I met with my neurosurgeon today for the first time. I have a 3-4 mm aneurysm on the ophthalmic artery close to the ICA. My mother survived a ruptured brain aneurysm at age 61; Aunt survived a rupture from one in her 40’s; Great Uncle suffered from one at age 40 and did not survive. My neurosurgeon said that “Based on the PHASE score the chance of mine ever rupturing is low.” However, the PHASE score does not take into consideration my families history.
The neurosurgeon said he can and will fix it, if I so desire. He says that he would not be fixing it for “health reasons” rather my “overall well-being.” The only option he recommends at this time is Pipeline or Stent or Flow Divertor (not sure the difference between these). This procedure would require 24 hours in the hospital, months of blood thinners, as well as aspirin for the rest of my life. I am 25 years old. I understand no one can tell me what I should do, but I would love to hear from someone who has had the procedure or who has become comfortable with the watch and wait. Thanks!
I am 40 , I think I became comfortable to watch, living regular life ( however it’s affecting my health : headeches , tiredness , but I think it would not be better with coil or stent in my case )after some time I adjusted the situation , you probably can get a second opinion just for your own confidence . I trust my neurosurgeon . But the only difference I don’t have family history of the aneurysm .
Of course it’s only you who can decide . Here we have some people with stents I hope they will share their experience . At this point it’s more about psychological comfort as I understood . The desicion will come …
I ruptured at the LICA bifurcation so not the same experience and I don’t have family hx. My neurosurgeon told us to call family members before I even left ICU. You can always ask for a second or third opinion if it will help ease your mind. I always appreciate a surgeon who doesn’t want to do surgery if there are other alternatives. Hang in there!
@CMartin - I had the Pipeline flow diverter placed back in July 2019. My neurosurgeon and I agreed that because of family history, it would be a good idea to treat it. I did not experience any adverse effects relative to pain or deficiencies. My 6 mo. angiogram is scheduled for early Jan and we are looking forward to seeing how the annie has either slowed fill or is gone. Hopefully, it is either/or and the reason being is that we initially discussed inserting two stents, if needed. However, the initial placement he only used one and during my 3 mo. MRA scan, it showed decreased fill, which is what we expected.
Based on the status of the annie in January it will determine if we will either insert a second stent or go with the option of clipping. I have other posts about my particular case strategy that will give you more in-depth on the choices we made. One thing that is important to know is that you and your neurosurgeon are a team and the time spent with your neurosurgeon is valuable. Be prepared with questions and ask for clarification. Again, you can look for my other posts to give you further details on my experience(s). I believe you will do great with whatever decision you make.
Don’t know where you live, but I would get a second opinion from Emory in Atlanta or the Mayo clinic. I don’t agree with him about blood thinners or aspirin for. The rest of your life. You need it fixed but the rest ???
@CMartin- Get a second opinion! Bottom line: Only way to know for sure is an angiogram. I also had a 3-4mm aneurysm on the ophthalmic artery. No known family history. 1st surgeon was unconcerned because it was under 5mm- put on wait and see. 2nd opinion noticed shadows on the scan. Given my age and other medical issues, he felt certain it was a risk. I agreed to angiogram. Turned out to be an ugly, unstable 4+. I had a successful pipeline in Oct 2018. Everyone’s situation/experience is different. There is nothing easy about the situation or the decisions we are faced with. You can only choose what feels right for you. I will keep positive thoughts for you.
After my Aneurysm was found on my internal carotid artery at my left ophthalmic artery, my brother got scanned. He had a small Aneurysm in the same place. His neurosurgeon told him that when Aneurysm is genetic the risk of rupturing at a smaller size is increased. My Aneurysm was repaired via endovascular procedure. 2 Pipeline Embolization Devices (PEDs) were used, at separate dates, to fix mine. My brother chose to have his clipped. Our Neurosurgeons have recommended that our descendants get scanned.
After a concussion, You are young and already having issues; combined with the stress of having medical problems.
I was seen and treated by an amazing Intravascular Radiologist. I am 5 months out from my last cerebral angiogram and.doing ok. However I do have some lingering issues. I would love to see some more support for those areas.
My annie was a right ophthalmic ICA 7mm treated with a pipeline stent, 2012. When they first found my aneurysm it was ‘inoperable’ as the flow diverter was not approved for use here in Australia at the time. Unable to treat with a normal stent as would block the ophthalmic artery and I was told not suitable for a clip (too difficult to get to). 5-6 years of just living with it and side effects.
The pipeline worked a treat! It did take 1-2 years to fully resolve. Over the course of all this time multiple MRI’s, CT’s and 4 angio’s. Aspirin now for the rest of my life.
The years it went untreated the doc’s tell you not to worry, the chances it will rupture are unlikely and all these facts and figures. Doctors say you can live happily with an aneurysm and not be stressed by it. If you can do that you are an amazing person.
As a person who does worry I was so happy to have things fixed. Now only need an MRI every two years and am guessing that will eventually end too.
Best of luck C.
Thanks for your reply. My aneurysm is located near the ophthalmic artery as well. Other than your brother, are you aware of any more family members that have been affected? I am torn between surgery and just watching it. Since I am only 25, I figure my body would recover much faster from surgery than if I waited another 20 years for if/when the surgeon “recommended” surgery. How big was your and your brothers aneurysm??
Thank you for your reply! I agree that it is tough living with one. My surgeon said the risk of complications from the surgery was at 5% and my risk of rupture (based of Phase score) is less than that, but he understood that no statistic could ease my mind if I had relatives that had suffered from ruptures. The decision is all mine. I worry about the aspirin for the rest of my life. Did you have any complications from your pipeline?
Hey C, had no complications from the pipeline at all. The first couple of months after the operation was on stronger blood thinners. Was in hospital three days. Maybe headaches and migraines but was expecting that, also teeth pain but unsure if that was related. Fine with the mini aspirin every day. Do not feel any side effects. Am a person who tries to have minimum tablets.
The aneurysm was causing symptoms, I was loosing my eyesight, so the pipeline has made a huge difference and am really grateful.
I had a 4-5mm aneurysm - it was found in 1999. I watched and waited until 2014, when I was in my late 50’s and I was getting worse headaches that I thought were caused by it. (5+ years later, I think that I was right about the nature of the pain.) I found the team at Johns Hopkins and met with them. Honestly, I think that they only chose to treat mine in hopes that my survival would boost their percentages. There was one surgeon who really didn’t want me to do it, but he didn’t want to contradict his boss. That is my assessment.
The first year afterward was bad and scary. They don’t do any followup to speak of, only the angiograms, they don’t care about neurological episodes or damage.
The second year was even worse that the first. Dr. Coon was genuinely concerned, he said people are supposed to feel better the second year.
They focus on preventing blood clots, that seems to be the only response they have. The first months were horrible, leaning against a door to open it would bruise my arm.
So, to keep my response short - I will say in 2019, if I could go back and do it over again, I would not. I am forever on low-dose aspirin - only because of the blood flow diverter in my cerebral artery - and have too many side-effects to dwell on. It makes me sad.
If I were in my 20’s today, I would stay away from neurosurgeons until I reached nearly 60 years. That part I did right. The rupture and death occurrence still spikes by the age of 60, so you should think about getting treatment.
Watch it with MRI-As. Always insist on having actual physical copies of the scans. Keep ALL OF YOUR RECORDS. I moved to different states. Doctors thought I was a crazy liar - until I showed them the 1999 MRI-A report followed by the cerebro-angiogram results. It really took seeing the angio to prove to them I wasn’t lying about having an aneurysm. Having all these memories makes me angry.
My aneurysm was on the cerebral artery, in a place called the cavernous carotid sinus. It is a place where open surgery was not a good option.
CMartin, I truly understand your concern for using aspirin daily. Everything I’ve read says it can cause hemorrhagic strokes, though apparently the risk is slight per some of the information. Personally, my neurosurgeon took me off an aspirin regiment, my neurologist limited me on use of NSAIDs after my rupture. I know a lot of folks with stents etc for aneurysms say they are on a lifetime regiment of aspirin. I’m no medical professional. But I did find this article https://www.fda.gov/drugs/questions-answers/aspirin-questions-and-answers#information. I’d ask the doctor why you need to be on aspirin and if it’s possible to be on the lowest dose ie 81 mg and I’d probably ask if six months would be fine. If you’re uncomfortable taking aspirin for the next 60 years or so, tell your doctor. Also ask your doctor what damage can be done to your healthy normal heart on aspirin for the long term. Do your research and ask informed questions
I appreciate you sharing what happened to you with me. I am sorry you had to go through all that - it sounds like a nightmare that won’t end! It saddens me that you feel the medical team at John Hopkins only wanted to treat you to boost their percentages, but it doesn’t surprise me. My neurosurgeon said that any surgeon who recommended surgery was more than likely only interested in doing a case study on me since I am so young. I really feel at a loss. I didn’t like to hear that. Did your aneurysm show any growth throughout the years?
Wow. I am glad the pipeline worked well for you. I don’t like taking medication if I don’t have to, and I have mixed emotions about opting for a procedure that requires aspirin everyday for the rest of my life. Did you have issues seeing in both eyes or only one? I have extremely poor vision without my contacts. Actually, even with contacts I have moments where my vision is bad but I thought it was just something in my eye because it goes away.
Hi C,
It is a case of weighing up what is best and that is so difficult when so much is unknown. For myself, I choose to trust the advice I received from my doctors as always felt they have best interests in mind. My stent is in the carotid artery so the aspirin for the rest of my life is just how it is. Really important to stop a clot forming in the stent. Believe side effects from aspirin are super low and unlikely.
My eyesight problems were from the annie pressing into the optic nerve where they cross over and join. So it was sight in general and did come and go. Some symptoms a lot like migraine aura. Some trailing of vision, white spots flashing, visual snow in the sky, heatwave like vision, colored spots floating and it was as if the color intensity had been turned up to the max. Then also palinopsia and a type of Charles Bonnet syndrome. Stopped driving, going out at night and working. I think I had the annie for 5-6 years before the symptoms really were bad. Now so much better, still not 100% but better.
I had a Flow Diverter placed for a 6.5mm ICA / Ophthalmic aneurysm 6 months ago. Ophthalmic Artery arose from the aneurysm sac. Aneurysm was just starting to touch the optic nerve. It was all fairly uneventful, recovery was easy, 3 days in hospital, 2 weeks off work although probably could’ve gone back after 1 week. I had CT at 1 month, MRI at 3 months and recently had 6 month angiogram which confirmed that the aneurysm has now collapsed (gone). Took Ticagrelor for 6 months, was only meant to be 3 but I had visual symptoms on stopping - seeing fireflies and black patches in one eye which resolved on re-starting Ticagrelor. Have now been off Ticagrelor for 3 weeks with no issues. Will take 2 x 100mg Asprin daily until May next year (12 months) when I will have an MRI and then hopefully will cease that too. Personally I’m happy I had the procedure, the hardest part was being on the steroids for a week or so after the procedure that prevent brain inflammation purely because I couldn’t sleep and was hyped up! Good luck! I know I’d had mine for at least 5 years as I’d had an MRI for funny feelings in my eye where it was confirmed later as present on that scan but it wasn’t reported on at the time, it was about 4.5mm at that point.