Infundibulum in my brain

Posted by kimbo @kimbo, Aug 31, 2017

Diagnosed with 2 mm Anterior Communicating Artery Infundibulum. Any advice is appreciated.

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

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@hopeful33250

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

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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.

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@hopeful33250

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

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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.

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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

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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.

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@hopeful33250

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

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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.

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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.

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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.

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@angie4

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.

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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

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@hopeful33250

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

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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?

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@hopeful33250

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

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Hello @smartmove2,

The pituitary gland, located at the base of the brain, is connected to the hypothalamus by a small stem called the infundibulum (or pituitary stalk). Infundibular dilatations (IFDs) are conical, funnel-shaped pouches at the origin of cerebral arteries, and can be difficult to distinguish from an aneurysm. According to this journal article, "the dilatation should be considered as a possible aneurysm only when it measures more than 3 mm in diameter." https://pdfs.semanticscholar.org/6b3b/ce7eae2263f123756c1fd3b27cf087d64abe.pdf

@smartmove2, would you share a few more details? Did you have significant symptoms that required the MRA and CT Scan?

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I had an episode of syncope on 01/29/2019 where I lost vision and blacked out for approximately 45 minutes. I had had a mild migraine that day and then a awful migraine that has lasted off and on since then (almost a month). I'm on a medication to manage the migraines and have gone about 4 days without migraine since the syncope episode. During the two weeks after the syncope episode, particularly about 1 week after, I started to notice issues with my memory since the episode on the 29th. I completed a brain MRI without contrast on 01/31/19 where a brain malformation was identified on 02/04 MRI with contrast, ended up being a capillary entanglesia (brain birth mark) in my right lateral pons. Contrast MRI also revealed what appeared to be a small 2mm ICA Right Subchoid aneurysm. My primary care physican told me it was nothing to worry about and contemplated referring me to neurology. Around 02/09 I began having more significant issues with memory, difficulty speaking and complete facial numbness. I was evaluated at the hospital and they noted weakness on both sides of my body, more predominantly on my left. They gave me an injection of medication for complex/hemipleagic migraine. This made the majority of symptoms greatly reduced after approximately 45 minutes. However, intense pressure (felt like a balloon) remained behind my right eye. Spoke with neurosurgeon on 02/19 (finally) and he is going to have me complete an angiogram because he is concerned that it could be an infundibulum, not an ICA aneurysm.

Additional information/family history: My 3.5 year old daughter has a brain malformation (unknown), they previously thought it was an AVM. However, they are thinking it could be a CVM. Within 24 hours of birth she presented with seizures. MRI revealed that she had a stroke. They have completed several MRI's since then and are now doing them annually (she will have another one in April when she is 4) but the area has shown up unclear on past MRIs for them to make an official determination of the type of malformation that she has that caused her to have a stroke.

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@sam89

I had an episode of syncope on 01/29/2019 where I lost vision and blacked out for approximately 45 minutes. I had had a mild migraine that day and then a awful migraine that has lasted off and on since then (almost a month). I'm on a medication to manage the migraines and have gone about 4 days without migraine since the syncope episode. During the two weeks after the syncope episode, particularly about 1 week after, I started to notice issues with my memory since the episode on the 29th. I completed a brain MRI without contrast on 01/31/19 where a brain malformation was identified on 02/04 MRI with contrast, ended up being a capillary entanglesia (brain birth mark) in my right lateral pons. Contrast MRI also revealed what appeared to be a small 2mm ICA Right Subchoid aneurysm. My primary care physican told me it was nothing to worry about and contemplated referring me to neurology. Around 02/09 I began having more significant issues with memory, difficulty speaking and complete facial numbness. I was evaluated at the hospital and they noted weakness on both sides of my body, more predominantly on my left. They gave me an injection of medication for complex/hemipleagic migraine. This made the majority of symptoms greatly reduced after approximately 45 minutes. However, intense pressure (felt like a balloon) remained behind my right eye. Spoke with neurosurgeon on 02/19 (finally) and he is going to have me complete an angiogram because he is concerned that it could be an infundibulum, not an ICA aneurysm.

Additional information/family history: My 3.5 year old daughter has a brain malformation (unknown), they previously thought it was an AVM. However, they are thinking it could be a CVM. Within 24 hours of birth she presented with seizures. MRI revealed that she had a stroke. They have completed several MRI's since then and are now doing them annually (she will have another one in April when she is 4) but the area has shown up unclear on past MRIs for them to make an official determination of the type of malformation that she has that caused her to have a stroke.

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Hi, @sam89 – welcome to Mayo Clinic Connect. I'm sorry to hear about your dear daughter, and also about all these symptoms you've been experiencing, with losing vision, blacking out, migraines, syncope episode, memory issues, difficulty speaking and facial numbness.

Since your neurosurgeon is now wondering about whether this is an internal carotid artery (ICA) aneurysm or an infundibulum, it's good that you will be having the angiogram and get some clarity.

Hoping that @smartmove2 @kariulrich @angie4 @kimbo @hopeful33250 will return and offer their support and insights as you seek to define clearly if you have an infundibulum.

How are your symptoms today? Which symptom is causing you the most trouble?

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