Infundibulum, in my brain,

Hi,

Sorry to hear about your condition. Personally, I hadn’t heard of all the conditions mentioned.

Your questions seemed best answered by medical professionals and perhaps someone with this condition can come share his/her experiences with us all now that they had been mentioned.

Cheers,
Louis

@louissc I came here and hope to find someone that has experience with one, symptoms and conditions, treatments and outcomes, all I can get from my neurosurgeon is, mine has not changed, thank you

@normanchester

Hi,

You will this forum most useful when it comes to experience with many people so ever ready to do so.

I think that’s how I found out about frontal temporal dementia. And I did read up a bit more about it. And I also did share a little my experiences either Briviact, a medication which i recently tried and never heard about till visiting this forum.

Cheers,
Louis

Hi @normanchester ,

I wish you all the best!

Cheers,
Louis

@louissc thank you

@louissc thank you very much

Normanchester: Here is a link that describes the differences between an infundibulum and an aneurysm. Dr. Chouddhri says an infundibulum is a "fake aneurysm." I happened upon this link when I was diagnosed with an aneurysm 2 years ago. Kudos to your neuro doc that he called it out for what it was. On this video Dr. Chouddhri states that patients are referred to him for aneurysm treatment but he finds when he personally reviews their angiograms that they actually only have an infundibulum.

chesternorman: I wouldn't be surprised if the moderator transfers this question and responses to the cerebrovascular and stroke forum.

Hi! Of course, not a replacement for medical professionals, but I do have some experience with this. I have a thickened infundibulum, which is also called the pituitary stalk. It connects the pituitary gland and hypothalamus. My condition was caused by a relatively rare disease called LCH, which I’ve had on and off since childhood. Chances are that isn’t the cause. A few questions, if you feel comfortable answering:
1. How old are you? Certain conditions can be more common than others during certain age ranges.
2. What prompted you to get a MRI (I presume)? This could offer some clues.
3. Did your doctor note anything about your pituitary gland?
4. Do you have a history of any cardiovascular disease, such as high blood pressure or aneurysms elsewhere in body?

For me, I mainly had symptoms of hormone deficiencies due to pituitary damage, which are (mainly) under control, and headaches. You could look up conditions such as hypothyroidism, diabetes insipidus, adrenal insufficiency, or low testosterone. If your symptoms match any of these conditions, it could indicate pituitary involvement.

Overall, there is a good chance it’s just a benign process, whether congenital or acquired due to age or health conditions. Definitely talk to your doctor about pinpointing the reason. If your doctor doesn’t seem to care, absolutely get a second opinion.

I hope everything is well with you. Feel free to ask more questions if you want.

Zach

@zachary777 thank you for the information I'm going to be overwhelmed today I will get back to you