cas Posted October 11, 2011 Share Posted October 11, 2011 (edited) Hi, I've been looking at BTG for a while now, there seems to be a huge amount of information and a lot of mutual support. I've found the discussions a great help recently.My SAH goes back a while now: just about 20 years. It was clipped, was a horrendous trauma for my family but I put it to one side, pretended it never happened and, because I was very young, driven and couldn't accept being considered a 'victim' of ill health, I ignored what had gone on in an automatic, survival kind of reaction. I had no problems until last year when I suddenly started having weird headaches and they found 2 cerebral aneurysms. This time they were both treated with stents so recovery was technically much easier than the craniotomy and clip I had last time.I go back to have an angio every 3 months. I find it exhausting, incredibly painful and I seem to be living according to when my next exam is. I live OK with the idea that I have AVM and the docs have said it will happen again but I'm getting into a cycle of dreading the exam and it waking up my fears to the point where I'm thinking about not going anymore. I feel drained after the last one, physically and emotionally and it feels like I'm waking up after years of denying that actually I'm quite scared, and not like everybody else, something I never really admit to myself. Why has reality hit now, so long after he start of the problem? No idea but I'm feeling a bit lost and could do with hearing from anyone who goes through these kinds of ups and downs, questions with no answers and such! Thanks for reading. Edited October 11, 2011 by jess Quote Link to comment Share on other sites More sharing options...
Louise Posted October 11, 2011 Share Posted October 11, 2011 Hi Cas Warm welcome to the site glad you found us. its funny how you think things are ok and wham reality hits. maybe you should think about councelling know that it really helps, or maybe get intouch with your local Headway they are brilliant. I get like that the phycially and emotional draining thing but hey your here you survived thats the hardest bit.... look forward to hearing more from you... take care Quote Link to comment Share on other sites More sharing options...
goldfish.girl Posted October 11, 2011 Share Posted October 11, 2011 Hi Cas, That's such a lot to go through. I've never heard of them being treated by stents - is that a permanent fix? (I've read on here about the fluid on the brain being treated with stents & people seem to make an amazing return to reality afterwards). Will there come a time when you can be monitored by scans instead of angios? I find them quite traumatic too so really do feel for you having to have them so often. It must have been a horrible blow to have recovered so well & put the clipping behind you then to go through this again. But you DID get better & continued with your life, you WILL manage to do that again. Take care & best wishes with your recovery. Michelle Quote Link to comment Share on other sites More sharing options...
jess Posted October 11, 2011 Share Posted October 11, 2011 Hi cas I think we alĺ go through these ups and downs but we just carry on I know I do I have to I have two young children had them both since having aneurysms fixed. Just try to relax and rest and drink water and don't worry you are a survivor. Jess.xxx Quote Link to comment Share on other sites More sharing options...
cas Posted October 12, 2011 Author Share Posted October 12, 2011 Thanks to all 3 of you for your replies. I think it was just what I needed: plenty of other people have been through this, know what I'm on about and are getting on with their lives too. I have written a note above my bathroom mirror: 'I am a survivor'! and I will keep telling myself that. As far as the stents are concerned it should be a permanent solution because it rediverts the blood flow. I've had 2 for a year. Unfortunately it doesn't seem to have solved the problem because the aneurysms haven't got worse or better. Same size, same shape so it's wait and see for the time being and I've never been a patient person.....! Quote Link to comment Share on other sites More sharing options...
SarahLou Posted October 12, 2011 Share Posted October 12, 2011 Hello Cas, Welcome to BTG. Wow, you've been through so much going through this 20yrs ago and now you've this to deal with too. It's so hard to play the waiting game, I know exactly how you feel. I wish there was some advice I could give you but nothing I can say will take away your worries. Knowing there are people here that go through the same does really help though. You are not alone and this site is such a fantastic place for support , advice, friendships and lots of laughter along the way. The journey to recovery for me has at times been a very lonely place, BTG has been a god send to me. As others have said maybe Headway will be good for you, alot of people benefit from counselling too. As you say 'you are a survivor'. It's ok to be scared, angry etc etc, these are normal emotions and my best advice is to just ride with them. Cry if you want to. We're all here to listen to any rants you want to have! Take care, SarahLou Xx Quote Link to comment Share on other sites More sharing options...
Liz D Posted October 12, 2011 Share Posted October 12, 2011 Hi Cas Welcome to BTG. I'm so sorry you find yourself in this position, AVM must be a very difficult thing to have to live with. You have done really well to cope with this on your own for 20 years. Maybe now is the time to ask for support. Have you discussed how you are feeling with your GP? Your GP should be able to refer you on to a counsellor or psychologist. I received counselling a year after my SAH and I found it so helpful and reassuring. Not only are you able to talk through all your fears etc, they can suggest coping techniques, even teach you relaxation and anxiety management. Angios are horrible things to have to deal with. It's so different to having one when you have just had the SAH, you're full of drugs and not quite with it! I remember the state I was getting myself into before my 12 month post SAH angio. I was a nervous wreck and found it very uncomfortable but they are an important part of recovery and for keeping us well. But they do require a lot of energy as we need to try to control our anxiety and keep focused to get through them and for you to have to do this every 3 months, well what can I say, no wonder you sound weary! In saying all that, its good to hear your positivity, what a great idea to put the note on your bathroom mirror! You are a survivor and have done amazingly well in your recovery. Take care. Quote Link to comment Share on other sites More sharing options...
Sandi K Posted October 12, 2011 Share Posted October 12, 2011 Hi Cas, I'm glad you found us. It would take a lot of courage to go through a cerebral angio every few months. Liz is right, the first one isn't so bad, I thought it was really cool! I was drugged up though and not aware of the seriousness of the situation. I can't imagine psychologically preparing myself for that every three months. I am seeing a psychologist and finding it helpful in many ways, perhaps that's an option for you as others suggest? I like your idea of the note on the mirror. You are a survivor! Sandi K. Xo hugs Quote Link to comment Share on other sites More sharing options...
cas Posted October 14, 2011 Author Share Posted October 14, 2011 Thank you all. It was just the advice I needed and that extra kick of motivation to get me off my rear end and book my first counselling session for next week Quote Link to comment Share on other sites More sharing options...
Skippy Posted October 15, 2011 Share Posted October 15, 2011 Hi Cas welcome to the site and to the family. Counselling certainly helped me come to terms with everything and made me realise that none of this was my fault and that I really shouldn't be feeling guilty. I wish you all the best and look forward to chatting more x Quote Link to comment Share on other sites More sharing options...
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