Karen Posted February 27, 2010 Share Posted February 27, 2010 Well, I'm due to have another MRA scan at Southampton Hospital on the 8th March. I will be 5 years post coiling on July 27th 2010 ..... I was admitted to hospital on July 25th 2005 with the brain haemorrhage. I have a neck left on my aneurysm after the coiling, which looks as though it was too small to coil, but this neck still has a risk of re-growth or recanalization, which means that it can also push out from other directions. I was also part of a trial re: A randomised controlled trial of hydrocoil versus bare platinum coils in the treatment of intracranial aneurysms. I'm still not sure what I was given .... but have a feeling that it could have been the hydrocoil or a mixture of both. I had an usual shape aneurysm .... it looked like a butterfly with a stalk... but then again, I had a sentinel bleed at 38, which went undiagnosed and then had the full monty at 42 .. so the blood vessel appears to have pushed out on two different sides.I've yet to meet anybody else, that's signed a consent form to take part in these trials .... which I believe was for the whole of the UK .... or irrespective of where the person was treated. The actual trial was sponsored by Lothian Health University Hospitals on behalf of all the NHS hospitals involved and by Microvention Inc, who make the hyrdocoils. I've kept my information sheet and even though I wasn't at all compos mentis when I signed it, I was happy to take part and just so glad that I was still alive and kicking, and if I could help somebody in the future, then that's all that mattered. However, I've had a look at this sheet, well yesterday and it said that these findings will be published in a medical journal. This is likely to happen eight to twelve months after the trial is completed. We will make arrangements to send trial participants a summary of the results on due course. I haven't received any info, as to date .... Now that I'm nearly five years on, it would be good to know what coils I did actually receive, so I feel that a letter may be going to Wessex Neuro in the next few weeks, as I have a feeling that a lot of records are destroyed after 5 years or from what I've read ... but would like to know the outcome and the results of this study. If you have taken part in this trial, then I would be grateful if you would post. I would also like to add, that you may be able to obtain a copy on CD of all of your scans/angios, if you wish to do so .... but the hospital will normally charge you for this facility ..... I think that it cost me about £25, but it was well worth it, as I haven't been able to see my original Neuro Consultant, since I left hospital after the coiling. At this stage, I think that I could well ask him at least a 101 questions .... would love to have the opportunity. Many thanks for taking your time to read this.... xx Quote Link to comment Share on other sites More sharing options...
Join the conversation
You can post now and register later. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.