Why surgery?

I am currently booked in for clipping surgery on my unruptured aneurysm on 13th December, however am still having trouble committing to this and feel like I want to change my mind. It seems un-natural to elect to go for such major high risk surgery for something that is asymptomatic and where rupture may never even occur anyway. I am basically at the point now where I have to make my committed decision, but still can't decide. It seems to come down to the fact that I am so stressed out and paranoid about it rupturing, even though it's not a huge chance, that I would be having the surgery for emotional reasons (I can't live with constant stress and would have no quality of life anyway if I don't have it done). I would really like to know for those of you who have been through (or about to go through) surgery, what made up your mind to have surgery vs monitoring and waiting to see if it grows?

Kitty this is such a personal decision that only you can make. Gather all the information you can from sources, friends, and this site and with your doctor, determine what is best for you. Another persons choice cannot be your choice just because it is the popular choice. I had a triple clipping in April and went back to work in July. There are some challanges I am dealing with, but those challanges also make me feel alive and reminds me my brain is fighting like hell to get back to where it was. What made up my mind to have the surgery was the size, family risk (my sister had one rupture and is in a wheelchair) and the confidence I had in my surgeon. I don’t regret it. Stay strong. Carol

Kitty,

I felt the same way that you do. It is a very difficult decision and one that you need to center yourself for and really dig deep down inside. I had 2 aneurysms. One was small, 4mm, but in a very dangerous spot. A spot where if it ruptured, I could lose my life. The other is larger, but it is in a spot where if it ruptured, unless it grows a bit, it is still outside the brain area, so I could choose to handle it differently, and I am waiting and monitoring that one. I had the dangerous one clipped on May 8th of this last year. My procedure went well and I am back to enjoying life now. I tell you this because I want you to know that for me, having this one taken care of allowed me to relax and not worry about having a future with my husband and kids. Hindsight, for me, It was the right decision and I am glad I made it. But this is a decision that is different in every case. I have friends who have had to make this decision as well, and everyone has felt sad, overwhelmed and stressed and yes, fearful. You are not alone in the way that you feel. I can’t tell you what decision to make, I can only tell you how I made my decision. I sat down and wrote the answers to all the questions I had. I researched the procedure and talked with my surgical team. In addition to questions regarding the actual surgery and recovery, I asked myself some questions like:
Can I live a quality life with the situation the way it is? Or will I worry every day?
What is my doctors experience (percentage) of problems occurring from surgery? What is the percentage I have of a rupture or something going wrong if I choose to monitor the situation?
Where is my aneurysm? Is it in a dangerous spot?
Do I completely trust my surgical team? Am I comfortable with the care center I am looking at if I decide to do the surgery?
And I included other personal questions regarding my family and my experience with healing from other ailments and surgeries. I kept them in a journal so that if I wondered why I made my decision, I could look at them and talk through them with others that were there for me. Brain surgery is a big deal, is not easy to contemplate and absolutely everyone feels the way you do prior to surgery. Do not expect too much of yourself. Ask your doctor for anti-anxiety help if you need it. I am glad that your date is coming soon because this decision process for you will come to an end whatever you decide is best for you. Warmly, Val

Kitty,

I felt the same way that you do. It is a very difficult decision and one that you need to center yourself for and really dig deep down inside. I had 2 aneurysms. One was small, 4mm, but in a very dangerous spot. A spot where if it ruptured, I could lose my life. The other is larger, but it is in a spot where if it ruptured, unless it grows a bit, it is still outside the brain area, so I could choose to handle it differently, and I am waiting and monitoring that one. I had the dangerous one clipped on May 8th of this last year. My procedure went well and I am back to enjoying life now. I tell you this because I want you to know that for me, having this one taken care of allowed me to relax and not worry about having a future with my husband and kids. Hindsight, for me, It was the right decision and I am glad I made it. But this is a decision that is different in every case. I have friends who have had to make this decision as well, and everyone has felt sad, overwhelmed and stressed and yes, fearful. You are not alone in the way that you feel. I can’t tell you what decision to make, I can only tell you how I made my decision. I sat down and wrote the answers to all the questions I had. I researched the procedure and talked with my surgical team. In addition to questions regarding the actual surgery and recovery, I asked myself some questions like:
Can I live a quality life with the situation the way it is? Or will I worry every day?
What is my doctors experience (percentage) of problems occurring from surgery? What is the percentage I have of a rupture or something going wrong if I choose to monitor the situation?
Where is my aneurysm? Is it in a dangerous spot?
Do I completely trust my surgical team? Am I comfortable with the care center I am looking at if I decide to do the surgery?
And I included other personal questions regarding my family and my experience with healing from other ailments and surgeries. I kept them in a journal so that if I wondered why I made my decision, I could look at them and talk through them with others that were there for me. Brain surgery is a big deal, is not easy to contemplate and absolutely everyone feels the way you do prior to surgery. Do not expect too much of yourself. Ask your doctor for anti-anxiety help if you need it. I am glad that your date is coming soon because this decision process for you will come to an end whatever you decide is best for you. Warmly, Val

I monitored mine for over 9 yrs. It was a little over 3 when we found it, a little over 5 when I had surgery. I ended up with 2 clips. When I found out it had grown, I was told to do something "Within the next year". When they got in there, had I not gone in within the next month, I would probably not be here today. They cannot know, and will not know, until they get in there. It is very scary and you have every right to be scared, but trust your medical team. I did, and I am SO glad I did. Living through this also helped me get my affairs in order. I'm 41 with 2 sons and a husband and needed to make sure they would be ok without me. Financially and emotionally. It was hard and it sucked, but on the 28th I will be 5 months post op. I don't have to EVER think about it again and to me, that was worth the risk. I wish you the best with your decision, and I'm always here for you.

Thanks all, your stories have been very helpful. I'm happy with my neurosurgeon if I have the clipping, but would really like another opinion that supports this decision if I am to commit to it. I saw another surgeon that does the coiling and he suggested either waiting and monitoring or doing the coiling. My surgeon thinks it's fairly urgent, does not want to wait until after xmas and thinks clipping is better for me. I've tried four other neurosurgeons, however none can see me before my planned surgery date. Do I cancel it and wait until I can get in to see someone else for a second opinion or do I stick with the surgery on 13th Dec.? I know I will feel a lot better if I have another opinion that agrees with the surgery, but do I cancel my current surgery date and risk waiting another few months (and possible rupture) or do I go ahead without the second (third) opinion? I feel like I'm running out of time and don't want to feel pushed into making this decision, but I also don't want to be stressed, paranoid and tearing my hair out for the next few months with worry. If I am having it done, I want it done asap. Please help!

Kitty Kitty, This is a hard decision. And it is a very personal one. I can only offer you why I decided to do the clipping instead of coiling. I could have done either and I did visit with several surgeons. My aneurysm was near my optic nerve on the right hand side. My surgeon averages one clipping a day…and I felt really comfortable with him. I felt he would be able to clearly see and clip the aneurysm safely. I did not want to go in for further monitoring, angiograms, and possibly the addition of more coils …and very often that happens with coilings. I did not want a coiled aneurysm to press on my optic nerve…I wanted it drained and gone and over with. I wanted to do this once and not have to think about it in the future. I wanted it cured. I wanted to be free of the worry forever. That is why I chose to do the clipping. I had a lot of anxiety right up to the surgery. That is very normal. Once you decide what you want to do, whether that be wait, clip, coil or go for another round of opinions, you will be able concentrate on mentally preparing…and that helps. You are unique and your situation is unique. Only you can decide what is best for you. Listen to opinions but in the end, your decision should be based on what you feel will be best for you. Please know that there is no magic formula for knowing how big an aneurysm will get before it ruptures. I know it feels like a lot of pressure to make this decision…and like it is so heavy a decision to make in such a short period of time. You found this out before it ruptured for a reason…those of us who are able to make this kind of decision before a rupture are blessed. I am sending caring thoughts your way and praying for you to have the information you need to be able to commit to a plan of action soon.

Thanks so much Valerie, that seems to be what I am currently thinking too. I have just got a phone call from another neurosurgeon to say I have an appointment next Wed, which is really good because none of the others I tried could fit me in and he was my last hope. If all goes well and he thinks clipping would be the right option then I will go ahead with surgery as planned on 13th Dec and pray that that is the right thing to do and that it goes without any problems. At least I will be feeling a lot more comfortable with committing to the decision. Thanks heaps for your advice and sharing your story with me, KK.

Kitty, how are you ?

I feel that I have to tell you that I am at the same point. I have known that I have an unruptured aneurysm since last MAY. Since then, I did nothing else than learning as much as I could and still can about this horrible thing.

Each time a doctor speaks to me, each time i receive a different opinion: from Paris, France, to Holland, to Belgium to America, all doctors have a different way to see how to treat or not this anny.

One doctor from NY said exactly that and I recorded our conversation. He was extremely kind to call me from NY in Paris, France, and what he said was: you have 1% risk per year if you do nothing and watch, and 5% to 15% risk if you do endovascular - clipping is higher. Now, other doctors say I have 3% risk/year if I did nothing. I wonder on what they form their diagnostic. Yesterday, I asked this doctor: why does an endovascular treatment be dangerous, and he said: the any can rupture during endovascular or clipping. When I asked why he said: if the arteries' walls are fragile, then it can rupture. Can't you see before hand if they are fragile, before the treatment ? He responded: impossible.

Now, I have 2 neurosurgeons who are for clipping because they say it's more definitive although you have to take medication.

I am telling you to show you that other people cannot decide, and I am one of them, the same as you. One thing this doctor in NY told me is: If, to have the same risk percentage equal to the treatment you, you might live 5 or 10 years a happy life, then who knows what would happen then, who knows if we won't find a different way, less dangerous way, to treat this ? In the meantime you'll have benefited the 5 or 10 years ahead. But of course, I can't promise that you won't have a rupture tomorrow. Those are his exact words. But he also said, your aneurysm is still small : 6 to 7mm and you might have had it for a long time. I also have an elongated neck, and tilted, irregular anny with 2 tits.

He finally added: take your time to decide, don't rush it. Do the treatment only if you accept thoroughly the consequences of your decision whatever it is.

So you see, even the doctors are not sure of what to decide. Did he say that because I am in France and have no insurance in America ? Did he say that because he read the statistics and found they are not wonderful or after all there are not so many ruptures after all ?

I am 66 years old, perhaps that makes the whole difference ? A lot of people in this site, my age or older, have had the surgery or the treatment and they are now in perfect health, so they say. Even though, I just cannot put my own head, in my free will, in the, how do you call it in english ? la guillotine ?

Whatever you decide, please let me know and good luck to you.

All the best

Michele

Hi Michele, thanks for sharing your story with me. Initially I felt the same way, if I could have another 5 or 10 years of life without putting myself through such a high risk procedure then surely thats better (1% risk per year rather than 5% risk of death or permanent brain disability with surgery). Two things have made me question if I should do that though:

1. Can I live with the anxiety and stress of knowing I have this time bomb ticking inside my head that could rupture at any minute? I am afraid that anything I do might cause it to rupture and I am conscious of that 24/7.

2. My anni is irregular in shape and border, and I have been told that increases the risk of rupture much more than size does (my anni is 7mm), although statistics show that 90% of those that rupture are small (under 10mm).

I now have a second opinion next week, and hopefully I will be a bit clearer on how I feel about proceeding or not after that. It's also hard not to listen to the advice of everyone on this site that has had it done themselves and would recommend it personally. Especially those that have had a rupture and wish that they had have had the opportunity to get clipped beforehand. I think too that my age had something to do with my surgeons recommendation, as I may have another 40 years of life and the chances of it rupturing during that time are quite high, not forgetting also that I do not know how long I have already had it, something that no-one is able to even guess.

Essentially I think I need to have the surgery for my own peace of mind, however I still have not quite decided definitively yet, so I will see how I am next week following my second opinion.

Thanks again, will keep you updated, KK.

Kitty, I am afraid I gave you the impression that I was giving you an advice. I am sorry if I did.

Although I speak english perfectly, sometimes I tend to be shorter in my sentences or not very explicit.

I was just telling you my story because when you hear many opinions, it happens that you end up feeling the decision you want to make.

Of course, you are only 40 years old and that is extremely important. I suppose age has a lot to do with it.

The doctors in France all want all to do the endovascular on me only because they don't do clipping anymore, or almost none. If you asked me, I prefer clipping because It's more definitive although a little more risky.

For reasons too long and complicated to explain here, I don't trust the french doctors nor the french medical system. This is why I want to first do the angiography in Holland or belgium where I found a neurosurgeon who is also a neuroradiologist. I hope this will make me decide.

In france, the best doctor there is wants to do the endovascular directly, without even knowing the exact specifics of my anny or if a clipping wouldn't be better.

I want to know how is my exact location because until now, because the MRI and CTA in france are not well done, nobody knows exactly.

What I wanted to tell you only really is to make an introspection, like in a yoga and feel in your soul what you want to do. The best advice would be given by your inside.

Please let me know

Bye now.

Michele

Hi again Michele,

No, I did not think you were giving me advice, just sharing your story and opinions. I know it's up to me what I decide, but it really helps hearing everyone else's stories, thoughts and opinions (and combining that with all the medical information and opinions I am given) to process in my head and help make that decision.

I know what my intuition tells me to do and normally I would listen to that, however this is the biggest decision I will ever make in my whole life and I don't feel I have the medical knowledge to be the person that makes that decision, even though I have to.

The surgeon I am seeing next Wednesday for a second opinion does both coiling and clipping so I hope that will give me more of an unbiased opinion on which to help base my decision. I'll keep you updated.

Thanks, KK.

The thought of monitoring it scared me more than the surgery. I had the surgery September 17th and am glad that I did. I hope to never have to go through it again, but it was worth it. I posted a blog "Do you believe in miracles?" that tells my story. I wouldn't be here today, if I hadn't had the surgery when I did. It wasn't known that the risk of rupture was as high as it was until the surgeon was in there. I like you was having a tough time living life without being so paranoid about it rupturing.

Dawn,

How long did you wait between the time they found out it was growing and the surgery? Doctors just found out my daughter's is growing and they say she can wait until summer like she wants (they really wanted to do it next month), but your story scares me. We want to have time to make the right decision, though. Right now she is being given a choice between clipping or the pipeline. She is 23, and her aneurysm is almost 5, in the carotid artery behind her eye.

Thanks,

Diana

Hi Val,

Thanks so much for your input and sharing your story with me, it's almost like reading something that I actually wrote myself! I have been writing down lots of things, especially questions for the doctors and surgeon, however they are just notes and some have been lost or thrown away. I have decided to follow your advice and keep all these things and my general thoughts at the time in the one journal so I can't lose anything!

I guess I have already decided to have the surgery, there are just still a few more questions I have that need to be answered before I am ready to proceed. I'm glad I did postpone the surgery, even though it was because of more of a freakout than anything else, but it has given me time to think about and process why I had agreed to go ahead with it in the first place. Currently I am booked in to see my neurosurgeon on 15th February at which time we are intending to to confirm surgery in the following week or two, however I have also decided that at the first sign of the slightest tingle where my aneurysm is, I will go straight to hospital, do not pass go do not collect $200! It's just not worth the risk waiting too long when I really already know what I need to do.

Thanks so much for sharing your experience with me, every bit helps just that little bit more.

I'm really glad you're doing so well now, and I wish you all the best for the future and an especially happy 2013.

Regards, KK.

Hi Dawn,

Thanks so much for sharing your story of survival and hope. That's exactly what it gives me-hope that maybe in a few months I will be in a similar situation and recovering well. And you're right, it is really quite a release to get all of your affairs in order anyway, something we take for granted that we can put off until "one day". I may not have any family, but I am only 1 year older than you and I still have things I would like to achieve in my life, I don't feel like I'm ready to go yet having mattered and done so little in this wonderful world.

Can you please give me an update on how you are now and any problems you had post surgery (and how you overcame them) and still have now, it would be greatly appreciated.

Thanks again for your support, KK.

Thanks Carol,

I'm really happy that things went ok for you and you're back at work again, that gives me a little more hope again. You've also made me look at things from a different angle, as in what it's like to be fully alive and not just dealing with the hardships and day to day issues we all have.

I guess I've pretty much made up my mind now anyway. I was supposed to have surgery on 13th December, but I just freaked out so my surgeon cancelled it and said to wait a couple of months until I felt that I had finished finalising everything and felt more ready. God bless him! I am now seeing him on 15th February to set the date for my surgery in the following week or two, and no I'm not going to chicken out this time, life's too short already and I want to make sure I have the best chance I can to keep going for quite a bit longer if I can!

Thanks for sharing your story and your support, it's much appreciated.

Regards, KK.

Kitty Kitty It is so good to hear from you and to know how you are doing! If there is anything more I can do to help further just let me know. Please keep in touch. Here for you! <3 Val