I’ve been told by my neurosurgeon that my only option is a flow diversion stent (PED). But he has also given me the following statistics for risks. 15% risk of a stroke and/or aneurysm rupture during surgery. I will have to be on blood thinners (large dose of aspirin) for the rest of my life (due to location of stent) to prevent future strokes, and the dosage would mean further complications for any future operations and pregnancy/childbirth.
I am totally stuck with what decision to make as the risks seem so severe. I know I should be grateful that at least I have a choice and that at least the Annie was found before rupture. Right now I’m at the lowest dip of an emotional roller coaster where I wouldn’t wish this on an enemy.
Ask your surgeon what your spontaneous rupture risk is versus the risk of rupture during surgery. My risk of not surviving the coiling was only 5% and because I had relatives die of a burst annie, I opted to have the coiling. The 5% scared me - what if I was one of the 5 percent who don't make it? I am glad I had the surgery because the thought of a burst annie at some point in the future was more frightening than the thought of a controlled procedure. I had to wait a year for the procedure and it was an anxious time. I would try to get a second opinion if I was in your shoes. Ask the surgeons what their choice would be, if they had it to make. I really feel for you - but do stay strong & positive - you have a 85% chance of a positive outcome. My gut feeling is to advise you to have the surgery, because a burst annie in a hospital setting is far more survivable than one in a car or anywhere that immediate help isn't available.
So sorry for your diagnosis. Maybe a second opinion would be in order? Options are always nice.
My decision to clip was easy. My grandmother died at 63 from a ruptured aneurysm, so with that and the size, location and my age and health we didn’t think long before making the decision. We choose clipping so that it would be done and over and not have to worry about it any more, unlike coiling where the rate of compaction is high and requires multiple surgeries and you have limted options after a coiling.
Sorry to hear that, Jo. As you know, I am going for my clipping on Tuesday. The decision was really hard and really scary(clip or wait). At the end of the day, I realized that as terrified as I am about surgery(and I’m SCARED), im more terrified about waiting. It’s an emotional roller coaster but you WILL get through it. I love this quote "you don’t realize how strong you are until you have no chance but to be strong ". You got this- and we will all be here for you:)
i know making this decision is one of the hardest things you can do... my annie was thought to be 5mm due to the location and size waiting really wasnt an option - (it was 7mm) I chose the coiling and stenting as my options, yes I have to be on aspirin for the rest of my life but the side effects possible from clipping was not an current option for me at this time. I am still reeling emotionally from everything but then I look at my family and smile :) I am still here :) You will make the best decision possible for you. :)
It is a very hard decision, although my neurosurgeon told me the risks were about 5% complications for the surgery, and at this particular hospital, with their track record, 3%. I decided to take a leap of faith and follow my doctor's advice without allowing myself to second guess my choice. I am three weeks post op, and mostly doing well. I have been getting headaches, and some visual disturbances, but that is usually when I overdo it. I have had a few other side effects, but feel my cognitive functioning is the same. I think I was more afraid of it rupturing when I least expected it. The thought of dropping dead or having significant disabilities made me feel confident that I made the right choice. It is life altering, for sure, but I feel blessed to have found out about it before there was a rupture, and feel confident that as time passes I will continue to heal and get back to my normal self. Good luck to you.
I am so Jho that you are going through this. I think you should trust your Doctor and get a second opinion. I have a relatively small aneurysm but it's not in a good place and it's apparently a dangerous type. Operation in 3 weeks. Also both parents died very young, before 50. I also had the option to not operate and just have it monitored but I would have gone insane with worry with this ticking time bomb inside my head and I have a lot of stress (now being alleviated because I suddenly have good supports in place) so the surgeon thought it best to operate. If it were to grow slowly, in 10-20 years they may not operate at all. At least now I have a good chance of a good recovery, like you. We are young and you look incredibly fit. My risks of major complication are 5% so yours are bigger. Are you sure the risk was 15%, not 5%? Perhaps yours is much bigger than mine. Thinking and praying for you. For you to make the right decision and for a full, swift recovery.
I am a little late for this discussion, I never think of the groups. Have you decided anything yet? My only option was coiling with a stent. My neurosurgeon told me that if mine were to rupture, I would most probably not live to feel the floor when I hit. It was in the basilar tip (not large, either) and I don't remember hearing the % of things going wrong during the surgery - just the fact that he didn't think I would live if I ruptured was enough to convince me. And, he didn't want me to wait a few months either.
I knew then I was making the right decision. This was in 2011. I think 15% does sound high. The people I know who received the PED seemed to have a much shorter recovery than me, which I was amazed at.
The aspirin regiment I could see being worried about (especially while pregnant). I do take one myself and was told that if I needed to go off it for a treatment or surgery, just to start taking it as soon as possible. If you also have a gynecologist or obstetrician that you use, it might be good to question them also.
I have met some amazing people here who did rupture. Roughly they say 50% of people who rupture will die and the survivors have at least a 33-40% chance of some type of permanent disability. I didn't want to be in that group.
It's a hard decision - just know that we are there to make it a little easier. Take care,
Kat, are you having coiling or clipping? I wish you luck - mine was not a good location either. Clipping would have caused brain damage. I wish you well and pray that you will have a fast recovery. Take care,
I'm very late to this discussion also but wanted to offer my empathy and support. I have an unruptured aneurysm. I was not given risk statistics for surgery but mine is near my optic arteries. I worry about treatment versus non-treatment constantly. I can relate to your situation and wish I knew what the right choice is. Were you given the option to watch and wait? Is your doctor strongly recommending the operation?
Statistics frustrate me. On the one hand, 15% mortality risk means 85% success rate but I don't know. I had an AVM surgery with 10% mortality rate and many people thought that was high. I always try to think of it as anything over 40% being high.But by that logic, I'm saying that aneurysm rupture survival risk is negligible which doesn't seem true. It's so hard but try to remember that they have to warn you of risk. If the surgery is strongly urged by a reputable surgeon then I would do it.
I am incredibly late to this discussion. I just found this website and I am so glad I did. Hello Jho, I am struggling with the same decision - to have surgery or wait and monitor. I wonder if you have made yours by now. I had emergency surgery in Florida on November 3, 2014 when an aneurysm ruptured in Disneyworld, of all places. I am lucky to be alive, and grateful every day. The surgeon there said that the other unruptured aneurysm was very small and could be watched. After a long recovery, when I returned to New Jersey, the neurosurgeon here, after an angiogram, advised me to have the pipeline embolization done. He said the unruptured aneurysm, tiny with a wide neck, has a 5% chance of rupture. I am struggling with the decision and anxious all the time. I now have an appointment with Dr. Philip Meyers at NY Presbyterian in three weeks. If anyone knows anything about Dr. Meyers, please let me know. Thank you for being here. God bless you all. Margaret
When you have aneurysms there’s no way out, but to move forward. Sooner or later you will have to treat it with its risks in all. Even surgeries for minor illnesses have risks, pregnancies themselves, knee replacements, including tonsils, and so on. I understand your fears and anxieties, but you must be strong and courageous and treated it asap before it bursts and causes detrimental results that could last for a life time.
I am traveling in the same ship you are, I was diagnosed with 3 unruptured aneurysms so you are very fortunate you only have to deal with one! Two got treated in 2013, one with pipeline stent and the other with coils and stents. I am in 81 mg of Aspirin daily, I am going on 3 years on it. The side effects haven’t been easy, but tolerable, but everyone body systems are different, I know some who have 0 side effects others minor. Hey! We are alive (apart the 3rd annie pending) we can live (by the grace of God) without any fears of having aneurysms ruptured. Hang in there kiddo…have faith
Jho, This trial has made a lot of us to be stronger and more mature to have better characters and be useful to others and appreciate life one day at a time.
Joy and Margaret, I still haven’t had surgery (as I am based in the UK things move very slowly in comparison to the US). I have been given a tougher choice since first posting On here as the angiogram discovered that the aneurysm 1. Has grown 2. It’s on a malformed carotid so has more turbulent blood flow through it 3. The aneurysm is a complicated shape. I have no choice as there’s a very big chance of rupture.
I think the aneurysm was so different shape and less complicated I would possibly watch and wait until my little girl (aged 3) is in school as childcare is going to be a challenge.
Margaret seeing as you’ve already had a rupture you know what the recovery is like and perhaps preventing going through that again I would opt for surgery. Praying for a decision that gives you peace x
Sorry I Didn’t See your comment before replying to Margaret and Joy. See below.
Since my message a second aneurysm was found, it’s 2mm so it will be monitored.
I am also praying for bearable side effects xx
66Books said:
Hello Jho SerNa,
When you have aneurysms there’s no way out, but to move forward. Sooner or later you will have to treat it with its risks in all. Even surgeries for minor illnesses have risks, pregnancies themselves, knee replacements, including tonsils, and so on. I understand your fears and anxieties, but you must be strong and courageous and treated it asap before it bursts and causes detrimental results that could last for a life time.
I am traveling in the same ship you are, I was diagnosed with 3 unruptured aneurysms so you are very fortunate you only have to deal with one! Two got treated in 2013, one with pipeline stent and the other with coils and stents. I am in 81 mg of Aspirin daily, I am going on 3 years on it. The side effects haven’t been easy, but tolerable, but everyone body systems are different, I know some who have 0 side effects others minor. Hey! We are alive (apart the 3rd annie pending) we can live (by the grace of God) without any fears of having aneurysms ruptured. Hang in there kiddo…have faith
Jho, This trial has made a lot of us to be stronger and more mature to have better characters and be useful to others and appreciate life one day at a time.
in same boat too: incidental discovery of an aneurysm in Jan.. Was originally told it was small and risks v low. At neurosurgery appt a couple of weeks ago discovered it was bi-lobed, 4 +4.5mm, so even though it is on the artery to the optic nerve rupture risk is 24%. Can't be coiled; neck too wide. Got to go back for further review and angiogram in July, and to let them know if I want to choose surgery or not. I too was told 15% risks for surgery, plus additional risks to sight and speech centre as it looks like it will be full-blown craniotomy. So not an easy one to decide on, but am coming down on sideof the op as time moves on. Hoping they will get it done by Christmas but I guess that will depend on angio results too. thing that decided it for me was the benefit of knowing when I would face it all, rather than it going pop as I was wandering through the high street or in the middke of Sainsbury's. Docs currently saying they can't recommend either way. Not taking that too negatively - I think all they are saying is it is a real dilemma with roughly equivalent risks either way. It isnt the best podition to be in, that's for sure, nut I ferl a bit better thinking there will be an op at some point relatively soon. Best of luck with your consultations and surgery.
I had coiling and PED in 2012 because I had a large unruptured aneurysm with a wide mouth located in the artery behind my left eye. I was on a blood thinner prior to the surgery as well as regular aspirin. At my 6 month follow up I was taken off the blood thinner and continued on the aspirin. In 2014 I had a follow up angiogram and was told to reduce the aspirin to low dose. At the time of my aneurysm repair I was 65 years old. While on the large dose aspirin I had a mastectomy (discontinued the aspirin for 5 days prior to surgery) and received chemotherapy at that time. After I began low dose aspirin I had an appendectomy. The aspirin was not a problem during any of the surgeries or treatments.
I hope this information is helpful. You will be in my thoughts and prayers. Please keep us posted on your decision and how you are doing.
Hi Susan, I had foiling and Stent on the 2nd June. The op went well, recovery is fairly slow. I have a second found during an angio... it's watch and wait for now. I hope you are now in good health :)
Susan Sqteen said:
I had coiling and PED in 2012 because I had a large unruptured aneurysm with a wide mouth located in the artery behind my left eye. I was on a blood thinner prior to the surgery as well as regular aspirin. At my 6 month follow up I was taken off the blood thinner and continued on the aspirin. In 2014 I had a follow up angiogram and was told to reduce the aspirin to low dose. At the time of my aneurysm repair I was 65 years old. While on the large dose aspirin I had a mastectomy (discontinued the aspirin for 5 days prior to surgery) and received chemotherapy at that time. After I began low dose aspirin I had an appendectomy. The aspirin was not a problem during any of the surgeries or treatments.
I hope this information is helpful. You will be in my thoughts and prayers. Please keep us posted on your decision and how you are doing.