Mollynjosie Posted September 29, 2011 Share Posted September 29, 2011 Hi all, well today my neurologist rang, I knew it was bad when the dr themselves ring and it was, as you know had my sah last year in feb 010, since I survived it I have had a hard time dealing with it, firstly the why me!! And now the after Marth of the sah, the fact my life has changed, the memory loss is the biggest issue, and the fear that when or if it can happen again, they drs can't give me a answer, now today the neurologist has asked me to have another angiogram, now I must inform you that when I had sah they performed 5 angio's in those five the broke 4 of the 5 hence I now have only one vein going to head, now if I'm to have this angio and they somehow wreck this vein - I'm dead to put it bluntly as I have no back up veins, the reason given for it to see how the brain is the vessels, as a MRI won't show veins, so if I have the angio, its curtains, if I don't then I'll have to live with the unknown, at 37 I don't want to go for the sake of having the risk of vein being pierced, if I don't have it I'll have to " get over the fact I nearly died " some other way, So I'm in two minds do / don't way up the pros and cons at the moment cons are first pros are second, if anyone has advice, My family have left it to me, there not keen on it, they were the ones who had to sign the permission slip for the 5 to be done to save my life, I was unconscious, I in no way blame them, they did what they had to do, Just had to get it out Quote Link to comment Share on other sites More sharing options...
kempse Posted September 29, 2011 Share Posted September 29, 2011 Hi Samantha, My goodness, what an awful situation to be faced with. I can't begin to imagine how difficult all this is for you. I just wondered if perhaps you could arrange an appointment with your neurologist and have a "sit down discussion" with him - I would imagine that when he rang you, your mind would have gone into a bit of turmoil and it would have perhaps been difficult to take it all in. If this is feasible could you take a couple of family members with you and take a list of all your concerns with you. Otherwise, trying to weigh up the pros and cons on your own is not going to be easy. I wish you well with this and hope you find the strength and help to make an informed decision, Sarah Quote Link to comment Share on other sites More sharing options...
Sandi K Posted September 29, 2011 Share Posted September 29, 2011 Mollynjosie, I can't imagine how terrifying this decision is. I feel so badly that you heard this news today. Offering advice on something like feels impossible, I wish I could send you hugs at least to help. Can the experts provide you and your family with more information to help you feel more confident in making the decision? Based on what happened before I wonder if the neurologist and surgical team would meet with you and your family to go through the procedure with you and explain how and why it will be different than before. I can't see how you can possibly decide this based on a phone call. It's just so big. Hugs xo Sandi K. Quote Link to comment Share on other sites More sharing options...
donnamarie Posted September 29, 2011 Share Posted September 29, 2011 Hi Mollynjosie So sorry to hear your news big hugs going your way. i will be thinking about you take care donna Quote Link to comment Share on other sites More sharing options...
KelBel Posted September 29, 2011 Share Posted September 29, 2011 Hello MollynJosie I agree with the others; the hospital must be able to arrange a meeting face-to-face with the consultant to discusss the procedure in full because of the potential consequences. You need to be in possession of all the facts and statistics. It is totally unfair to leave you alone to think this through and try to make a decision based on a phone call. Keep us posted Take care Kel x Quote Link to comment Share on other sites More sharing options...
gaynor Posted September 29, 2011 Share Posted September 29, 2011 Hi Mollynjosie Thoughts and prayers are with you at this difficult discision making time. Best Wishes Gaynor Quote Link to comment Share on other sites More sharing options...
SarahLou Posted September 29, 2011 Share Posted September 29, 2011 Hello Mollynjosie, As others have said, it seems like you and your family need to talk in person with your neuro team. A tough choice for you to make either way. You're in my thoughts and prayers. Take care, SL Xx Quote Link to comment Share on other sites More sharing options...
johntaras Posted September 29, 2011 Share Posted September 29, 2011 Hello Mollynjosie, what a position to find yourself in after having survived your original SAH. It is a terrible position to have to choose what to do for the best. You do need to have a meeting with your Consultant to find out as much information about your prognosis before you make such a monumental decision. When I had my Angio to Coil a rogue Aneurysm I like you was out of it and it had to be consented by my family. But I did not have the misfortune with the Vein damage you have suffered. Please find out all you can to be able to make the best decision for you. My thoughts and prayers are with you. Quote Link to comment Share on other sites More sharing options...
Mollynjosie Posted September 29, 2011 Author Share Posted September 29, 2011 To John thank you for your kind words, but my sah wasn't due to anurisym, the nueros can't tell me why I had it. Only that one of the veins split like a garden hose, and after doing the 5 angiograms they wrecked the last 4 remaining veins so now I'm left with one remaining vein to head, hence when got call yesterday wanting to do another angio, to see how brain going after sah I m not in a big rush to go as IF they for some reason wreck this vein it's a over red rover, there's no turning back, as I'll be deceased not a great feeling for me or family,but being drs they say there is risks with every surgery, I know that but this is different, I want to live my life it won't be the same as before but take it day by day, and try to not dwell on the past, not easy some days but I guess were all in the same boat in here and it's good to be able to get things out to people who've been there, Once again thank you everyone who posted and will take your messages and do a bit of thinking, Quote Link to comment Share on other sites More sharing options...
jess Posted September 30, 2011 Share Posted September 30, 2011 Hi if it was me I wouldn't have it done. I would wait and see at the end of the day even if it is gonna go again it may not for 50 yrs and if you have it you could die. That is my opinion but speak to drs and others see what they think. Jess.xxx Quote Link to comment Share on other sites More sharing options...
SarahLou Posted September 30, 2011 Share Posted September 30, 2011 Hi Mollynjosie, Are there no other type of scans available that are safer to have? Does it have to be angio? I know of someone through someone who was in the same ish position you are and she has decided not to go ahead. I really wish she would join this site, and go to our local support groups but I get told 'she's fine, she's coping well'. Get strength from those around you, as their strength will become yours. Take care, SL Xx Quote Link to comment Share on other sites More sharing options...
jess Posted September 30, 2011 Share Posted September 30, 2011 I am having a mri and mra scan they will pick up everything. Jess.xxxPs not sure what they are will let everyone know next Friday. Quote Link to comment Share on other sites More sharing options...
goldfish.girl Posted September 30, 2011 Share Posted September 30, 2011 Hi Mollynjosie, I can't add anything new to what others have already said. I'm sorry you are having to go through this and I just wanted to say I'm thinking of you and hope you find a way to make your decision soon. Best wishes Michelle x Quote Link to comment Share on other sites More sharing options...
Juliette Posted September 30, 2011 Share Posted September 30, 2011 Hello Mollynjosie, What a horrible position to be in . I agree with everyone else, you need to have a sit down meeting with the consultant neurologist so he/she can explain better why they want to look at your brain this way, especially with so much trouble last time. What makes him think it won't happen again?? Why can't they look some other way? I'm no medical expert, but I had an MRA at my 6 month check - not 100% sure how it works, but was told by the radiographer that they excite your vessels using different frequencies so can see whats going on. The stiller you stay, the clearer the picture is. If they need to see whats going on i would definitely ask how else they can do it without risking your life. Don't be rushed into your decision. Thinking of you, take care, Juliette xx Quote Link to comment Share on other sites More sharing options...
Sandi K Posted October 8, 2011 Share Posted October 8, 2011 Hi Mollynjosie, thinking of you and just wanted to say hi. I hope your caregiving team has responded positively and is willing to meet with you to give you and your family more information. Hugs. Sandi K. Quote Link to comment Share on other sites More sharing options...
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