Hi, I meant to ask about this in my previous posts. I'm 30 and had an AVM rupture and resection last year. I have an unruptured/untreated aneurysm that they think might have been caused by the AVM. They have addressed the possibility of it regressing spontaneously since the AVM was treated. I'm not holding my breath on that.
My doctor made me feel rather foolish for worrying about this aneurysm and they scheduled me for my follow up angio on 7/18. I canceled this due to cold feet about risks and radiation. I have yet to pick a new date. I'm just going crazy and feeling very hopeless.
My doctor told me that this could theoretically be treated but everything I read says that ophthalmic annies are hard to treat and could compromise vision. Does this mean that my doctor is not treating it because of that? Or are there other reasons? He said natural history studies indicate that an annie this size in that location carries a 0.02% risk per year. Does that sound right? Or was he just saying that because he knew treatment would be risky? I'm scared to ask him after a year has gone by.
:(
also, is there anyone on here that is around my age or younger that is also watching and waiting? Just curious...
I'm close to 50 and I'm waiting and watching 2 annies for now three years, one ophthalmic 3mm and another one 2mm in the center.
I live in France and my doctor just want me to watch them every 12-18 months. He did mention that they are more difficult to treat then some other annies! While another doctor in the US did not find them more difficult, he said that all are difficult.
Maybe I have them for a long time, I wish you courage too to live with this, sometimes it is very difficult for me.
Hi, so sorry I didn't see this reply right away. Thanks for your response. Mine was 2x1 mm (whatever that means) last summer. I don't know if it has grown or if it's more likely to grow in that location. I just have no idea. Of course, most people don't know about their aneurysms. We are in a very unique situation.... knowing about them yet still not treating them. It's scary even though I try to trust my doctor. It sounds like you are in good hands and I wish you courage as well! :)
hi, I am livign with a 3-4mm, we were watching and "living with" but I have had weird occcular auras and flashes of light and temporary blindspots in eye, so I am going to have an angio, never had one before, it is hard to know, and not stop living a full life. I was just wasting time on facebook and a bird flew into the window and hit the glass and I took this as a sign to look away from computer, and focus on the beauty of nature, have a good day, Ellie
Hi Laura
I’m 48, Living with 2 unruptured 5mm annies on the ophthalmic arteries , discovered now a year ago by “accident”.
I’ve seen several Drs in Switzerland, France and USA , all with different opinions, many to use PED, a few to clip, a few (inc Mayo) to monitor but do nothing unless they change.
For the moment I’ve decided to live with them and monitor them every 6 months. It hasn’t been easy but I’m ok with the decision today.
If youd like to chat more let me know!
Laura said:
Hello Eva
I'm close to 50 and I'm waiting and watching 2 annies for now three years, one ophthalmic 3mm and another one 2mm in the center.
I live in France and my doctor just want me to watch them every 12-18 months. He did mention that they are more difficult to treat then some other annies! While another doctor in the US did not find them more difficult, he said that all are difficult.
Maybe I have them for a long time, I wish you courage too to live with this, sometimes it is very difficult for me.
Since my message I've been successfully operated on the 2 mm center one which had grown up to more than 5 mm in one year. In France the check up is once a year.
The one on the ophthalmic artery is stable for now and it would need a stent if I were to operate, so they prefer to wait and watch.
I'm fine with is for now. But I have to say I was amazed by the operation and the way it goes, you feel nothing not even a head ache ! It gave me confidence to know there is a solution.
Are yours on the same side? It is good you are ok with monitoring. Every 6 months, that is reassuring. Is this what the Mayo clinic suggested also? An MRI every 6 months? It took me three years of living in total anxiety before I was able to accept them; and that's when they told me I have to operate!
Let me know how things go for you and if you need any information.
Since my message I've been successfully operated on the 2 mm center one which had grown up to more than 5 mm in one year. In France the check up is once a year.
The one on the ophthalmic artery is stable for now and it would need a stent if I were to operate, so they prefer to wait and watch.
I'm fine with is for now. But I have to say I was amazed by the operation and the way it goes, you feel nothing not even a head ache ! It gave me confidence to know there is a solution.
Are yours on the same side? It is good you are ok with monitoring. Every 6 months, that is reassuring. Is this what the Mayo clinic suggested also? An MRI every 6 months? It took me three years of living in total anxiety before I was able to accept them; and that's when they told me I have to operate!
Let me know how things go for you and if you need any information.
I had coiling done. I just read about PED. I have no idea how that works. Is it better than coiling? From what I just read it is for very large or open neck aneurysms.
Hi Laura, Im glad that your operation went well. Where /by whom did you have it done in France? I saw someone in Montpellier who suggested either stent (PED) or wait. Mayo said to wait, other drs to clip and some PED, so it all comes down to what they are comfortable with and what the patient is comfortable with I guess!
I have decided to monitor every 6 months. i had the 1 year MRI in March and there is no change to either aneurysm (they are both within the opthalmic artery, one on each side, about 4-5mm, irregular and wide necked.)
I have no symptoms and am having my vision checked by a neuroopthamologist regularly as well to see if there is any impact on the optic nerves, nothing yet. So next MRI in October....
Most say with my particular ones the risk of something happening during surgery is about the same as them rupturing, though post-effects of surgery are probable. I had a very difficult time living with it the first 9 months but am doing better now, working full time and living an active life, I hope to continue, just try not to think about it too much!
Good luck wiht your ongoing recovery and management of the other!
Laura said:
Hello Cathy,
Since my message I've been successfully operated on the 2 mm center one which had grown up to more than 5 mm in one year. In France the check up is once a year.
The one on the ophthalmic artery is stable for now and it would need a stent if I were to operate, so they prefer to wait and watch.
I'm fine with is for now. But I have to say I was amazed by the operation and the way it goes, you feel nothing not even a head ache ! It gave me confidence to know there is a solution.
Are yours on the same side? It is good you are ok with monitoring. Every 6 months, that is reassuring. Is this what the Mayo clinic suggested also? An MRI every 6 months? It took me three years of living in total anxiety before I was able to accept them; and that's when they told me I have to operate!
Let me know how things go for you and if you need any information.