Infundibulum in my brain: What are treatment options?

Hello @kimbo and welcome to Mayo Connect

I'm glad that you found our online patient support group. I am sorry to hear of your new diagnosis. Here is a NIH website that gives a description of this disorder, https://www.ncbi.nlm.nih.gov/pubmed/23600930

In order to offer find other Members for you to connect with, please share with us, as you feel comfortable doing so, some information about your symptoms and how your doctor came to this diagnosis (i.e, MRI, or other neurological test(s)?). We look forward to getting to know you and supporting you at this time.

Teresa

Hi , thank you very much. I was diagnosed by having a MRI and MRA. I also have small vessel disease caused by chronic migraines. They were following up on that when they found the Infundibulum. My Neurologist just ordered another MRI and MRA to check on my small vessel disease as well as the Infundibulum. Having those tests mid September.

I also meant to add some symptoms I have had, I was diagnosed with small vessel disease after two episodes of double vision , just few days apart. I do have High blood pressure, and am on three medications , thankfully it is controlled.

Hello @kimbo

The additional information you provided was helpful to me in finding some other Members for you to talk with. Some other Members of Mayo Clinic Connect have also posted about small vessel disease, I hope that they will join the conversation and offer some of their experiences, @swenglert @lmg1128 @sue60. Here is the link to a discussion on Small Vessel Disease, perhaps you can relate to some of the posts here, https://connect.mayoclinic.org/discussion/i-have-vascular-small-vessel-disease-that-so-far-just-has-caused/?pg=3#comment-61152.

Here is a Mayo website that gives some more medical information that you might find useful, http://www.mayoclinic.org/departments-centers/neurology/overview/specialty-groups/cerebrovascular-diseases-critical-care-group/overview.

Were you diagnosed with small vessel disease at the same time as you were diagnosed with Anterior Communicating Artery Infundibulum?

Teresa

I'm sorry, I must b in the wrong discussions. I had a brain bleed, aneurysm, and then they found 2 more that I had clipped or coiled.

Hi @hopeful33250 Thank you for the links. I was diagnosed with small vessel disease initially by MRI. Went to different Neurologist for a second opinion, and she ordered MRI and MRA and I was then diagnosed with the Infundibulum.

I am completely lost. During the most abnormal migraine of my life 3 weeks ago, I was given an mri. An infibulum was found. My migraine continues on and off for 21 days now. I have strange neurological symptoms like numbness on one side and terrible cognitive issues like never before, yet my Neurologist insists I don't need to be seen again for 6 months and the symptoms are all due to a regular migraine - completely unrelated to the infibulum. I have family history of stroke and aneurysm. This is not a "normal" migraine for me. Am I being an alarmist or is a second opinion warranted here? I just feel so defeated after 2 er visits and 2 Neuro appts.. they just say its all normal. It will go away. In the meantime, ive lost 3 weeks of my life.

Nice to meet you @kimbo , I also have a small infundulum off my M1 branch, I was diagnosed with this about 2 decades ago. I was monitored every 6 months, then yearly, then every 5 years. I also have a vascular disease called Fibromuscular Dysplasia and aneurysms are common in this disease. If I become symptomatic a MRI/MRA is done. Because of all the monitoring the neuroradiologist also discovered a AVM that was not there in prior imaging. I do have headaches, but I tolerate them. How are you doing with your diagnosis? It took me years to feel comfortable with my diagnosis and I don’t think about it very often anymore, however there are times when I remember and it is like I am shocked all over again...that sounds strange I know.

Completely normal to respond the way you have and I always recommend a second opinion. Make sure you find a neurologist that is willing to work with you and your symptoms. Your headaches may not be associated, however they need to be treated appropriately. You need to be monitored no mater the size of the aneurysm. You need a chance to understand your symptoms and what they mean, it takes a while to figure out if and when you should be alarmed. I know the feeling of defeat, adovocate for yourself...it is not an easy task, I know...but we are here for you. Hang in there @angie4

Can someone explain to me what infundibulum really is and how it can be treated? I was told after an MRA and CT Scan that it is one or the other. infundibulum or aneurysm. Shouldn't the neurologist know this after and MRA and CT Scan?