Cholesterol granuloma of the petrous apex: anyone have/had this?

Hello @gracielynnie and welcome to Mayo Clinic Connect. I see that you are interested in connecting with other members who have had this surgery. I found some information on the National Institute of Health website regarding the surgery with some studies about the surgery outcomes. Here is the link to that information, https://pubmed.ncbi.nlm.nih.gov/12170157/.

Could you share, as you are comfortable doing so, how this problem was diagnosed? For example, what symptoms were you having and what type of specialist were you seeing when the diagnosis was made?

Is this surgery currently scheduled or are you in the process of considering it?

Hi @gracielynnie. I was recently diagnosed with a petrous apex lesion which they think is a cholesterol granuloma. I'm guessing you had your surgery last year? I would love to connect with you and hear about your experience. I hope you are well

Welcome @roja12. Has surgery been recommended for you?

Yes @colleenyoung. I'll be having surgery soon. I started with a wicked headache in March, which I thought was an extra long migraine. Then about 2 1/2 weeks later double vision began. A few days later constant tinnitus and congested type feeling in my head and ears. Since the lesion is symptomatic, the neurotologist has recommended removal. He'll work together with a neurosurgeon to remove it via a craniotomy.

I would love to talk to anyone who has been on this crazy petrous apex lesion journey. Thanks!

My nureologist referred me to a ENT/nureosurgeon. I have had three three head MRI that showed it. For the last year I have been getting dizzy at night and in the last month been having syncope episodes. Iam doing research and from what I can found surgery usually is the only treatment. My research also shows that there isn't information about the recovery from the surgery. Someone who has had could yiu give an idea of it was inpatient or outpatient. Also did your surgeon have previous experience with the surgery. Thank you in advance for thr information.

Tim.

@slutim , it sounds like our symptoms are very different which i guess doesn't surprise me, as these lesions are kind of rare and have a mind of their own. So sorry you are having problems...it's no fun. One of my main symptoms resolved out of the blue 3 days before my scheduled craniotomy, so the surgeon and I decided it was reasonable to cancel it for now and he's just following me closely. Given my experience, I can only tell you what the surgeons told me the plan would be. They said to expect 4-5 hours in the OR, 1 night in ICU, and 2-4 days in the regular neuro unit. If I was taking a longer time healing, then they would send me to rehab after that. After going home, it could be 4-6 weeks before going back to work.

Like I said, my surgery was canceled at the last minute, but this was the time-line they gave me. It was going to be a neurosurgeon and ENT neurotologist operating together to remove the lesion. They most likely would have put in an internal drainage tube as well. They work together on lesions in the head fairly often, but this would have been the first petrous apex cholesterol granuloma they would have removed together.

Hopefully some part of that provides some help for you. Again, I'm so sorry you have been going through it. I hope you can find some information to help you feel more comfortable going into surgery. Most of all, I hope you start feeling better. Sending you goodness wherever you are!