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...
kempse Posted February 27, 2010 Share Posted February 27, 2010 Karen, Firstly, I would like to wish you well for your forthcoming MRA scan. I coincidentally received some correspondence yesterday in connection with a trial that I had taken part in, but it appears it is not the same study as you participated in. The title of my research study trial was @neurIST:Intergrated biomedical informatics for the management of cerebral aneurysms, which in plain English is a study into the causes, natural history and therapies of intracranial anerusyms, trying to discover which genes are involved etc. I must have a look at the website sometime to see how the study is progressing. Anyway, I hope you manage to find the answers you are looking for. Best wishes, Sarah Quote Link to comment Share on other sites More sharing options...
poppy Posted February 27, 2010 Share Posted February 27, 2010 Good luck with your mra Karen we will be thinking of you. Dee had an mra last Monday which was a trail for him as he has panic attacks in enclosed areas but he did manage it eventually. They came and got me to talk to him as they thought he wasnt going to go through with it. to date no results. love poppy & d Quote Link to comment Share on other sites More sharing options...
KelBel Posted February 27, 2010 Share Posted February 27, 2010 Hi Karen Good luck with the MRa. I was due to have an MRi & MRa last monday, but I had no contrast dye injected for the MRa, and when I asked the nurse she said the machine just does it anyway?...not sure this is true or not? I had read that an MRa required contrast dye... strange. I do not believe I am involved in any studies or trials, however I did apparantly have one 18-gauge microplex framing and 3 hydrocoils put into my aneurysm. Good luck again Kel xx Quote Link to comment Share on other sites More sharing options...
poppy Posted February 27, 2010 Share Posted February 27, 2010 Hi Kel Can only give you d's experience from last mondays mra, we thought he would have dye injected but they said no. The mra in his case gives a much more detailed picture than an mri. None of this made any sense to us what so ever but you are always in the medics hands. Although this was confirmed by d's neuro-psychologist. Hope this helps. poppy x Quote Link to comment Share on other sites More sharing options...
KelBel Posted February 27, 2010 Share Posted February 27, 2010 Cheers Poppy! I thought it was odd, but perhaps the machines are more advanced now than the info I have read! Thanks for putting my mind at rest, I didn't want to go for a follow-up to be told I had to go back in the white tunnel again... Kel xx Quote Link to comment Share on other sites More sharing options...
Karen Posted February 27, 2010 Author Share Posted February 27, 2010 Hi and thank you for your replies and good wishes, I also have never had any contrast material injected when having a MRA or Magnetic Resonance Angiography. I believe that the newer MRI scanners don't need us to have the contrast dye injected .... but, I'm sure that if I'm wrong, then somebody will swiftly interject at this point! Well, it's very interesting to see what you guys have been "fixed" with! .... I haven't heard of 18-gauge microplex framing .... so, will have to look that one up! Sarah, your study sounds interesting....and it does seem that in some cases, that genetics are involved .... hope that you keep an eye on the study and do let us know if you discover anything interesting. Poppy T, hope that Dee has good results with his latest MRA. Wishing you all well and many thanks for your replies, much appreciated!....xx Quote Link to comment Share on other sites More sharing options...
KelBel Posted February 27, 2010 Share Posted February 27, 2010 Hi Karen re. 18 gauge microplex framing; I just referred to notes I made on my follow-up 10th Feb - I should look it up too! Kel x Quote Link to comment Share on other sites More sharing options...
Skippy Posted February 28, 2010 Share Posted February 28, 2010 Hey there I was told when I went for my first past SAH MRI (three years ago!!!!) that the dye wasn't needed as the MRI machine is advanced enough not to need it. Quote Link to comment Share on other sites More sharing options...
jess Posted February 28, 2010 Share Posted February 28, 2010 Hope all goes well Karen xxx Quote Link to comment Share on other sites More sharing options...
Leo Posted February 28, 2010 Share Posted February 28, 2010 Good luck with your scan Karen. Will be thinking of you xx Quote Link to comment Share on other sites More sharing options...
Tina Posted February 28, 2010 Share Posted February 28, 2010 Good luck Karen for your scan on the 8th....really hope all goes well.....lots of love Tina xx Quote Link to comment Share on other sites More sharing options...
Karen Posted February 28, 2010 Author Share Posted February 28, 2010 Thanks for everyone's good wishes! xx If the neck has grown and I have the opportunity to have it coiled, then I will ... xx Quote Link to comment Share on other sites More sharing options...
bogbrush Posted February 28, 2010 Share Posted February 28, 2010 I will be thinking of you next Monday. Hope everything goes well and that the results can determine what steps to take next, if any. I know you are worried about it. Please take it easy. xx Talking about consent forms, I've just found a copy of one that I signed (very neatly) 6 days after my SAH (5 days after coiling) consenting to an angiogram. I don't remember a thing about signing the form or even the angio itself :confused: Quote Link to comment Share on other sites More sharing options...
tennissmithy Posted February 28, 2010 Share Posted February 28, 2010 Hi Karen Wishing you loads of luck for your scan xxx Am thinking of you xx Quote Link to comment Share on other sites More sharing options...
Karen Posted February 28, 2010 Author Share Posted February 28, 2010 Thanks Keith and Laura....xx Quote Link to comment Share on other sites More sharing options...
waterball Posted March 1, 2010 Share Posted March 1, 2010 good luck for your scan. diane x Quote Link to comment Share on other sites More sharing options...
Vivien Posted March 1, 2010 Share Posted March 1, 2010 Hi Karen, You are having your scan on my birthday! Good Luck I have the same problem as you and have to go for scans every year for 5 years because of a small bit sticking out. I am fine about it until the time of the scan and the wait for the result, then I start worrying about wether it has grown or not! Have decided now that the surgeon knows best and if anything needs doing he will inform me Best Wishes Vivien x Quote Link to comment Share on other sites More sharing options...
Janet Posted March 1, 2010 Share Posted March 1, 2010 Hi Karen Really hope all goes well for your scan next week. Quote Link to comment Share on other sites More sharing options...
Super Mario Posted March 1, 2010 Share Posted March 1, 2010 Hope everything goes OK for you with the scan. Quote Link to comment Share on other sites More sharing options...
Karen Posted March 1, 2010 Author Share Posted March 1, 2010 Thank you and I'm sure that everything will go okay, even though I'm not looking forward to it.... I'm starting to lose count of the amount of MRI's and MRA's that I've had! However, I would be equally as happy to get the neck dealt with, if it's grown, so that I can move forward or at least to be kept monitored. Will have to wait and see, but have a follow-up appointment with my local Consultant in May, once the scan results are through. Vivien, wishing you a very happy birthday for next week and will be thinking of you when I go into the tunnel! ...xx Quote Link to comment Share on other sites More sharing options...
Skippy Posted March 1, 2010 Share Posted March 1, 2010 Will be thinking of you Karen - fingers crossed that all is OK, as I'm sure it will be. Quote Link to comment Share on other sites More sharing options...
Karen Posted March 1, 2010 Author Share Posted March 1, 2010 Thanks Sami....xx Quote Link to comment Share on other sites More sharing options...
rod123 Posted March 1, 2010 Share Posted March 1, 2010 Hi Karen, Merrill took part ia a drug trial when she ahd her sah, it was some sort of statin which had for many years been used to aid recovery from heart problems they said that they thought it could aid the recovery from sah we signed all the papers and were told that she would get a phone call six months later to ask how she was doing and then they would send copies of the findings the her and her gp that never happened either, it does make me feel that they tend to use you a bit we know the research is needed but i feel the least they can do is to inform you as to the findings, Good luck for the 8th Karen we will be thinking of you, Rod Quote Link to comment Share on other sites More sharing options...
myratas Posted March 1, 2010 Share Posted March 1, 2010 I shall be thinking of you Karen and I sincerely hope and pray that everything is fine which I am sure will be. Take it easy when you get back home. Quote Link to comment Share on other sites More sharing options...
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