I’m new here. My aneurysm was an “incidental finding” when I was at the hospital having tests for something unrelated.
The on-call neuro initially said I had an 8mm basilar tip aneurysm; however after seeing a neurologist the next day & having a cerebral angiogram, the findings were:
“Basilar apex fusiform and dysmorphic aneurysm. There is an aneurysmal dilatation within this dysplastic basilar segment which measures 3.14 mm. There is also an underlying fenestration within the same segment.”
After the neuro team met to discuss the case, they all agreed (7 doctors) that the best option for now would be to monitor it by having another scan in 6 months to see if there have been any changes. They said due to the unusual shape of my basilar artery (apparently, it’s abnormal too), surgery posed a greater risk than they were willing to recommend, and since my aneurysm is asymptomatic, they want to leave it alone “for now.”
All of this is very concerning to me. While I don’t want them to go poking around in my head if they don’t have to, taking a wait & see approach is very unsettling as well, especially from my understanding the basilar area is one of the worst places to have an aneurysm & typically has a greater risk of rupturing. And i have a family history of aneurysm in that same area, as my mother died from hers that ruptured. So, my concern may be worse because of my experience with my mom.
Does anyone on this forum have a similar situation, or can anyone offer some insight/suggestion/etc?
I am very sorry to hear of your diagnosis. Your worry is completely understanding, I faced a similar situation 42 years ago at 20 years of age, and was sick with worry.
I was diagnosed with a 25mm fusiform basilar tip aneurysm. I had a few neuro symptoms-headaches synchronised with my heartbeat and tingling fingers. I was told that I didn’t have long to live without surgery but there were only 2 doctors in the world willing to do the operation (back in 1982). My parents took me to Canada (from Australia) and I had the operation. I was given a 15% chance of surviving without impediment.
Since it was a fusiform aneurysm, they couldn’t just clip the aneurysm, but had to clip the whole basilar artery and rely on a contra flow from the Circle of Willis. Because of the location of the aneurysm they had to do a retraction of my pons and my temporal lobe. The latter caused a post-operative haemorrhage, but I survived. A couple of months later I had an infected bone flap as well.
All this left me with epilepsy, and some other more minor neurological disabilities. BUT I WAS ALIVE, and have got 42 extra years, and counting.
Despite this I do sometimes wonder what might have been, particularly after I have had an epileptic episode. How long would I have really lived without an operation? Alternatively the operation could have gone better or worse.
As for your situation. Technology has improved a lot since the 1980s, in both imaging and treating. As I did, the best cause is to be guided by your doctors, they know most about the risks with or without operating, based on today’s technology.
Just make sure that you ask your doctors what symptoms to watch out for and contact them earlier if any symptoms develop.
I really hope that everything works out well for you.
Welcome Ms. Rita! I can imagine how concerning this is with not only the doctors suggestions, but your mom’s history. I’ve got a few things passed down through my genes that I wish my parents or whomever got it all started had just kept it to themselves.
We have had several members with fusiform aneurysms as well as some with basilar aneurysms over the years that I’ve been a member and I hope they come and reply to you. I didn’t know the term dysmorphic aneurysm and have had trouble navigating the internet today. But AI initially said it was genetic and can cause torturous arteries, I just couldn’t find the article it grabbed it from.
I do have torturous arteries everywhere apparently. I remember my Neurosurgeon at WFBH saying it meant squiggly and I told that to the Resident who was going to get me started on my last angiogram when she stopped to wait for Dr. Q-W to get it around the 90 degree bend. I tried to encourage her to try but she wasn’t having it. I imagine doctors aren’t used to some things as much as others. Dr. Q-W works on AVM’s that are quite squiggly and intermeshed. They’re to me, like a ball of yarn that the kitten got hold of and got all knotted up.
You have a couple of options since your incidental find, you can trust the team of doctors you saw (7 is a lot! Were any of them still Residents?) or you can ask for more opinions by checking hospitals you can travel to by sending the images and findings to other neurosurgeons. Since you’re in the Southeastern part of the United States, maybe you’re close enough to Duke which is always said to be the best here in my State of NC. Of course I’m biased and like Dr. Stacey (Quintero) Wolfe in Winston Salem (AHWFBH) since she saved my life. Some hospitals charge a fee for second opinions, some don’t so check on that as well.
In many ways, I’m glad I’ve never been in the incidental find club, the stress y’all go through seems to be overwhelming. But I’m in the popped my pipe (ruptured) club and it has its own issues. So please remember to breathe, nice deep, slow breaths. There’s a plethora of YouTube videos on relaxation breathing. Practice whichever method you choose until it becomes a part of you without thinking which translates to all the time. A couple other things that help me daily is to find something positive and gratitude. I’m not sure why they help, except for the relaxation breathing which keeps more oxygen in our brains, reduces BP, etc., but they make me feel good. This morning it was simple, we have small electric heaters to help keep our house warm…the motor went out yesterday on our heating system. We never noticed but someone cut the gas pipe at some point to the gas logs:crazy_face:
I’m glad you found us but hate you had to look if you understand what I’m saying.
I am sorry you are having to deal with this diagnosis but glad it was an incidental find. You’ll find many on this site that found out the by having a rupture. I was diagnosed with my basilar tip aneurysm in July of 2023 - also an incidental find. I completely empathize with the worry and not knowing what to do. I was given the choice to wait and watch or repair. For me the risk % was the same. What I highly recommend is getting more than one opinion. I got three and did my research on the most experienced or most recommended Drs. The range of experience is extensive. I ended up flying to Mayo in Rochester to get mine repaired by Dr. Lanzino. Another doctor that I have seen very highly recommended is Dr Nelson at NYU. I’m sure others on this site will provide recommendations as well. Some of the places will do an initial video visit. Mayo was able to pull up all my tests but some places will want you to send them the test results and images. You’ll fell more confident in your decision after you e had a second or third opinion. Keep the group updated we wish you all the best
Jonathan,
Wow, I’m so sorry you had to go thru all of that, but also what a blessing of 40+ more years though!
I think I’m a bit overwhelmed and trying to process everything. I am beginning to have days where it’s not instantly on my mind the minute I wake up and all throughout the day.
Thank you for your words of encouragement.
Moltroub,
Squiggly is exactly what my basilar artery looked like. I do love NC, as my husband is from there and I went to graduate school at ECU - go Pirates!
I have been trying the practice mindfulness/meditation & gratitude and it does seem to be helping, thank you.
My husband and I have been talking about maybe getting a second opinion. There’s a lot to look into with that, so we are just taking it one step at a time.
Thank you for sharing some of your experience with your “squiggly” arteries and for offering encouragement.
Thanks, CCR-4.
I do think I would feel more comfortable with another doctor’s opinion, not because I don’t trust her, but just because it couldn’t hurt to hear what someone else thinks.
Thank you for your suggestions.
You might want to try Dr Nelson at NYU first. He is actually the inventor of the flow diverter and I have heard of dozens of cases where people were told their aneurysm was too difficult but Dr Nelson was able to fix it. He is very highly respected and liked. And most importantly- experienced. This site helped me so much when I was doing my research and trying to figure out what to do. Another placed I went for I formation were two Facebook groups -Unruptured cerebral aneurysm and Brain aneurysm positive support. - as with anything there is good and bad informatio especially on Facebook - but after a bit you’ll be able to discern the good information.
You can try looking up here What doctors have you liked (positive reviews only, please) - #23 by FinWhaleFan for your area. I’ve read some members have difficulty when traveling to another State to get a repair, but others don’t. Another way is to just ask the members who they would recommend in your specific area. The Southeast goes from KY down to FL so travel time getting back and forth to your surgeon it’s important as well as cost for many people.
I graduated from UNC Charlotte, grew up loving the Trojans, but in our house we better go with Roll Tide🤣
