ninja

Hi All I have had the return of headaches (not as bad as SAH). I also suffer with arthritis and sciatica which is worse. As we were snowed in I used a taxi yesterday got my leg trapped in front seat and when I pulled it out this aggravated my sciatica so I was a real sight hobbling home. It would appear that the cold doesn't agree with us. Still we've got the summer to look forward to ha ha ha. Cheers John

Hi All On 13th January 2010 it will be 4 years since my embolization but I appear to have collected a new side effect, just wondering if anybody else has experienced it. I am referring to my increasing clumsiness. Over the last few weeks I tipped a whole cup of coffee over me and the floor in a local coffee house, then another day I went to town leaving the door of my bungalow wide open, I knocked over another cup of coffee in a friend's house and to cap it all last week I had a cold and was using a plastic inhaler full of boiling water and menthol which I proceeded to knock over scalding my chest, stomach and I'll leave the rest to your imagination. This resulted in going to my surgery and having the burn dressed the following day and being told I should have gone to hospital. I dread to think whats next. Anybody else experiencing this problem?? Cheers John

Hi Sorry Karen u got in before me John

Hi Here is the link www.dailymail.co.uk/health/article-1237605/Sharon-told-trapped-nerve-fact-days-away-death.html. Hope I did it right. John

Hi All Before any of you throw the Daily Mail away its well worth reading an article by Isla Whitcroft regarding Sharon Fielding's experience of an aneurysm (dated 22.12.09. page 51) .Its like reading my own story and the problems some of us experience regarding diagnosis and the possible outcome if it goes wrong. A very Merry Christmas and a Happy New Year to you all Cheers John

Hi Cal Congratulations hope things continue to get better and glad you enjoyed your break. Cheers John

Hi I've had both flu jabs, ordinary and swine and am OK. I did have a cough after the swine flu jab but I don't think it had any connection. I believe you are entitled to a swine flu jab if there is someone else in the home who is at risk. My wife Barbara has also had it as she's asthmatic and she seems OK to. Of course there are always exceptions to the rule so its down to personal choice but there have been quite a few people seriously ill in my area so I didn't hesitate. Cheers John

Hi All Reference to all my problems with the hospital last week I received a letter from the Chief Executive apologising unreservedly admitting there was a lack of communication. They have now told me that I will have a further MRI scan in the New Year and I now have an appointment for September 2010. They have stated in the letter that it is unlikely that I will have another bleed, lets hope they are right. Obviously I feel more at ease now and am just awaiting a reply from them regarding a biopsy which had been put on hold regarding another matter. It was a long battle and I suppose getting them to apologise is a milestone. Cheers John:-D

Hi Helen You are not going nuts. I am nearly 4 years post coiling and still have outbursts of temper and frustration. I've got to accept it now. I'm a 17 stone ex police officer and have been pretty hard all my life but YES I do get emotional and sometimes cry, hey whats wrong with that, you are the same as the rest of us. Cheers John

Hi Michelle I am on 30mg of amitryptaline every night for nerve and muscular pain. I find them very good and they also help you sleep. The only downside to them is that they make my mouth very dry, so dry in fact that people have commented on my speech (doesn't happen that often). I buy lozenges in the chemist which are basically artificial saliva and if my mouth dries up I take one, you can get them off prescription. Hope this helpls. Cheers John PS I don't think they should be taken in day as they make you drowsy which may affect driving.

Hi I have prostate cancer which thankfully is a "watch and wait" situation but as the blood test I have regularly is not 100 per cent reliable my consultant has told me I need a further biopsy but he will not do it until my neuro problems are sorted out. My neuro has told me to to tell him its OK but my GP has told me thats his responsibility and is contacting the neuro, (most of you are acquainted with my problems) but thought this is relevant to this item. Cheers John

Hi All Not been on for awhile been a bit down in the dumps. For those of you who are aware of my predicament I have now had a confirmation of an appointment with a consultant in SEPTEMBER 2010 yes its not a misprint SEPTEMBER 2010. I have had a reply from the Executive which was received within the 21 days, all it said was that enquiries are continuing which gets them off the hook as far as the time factor is concerned, The letter had my address incorrect and it was signed PP for the Chief Executive which gives me a lot of confidence. I also have an advocate from the health authority dealing with the matter. No doubt the next excuse for a delay will be the postal strike. Hope everything is OK with you all. Cheers John:confused1:

Hi I've had four MRI scans and I've got coils so no worries. Cheers John

Hi Rod I am over 3 years post coiling and need a walking stick to steady myself, admittingly I also have a spinal problem which has got worse since my aneurysm. I have a similar problem to Karen in that sometimes I look drunk and I don't even drink anymore (perhaps I should). Hopefully it will get better but if thats all I'm left with I'll put up with it in fact I've got quite a collection of sticks. Basically I need the stick to steady myself when standing still rather than for walking. Hope everything works out OK for you both. Cheers John

Hi All My continuing saga just goes on. It is now 5 weeks since my MRI scan and we have been ringing to speak to the consultant who we were told would ring us back, he didn't. Eventually his secretary told us he was on leave!!! I managed to speak to a different consultant who told me there was little change from my last scan and they would call for me again next year. When I told him about the other consultant stating it was dangerous all he said was "If you asked 5 physicians each one would come up with a different opinion as brain aneurysms are not fully understood". So now its gone from dangerous and requiring embolization to leaving it alone for another year yet I was on a waiting list for recoiling!!! I have put the complaints procedure into full swing and have the assistance of an advocate so all I can say is watch this space. Cheers John

Hi All Just an update. After causing a fuss had an MRI scan 3 weeks ago and began ringing hospital after 2 weeks when we were passed from pillar to post. As today 4.9.09. is 12 months to the day when I was told it was dangerous and also the hospital trust in this area stipulates that complaints must be made within 12 months we contacted neurologist's secretary who stated that she would put a note on my file telling him to ring me today HE DIDN't. Why am I not surprised. To cut a long story short I have sent a letter of complaint to Chief Executive of the Trust as per their procedure so hopefully things will start moving as now I've started the ball rolling I will not give up. Cheers John

Hi All Just a quick one I have been on aspirin for years even before my aneurysm and was told to continue. No one even hinted that aspirin was in any way a contributory factor. I have seen numerous consultants and GP since my aneurysm and none have even suggested I be taken off it so I continue to take aspirin without the slightest concern. Although I have concerns with my clinicians at present as far as drugs are concerned I take their advice and ONLY their advice. Cheers John

Hi All Job done MRI Scan completed today all I've got to do now is wait. Hoping for early result one way or the other. Cheers John

Hi All Success - I was told today that due to dispute between 2 clinicians I would have an MRI Scan by the end of the year and the result of that would be discussed with my neurologist and I would be seen next year. I didn't accept this and insisted I was seen earlier and at last someone has seen sense and I'm being prioritised and I'm having the scan this Friday and the result discussed as a matter of urgency. WATCH THIS SPACE!! Cheers John

Hi All Thankyou all for your replies. Unfortunatley Wales does not appear to have PAL but I have got details online for making a complaint to an independent person through the Welsh Assembly Government so it probably is a similar system. I really do not want to go this far as being a retired police officer I know what effect complaints can have on an individual whether they be false or proven but I now feel enough is enough both for Barbara and myself so I have definitely set the deadline for Tuesday as you have up to one year to register complaint and I last saw a clinician on September 6th last year. I will keep you all updated and hopefully my threads will be a bit more cheerful. Again thankyou. Cheers John

Hi Holly Thanks for your quick reply. I am going to give them until Tuesday and if I don't get a satisfactory answer I have found the details of the person to complain to on the hospital website and I fully intend to complain. My only worry is that the person I will be complaining about is the person who will probably be doing the embolization. I know they will do it professionally but it could be embarrasing for me still I've got broad shoulders. I just cannot believe they can treat people like this. Cheers John

Hi All Just an update on my saga. I typed a letter to the Manager Directorate at my hospital and he rung me a week last Tuesday and agreed that it would appear that the two clinicians have totally different opinions ( one said I needed recoiling as it was dangerous to leave, the other told me to live life as normal). The radio neurologist that did my embolization was on holiday till last Monday so he was going to show him my letter and would let me know an answer this week after they discussed it. Guess what NO ONE HAS CALLED ME!!! My wife rang this afternoon and was told that that the clinician's secretary was off duty and they didn't know where the Manager was but a message was left, NO ONE CALLED. We have now been told to ring on Tuesday next week, all the secretary can confirm is that I'm listed for a further embolization. My patience is wearing pretty thin now and my headaches are creeping back. I had built myself up to go into hospital this week as I was told they had beds available. I really think I need to take this matter further, any suggestions? At least the sun has come back to cheer us all up.

Hi All I have entered a few posts regarding the delay in my further coiling and have now taken the advice of a few of you. I have written a letter to the Manager Directorate of the Radiography Department. My wife spoke to the secretary last week who confirmed I am down for an embolization which contradicts one of the medical professionals I spoke to. He stated I need to be re-examined and found it hard to believe I was told it was dangerous by one of his colleagues. I would have thought somebody thinks it dangerous or why did they put down in black and white that I need a further embolization. Hopefully I will get a reply or my next step will be to seek legal advice. Cheers John

Hi Debbie You are feeling as we all do. I was coiled in 2006, was diagnosed with prostate cancer a year later and now I am told I am diabetic and was told last year I would have to be re coiled but am still waiting. I attempt to get on with my life which is hard at times. Some days I am quite active like today I cleaned car, cut some bushes, mowed the lawn and still feel OK. Tomorrow I may just go up town with my wife, come home and then sleep all afternoon. I take each day as it comes . It is hard but try and feel positive you have got over the worst many don't, you will get better but you have suffered a severe traumatic event and it takes time. DO AS YOUR BODY TELLS YOU. Somebody is picking on me just booked a few days in Torquay, yesterday Met Office said it was going to be good now they've changed their minds and its going to b!!!!y rain !!! Bye All Cheers John

Hi All Just reading Perry's message. I won't bore you all with my story yet again just an update. Last week I had to see a urologist as I have prostate cancer (at present its stabilised and they are just keeping an eye on it). He wanted me to have a further biopsy but said it would have to wait until I have my recoiling. I then thought this may speed things along as it is 9 months since I was told I needed recoiling and it was dangerous to leave. I rang the hospital and actually spoke to the radio neurologist that did my original embolization, he was not the man I saw 9 months ago. The conversation went more or less on the lines as "What can I do for you?". I outlined what was said by the urologist and he replied "No problem you can have a biopsy". I then asked when I was going to have my recoiling. He said "Who told you that you were being recoiled?" I told him that I was told in September last year and that it was dangerous to leave. He said "Who said it was dangerous" and unfortunately I did not remember his name so could not tell him, surely its on my records!!!. He then said "I will speak to him and will arrange for you to be re-examined in two to three months" No this is not a fairy story and I didn't imagine it, my wife was with me last September and she is fully compus mentis. I am seeing my GP on Tuesday and hopefully he will be able to clarify things but rest assured I will not be a happy bunny when I eventually see the neurologist, theoretically the last 9 months have been ruined for me due to stress and worry and here I am not one step further. Yes they did save my life for which I am eternally grateful but I feel now that I am just being pushed aside. Sorry to rant on hope you are all well and enjoying the weather. Cheers John