Ruptured dermoid brain tumor

Hi @au99tr, welcome to Connect.
I've been reading a bit about dermoid tumors and discovered that they account for approximately 0.3% of all brain tumors. That is very rare, and hence, as you point out, there is little information out there. How was the cyst or tumor discovered? Only when it ruptured? Was it the symptom of headaches what led to your diagnosis?

I look forward to learning more about your experience as we search for others with dermoid tumor to connect with you.

I actually have not had it removed. Since I have had no real neurological symptoms, my neurosurgeon does not want to touch it. I am just followed on an annual basis. He said the worst thing we are hoping for is that I am just aware it is there. That is my prayer but it can be nerve wracking.

I failed to mention the discovery was after a car accident where I just had a bad headache and they did a CT.

I get that. Watchful waiting can be nerve-wracking on puts the emphasis on "waiting for something to happen", which sounds ominous. I prefer the phrase active monitoring. That sounds more like you're taking action and that your care team is on top of it. Rather than waiting, you can move forward the best way you can. Did your neurosurgeon say that it was likely there for a long time and only discovered now?

Yes. This is one that typically occurs during development (in utero). This can give you more peace since I have been fine up until this point. I think, because it is so rare, I would just love to know there are others out there living with the same thing with no symptoms. 🙂 Thank you so much for your responses and time.

Hi au99tr. I'm just seeing this so forgive me for the slow reply. I also have a dermoid brain cyst. Mine is located in the Circle of Willis just above the basilar artery, but has never ruptured. It was discovered accidentally by CAT scan when I had fainted and hit my head pretty hard. (The syncope was due to orthostatic hypotension..not the dermoid.) There was a follow-up MRI to confirm. I was advised to watch for growth, but do nothing unless symptoms arose. Unfortunately, I'm not sure what symptoms I'm supposed to look for. I have other health issues that I deal with so for me this is "out-of sight, out-of-mind". You are correct that there is very little info on the web and I actually don't know if this is something that I should be more concerned about or will die with rather than from. It would scare me if it ruptured. You didn't mention where it was located. I would love to have a Mayo neurologist weigh in on this since there is so little information out there. It is such a rare concern that information is scarce.

Thank you for the reply. That does give me some reassurance, believe it or not. Just to know someone else is leaving it alone. Mine I located in my temporal lobe adjacent to the sylvian fissure and the ruptured pieces are spread throughout but have not changed. I did meet a neurosurgeon from a hospital in Boston at a conference a couple of weeks ago that said he would probably lean towards taking it out but did say he is more aggressive with tumors and would just recommend another opinion. I don't think either option is that comforting...leaving it in or brain surgery :/ Thanks for the reply!

This is a much later reply, but I too was just diagnosed with a ruptured dermoid cyst in the brain. MRI imaging revealed scattered fat deposits throughout the brain. I’m scheduled to have scan of the spinal canal to try to locate the ruptured sac. As a result, my headache has been diagnosed as chemical meningitis. I’m on steroids to cut the inflammation. Unfortunately, the neurosurgeons I have seen (2), have heard of the condition but have never dealt with a ruptured case. I can find little info as to who would treat this condition. I live in the Midwest. I’m wondering if there is a doc at the Mayo who has experience working with this? Having no doc to at least explore my options with is frightening.

Hello @ldavy and welcome to Mayo Connect. I am sorry to hear of your unusual medical diagnosis. I can understand your concern in finding a doctor who understands and has experience in dealing with this condition. If you would like to see if Mayo has a doctor who works in this field, I suggest that you call the appointment department at Mayo in Rochester and inquire. Here is the link for getting an appointment at Mayo.
https://www.mayoclinic.org/appointments
They will probably be able to tell you the name of a doctor who might specialize in that type of problem.

Will you let me know how you are doing in your search for a doctor?

I had a dermoid cyst removed over 20 years ago near my pituitary gland. I was having severe migraines. My migraines did got to a minimum after the surgery. It was called a transsphenoidal procedure. They went through my mouth and nose through my sinus. I recovered fairly quickly.