Newly diagnosed and struggling with treatment choices

I am recently diagnosed with an 8+ mm carotid opthalmic aneurysm; no symptoms, it was an incidental finding and probably has been there for years. Also have a smaller mirror anny on the other side. I'm nearly 70 but in good health and have been offered coil embolization on the larger anny.

Fortunately I live near a very good treatment center and have a physician friend who shares information and helps my husband and me think about weighing risk - the risk of a procedure now vs risk of rupture in the future. I think I'm inclined to take the risk now - it's difficult to imagine going through every day for 15+ yrs with the fear of imminent rupture. But my friend suggests I wait a bit and see if I become more comfortable with uncertainty.

Treatment choices are difficult when they involve mathematical comparison of things that are not directly comparable - and in this case the choice is made under the gun of possibly imminent rupture. So yes, I am feeling very stressed! I'm grateful for this forum; it helps to know that there are many people facing similar decisions who are encouraging and supporting one another.

Ah Rose....this has got to be tough...but you must do what is right for YOU...and I will send a prayer right now out to you...~ Colleen

I just had my follow-up appointment at Johns Hopkins Hospital today. I had a Pipeline device placed for a 5mm ophthalmic aneurysm on I/9/2013. The whole experience was very frightening, but I did great. The worst part for me was all the worrying I did before the procedure! I wish you all the best as you decide what to do. Rose

Thank you all for your thoughts. Rose, were you happy w your choice of Johns Hopkins? I am hoping to have a consultation there as I move forward - it is such a highly regarded facility.

Hello Rose

I understand your dilemma. Some people are much better at living with uncertainty than others and only you can decide what would be best for you. Everyone else may have a view, but only you can weigh up the risks and decide what would be best. A short wait (? 6 months) and a rescan to see if it is changing in size may help the decision making. If it is getting bigger it will be so much easier to decide!

I didn't really go through the same thing as I am that bit younger, so the risks of intervention are less, and as my aneurysm was rapidly enlarging and I had progressively worsening symptoms that were stopping me functioning in life. Intervention was necessary and my only hope of returning to active life.

Judith

You do understand exactly my situation. I too have thought of a rescan at 6 mo rather than a year. I will see what the doctor I'm seeing soon will have to say.

Rose

Hi Rose,

I agree with everyone else that you have to do what is right for you. I had a 5mm clipped this past November and I had no other choice as it had two other weakened edges on it. I'm glad I had it taken care of when I did. Mine was found incidentally as well last March when I had an MRI for something else. The past few weeks before the clipping I was starting to have symptoms. It helps to have confidence in your surgeon as well as the hospital and staff. I had mine done at Jefferson in Philadelphia and I had no deficits afterwards. I feel very blessed and am praying for blessings for you. Good luck to you Rose in whatever you decide to do. Take care,

Bonnie

I am VERY happy I went to Johns Hopkins. Dr. Alex Coon is my physician. He has done over 117 Pipeline procedures. And, I am sure the physicians there could do whatever they and you determine is best for you. Let me know if you need any help coming to Baltimore. Where do you live? Rose

I am in a similar situation. My aneurysm was coiled but has now compacted. I am being given the choice to have another procedure or watch it. They are now steering me toward watching it after telling me 3 months ago I should have another procedure. So I am getting another opinion.

As far as wondering what can happen, I completely understand. Mine ruptured once and I know a second rupture will likely be much worse. But I have come to the realization that there is nothing I can do right now and I don't really let it bother me any more. But everyone is different and constant stress is not good for you. Have you looked into stress management? Medication or any other form. It could help you a great deal in the weeks and months ahead.

I was clipped in an emergency state, plus coiling wasn't yet being done in the States in 97 so I really had no choices to make (which for me was good--and I didn't have to wait and watch which I think would've driven me mad) , yet in 2006 I had an SAH/coma/coiling/shunt/ and quite honestly I knew I had symptoms of another aneurysm yet being too stubborn and without insurance I did nothing until I had no choices whatsoever...then three years post coiling the coils failed, but this time I had a choice: coiling or clipping, so I chose clipping as I wanted that aneurysm out of my life forever! For me, it was the best bet. Now am awaiting an appt. to consult with my NeuroSurgeon in early March, as I have been having some problems (I think its a problem at least) in that my right eye will remain dialated whereas my left eye reacts normally. to light. .I think my biggest fear is another coil or worse, the wait and watch story. Or maybe I'm completely wrong and its nothing! ANyhow, my prayers are with you, and Tony I'm glad to hear you're getting a 2nd opinion...Peace, Janet

Good luck w your neurosurgeon consult; it's good you have choices now, as you're definitely better off being seen sooner rather than later.

I have tried yoga and meditation; hadn't thought of medication, which makes a lot of sense. I'm working to keep my blood pressure down and it's almost amusing how worrying about your blood pressure almost inevitably makes it higher.

Hi Rose, I'm 65 and was diagnosed with a 6mm carotid opthalmic aneurysm in November, 2012; it was found incidental. I have had no symptoms, no history of annies on either side of my family. The Dr. said I probably had it all my life.

The last two Drs. I've seen offered the coiling and both said it was an elective procedure. I am in no hurry as I am going on my 4 th opinion in 2 weeks and then I'll go for one more. I understand there is a sort of glue, I think it is called Onyx that has been used in some cases. So I want to find out about that before I decide.

Sometimes I do get very anxious and want to run away from my annie but of course I can't. I am just trying to stay as healthy as I can and keep my BP low. And I find myself praying an awful lot that God will lead me to the right decision.

It sounds like we are pretty much in the same boat, Joanna. Do any of your doctors suggest watch & wait, and if so, do they suggest a timetable?

The first Neuro I saw scared me to death and said I needed to take care of it. The Dr. in Nashville and the one in Atlanta said I had a 1 to 2% chance that it would rupture vs a 3 to 4% complications from surgery. But given my age and my health it would better to do it sooner than later because the % of rupture goes up each year. I have an appt. at Mayo with a Dr. Hanel March 5th and I will ask his opinion.

When I was diagnosed with this Annie in November, the radioligist told me it had appeared on a MRI I had had in Jan. of 2009 when I had my TMJ screened. No one ever tod me about it and my husband that year flew all the way to Alaska and been back and forth traveling up until 11/2012. Everyone says how lucky I am that it was found early but it sure has put a damper on our vacations. The Neuro said it has grown slightly since 2009, whatever that means. I really wish I never knew I had it, but it has slowed me down a bit and I do stop and smell the roses now, if you know what I mean.

I definitely know what you mean about smelling the roses. I've only known for 3 wks and have already begun spending more time talking to my grown children and expressing my feelings more. Not to mention going out to dinner and buying clothes I would have denied myself earlier :)

When I was first diagnosed, I was so anxious and scared and thought I needed to do something right away. The more I became informed the less anxious I became. Not all aneurysms rupture. My neighbor has one(6mm) they have been watching for 8 years. She is 70 and is not a candidate for coiling because she had a large annie to rupture on her when she was 55. That was 15 years ago . She had no complications after her surgery whatsoever.

In a way we are blessed, at least we have the time to choose which treatment, if any, what Dr., what hospital we want caring for us.