Looking for others with unruptured opthalmic artery aneurysms?

are any of you out there with such aneurysms? if yes would like very much to share and communicate

thanks
Cathy

I don’t know much about this stuff but I have bilateral paraopthalmic aneurysms. Both unruptured and about 2-3 mm.

I had a giant 3 cm unruptured PCOM aneurysm attached to the optic nerve that had to be unroofed (scraped free) during clipping. It resulted in 3rd nerve palsy…lazy eye, took two months before eyes could focus together after daily eye patch wear for strengthening. I am 6 months post op and vision is great, still have a little numbness in and around eye and scalp on that side. Eye movement good but sensitive to extreme looking up and to the left.

Yes, Cathy -- I have two opthalmic aneurysms, both on right side, both unruptured, both stented three years ago, both fine. Absolutely no problems.

Neuro doc says they'll probably always look funny -- and that's just the way it is. And I'm fine with that. I'll take funny looking over rupture any day :)!!!!!!!!!!!

That is where mine was located also. It did not rupture and was coiled in Feb. 2010. I was told that losing sight in that eye was possible but I didn't have any problems. MRA's show that everything is fine.

Glad to hear that you are well!

Were they in the ICA or actually involving the Ophalmic artery? (the arteries in both of mine come out of the aneurysm sacs..) Did they occlude your opthalmic artery or is it still open? What kind of stent did they use, was it a flow diverter and if yes what kind?



Melanie Ormand said:

Yes, Cathy -- I have two opthalmic aneurysms, both on right side, both unruptured, both stented three years ago, both fine. Absolutely no problems.

Neuro doc says they'll probably always look funny -- and that's just the way it is. And I'm fine with that. I'll take funny looking over rupture any day :)!!!!!!!!!!!


Hi Cindy, glad to hear that you are well. Its good to have encouraging news on this site.

Were they in the ICA at the entrance to the Opthamic artery, or actually involving the Ophalmic artery? (the arteries in both of mine come out of the aneurysm sacs...) You had on both left and right sides? How big were they? Did they occlude your opthalmic artery or is it still open?

How long between two surgeries did you have to wait?

Did you suffer from any post-operation side effects, head ache, vision issues, fatigue etc ? How long did it last?

Sorry for all the questions but I know no one who has had these personally, and doctors only tell you so much.


Cindy Hamilton said:

That is where mine was located also. It did not rupture and was coiled in Feb. 2010. I was told that losing sight in that eye was possible but I didn't have any problems. MRA's show that everything is fine.


Are you considering treatment Robsie? Mine are 5 cm each and the opthalmic arteries come out of the sac of the aneurysm, not easy ....
Robsie7879 said:

I don't know much about this stuff but I have bilateral paraopthalmic aneurysms. Both unruptured and about 2-3 mm.

I have one 5mm aneurysm on my left ICA, and my ophthalmic artery comes from the side of it. I was told it couldn’t be coiled or I would lose the eye. Clipping was the only fix, but it was riskier than watching and waiting.

About two years after discovery, I was offered a PED pipeline embolization device. It didn’t seem logical that the PED could block blood flow to the Annie while allowing it to get to the OA, but that’s what the doctor told me. After a few months of stewing about it and reading the minimal amount of info I could find on the topic, I decided to go ahead.

My PED procedure was in January. I spent one night in the ICU and went home. No ill effects whatsoever, not even a headache, which is fairly common. I am to have a follow-up angiogram after 6 months (my Annie-versary is coming up soon) to see if we have truly starved it into oblivion. If so, I may be permitted to discontinue the blood thinners.

My goodness, I'm amazed to find there are other people with an aneurysm at the entrance to their ophthalmic arteries! Robsie has two! And I thought I was special. It's very encouraging to hear how well everyone is doing.

I was just diagnosed with a 3 mm on the ophthalmic. Waiting to see neurologist. Any advice is welcome.

It seems like all of you have had yours fixed, mine were diagnosed about 2yrs ago and they are stiill the same size, 1 6mm and 2- 2mm. The surgeon said it would be bad if he had to cut the one on my left side open as that side deals with all the activities of the brain and it can't be coiled or stinted as it is like a 3 sided vessel, whatever that is called. I try not to think about it too much and it brings my blood pressure up and that is not good. Anyone had any for years and not touched??


Linda, if the PED hadn't come along, we would just be watching mine for life. My neurosurgeon always emphasized the low risk of aneurysms smaller than 1 CM being about 1% per year. They keep inventing new endovascular treatments. Maybe something will come along for you.

linda leathers said:

It seems like all of you have had yours fixed, mine were diagnosed about 2yrs ago and they are stiill the same size, 1 6mm and 2- 2mm. The surgeon said it would be bad if he had to cut the one on my left side open as that side deals with all the activities of the brain and it can't be coiled or stinted as it is like a 3 sided vessel, whatever that is called. I try not to think about it too much and it brings my blood pressure up and that is not good. Anyone had any for years and not touched??

Hi Cathy… I am waiting for clipping surgery for my 3x3mm Annie, it is in the left ICA very close behind my eye, it actually States on my Quotation my Op is: Craniotomy for Aneurysm with Orbitotomy left ICA… Unsure as to what this procedure will involve but guessing with the word ‘Orbitotomy’ it has something to do with the eye… I also had a 7mm behind the right eye fixed 2yrs ago with a PED…

How did it go with the PED? Any issues? Why aren’t they treating with PED this time , do you know?

Hi Cathy… No real problems with PED but will be on blood thinners for the rest of my life, every time they tried to take me off, I’d have visual effects… This time my only choice is a clipping because when they did my first angiogram they dissected my carotid artery & had to put a double stent in my neck, when that healed I then went back in & had the PED but they found i have Fibromuscular dysplasia & it is to risky for me to have anymore angiograms…
If I didn’t have Fibromuscular dysplasia I would definitely have another PED…

Good luck to you!!!

I had a 7mm berry shaped Annie along the branch of the carodid and opthalmic on my right eye. I had had double vision since I was 16 and docs always chalked it up to my lazy eye surgery when I was 9. Had it pipelined at Hopkins in July of '12. Headaches and migraines for about a year, which have lessened and almost disappeared entirely. I tend to think its bad while it shrinks. Double vision entirely gone now and liking that my brain is back in pre Annie working order… I can think quickly and even have as my husband calls it, my searing sense of wit back. I would do it again if needed, though I’ve met many clippers and coilers since. All have their upsides and downsides.

Thanks Tara, did Gailloud do your you surgery? Did you have coils as well or only the PED? Did they occlude the opthalmic artery and you got collateral blood flow to the eye from other sources? We’re headaches daily and how did you deal with them?

No, Dr. Alexander Coon did the surgery and I believe he did quite a few surgeries on others here at BAF. The aneurysm occluded over time but the artery itself was never fully blocked and didn’t require blood from other sources. No coils, just the PED.



The headaches were very painful and problematic as I am a teacher. For the first month I was on painkillers, oxy. Following what I would term an almost addiction created unknowingly by my husband who preemptivly gave me the pills so I would never be in pain, I was blissfully drugged, but it was very difficult to go off of them as my headaches were ridiculous. I found myself back at work 2 months after surgery with daily migraines caused by my own voice… Teaching is a loud profession. I found a good neurologist, one that helped find med’s that worked for me. I tried gabapentin and lyrica to no avail. Nortriptyline and anti seizure medications really helped. I also found an SOT chiropractor that really helped, and ice on the back of my neck was a godsend, as was imotrex when things got really bad. You will find a mix of what works for you, we all do over time. My go to for bad migraines was an imotrex (50 mg), 2 Benadryl, a coke, and a nap, then another imotrex 20 mins in. Weather changes really hurt, something to do with the pressure, especially when the barometer was falling. It was about 9 months of bad headaches and lots of naps. After the first 9 months, which coincidentally lined up with summer break during which I rested and slept, and the angiogram showed only a wisp of blood in the front of the now fully occluded Annie, the headaches lessened and I was able to function better. Knowing what I do now, I’d still do the same operation because I have few headaches now (maybe 1-2 a month, easily kicked with Ibprofin), my brain feels like it did 20 years ago, and my double vision is gone.



As for doing things differently, I’d not take oxy since I truly feel it delayed healing. I’d come up with a good Migraine plan ahead of time and know that it might need to be tweaked, and I wouldn’t have a mind block against anti depressants which really did help in the end. I’d also kill caffeine, find a good accupunturist or dry needling expert and chiro, stock up on ice packs and microwave heating packs, avoid Tylenol and IBprofin except when really needed, drink more water and be easier on myself, and what I can do for the first year or two following. I’d drop anything non-essential to my immediate job ( ie, I am the queen of after school activities, clubs, and extracurricular things… Felt guilty as all hell not being able to do what I usually did, better to bail out ahead of time knowing, less guilt). I’d also have my husband read this post so he knows what he’s in for. Ignorance was not bliss, and after couples therapy and the almost destruction of our marriage, I’m very happy to say we will be celebrating our 20th anniversary in August. No one spoke to my husband about how stressful this would all be and how much weight would be on his shoulders, especially since we had a two year old at the time of surgery.



I really had four options open to me… Watch and wait (was in pain, couldn’t do it), coiling (didn’t want to have to be recoiled), clipping (thought it was too invasive) or pipeline (bingo). Wanted to get back in the classroom as soon as possible, so that was my choice… And it was a good one, but I wish the surgeons painted a fuller picture of what it could be like. I remember them saying you’ll be back to work in as little as 3 weeks. Not that that couldn’t have happened, different people heal differently. I would say think about a year recovery, two for optimum feeling like you again Brian power. But clipping, same thing as far as those I have met that have had it, and they still battle mad itching, headaches, and weather related head pain. Coilers heal faster than what I did from those I’ve met that were coiled, but one of my friends already had to be recoiled, so yeah, there’s that, but another has had the same coils fro 20 years with no issues. It’s a crap shoot. You need to figure out your own risk advesion and simply choose what’s best for you. Once you choose, do not allow yourself to second guess. It’s your decision, stand by it. But do yourself a favor and create a pain plan with your primary or neurologist ahead of time.