatest - and there didnt seem to be much about that in the book?? hi gill and thanks - could you - or anyone - tell me more about 3rd nerve palsy, first i've heard of it is here and my eyesight probs weren't referred to as this by any dr's, but i'd like to know more about it. thanks, Erin.

to all of you who hav replied to my postings, your messges are always appreciated. Its often not until I hear someone else telling me things that I already know (!!) that I realise fully what I've been through and the progresses i've made so far. I think sometimes i'm just caught up in the process of regaining the strength on my left side so forget other important parts, like the fatigue. x

Hello All,I'm going to detail my story for the first time. I hope this will encourage some of you to share any imilar xperiences with me. I also hope that hearing my story may help somone else in a similar position. I knew my life was going to change forever on Wednesday 9th June 2010. I didnt quite realise how, or how seriously. I've suffered fom headaches for a long time, as long as I can remember in fact. When I was pregnant with my daughter 6 years ago I noticed a mild whooshing noise in my right ear but thought nothing of it - how stupid that was! It wasn't until I experienced severe strss at work late last year that I found it got much worse, and louder. The headaches also became more severe. I went to my GP who referred me to an ent consultant. Off I went, and after he did a few ear/hearing tests he said he thought it was probably pulsatile tinnitus. Because - and ony because - I was private he sent me for an MRI, just to confim. Had it been NHS this would not of happened. I had the mri a few days later and returned the next day for the results. Looking back, the radiologist and nurse who did the mri had a strange, concerned look on their faces that day; no doubt feeling sorry for me when they discovered the truth bhind the whooshing noise. The ent consultant held up my scan to me and told me I had a large AVM. He sent me home with no explanation and my scans. That was possibly one of the worst days of my life. 11 December 2009. My husband Alan was out, I had to pick the kids up from school then turned to the internet for answers. Th prognosis idn't look good. I was terrified, and rightly so, and I'll never forgive hat ent cons. for doing that to me in such an abrupt way. The next few days were spent in tears as I faced up the reality of my condition, but I had to wait another 6 weeks for information and a consultation with a proffesor ho specalised in avm's. In Janury this year I went to the avm clinic at newcatle general, held once a month. There I saw Professor Mendelow who explained my condition to me. I had a very large avm, a grade 4 (on a scale of 1-5, 5 being the worst). Great, mine would be one of the worse. He showed me his stats and told me my chances, explained the risks etc and said it had to be removed, if it stayed in it would most certainly hamhorage. I then began to have a series of embolisations to stem the blod flow and reduce the size of the avm. I had one a month for next four months. These went well and finally I had a craniotomy on that fateful day, 9th June 2010. To say I was terrified doesn't even come close. I was told my main risks were hemanopia, or risk to life, limb and mind. Very broad scope that but I signed the consent and went in for what should of been an 8 hour op. Bad enough in its own right but, things didn't go to plan. Why does that not surprise me? I suffered a massive haemhorrage uring the op, lost 15 pints of blood and it went on for 14 hours, not 8. I was sent to ICU where my husband sat probably dumbfounded thinking, erm, I didn't sign up for this. I then went to HDU where a few days later I came round fully, and was immediately made aware of my plight. I head them saying amid my haze of pain and confusion I had left side paralysis and that brought me back in the real world sharpish. As I became more awake I discovered the reality and what a shock that was. I'd had an SAH during the op which had left me with left side weakness. I couldn't move it at all. I was traumatised. I went onto a normal ward and began the recovery process. Physios told my husbands it would take up to six months to regain full movement. However a few weeks later theywere pleased with my progress - I'd been able to move my leg and arm and hand a little bit. I was transfered 4 weeks after the op to a neuro rehab hospital, which is from where I now type - very poorly, apologies. It's nearly 3 months since the op that changed my life forever. I'm doing well though, I have movement in my left side now and am now in the process of rebuilding and gaining strength in my left side. I have about another 2/3 months left in rehab. It's hard, learning to accept whats hppened is difficult. Worst part is mising my children (aged 8 and 5) and my husband. I see them every day as its near to home and weve all learnt to adapt to this situation and take each day as it comes as best we can. I do get down but mostly worried about whats i'm left with but I just try and focus on the day I get home permanently. The avm was successfully removed but I still need a folow up angio in January to be sure. If any is left I'd then need gamma knife. Please let it still be gone! My op meant I had an SAH. Its not the avm why im still here doing rehab - its the sah. someting i didn't even know could happen. Thats hard to take. The sah gave me left sided weakness which I now have to rbuild. I also have strange bright white 'blob' on my left side vision. Nothing they can do about this. They said it may go, it may not. Its very annoying but doesn't stop me seeing, just have a bright white light there all the time. I also have muffled heaing, upon hearing music. This again is very annoying but doesn't stop me hearing. Nothing they can do, again, symptomatic of haem. staying away from my family in rehab for months is very difficult but im slowly getting there. I am walking with physios and hopefully will be walking on my own by discharge - November time. My arm and hand both have movement but presently I can only include them in very few tasks. I worry terribly about this. On bad days I get scared I'l never be able to use them properly again. On good days I can see it improving and that I'll have them back in use to some degree in a few months. I'll leave it there for now - one handed typing isn't fun! Again, apologies for missing letters out etc. I'd love anyone to get in touch with advice on any of this. Namely, have any of you suffered with the left side weakness, or the impaired vision, and also the muffled hearing (music only?!) and how have/did you overcome this? Any advice greatly appreciated. I'll also be happy to offer any advice on my experience if needed by anyone in a similar situation. Thanks for taking the time to read my story. Erin

well this is wierd! i've been reading through bits of this site and seeing myself talked about in third person is strange! first of all i want to say hi to you all and mostly thank you - alan has been telling me about the site and your stories and it has helped us both enormously, your support is so appreciated. I will over time read your stories / updaes myelf but it difficult finding a long 'stint' of time at the moment; my timetable here has increased over last few months so im always busy just now, which is a good thing i guess! secondly, i apologise now for my typing, it will probs have letters missing - im finding it difficult to type using just one hand and my eyeight isn't great. as alan said ive only just come online fter 3 months and its hard to keep track of all thats gone on in the last 3 months, i cant keep up! its strange as ive kind of been locked away from it all i guess but ill get there. anyway ill not be able to type up as much as id of liked as its hard doing it all now but as soon as poss ill put an update/my story on the introduce yourself page - i dont want to put same stuff on here and duplicate it!!! i will put my full stoy on there though so id appreciate any advice and support you could offer there too. im doing well regaining strengh and my left leg is coming on great, my arm an hand are too albeit at a slower rate. i think my greatest frustration is not being able to use my arm and hand in everyday tasks. i am on trck to be walking certainly by discharge - nov/dec - if not before so m happy with that. my hand and arm while gtting better are difiult to incorporate into what i do on daily basis so i am tending only to rely on my right arm which i dont want to do. for example, its amzing how dificult it is just to go on laptop when you only use hand...v frustrating. my left eye has also b een affected and my hearing and ive been told nothing can be done - it may correct itself and may not. that is worrying me too but i am getting on with things and hoping for the best. i have a sort of bright light always present in my left field of vision..i can stil see from it etc but it does cover some letters over. its v annoying. my hearing - only when i hear music or a loud, continued noise - is muffled. not for dialogue just music. id be vry interested to hear if anyone else has experienced this from having an sah? no medical person seems to know anything about these problems, nor can offer any advice. well i'll leave it there for now, as i said ill put the full story on elsewhere on this site, i realy ont want to bore people too much with tales of woe!! im aware of how lucky ive been, sometimes i really do have to remind myself of that. i hope you are all well and thank you again sincerely, i look forward to reading your stories very soon. love erin x