I had surgery on 2/24/16 and was told everything went well. While at home and recovering, I decided to go into my patient portal and to my SURPRISE I learned that the CT scan done on admission to the hospital and MRA done at discharge, BOTH found a 2nd aneurysm (2-3mm). Worried, I called the neurosurgeons NP who had no clue about it. She called me later after speaking to the doctor and informed me that "according to the doctor", I don't have another aneurysm, but rather an infundibulum. WTH. Did anyone feel the need to clarify this with me before I left. Of course not, no one did, not until I asked. I am so disappointed and angry. NOW, 3 months later, the f/u MRA shows the same thing, a 2nd aneurysm. I wonder what they will say now. I don't know what to do. I'm frustrated and scared. Any advice?
I am simply flabbergasted to read your story. There simply is a lot of carelessness in our medical system and you have to be your own champion. Did you read recently that medical mistakes are the third highest ranking cause of death? Just one question, is an infundibulum something innocuous? Is it really another aneurysm or something else?
My advice, like any medical advice, get a second opinion from absolutely best doctor at the best institution you can find in aneurysms relatively close to your home. Don't leave any stone unturned. Indeed, I personally would drop the doctor who did not bother to tell you about the second aneurysm. You need to viscerally trust your doctors, which in my mind would not be possible with this carelessness.
An now more advice. While you nervous and scared, be strong. You have the inner strength you need to go on, to deal successfully with this challenge, to make it through, and to thrive. You still have good reason to be optimistic since if it is another aneurysm, the docs will take care of it.
Hi Michelle, this is something I found online about an infundibulum… “Infundibula (IFs) are funnel-shaped symmetrical enlargements that occur at the origins of cerebral arteries and are apparent on 7 to 25% of otherwise normal angiograms. They are frequently considered as normal anatomic variants of no pathogenic significance.” I also read that infundibulum can progress to become an aneurysm. however, in some cases an infundibulum has been confused for an aneurysm.
Michele said:
Hi Sky75,
I am simply flabbergasted to read your story. There simply is a lot of carelessness in our medical system and you have to be your own champion. Did you read recently that medical mistakes are the third highest ranking cause of death? Just one question, is an infundibulum something innocuous? Is it really another aneurysm or something else?
My advice, like any medical advice, get a second opinion from absolutely best doctor at the best institution you can find in aneurysms relatively close to your home. Don't leave any stone unturned. Indeed, I personally would drop the doctor who did not bother to tell you about the second aneurysm. You need to viscerally trust your doctors, which in my mind would not be possible with this carelessness.
An now more advice. While you nervous and scared, be strong. You have the inner strength you need to go on, to deal successfully with this challenge, to make it through, and to thrive. You still have good reason to be optimistic since if it is another aneurysm, the docs will take care of it.
Because neither of us are highly experienced neurologists, its simply hard to understand what this IFs is. You could do a lot more research on the web, especially on some of the more clinical websites that are very informative, but also technical. I still think getting a second opinion from a highly reputed neurologist/neurosurgeon is the way to go. It will help you understand what you really have and the course forward. I saw five neurosurgeons/neurologists before I decided to get my clipping. You can say that I need a high degree of information to make difficult decisions. I'm very data driven!
Have you spoken to your doctor who did your surgery? Ask why the Neuroradiologist says and your doctor says infundibulum. Sometimes what the doc sees while performing our procedure is different than what the tests say. You might also ask why he or she did not share this information with you. I’m guessing and it’s only a guess, that your doc was waiting for you to get over the anesthesia. My brain stays a wee bit cloudy for several months and then my doc gets down and serious. Good luck!
Thanks Moltroub for the feedback. Unfortunately for me, I have only met with the Surgeons NP once after dicharge. I have called her with questions as well after that time, but that’s about it. When she called me with the results of this recent test, I will be requesting an appointment with the surgeon to discuss this further.
Moltroub said:
Have you spoken to your doctor who did your surgery? Ask why the Neuroradiologist says and your doctor says infundibulum. Sometimes what the doc sees while performing our procedure is different than what the tests say. You might also ask why he or she did not share this information with you. I’m guessing and it’s only a guess, that your doc was waiting for you to get over the anesthesia. My brain stays a wee bit cloudy for several months and then my doc gets down and serious. Good luck!