the quine Posted February 21, 2009 Share Posted February 21, 2009 First may I apologise if this question has already been answered elsewhere - I have had a look but there is sooooo much info I am not sure where to find relevant subjects already discussed!! :? I had my SAH in May 2008 and apart from some minor self confidence & emotional issues feel I have made a pretty good recovery. I am currently seeing a physio for neck & shoulder pain (experience pins & needles in the hands at night) this is due to muscular postural problems brought about from being an enforced 'couch potato' for 3-4 months, now I am exercising again there are signs of improvement! My query however is with hospital follow up treatments? I was admitted to hospital (which is a story in itself) for a 6mth angiogram & MRI scan, however due to emergency admissions, lack of beds & time constraints only the MRI was done. I was sent home & told the angiogram may not be neccessary but that it depended on the wishes of my Consultant. Not knowing the results of my scan I waited....and waited....and waited some more! After nearly 3 months and many phone calls I was eventually informed that the angiogram would not be needed & my scan results were "satisfactory". I therefore would be contacted by the Neuro Clinic in TWO YEARS for a further check up??? I do not want to make a fuss or insist this is wrong but I was under the impression that SAH survivors were seen annually? Is there not a risk or possibility of coils compacting or a further bleed that needs to be monitored? I am happy to get on with my life, and am trying to do so, but I want to be confident that any problems will be detected BEFORE it's too late. So please can you tell me what others have experienced, what is the average/normal/expected intervals between tests & clinics? My GP is good but seems to know little about this condition & always refers me back to the hospital with queries. Am I being paranoid - probably? Do I need reassuring? I do need to know whether I should be asking for an appointment sooner than 2 years!! Cheers Jane Quote Link to comment Share on other sites More sharing options...
paul99 Posted February 22, 2009 Share Posted February 22, 2009 Hi Jane Welcome to behind the gray. I cant answer your question, there are many others on here who will answer it for you, but if you are concerned you can always ring up the consultants secretary and ask her what is required and explain that you haven't had the results of the scan and you are concerned. I believe you will get a response to settle your mind to rest. I dont think you are paranoid, just concerned because of what you have gone through , others on here will help you through this time and hopefully put your mind at rest again. Welcome and enjoy your new friends and look around the site ,there is a wealth of information on here good luck on your recovery. Quote Link to comment Share on other sites More sharing options...
charty Posted February 22, 2009 Share Posted February 22, 2009 Hi Jane I too had my SAH in June 2008, I had an MRI scan in January 2009, have just got the results back that said it was ok, complete occulsion of the anuerysm and they would arrange for a further scan in June 2010. Hope this helps Caroline Quote Link to comment Share on other sites More sharing options...
bogbrush Posted February 22, 2009 Share Posted February 22, 2009 Hi Jane A search of these boards for "follow up" reveals hundreds of posts on the subject. It has been discussed many times. I don't think there is an average/normal/expected interval between check-ups, scans etc. it varies so much between hospitals. In my own case, I was discharged from further follow-up scans after 18 months, so they are not even keeping an eye on my aneurysm now. I would prefer that it was still monitored though. Regards Keith Quote Link to comment Share on other sites More sharing options...
myratas Posted February 22, 2009 Share Posted February 22, 2009 After visiting my neurosugeon in Germany last week, they were surprised about the lack of check ups here, they normally would do regular scans three times in the first year of SAH then annually and more when ever required and normally when the neurosurgeon requests a scan it can be done on the same day and you can discuss the outcome within 2 days of the scan. Nearly all SAH survivors would be sent to a rehabilitation centre to cope with the physical and emotional side of the SAH. I am grateful to the NHS, after all they saved my life and I still think it's a good service to us all but I do wish that they follow some of their European counterparts to make it a better service to us all. When I move back to Germany in 2 years time at least I know that I can visit any neurosurgeon there and get the appropriate treatments even for the re-assurance that everything is ok. Myra xx Quote Link to comment Share on other sites More sharing options...
the quine Posted February 22, 2009 Author Share Posted February 22, 2009 Hi Guys, Thank you for the replies - so quick too!! I apologise to Keith & others for asking the question that seems to have been asked many times before - will see if I can navigate my way around the site to read them. I know I am extremely lucky - not only did I survive (with 11 coils in my head!), I do not appear to have any long lasting consequences either!! That should be enough & in many ways it is but I would like to know that if 'it' causes problems I have a good chance of it being spotted & I can continue to survive! Perhaps I should just shrug my shoulders, put it behind me and get on with my life - if only it were that easy Thanks & sorry again. Jane Quote Link to comment Share on other sites More sharing options...
Guest Beth1957 Posted February 22, 2009 Share Posted February 22, 2009 Hi Guys,Thank you for the replies - so quick too!! I apologise to Keith & others for asking the question that seems to have been asked many times before - will see if I can navigate my way around the site to read them. I know I am extremely lucky - not only did I survive (with 11 coils in my head!), I do not appear to have any long lasting consequences either!! That should be enough & in many ways it is but I would like to know that if 'it' causes problems I have a good chance of it being spotted & I can continue to survive! Perhaps I should just shrug my shoulders, put it behind me and get on with my life - if only it were that easy Thanks & sorry again. Jane Welcome, Jane! I'm sure no-one minded you asking the question about follow-ups; I think Keith was just pointing out that it's a popular question, rather than complaining about you asking! So don't worry about that I can't give you an answer from my own experience as I've not got round to being operated on yet, let alone needing follow-ups, but from what I've read it seems to vary from hospital to hospital... I think Paul99 is right though, there's no harm in ringing your consultant's secretary as he suggests. All the best! Quote Link to comment Share on other sites More sharing options...
bogbrush Posted February 22, 2009 Share Posted February 22, 2009 Hi Jane No need to apologise. Beth was right, I wasn't complaining. Maybe I should have worded my first paragraph a bit better. A search of these forums using a few keywords can often reveal the information you are looking for. It's a useful tool. Just click "search" at the top of the page, put in a few keywords and see what it throws up. Always happy to answer any questions if I can. Regards Keith Quote Link to comment Share on other sites More sharing options...
Blondie Posted February 22, 2009 Share Posted February 22, 2009 Hi Guys,Thank you for the replies - so quick too!! I apologise to Keith & others for asking the question that seems to have been asked many times before - will see if I can navigate my way around the site to read them. I know I am extremely lucky - not only did I survive (with 11 coils in my head!), I do not appear to have any long lasting consequences either!! That should be enough & in many ways it is but I would like to know that if 'it' causes problems I have a good chance of it being spotted & I can continue to survive! Perhaps I should just shrug my shoulders, put it behind me and get on with my life - if only it were that easy Thanks & sorry again. Jane Hi Jane - welcome to the site! Never worry about asking something that's already been answered - I daren't search my posts in case I find I've asked the same thing twice or more on my own...! :? After a couple of consultant appointments, I had an MRI after 2 years, and have pretty much been told to get on with it since then. Keith is right though, different hospitals seem to offer different levels of follow-up. I too would like to be monitored in the future. Good luck Blondie Quote Link to comment Share on other sites More sharing options...
Guest ElaineW Posted February 22, 2009 Share Posted February 22, 2009 Hi Jane - my mum had her SAH also in May 2008 and has never had an MRI scan. She had a CT scan six months after which showed no change. She has been told she will be seen a year later - for re-scanning so she is due back December. I agree there seems to be no "set time" for follow ups but it must be worrying. Mum is getting lots of pains "not headaches" across her forehead which concerns her and Decemebr seems a long way pff if something is going wreng but you never know when to worry or not. At Frenchay Hospital they have a Neuro Specialist Nurse so I am going to ring her for some reassurance - perhaps thats someone you could go to if there is such a person in your hospital, Consultans seen so busy all the time. Elaine Quote Link to comment Share on other sites More sharing options...
the quine Posted February 22, 2009 Author Share Posted February 22, 2009 Again - many thanks for replies and kind wishes! I joined this site back in June & it helped then, not just me but my family too, as everyone is so helpful with useful, informative & relevant thoughts, ideas & experiences. It seems nothing has changed - always someone there to offer a friendly 'virtual' hand. I have spoken to my Consultants secretary, in QE Birmingham, and she confirmed & then sent a letter to say I would be seen in two years at the Clinic. It seems this may not unusual, I just need to accept all is well and be positive (& keep my fingers crossed?). I am looking forward to 'celebrating' my 1st anniversary with my family, particularly my parents who were with me when my head 'popped' & went through hell, and my kids who have been and continue to be incredible also John my hubby without whom I would not have coped!! Happy to be here to love them XXXXXXX Quote Link to comment Share on other sites More sharing options...
tennissmithy Posted February 22, 2009 Share Posted February 22, 2009 Jane - I have sent you a pm Laura xx Quote Link to comment Share on other sites More sharing options...
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