Good afternoon,
I am feeling a little down and frustrated. I was diagnosed with Fibromuscular Dysplasia and a 6 mm Opthalmic Artery aneurysm in 2017. My Neurosurgeon at the time, recommended and placed a Pipeline Embolization Device.
After follow up testing, the aneurysm was slightly smaller but did not occlude. I was not happy with the doctor and 18 months later, I moved my care to the University of Michigan and another PED was recommended and placed in December 2018. I just had my follow-up angiogram for the 2nd PED and again the aneurysm has not occluded and is only slightly smaller.
The neurosurgeon has recommended waiting 6 months and placing a 3rd PED if it has not occluded. In our appointments, he had indicated that he would not have opted for the PED initially, but is now locked into that treatment plan. He would have performed a coiling and stent. I am emotionally and financially defeated. Has anyone had a similar experience? The aneurysm is not that large but they recommend it be treated. Iām wondering if there is something else they can do. I am at one of the best hospitals and I do like my neurosurgeon but I wonder if I should seek another opinion.
Ms. Sharon, having an aneurysm that is shrinking is a good thing. Having to go through procedures to fix it is irritating and anxiety causing, to say the least. In my experience and readings, doctors do what theyāre most comfortable withā¦I had one lady, canāt remember if she was a PA or NP that worked with a surgeon in TN. We met on Lobby Day and shared a taxi. She said her surgeon wouldāve treated my rupture differently. I told her I was still alive and capable so Iām very comfortable in how my surgeon is treating me. I trust her so much that as we are looking to move after retirement, getting to her is a primary consideration. If you trust your surgeon, stick with him. Never undervalue that feeling of trust.
*I feel a second opinion is also good having two doctors. They see things different. I am so sorry your going through all this stress. I will be staying prayer for right way to go. Good wishes!
Thank you so much. I try to be upbeat but sometimes I struggle with the frustration and discomfort. Every time they poke around I struggle with pain and headaches for weeks and then I wait , only to find out itās still there. Seems like they should try something else after 3 years.
Thanks and have a great day.
Sharon
Thank you for your prayers. I have been thinking the same thing. I just donāt know where to go. Cleveland clinic, Mayo Clinic , another local hospital
@sharon5 - hope you are feeling better today. I can relate to the option of doing multiple PEDs, but that was the plan upfront before my initial procedure. What I donāt understand is why the doctor āis locked into that treatment planā. My doc and I initially discussed that coiling and stent was not an option because if he had used coils in my annie which has a unique shape and wide neck that is located oddly on the ophthalmic artery, there was a high risk of the coils falling out and moving that could cause a stroke. Next, we looked at the options of clipping and PED, clipping was ātabledā at the time because I was on Plavix for a heart stent and that would not have been favorable for a clipping, at that time.
We decided PED would be the better option, at that time for two reasons, in this order: 1) it would take the pressure off the annie by slowing down the fill and divert the blood flow elsewhere, 2) it will allow us the time needed for me to officially be off the Plavix in the event the annie does not slow down and we decide to exercise the option of clipping. However, we did have a caveat that during the first PED placement, there was a possibility he would place 2 PEDs, if necessary. He only needed to use one as it did what he/we was expecting - immediately slow fill and divert. This also included before exercising the option of clipping we would do a 2nd PED, depending.
In January, I am scheduled for another angiogram that will determine our next steps of either a 2nd PED or the clipping to get it over with. One of his primary concerns for the clipping is to determine if the collateral arteries are/have been/will kick in blood flow for that artery as we do not want to risk potential vision issues or worse, blindness; due to the lack of blood flow in that artery from clipping. He believe right now based on the MRA we did this past Monday that collateral arteries are kicking in but the angiogram in January will confirm that.
Saying all of this to give you some perspective that the PED is not necessarily a failure. Unless there are other factors at risk he has not clearly explained to you such as: why you were not initially a candidate for coils and at this point clipping? I would meet with him and have him to go through the images and be prepared with questions to get a better understanding on expectations and outcomes. Try to relax and think good thoughts because stress can cause discomfort and headaches as well. We are here for you and keep us posted.
ETA: Forgot to mention, my PED is not placed fully across my annie, which is why there is still slowed fill in the annie. Again, part of testing the collateral arteries to see if they are kicking in that blood flow to the ophthalmic artery.
Wow guys! I thought I was the only one! Iām about to go in for my 4th stent next month. My Annie is on my right ICA and my ophthalmic artery is coming out of the top of my Annie. So vision loss has been a major concern. Over the past 2 years Iāve had 2 pipeline surgeryās and 6 angiograms. He placed 2 right on top of the other initially- we waited 6 months taking plavix and f/u angio showed minimal/ no change.
Off the plavix for 6 months - minimal change- so 3 rd was placed. I have had 2 angios the past 6 month - it is about half as big as it was in the beginning. So time for another - I asked him once - how many can I have? He has 1 patient with 9! He can only place one at a time now. There was no other option than stenting due to ophthalmic artery and wide base.
Financially it sucks - but on the bright side , Iām alive and I no longer have headaches !!
Diane
Hi @dbarnp - glad to hear your annie is reducing in size and headaches have subsided. Your annie is uniquely located on your opthalmic artery like mine. I realize getting the results we want from the stent(s) for our unique situation will take some time but you are hanging in there and that is very inspiring for me. I will keep you in prayer that the next stent will do the trick. Please keep us updated.
It is nice to know there are others out there. I called Mayo and told them my history. They scheduled an appointment for me on October 30. Iām not sure if this is the right move or not but at least I will have another opinion from someone. You seem to have a doctor that has explained the location and problem to you much more than mine . Mine has not. All Iāve gotten is Iām sorry we donāt know why and stay away from cigarette smoke lol
Hi,
I also had a right ICA ophthalmic annie with the ophthalmic artery coming out of the aneurysm. It was wide necked 7mm when at its largest. It was such a long journey, with symptoms starting in 2003 the diagnosis in 2007, it being inoperable at the time. I had so many problems with my eyesight. In 2012 they used a pipeline stent.
If you are having this treatment, please be patient, mine took a year and a half almost two years to fully occlude. Another couple of years for my eyesight to get somewhat better although not 100%. So consider myself super lucky. I still have migraine, left sided parathesia and some eyesight symptoms but just see it as my new normal.
Early on a neuro-ophthalmic consultant said: āmost people just get used to itā. Meaning seeing colored spots and snow in the sky and wavy lines everywhere. My jaw dropped. But he is right I am used to it now. Without the worry of the annie itās o.k.
I had my large 16mm, 9mm wide neck behind my eye done in 2015 at Massachusetts General Hospital, Boston, with Dr. Aman Patel and his team. Upcoming Angiogram hopefully will show full closure this time, but vision returned and very lucky i know.