2 weeks ago, as the result of a CTA for a completely unrelated problem, I was diagnosed with a “potential 2.7mm aneurysm on origin of the right anterior cerebral; alternatively, this could be tortuosity of the arteries”. Left the hospital with that and a note to follow up with a neurologist in 6 months.
Met with the neurologist last week and he explained that low risk of rupture and that to definitively diagnosis it, I would need an angiogram, which he deemed riskier that the risk of rupture. He told me to come back in 12 months for another CTA.
A little about myself… I’m 47 and suffer from severe anxiety and rumination which is controlled by medication. Almost a decade ago, I caused a car accident (I got the worst injuries) and spent the next 8 months going through panic attacks, depressive spells, and just basically living as a shell. So needless to say, this diagnosis sent me down a rabbit hole of fear, anxiety, and inaction. Accompany that with me breaking a “Covid-induced going to a really bad place” wine habit, I’m not in a good place emotionally.
I took my husband to the appointment with me, as he is the complete opposite of me. I told him that I would have been very happy never knowing I have an aneurysm. His response was that he would have want to have known so that he could treat it.
I’ve read many scientific articles and know the percentages. 99% never rupture. But it is not the fear the outcome, it is the knowledge of having it. That for the rest of my life I will have this ticking time bomb in my head and that I will spend the rest of my life waking up afraid that this might be the day.
For my fellow wait and see’ers… how do you do it? What gets you through each day? How do you set aside the fear and embrace this?
First time responder here! From what I have learned from the webinars I have watched and from myself, YOU MUST ADVOCATE FOR YOURSELF. Seek a second opinion if you’re not comfortable. This is your life, your diagnosis and with everything else you’re enduring, you must feel comfortable. I was told I had a “small” aneurysm and that people have them their whole life and they will just monitor it by a ER doctor. It was an incidental find. I immediately called what I believe to be our best neuro hospital in the area and made an appt. The neurosurgeon stated it was small, but was in an area known to rupture and also irregular in shape, so they will treat it. I have to tell you, had they not said that, I would have almost demanded them to treat it for the exact same reason you are suffering now… FEAR OF THE UNKNOWN. Fast forward six weeks from diagnosis, I just got cleared two weeks post-op of a flow diverter implant and I am so relieved and thankful for so many things. Had I not been treated, I know I would have suffered and been throw into an anxiety ridden and depression disorder. Please, seek a second opinion or follow-up with your surgeon with your concerns. THIS IS YOUR LIFE!
Great advice and I second it, I would definitely go to a Neurosurgeon for a second opinion if nothing else, to feel more comfortable being on the W/W, which many of our members are. I’m on my fifth Neurologist since I ruptured, The first one was a Harvard grad and his office was too shiny with all the chrome, lights and even a mirror ball hanging from the ceiling, not to mention two tvs on two different stations that were both painfully loud to me in a very small space. The second was wonderful but we fired each other when a big outfit bought his practice out. My third was recommended to me by my PCP whose friend (an MD) was seeing him and loved him. He put me on some highly addictive medication that I was refusing to take as prescribed. Fortunately, he moved to another office that I couldn’t drive to so I got Dr. Romanowski who was wonderful for me but unfortunately he also relocated and the office would say they didn’t know where he went. In NC, they have to tell you if they know, it’s the law. But there’s always loop holes in the laws. Now I’m with Sergey who is also wonderful and a NP. The Neurologist that took Dr. Romanowski’s place couldn’t see me due to some issue between NY and NC. The point is none of the Neurologists I have seen do surgery. They always go by what the Radiologist writes down as their diagnosis.
As for angiograms there are numerous risks starting with the anesthesia. I also know my Neurosurgeon uses MRI/A’s, not a CT prior to all of my angiograms. My Neurosurgeon teaches the class on reading images and doesn’t need a Radiologist to tell her what the results are. In fact, one time I received the results before I saw her and I was scared. The results weren’t good at all. I asked her about ti and she said what? She took a look at my scans, read the results, jumped up and got on the phone reaming the Radiologist out. By the time she came back into the room which was maybe ten feet from the phone, my results were corrected😂
My neurosurgeon found two unruptured aneurysms during exploratory surgery for a brain bleed in 2012. (I was exactly your age: 47.) One was coiled; the other (2.4, I believe) is being watched. I graduated to MRAs every two years … until recently. I was diagnosed with antiphosopholipid syndrome, after a large DVT (calf to thigh) and my first Covid vaccine. I’m on blood thinners … and, yes, it’s scary. I worry so much that the aneurysm will burst. Plus, my INR results go up and down, up and down. How do I cope? I have “talk” therapy every week, I try to say out loud my medical concerns to a close friend or sibling (I’m often afraid to do so; it makes it too real), I stay active (in spite of a bad foot, dental issues and weekly lab visits for blood draws). Basically, I am so happy to be alive and, when I’m really anxious, I start cleaning my very messy apartment. I also walk an average of 4 miles daily. I write “panic” notes and wear medical IDs. When I see my doctor, I often cry – from relief. It can be quite embarrassing. It’s been almost 13 years that I’ve played the “wait and watch” with this aneurysm. The worst part, for me, is that I’m fearful of going places that aren’t close to a hospital, from hiking upstate to long rides on a highway. I don’t know if any of this is helpful. I keep saying to myself, “I will survive.”
Dear smugsy: Same here with CTA for tinnitus. Just something I have no control over, and don’t waste time worrying about.
Got a lot going on medically. CTA also found nodules in parotid [salivary] glands on both sides. Possible Warthin’s tumor per doctor on May 10. July 5 is the date for needle biopsy. [Nothing like waiting for life altering tests!] Warthin’s is usually benign, but I have more than one on each side and I am a smoker.
Have PTSD from car accident, depression, insomnia, GERD and assorted pains that come & go.
Did my end-of-life paperwork and medical instructions several years ago.
Wear a bracelet with my exact diagnosis and treatment instructions.Scheduled for another CTA in late June, so will see if any changes.
The father of a friend of my children came home on a Friday night with a headache and was dead by Monday of a rupture. The actor recently, and now the father of a Jeopardy champion. Don’t know if any of them had advance warning–for us that could be a life saver, since we can learn about care treatments, etc.
i was wait & see for many, many years. eventually, i will say you do stop thinking about it as intensely, but never did i ever stop thinking about it completely.
the whole “99% never rupture.” is inaccurate. it all depends on lifestyle, genetics, location, chance, and the risk rises as the years press on. so while the likelihood of it ever rupturing before you take your final walk into the woods is yes, low, the worry never leaves and the risk is still there and that’s something some people can live with … but i couldn’t. i’ve had anxiety, depression, the whole cptsd cocktail all my life, too. <3
the procedures complication rate to “fix it” for my own was about the same (2-3%) as my lifetime rupture risk (flow diverter). i couldn’t live with my time bomb. mine was 3mm. the risk with an angiogram in capable hands is less than 1%, so i’d get a second opinion. also, during my icu stay after my flow diverter surgery, i saw people in rooms with their mourning, worried, weeping families who had actual ruptures. i knew then i made the right choice.
like i said, some people can live with the worry and yes, the risk is low. but you have control over your choices. you have years to do research. you even have years to learn to cope, if you wanted to remain watch & wait.
Dear smugsy: Same here with CTA for tinnitus. Just something I have no control over, and don’t waste time worrying about.
Got a lot going on medically. CTA also found nodules in parotid [salivary] glands on both sides. Possible Warthin’s tumor per doctor on May 10. July 5 is the date for needle biopsy. [Nothing like waiting for life altering tests!] Warthin’s is usually benign, but I have more than one on each side and I am a smoker.
Have PTSD from car accident, depression, insomnia, GERD and assorted pains that come & go.
Did my end-of-life paperwork and medical instructions several years ago.
Wear a bracelet with my exact diagnosis and treatment instructions.Scheduled for another CTA in late June, so will see if any changes.
The father of a friend of my children came home on a Friday night with a headache and was dead by Monday of a rupture. The actor recently, and now the father of a Jeopardy champion. Don’t know if any of them had advance warning–for us that could be a life saver, since we can learn about care treatments, etc.
The “advance” warning of a rupture is a sudden thunderclap headache. It’s not that far in advance, the aneurysm ruptures, you get a headache unlike anything you’ve ever experienced. It is a knee buckling type of headache and everything seems to go awry. If this happens, go straight to the ER, do not ignore it!
Having advance notice of this I find very helpful. Without knowing about it, you would never know if a bad headache is deadly!
Have been getting upper left side headaches more and more. Just enough to be annoying, about level 2-3 pain, so I don’t take anything. Not sure if they are pre-Sentinel headaches, so just do pain management & relaxation techniques.
About as prepared as I can be when the BOMB goes off, if it ever does. 4 mm in Dec 2022, If, please!!!, no change at rescan in June, I will keep living my life. But still being careful–no headstands!
Between procedures 2 and 3, we went to the beach near Wrightsville where I saw some signs for hang gliding. I wanted to try it and BH said absolutely not. I was insistent and probably irritating with my insistence so we called Dr. Q-W who laughed and said I could do anything I wanted. Wouldn’t you know it the next day it rained…still haven’t done any hang gliding.
Hi! Just sharing my experience , maybe it will be helpful .
Having similar size aneurysm on the watch .
My neurosurgeon did angiogram , did CT , before deciding just to watch .
First time after I discovered about aneurysm , I was in shock , it took decent amount of time to proceed it . Maybe 2 years I was worry , I was reading reading a lot information , including this forum daily . At one point I have stopped . Living my life , getting nervous when it is time for annual appointments , but the rest of the time just normal life . I have interesting work , so that helps .
So I think it takes time to accept new situation ,to adjust and your husband right : better to know about the problem and have it monitored .
