Debbie Clifford

Hello, I just need to get this down on paper and out of my head - not that it's going to stop me worrying over it. About 5 weeks ago I was referred to a Neurologist because of other health issues and cutting a long story short he ordered a lumbar puncture and an MRI of my spine. Two weeks ago today I had the lumbar puncture but consequently spent 3 days and nights in my local hospital because of a low pressure headache (spinal pressure 13) which got worse instead of better. Thankfully that has cleared up. I'd told the Neurologist that I was due to have a head MRI in September to check on my collapsed coils so he said he'd try and get them done together. I am having the combined MRI next Wednesday which is good - saves on the travelling. The neurologist has already sent me a follow up appointment for the end of December, so confident is he of not finding anything wrong! Anyway, the whole point of this rambling is to say that I had another appointment letter through yesterday to see my consultant radioneurologist ( he did my coiling op) for an hour after I have the MRI!!! When I saw him a few months ago he said he'd either talk to me on the phone or have me in later to discuss the results of the scan. I phoned the hospital today to check that it wasn't a mistake, but they told me that there was even a note on my records to say I might be a bit late getting to the appointment depending on how long the scan takes. I asked if it was usual to have an appointment straight after a scan and at such short notice, and was told it was probably because I have to travel - it only takes an hour up the motorway! Not that they'd tell me anything anyway. I can't believe that the hospital is so switched on that they can accommodate me that easily when it is notoriously hard to get appointments within months let alone a week. Am I being paranoid? My feeling is that they have found something in my spinal fluid or that my local hospital have told them about the headache. I know, I know. It's all conjecture and I'll find out next Wednesday anyway, but I just wanted to ask you if you think the appointment straight after the scan is a bit unusual. Thank you for listening to the rant. Love to all Debbie xx

Hello Andrea My SAH happened 11th Sep last year and was coiled within 48 hrs - very glad to have had the first anniversary! I had my first follow-up MRI in March and was told that the coils had collapsed. My consultant said that they would probably have to put in more coils and a stent but would do another scan in 6 months before making the decision. I have an MRI booked for 30th September so will have an answer then I hope. I haven't worried about it too much, having confidence in my consultant neuroradiologist to know what's best for me and my aneurysm. I hope this helps. Debbie xx

A great big thank you to you Karen. I don't post very much - I'd much rather just read - never had much confidence in other people wanting to read what I write - but, I get an enormous amount of comfort and relief from reading everything here - and also some chuckles from the Green Room. You are an inspiration to me and many, many others. Thank you again xxx

WinB143 YOU ARE BRILLIANT! Thank you. I have been feeling down this morning with one thing and another and just read your post - I smiled and smiled. Debbie x

Hi, Thank you very much for your replies - it is much appreciated. I saw my consultant last Wednesday because of a lot of symptoms I've been experiencing over the last few months. I did write a two page letter outlining the problems I've had over the last two years which he is going to put on the system. He was very sympathetic as my GP is at a loss as to what to do next. Apart from the head fluttering etc I also have balance problems. I have weakness in my right arm and leg with my gait very unsteady. There has been a momentary blindness on my right side and my voice, although always weak, has got worse with episodes of slurring. There has been a tremor in my right hand for a couple of years, but it has got worse and now affecting my left hand. I am trying to be sensible about it all with my GP saying it's not a stroke (nothing on the last MRI) and probably due to the ME, and also maybe something to do with my lung deficiency, but my symptoms are getting worse with things I've never had before. I suppose by asking the question on here, I was looking for a rational explanation but knowing that it can't explain everything. Again my thanks to you. Anyway, my consultant said that I needed to have a lumbar puncture , and he would have a word with a couple of neurologists and refer me to one of them as soon as possible. Sorry to have raved on a bit - it's good to write it down and to know that you understand my fears. Take Care

Hello all, Sorry if this has been discussed a lot before, and I expect it has, but I couldn't find anything to help me. For the last few months (SAH coiled 10 months ago) I have had strange pressure and fluttering feelings in my head - feels like it's between my ears, but my hearing isn't affected. It happens especially when turning over in bed and lasts a few seconds - not pleasant. Today it is constantly there across the back of my head, and I wondered whether it is because of the very humid weather conditions we are experiencing (south Midlands area) and if the difference in pressure from yesterday causes such feelings. I would be grateful if anyone could help explain this. Many Thanks Debbie

Hi Gary, I too read loads before I was brave enough to put 'pen to paper'. Somehow writing down my experience was a step towards coming to terms with what happened. On the flip side you have to relive all the trauma and I know I shied away from that for a long time. I kept having flashbacks and unfortunately could remember every detail of that very frightening time. When I eventually built up courage to contact the group - surprise, surprise, the flashbacks started to diminish. I live on my own and apart from talking to my long suffering dog I had to keep a lot of my fears and worries to myself. It is good to share and although I haven't posted a lot I feel that this wonderful group has become a big part of my recovery. I look forward to reading your story when you are ready. Debbie

Hello everyone, Thank you all again for your comments - they helped me keep positive yesterday for my appointment. Well, first of all my support worker was able to come with me to see the consultant (I already have ME and an inherited lung condition which limits capabilities) which made it all a lot easier. My consultant listened to the symptoms I have been suffering from and, cutting a long story short, did say that it could be a problem with my pituitary gland. Apparently the aneurysm is right next to it, so the bleed might not have done it any favours. Anyway, he's going to write to my doctor to arrange tests for function etc. Next, onto the aneurysm itself. Aren't the images from the MRI amazing! I did ask if I could take a photo, but no. Apparently I can formally ask for my scan images through some department or other. He was fine about it and said they have to say no because of the risk of them ending up on social media or elsewhere. I digress. The coils inserted have compacted, which wasn't a big shock for some reason, and there is a gap of a couple of millimetres. He is going to have me scanned in 4 or 5 months to see if there has been any change and maybe insert a stent at some stage. All in all I feel it was a positive outcome - is that strange? I think having worried about it all for months and having these other symptoms, it was good to have him take notice of me and do something about it. I feel good today and have found myself grinning a lot . The aneurysm is in the area that affects personality so I'm taking it as a good omen and relishing the fact that I can smile and laugh and not dwell on possible negatives of a personality change. I know that I have been more irritable and short tempered lately but hope that these things will be offset by the funny side. Take care everybody and thank you for listening Debbie x

Thank you all so much for your positive thoughts - it's comforting to know that you all understand what's going on. I live on my own - apart from my lovely Bertie, he's great just being there for cuddles, and although my elderly parents live near they can't be expected to take on all my problems. Haha! Mandy, I never though of myself as a lurker before - that really made me chuckle, thank you. I had a catheter for a few days post op and vaguely remember having to drink a supplement of potassium? because the liquid going in was just going straight through - never thought that a catheter could have caused a problem with stretching. I do also remember that they kept checking for infections in my urine because of the frequency, but not finding anything. I have started a list of questions to ask at the appointment - which I'll have to remember to take with me and I will make an appointment to see my Doctor later this week to let him know what's going on. I will let you know how it all went, and once again thank you for your support. Debbie x

Hello all, Before I start, I would like to say how much this site has helped me through the last few months. I've read a lot of the topics on this wonderful site for while now and because I'm a bit concerned I've finally put pen to paper (shows my age haha!) I had a SAH on 11th sep 2014, and without going into too much detail, eventually ended up in QE hospital Birmingham. I had my aneurism coiled and spent 17 days in hospital recovering. Thankfully I have recovered quite well, but have the shivery feelings on the left side of my head with stabbing pains now and again and like a heavy weight pressing down on top of my head. I had severe head, leg and back pain from the leaking blood whilst I was still in hospital, but the headaches were virtually gone by about 6 weeks. There are a couple of questions I would like to ask. I know we are all told to drink a lot and I really struggle with this - probably only one to one and a half litres per day at the moment, and still I need to use the loo a lot. Whilst in hospital I was made to drink 3 litres of fluid a day. I can laugh about it now, but eventually I had to wear incontinence knickers (made me look like a sumo wrestler ) because, although I was in a side ward with my own toilet, I couldn't make it in time. The first two weeks when I couldn't walk were really exhausting having to keep ringing for the nurse to take me to the toilet Looking back, was that an excessive intake or is my bladder too small? During the last 6 weeks or so I have started feeling dizzy and disoriented with nausea. I have lost weight and have a hit and miss appetite. I had to go to Birmingham about 10 days ago for my follow up MRI and have now had an appointment to see the Consultant Neuro Radiologist this Wednesday (15th). They have requested a urine sample for that day - is that a normal request for a follow up appointment? Perhaps I'm being a bit paranoid about everything, but last week I suffered my first ever panic attacks out of the blue (I assumed they were panic attacks - felt like I wanted to scream, but if I did I wouldn't be able to stop) - and I don't feel depressed about anything in particular - are depression and panic attacks linked? It was horrendous, scary, and I don't want to feel like that ever again. Hopefully It's all ok and I am worrying needlessly. Perhaps you can ease my mind a little. Thank you for listening Debbie