4 mm carotid-ophthalmic aneurysm

Hello everyone,

My name is Tatyana, and I am 45 years old. I have an unruptured 4mm saccular aneurysm arising from the medial ophthalmic branch of the left internal carotid artery.

Here’s my story: Back in 2016, I was diagnosed with a 3mm aneurysm. My neurosurgeon at the time suggested we wait and monitor it due to its challenging location, as he mentioned that intervention would depend on its size.

Fast forward to August 2024, I experienced severe headaches during intercourse over a span of two weeks. My doctor referred me for an MRI, which showed that my aneurysm had grown from 3mm to 4mm. Its shape, described as resembling a boot, prompted my neurosurgeon to recommend placing a flow-diversion stent.

I’ll need to undergo an MRA first, followed by the procedure. I’m feeling very anxious because I haven’t been able to find much information or statistics about people who have undergone this procedure with the same location and shape of aneurysm.

If anyone here has a similar aneurysm and has had the procedure, I would greatly appreciate it if you could share your experiences. What should I expect, and how did you feel after the procedure?

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Hi @Belka04 As noted I had a flow diverter placed on Monday. I am 76 yrs old and I seem to have come through it okay. Very tired now. No deficits. Bruising at the groin where they went in. Slight headaches. I saw beforehand a neurologist, two neurosurgeons and two interventional radiologists for consultations before I made a decision to treat my 7+ mm unruptured ICA aneurysm. The advice of several doctors really helped me toward a decision.

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Thank you for sharing your experience. It’s great to hear that you came through the procedure successfully and without any deficits. Wishing you a smooth recovery…

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Thank you. Keep asking questions. You’ll get to a decision. There are great doctors across the country who are well versed in these procedures.

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Thank you!!!

Welcome to our group Tatyana! I have an aneurysm at the LICA bifurcation. It looked like a blackberry not a blueberry with over 2 dozen daughter sacs and either mom or one of the girls got mad at each other and it popped. So I’ve learned about aneurysms since then. :rofl:. In all honesty, you don’t want to be in my group if it can be avoided.

Had my stent put in on the 4th try and it seems to work, interestingly it’s in the ACA and covers the aneurysm, thus the bifurcatio. @seniorlady just had a very cool stent put in and didn’t need coils! You should look it up, it’s pretty neat. I have the Neuroform Atlas Stent and thank the folks who invented it every day. How awesome is medical science?! When I first started here back about 10 years ago, the stent seemed to be the FRED but there’s many more now which is a great thing for us with difficult locations.

Sounds like you trust your Neurosurgeon and I think that makes all the difference. I trust mine as well. She’s not at a major medical facility, more a medium sized with the medical college attached, so lots of medical students/residents/fellows. Folks will suggest you go to a large hospital since they have more experience. Many will get more than one opinion. If I could have, I still would have picked WFBH, because I’ve been there for clients at Brenner’s and I like them. My other choices would have been Charlotte, BH doesn’t like to drive there or Duke which is on the other side of the State!

I count myself fortunate I didn’t have to have the stress you’re going through. But please learn relaxation breathing, I promise whatever type you learn, if you practice it constantly so it becomes part of you without thinking it will help you the rest of your life. Box breathing is all over the internet, so easy to learn. The way I learned back in the ‘70’s was to inhale slowly through your nose down to your diaphragm, hold it for slow count of five, exhale fully, repeat. It’s the style I taught to my clients for many years. It can control your BP, gives your brain more oxygen and when I had male clients, I’d have them make a fist and do the relaxation breathing, they couldn’t keep their fist tight which always amazed them so they’d practice more🤣. Yoga, Tai Chi, walk around the block, or park will all help reduce anxiety as well. Focus on something else, our lives are not controlled by our aneurysms, we are more than that! I allow myself a set amount of time to acknowledge my rupture and how it has changed me. So not ignoring it, but just not allowing it to control my life if that makes sense.

Is your neurosurgeon going to do an angiogram first and then another for the repair or does he just want to go in and fix it? When mine installed my stent during the pandemic no less (for some reason I always think of a mechanic on this) I didn’t need the diagnostic angiogram, the imaging told her everything she needed to know and hardware installed! For the follow up diagnostic angiogram to see how the stent was doing, they went through my wrist (radial) and not groin (femoral) the group here told me how much easier it was and boy were they correct! Either way works so it’s up to the Doc and your body. They take a machine to check the radial artery to see if they can use it. They may have on my femoral but I think they just locate it, can’t recall.

We’re here for you, we can all share our experiences. I hope many more members come and talk with you.

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Hello Moltroub,

Thank you so much for the warm welcome and for sharing your journey—it means a lot to connect with others who truly understand what this experience entails. Yes, @seniorlady contacted me, welcomed me to the group, and shared her story with me.

I completely agree that trusting your neurosurgeon is key. I’m not entirely sure I know mine well enough yet either, which makes me a little hesitant. That’s why this next appointment feels so critical to me. I’ll be discussing the angiogram and working through the decision about the second procedure. Right now, I’m struggling with the fact that the risks seem to outweigh the chance of rupture.

Yes, anxiety is through the roof, but I think there might be even more anxiety with a stent in my head! :face_with_peeking_eye:

I ride my bike every day, and it really helps me manage stress. By the way, I don’t have issues with blood pressure, I’m not a smoker, and I don’t consume alcohol. However, I had a total hysterectomy at 24, so my body has been a bit different since then, with some challenges like arrhythmia.

Thank you so much for your support—it truly means a lot.

Tatyana

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Hi, @Belka04 I also have had a hysterectomy and I’ve had PVCs, a form of arythmia. Again, ask questions, especially about why “watch and wait” is not recommended as an option given your aneurysm size.

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Hi, @seniorlady

Thank you for sharing your story. It’s comforting to know there are people who’ve gone through a similar journey, it makes the path feel a little less daunting. I’m curious about the potential long-term effects of the stent. Understanding these would help me feel more prepared for what to expect.

Thank you for your support.

Tatyana

@Belka04
Hi Tatyana
I understand how you feel about getting your aneurysm fixed. I will assure you that you don’t want to be in the same club as @Moltroub and myself and many others in this forum. Please read about my experience of the ruptured aneurysm in my profile.
However what you have described seems a little backwards for me, maybe you can ask why the neurosurgeon would like to do a diagnostic angiogram and then a new angiogram for the stent? Perhaps the doctor needs more information about how it looks.
I didn’t have the luxury of having my 2,5x 5mm aneurysm on my right internal carotid artery fixed before it burst but I was lucky to have survived which not many of us do. I’m sure you are familiar with the statistics.
I had to get a stent and additional coils six months later, I was anxious about it but my neurosurgeon told me that it would be a “ walk in the park “ compared to the rupture he had told me that it was still filling with blood and he couldn’t guarantee that it would not rupture again, then he said , and if it does, you will not survive. That was the statement I needed from him.
He was right, it wasn’t as bad as I thought, I got home the day after the surgery, tired and sore in the groin, but that was pretty much it. I don’t know about any long term effects of having a stent, but ask your doctor about that.
I have just celebrated my 4 year survival and I had an MRA with and without contrast before I had the follow up appointment with the doctor. Everything looks good and I am welcome back in 2 years.
I have always said, that if I ever need to do the surgery again, I wouldn’t be happy, but I wouldn’t hesitate to do it.
I hope that you will get the answer you need from your doctor and remember that you are the only one who can decide what to do.
Watch and wait or go ahead with the surgery.
I wish you the very best.

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Great on riding your bike! Ok have to ask - bicycle or motorcycle? I have SVT and some little genetic issue with mitral valve that their watching, thanks Mom! I still have my uterus but in my late 20’s a GYN had to go in and remove a lot of scar tissue. Since I ruptured I’ve developed DM, I think there’s a genetic link as Dad had SLE.

I’ve also never had high BP unless the normal reaction to pain and the Triple H therapy for my vasospasms. There was one doctor who I think was part of the Critical Care team and not the Neurosurgery Residents that told me to stop my relaxation breathing as it was messing up the medications and keeping my BP too low for them. I rarely drink alcohol anymore but will have a glass of wine or beer on occasion. I did have a very high stress job in CPS as an On Call SW. I celebrate not having to work holidays every year. There are positives in everything, we just have to look.

When Dr. Quintero-Wolfe installed my stent it helped my brain better than the first coiling, the second coiling, the third with coils and balloon assist. I was actually able to have awareness of thoughts! Other than that, I rarely think about my stent or any of my procedures unless of course in here because it’s a part of conversations. I cannot tell I have a stent or any of the plethora of coils she “shoved in” her words not mine. However I do feel the scar tissue from the lumbar repair I had the year before I ruptured and I certainly feel the damage I did to my shoulder.

With the stent, I just am on baby aspirin for the rest of my life. I was on Plavix for a short time before and after the stent. My weight limits haven’t changed since I had my lumbar repair, seems Neurosurgeons like 40 lbs, I don’t listen to them which aggravates the heck out of Dr. Quintero Wolfe, but she gets that I have STD (Stuff To Do):crazy_face::joy:. Because of the damage to my brain, I’ve got a bushel full of rules that aggravate me but I abide by them for the most part as much as I can or I frustrate everyone and then come the lectures. Before my stent, I couldn’t really understand the lectures and I didn’t think their rules were good and my oppositional self retailiated.

What is it about the possibility of a stent that’s making you feel anxious? Have you tried writing down pros and cons? Yes ma’am there’s a lot of risks with angiograms be they for diagnostic reasons or placement of coils and or stents. Risks always start with anesthesia on any type of surgical procedure that most people never think about and most anesthesiologists don’t share all the risks I have found. I once had them memorized and corrected the one that was talking to BH.:rofl:

When do you see your doctor for the next appointment? It’s always easier to write down your list of questions and have someone with you that takes good notes. I always tell folks here not to take BH, because BH doesn’t even understand the answers that were written down. Slow you doc down, tell him to dumb it down as if he was speaking to a kindergartener unless you can understand the medical language like a handful of our members. There is absolutely no shame in telling them they’re speaking above your head. Doctors often forget we have no clue as to what they’re saying. They also hide behind their medical speak, they have a tough job. As a SW we often had to catch ourselves from speaking in what we called SW speak. It is a stress survival adaptation I believe. I like pictures myself. Latin was a thing of my childhood that I did not keep into adulthood.

I always tell folks not to shake their head in agreement as if they understand, I know it’s an issue with folks in the USA, so I presume it’s an issue world wide. A lot of people I know that were raised in another country do the same thing. If you don’t understand ask for clarification!

Another thing I’d suggest to you is thinking about what you would say to your best friend if they were in your shoes. It helps,to step outside of ourselves with something this important.

@Belka04 Another resource for you is the Brain Aneurysym Survivors Facebook site. It’s a closed group. I never posted anything there, but read a lot about the experiences of others. Just remember that we are all different and some things you see there may make you “go down a dark hole” if you know what I mean. But there were posts about flow diverters this morning. Also, you might check the Medtronics site for information on flow diverters. They make the one I have. I still feel great four days post operation. Some anxiety reactions but I expect those to settle down as long as I focus on positive thinking.

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@seniorlady @Belka04
It’s so nice to hear from you and that you are doing well.
I think I was a member of the Facebook group that you mentioned. If it is the same group, I actually left it because I didn’t like how it was moderated, maybe I should say, not being moderated.
As a former health care professional myself with more than 30 years of experience in several hospitals (I’m not a doctor) I found some posts really disturbing. That’s why I think we have to be careful about what source of information we get. I have found our group here being very professional and well moderated.
I also think it’s a good idea to go to the source, the manufacturer and read the information.
Being anxious about the procedure is a normal thing, but @Belka04 you have to remember that this is done to save lives. Trust me when I say that you don’t want to go through an aneurysm rupture.
Good luck with your decision.

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I agree that there are some folks on that FB site who are super anxious and post useless stuff. At the same time, many have answered legit questions with helpful information. I just felt posting on it was not a good idea for me. Our site here feels more private and secure. I still feel good after my procedure, so hoping for the best as recovery continues.

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All,

It’s good to know that what we’re doing here is appreciated. I have a couple of personal views:

  • Facebook has the disadvantage that all of your conversation about your health links to your identity, your friends, family, everything. Personally, I feel that in order to talk about my personal medical history – information that is essentially very private – I’d far rather do that without it being immediately linked to who I am, where I live and who all my family and friends are.
  • However, it is to be noted that this forum is open: anyone can read what we post on here. In fact, this is probably the main route people have for funding us. So the anonymity becomes more important, if you’d like to keep your private medical information private. It’s an interesting balance. The private messages on here are private, though the Modsupport staff can moderate private messages if people raise complaints with us.
  • My vision for this place, much as it is for any of the other rare disease forums run by Ben’s Friends is that this place is possibly the one place on the planet where you can be just you: no judgement, no hierarchy, just peer to peer support in a constructive environment. If we ever find we’re not achieving that, do let me know!

Equally, if you’ve signed up with a screen name that you feel gives away a bit too much of your identity, just let one of the moderators know and we can change it to something you’re more comfortable with.

Lots of love,

Richard

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A post was split to a new topic: Life expectancy after rupture

Hi oct20, thank you for sharing your story. I will definitely take the time to read about your experience with the ruptured aneurysm—it’s invaluable to hear from someone who’s been through it.

As for my situation, I’ve only had an MRI so far. My neurosurgeon has recommended an angiogram with contrast to get a clearer view of the aneurysm’s walls because it has developed an unusual shape, resembling a boot.

I’m really struggling with the decision, especially after my neurosurgeon shared the following information:

“The rupture risk is probably 0.5–1% per year.”
Activity limitations: “You don’t need to avoid activities, but you should avoid smoking and control your blood pressure.”
Treatment recommendation: “Coiling isn’t likely what I would suggest; it would be flow diversion. This treatment is permanent, and the aneurysm won’t ever come back once it resolves.”
Risk of treatment: “There is a 6–8% risk of complications with treatment—some serious, some quite minor. However, the vast majority of patients have positive outcomes with flow diversion in this region of the circulation.”

I find myself torn about whether to proceed with treatment, especially since the risks of the stent procedure seem greater than the annual rupture risk. See why it’s such a difficult decision to make?

Thank you for your support

Hi @Moltroub, thank you for your thoughtful message and for sharing your experiences. It’s always nice to hear from someone who has gone through or is going through similar challenges.
I ride a bicycle and cannot imagine myself on a motorcycle! :slight_smile:
I see my doctor on Monday, November 25, 2024. Thank you again for sharing your experience and practical tips. I will keep all of you updated after my appointment on Monday.

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@Belka04
I can definitely understand why this is difficult for you.

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Thank you for understanding! It means a lot to me!