Hi.
My name is Tina, and I recently discovered by accident via CT scan for something else that I have an aneurysm. Angiogram later noted it is a left paraclinoid internal carotid artery annie that is 4.5 mm. Please forgive me if I write that all wrong; this is all new to me. My surgeon said it is small, directly behind my left eye, and that the chances of it rupturing are low. He also noted that if I were to opt for surgery, given its very wide neck, he would recommend a pipeline procedure, because a coil would not stay in place given the wide neck. My understanding is this procedure is relatively new, and I donāt know enough about it to make a thoughtful decision. He said we could just monitor it, but I saw on the news the other day a professional baseball pitcher whose aneurysm ruptured, and he was in critical care. It frightened me, and I donāt want that to happen to me. I am 46. My surgeon said it could grow, or it could remain the same size. I donāt know what to doā¦the thought of it in my head terrifies me, but the thought of operating on it scares me, too. I am hoping someone here can help me. At any rate, I do take solace in knowing I am not alone. If anyone can provide me with your insight, I sure would appreciate it. Thanksā¦
Hello Tina,
I saw the same thing about the White Sox Pitcher who had the rupture. My mom had a rupture and I can tell you that you would much rather have operation before there is a rupture. The bleeding on her brain made the situation much more critical and her recovery was much longer. However, now that your doctor knows about it maybe he will recommend getting scans every 6 months or so just to make sure it hasnāt changed. If thought they should operate they would get that process moving right away!
Hey Tina,
āā¦the thought of it in my head terrifies meā¦ā that statement is 100% understandable, it sure as hell was for me. Anything happening within the skull is of a concern. I think comparing our situation with a professional sportsman, who is exerting himself to an extreme each time he throws a ball may not be a good comparison but nonetheless, still a concern.
My first question is of your surgeon, how long is he suggesting monitoring it for? a short period to see any change could be an option. In āveryā general terms an annie under 8mm is considered small and at minimal risk of bursting. Iām not sure of you understanding of an annie, but if you think of a rubber tyre tube, with a bubble out the side of it, that bubble is the annie. They can fill that bubble with a coil so that the pressure on the wall of the bubble is supported and this means less likelihood of it bursting or they can place a tube in the vein so that the blood doesnāt flow into the annie, sort of reinforcing the vein. Again this is a REAL basic of what the options you have been given are. Having a wide neck can mean that a coil may not stay in place or the neck could expand further making the coil useless or at risk of movement.
In all honesty, if the surgeon is recommending a specific course of action Iād be taking his advice. He would have considered options available are and recommend the best option.
Merl from the Moderator Support Team
I donāt want to disagree with Merl, because he probably has better information than I do. However, my wifeās aneurysm team said her ruptured annie was large at 6mm and that most aneurysms they saw were smaller. I think one must rely on the doctorsā recommendations regardless of size. If you are not sure about it, try to get a second opinion. Maybe it also makes a difference where the aneurysm is.
Thank you for your reply; it is much appreciated. I read, and could be wrong, that the Pipeline procedure was approved by the FDA in 2011? It just seemed so new, and I didnāt know how safe it was in overall studies. My surgeon is the the director of stroke services, but when I realized i forgot to ask how many pipeline procedures in particular he performed, his assistant told me 22. That didnāt seem very high to me, especially when I read from others here that surgeons performing this have to do at least 5 or 10 before they can do it on their own. I live in the greater Seattle area, and I know there are amazing docs here. I just donāt know if 22 procedures is a high number or notā¦ he specifically noted I could monitor and wait 6 months or elect to have the procedure done. I did not sense an urgency; it is just anxiety on my part. My primary care doctor told me there was a 1% chance of it rupturing each year, and then she noted if it was her, she just wouldnāt want to be that 1% person.
Thank you, Merl, for your reply. My surgeon said that there was a time when 8mm was considered large and recommend surgery, but that now even 6mm is a consideration because the technology has advanced to the point where surgeries are less risky (please note those were not his exact wordsāI cannot recall his actual words). He really did emphasize that mine posed a 1% chance of rupture each year, but that the decision was mine to make. I even asked him point blank for what he thought I should do. Based on the angiogram, he noted pipeline was my best option, because my neck on my aneurysm was too wide. Pipeline just hasnāt been around that long (my apologies if I read online bad information from sites), so I wasnāt sure how reliable the mesh is. Could it move? Can the material it is made of erode over time? If something happens, can it be taken out or replaced? I think he said it is made of nickel and titanium. I have tried to read as much as possible on the studies done since it has been availableā¦lot of positive things, but it just seems so new to meā¦
Thank you for your reply. I am considering a second opinion, but it seems hard to figure out who to see. I wish there was something out there that could let me know who has done many of these procedures and what t h.geir success rate was. My doc hasnāt specified one way or the other as to what to do. But he did tell me I can take some time to make a decision, so I donāt sense an urgency. The urgency really is with me trying to process all this. It is directly behind my left eye, and is next to my optic nerve.
Kind of a nice article.
You are correct @ADRauch All annies are not the same Even the most common which is a Posterior communicating aneurysms, can be divided into the following two subcategories:
(1) aneurysms that project laterally and below the tentorial incisura and cause oculomotor nerve compression where the nerve enters the dura at the tentorial edge
(2) aneurysms that project laterally above the tentorium.
While the first is a fairly straight forward surgery the second is very difficult. A 6mm annie can becomes very difficult to dissect because of the fourth nerve, which runs in the fold of the tentorium. Given that only 1 in 100 annies ever rupture, sometimes it is better to watch and wait unless its growing or changing.
TJ
She needs to consider the much higher chance of complications from surgery. The morbidity and mortality rate related to the neurosurgical clipping of an incidental cerebral aneurysm is between 5% and 10%. I wouldnāt want to be part of that group eitherā¦
TJ
TJāthank you so much for this information! Would you happen to know what the complication/morbidity rate is for a pipeline procedure? That does help me to see things a little more differently; 5-10% is more than 1% ā¦ I just donāt know what is meant by paraclinoid internal carotid arteryā¦I read on one site it is a complex aneurysmā¦maybe I need to find out more. I am just not sure if it is above or below what you referenced. I remember something about it being very low chance of rupture if it were located in a certain place, and a more complex situation in the otherā¦
Roughly speaking its about 5% for pipeline in general about half that for the FRED device, but of course there are lots of factors. Heres the most recent study that I am aware of: http://jnis.bmj.com/content/neurintsurg/early/2018/01/19/neurintsurg-2ā ā ā ā 59.full.pdf
Its a good starting point for a discussion with your doc who i am sure can be of helpā¦ Seems to me Swedish is the leader in your area but donāt quote me on that LOL
Tj
Hey ADRauch,
The good thing about these groups is that differing views can be voiced, so please if you do have a differing view, say so. I will not be offended at all. In fact I welcome it.
āā¦Maybe it also makes a difference where the aneurysm isā¦ā 100% correct. Some can be asymptomatic and it maybe recommended to leave it alone. Others can occur where a vein/vessel forks off. The junction can be considered weaker and therefore of greater risk. Medical information and technology is always changing and being updated and although it irks me at times, some drās have one train of thought where others can have a totally different paradigm. Trying to decipher conflicting ideas/opinions only adds to the stress levels and I think groups such as Benās Friends can help in discussing options.
My opinion is exactly that, an opinion. I could be like a dr and say āI am right and everybody else is wrongā¦ā But that is most definitely NOT what I am saying and never will. I am NOT a dr, Iām merely a patient (at times with very little patience) and a 2nd opinion from an alternative specialist maybe the best option. Again, In my opinion, a pcpās advice can often be the clearest as some specialists can be a bit dismissive, they deal with this sort of thing on a daily basis. But for you and I this is VERY personal and dealing with it can seem insurmountable, especially when we are given options. STRESS? OMG, do these drās have any idea of the stresses involved? At times the stress does my head in (no pun intended) but chatting about it can lessen the load.
Merl from the Moderator Support Team
same here my doctor told me to other following it or have surgery he wants me to have the coiling mines is also in the carotid artery and also 4mm
I hope you make a decision that is best for you, and that it is based on surgeon input, your own research, family input, and of course, what you feel is best for you. My doc told me mine is behind my left eye and is close to a bone structure and several blood vessels. It was different from what I had learned from the CT scan when in the ER. My doctor told me mine is apparently in a complex area, which disheartened me. I am not a candidate for coiling, because the neck is too wide. If you elect to go forward, I hope you only the best!