I was recently seen at Mayo in Jacksonville for evaluation of a 6mm aneurysm of the anterior communicating artery on the right side. An angiogram shows the aneurysm to be two wide-necked lobes like Mickey Mouse ears and the neurosurgeon says that both operative options are complicated surgeries due to this. However, he does recommend surgery.
But I don’t like any of the options. Clipping will require at least two clips and one of the lobes is on the backside of the artery. I also have a hypoplastic A1 segment on the left. Coiling would require at least two stents due to the wide necks on both lobes – one in the AcoM and one in the ACA. Watch and wait is always an option, but that leaves me in a situation where a rupture could mean a less experienced surgeon gets a difficult repair. No good options. As it stands, I had to leave Mayo to get back to work for now and will follow up after my work up for trigeminal neuralgia.
It was the work up for this that led to the discovery of the aneurysm in the first place. An MRI shows my brain compressing my optic nerve on the left (opposite side of the aneurysm) and I have been on a trial of Indomethacin that seems to be helping, but I don’t know what they are going to want to do about the optic nerve. If that needs surgery too, then it would make sense to me to do them at the same time, but since they are on opposite sides, I don’t know. Right now, I just feel like I need all the information first.
All of your posts have been very helpful in trying to consider all factors for this hard decision. I appreciate all that you have shared. Any thoughts on the best way to go? I am particularly concerned about the stents requiring Plavix and the leaving of relatively new devices in my body. I am 50 years old and plan to live for a while. Any information you can share or support you can offer is appreciated!
You story is very interesting, especially since my wife had a 6mm (burst) aneurysm, but hers was on the right posterior communicating artery. I’m curious about the plavix. My wife was coiled in December of 2011 and then six months later needed additional coils and a stent. She was on plavix for a short time, but since has been on nothing but aspirin. The rupture really devastated her, lost all abilities, but she has had a really good recovery with her main difficulty being a left leg that has spasticity and therefore is not dependable in all situations. But she’s doing great and basically medication free. Thanks for sharing. Your situation is specific for you; I trust you’ll get all the information you can and make an informed decision. Then you need to trust your doctors. I’ll pray for you.
I’m going to second the question about plavix for life. I had two annies one ruptured - they coiled both - one had to be stented 2-3 months later. I was on plavix from January through August - when my angiogram was clear. I’ve been on 81 mg aspirin since. It was a year in January from the initial emergency surgery and April will be a year status post stenting. Everyone is different - my prayers are with you.
Thanks for your replies. Maybe I misunderstood about the Plavix?? Aspirin sounds better. I will clarify when I follow up. I am happy to hear from people doing well with stents. Long-term issues is my main worry but clipping has its drawbacks too. Thanks again for helping me sort through the options.
It is a tough decision and I found it kind of funny that this is considered ‘elective’ surgery. But it technically is. I had a stent and coil placed in Dec. 2017 to deal with an un ruptured 22 mm aneurysm behind my right eye. Had high BP treated with medication before this came up. Was on Plavix pre and post procedure - which is the current protocol I believe for the stent. Currently on 4 baby aspirin a day, for life I think.
My only residual issues are the vision issues that brought this to light (along with the ‘normal’ having extra stuff in my head issues) and that might be due to damage to the optic nerve, but I’m dealing with.
Information is good - try to stay in the day and focus on doing what you need to do so that you can leave the other stuff to your medical team.
There is no such thing as “plavix for life.” The standard is 6-12 months. Then patients are traditionally transitioned off plavix and onto something simple like low-dose aspirin, which is also a therapy that has a fairly long history and tends to be safer in the long run than plavix.
Plavix is a very strong medication and can have long term impact on bleeding and blood clotting, including fatal bleeding, which is why therapy on it is traditional short term after device surgery.
Thank you for clarifying. I must have misunderstood. It was a discussion just after my angiogram so it seems likely that I am fuzzy on the details. I am fortunate to have time to work everything through and seek clarification. Between my three-year-old and teaching teenagers I have no trouble living in the moment! In fact I had to leave Mayo before a full follow up due to work which is why I am taking it slow and still have questions. Thanks again!
Jennifer, I was on aspirin therapy for several years prior to rupture, I was coiled. I don’t take aspirin any longer and the cardiologist whole heartedly agreed.
Hello Jennifer. I had intervention coiling done by one of the most respected aneurysm doctors who’s at NYU Langone, New York City. I know it’s a trip for you but your life is in your doctor’s hands. I would consider consulting with him if at all possible as it sounds complicated. Dr. Peter Kim Nelson. They have a relationship with nearby hotels for you and family at very reasonable special NYU rates. My husband and I walked a couple of blocks to the hospital the morning of my surgery and my family stayed there for several days, safe and comfortable. My neurologist referred me to Dr. Nelson because “he’s the best in the country”. Something to think about.
I have residual, unanticipated challenges. The brain is a complicated place. My aneurysm was also behind my optic nerve and difficult to reach because of a 90 degree turn in the artery to get there. Thankfully he reached it via vascular. I am post surgery 3 years this week. I celebrated! Despite blurred vision that increases with use, brain fatigue and cognitive limitations, I am confident I made the right decision. I am continuing to manage my limitations and adjusting to my new life. All in all, no regrets. I know my limits of time and energy and handling of things that I’m not so great at anymore like math, spelling and processing instructions, general slower cognitive processing, difficulty focusing and completing tasks, etc. I think that every person’s experience is different because each procedure is unique and as I said, the brain is a sensitive and tricky place. Depression within a month of surgery that has continued for 3 years has been a challenge as well. I’m just throwing some info out there for you as you may not feel so fabulous following the procedure and I want you to know that you may face some obstacles. I’m still healing and giving myself the time I need to do so. Allow yourself to rest following your procedure. Your brain only heals when it rests, be sure to give it plenty of that. I went back to work too soon and eventually left work and have not returned.
I am not on any continued medications following the procedure as you inquired about.
It’s a very important decision so please do make sure you find the best doctor you can. I wish you great success. Stay calm. God bless.
Thank you for your reply and your doctor recommendation. Thank you also for your honesty and sharing your personal experience. I am sorry for your continued struggles and wish you the best going forward. I feel confident in my neurosurgeon and the care I received at Mayo. It is more about me coming to terms with the idea of letting someone work on my brain. I do worry about the potential for cognitive and emotional issues. I struggle with energy and vision already. I am pleased to hear that continuing medication is not common after coiling, but what I read here on this forum confirms that both clipping and coiling can have significant effects on brain function. To be blunt, it’s scary. I feel very lucky to have had this aneurysm discovered before it ruptured and to have this difficult choice, and I want to prepare as much as possible. I am leaning toward clipping at this point. Thanks again for your support in making this decision.
Wow…just wow. A 3 year old, full time job and this??? Wow!! I’m amazed you’re upright and able to type and put coherent sentences together!!!
Having anyone, even a trusted surgeon, open up one’s head and do work in one’s brain is the last thing anyone should want. And, it may be needed.
When my 2nd aneurysm was found, I told my surgeon this, “The only thing I can not have happen is another bleed/rupture. I’ll do anything to keep that from happening.” And I’m not you.
How is your support system? The waiting will be tough, well it was for me.
Have you ever heard of Belleruth Naparstek? She has some fabulous CDs/downloads on imagery meditations. I always use her “Guide to a Successful Surgery” before I have anything done…from angios to MRAs to brain surgery. She has CDs on Stress, TBIs, Pain, everything. She (the CD) really helped me stay calm, get some sleep and make a plan on how to handle my situation.
Someone said that it’s weird to call this “elective” surgery…and it is at this point. I asked my surgeon, who did my 1st brain surgery if he was any good!!! He said, “I don’t think about it like that. I’m confident. I know what I’m going to do to fix your aneurysm. I know how I’m going to do it. I know the path I’m going to take. I just don’t know what the traffic is going to be like that day.”
I’ll keep you in my thoughts. I hope for the best outcome. Take care of you
Mary
I’m glad you are confident; it’s very important. It IS very scary. My family was beside themselves and there were lots of worried people around me but they very positive & supportive and were also confident in my surgeon. I was surprisingly calm. I got my ducks in a row in many ways. I was confident in my decision to get the ticking time bomb out of my brain. I’ve talked with lots of people since then, for many it’s like nothing ever happened & their life is exactly the same as before, so that’s good news! I had quite a few conversations with God, so if that’s your thing, now’s the time.
Don’t be surprised by the confusion and memory problems you may experience right after your surgery. I’m telling you this because I don’t think anyone, including your doctor, can completely understand how it feels, because they haven’t had their brain operated on. It frightened me at first but it improved pretty quickly within the following week or so. When they told me at the hospital that I was being discharged, I got dressed, took my bag & started walking to the lobby! Obviously my brain wasn’t quite working right yet! Make sure you have someone staying with you 24/7, even if you think you are OK because you may not make the best decisions at first.
One more suggestion I have is to put things in place to be organized. If you take medications, get a box with the days of the week on it, even if you don’t use one now. Your short term memory may suffer for a while. Get post-it notes! If you’re not the tidiest home keeper (I’m not), get things organized so that you’re not overwhelmed when you get home, places like your kitchen and where you watch TV, your bathroom. I’m not talking about cleaning out all of your closets, just clear off your kitchen counter, have some places dedicated for “your stuff” and talk with your family about it. Tell them not to mess with your stuff when you’ve put it in a particular designated place. Get a calendar, even if you’re used to using your phone for that because it may be easier to use a regular calendar as you are recovering. The reason I’m suggesting these things is that in my situation, clutter and lots of visual stuff coming at me confused me; Too much stimulus to process visually and cognitively. I’m sure I could go on and on but I won’t. Just some thoughts that may help you.
I hope when it’s all behind you I’ll see a post that you’re back to your daily life, which, by the way, you will appreciate differently in many ways and that’s a great thing!
Be well, I’ll keep you in my prayers. And, if you ever want to reach out, please do! I know what it’s like to feel like you’re alone in processing all of the stuff in your head. I have lots of time on my hands and will be glad to be a resource for you if it will help you.
Any information you can share or support you can offer is appreciated!
God bless.
