Ruptured dermoid brain tumor

Hi Teresa, I found one local neurosurgeon who had experience with a ruptured dermoid cyst in the brain. He ordered MRI's of the entire spinal column along with the brain. If I understood correctly, they could not find where the cyst originated from; only the scattered remnants throughout the brain were apparent. He did a followup one month later, and there were no changes. He would prefer to take a conservative approach rather than surgery and repeat the MRI every six months to check for growth. I still have a headache that bothers me every once in awhile, but no other symptoms. I have to admit, I was glad to hear no surgery since he explained that the fatty-like deposits tend to be sticky and there's a risk for brain damage when trying to flush them out. I did take your advice and requested an appointment with a Mayo doctor, and am waiting for a reply. I don't know which is less appealing, brain surgery or knowing you have these "seedlings" in your brain just waiting to sprout.

Your response to this gave some encouragement as my granddaughter was just diagnosed this evening with a ruptured dermoid cyst in the brain. She has two small children and husband and there doesn't seem to be alot of information about this process. Your response is the first one I've found that offers some hope in terms of a preventative method other than surgery which seems to carry so many risks.
She was taken by ambulance by our local hospital, so we are still waiting to hear how serious this is and what her condition is. She was not experiencing too much pain, but was weak and the local hospital felt she needed to be seen by a neurosurgeon immediately.
Any additional information you have would be helpful and I hope that your present situation also stabilizes.

So sorry to hear your grand daughter also has experienced this same rare condition. It’s been several months now since I was diagnosed and the accompanying brain fog had lifted. However, last night I had another occurrence of the violent headache. I called my neurologist and he explained there was probably some movement in the fatty like globules that were left after the initial rupture. The brain fog is back but not as bad this time. As I mentioned, I did contact the Mayo Clinic and three weeks later did get a call from their neurology department requesting any scans I had and doctors notes. I just sent them yesterday and will let you know what their response is when I get it. I hope your grand daughter is stable and improving.

I originally posted this and have failed to keep up reading these responses. It is so refreshing to know others are dealing or have dealt with the same or similar. I hate it for everyone. My last appointment did show that it appears a tiny bit of leakage may be occurring again. He did not want to do anything still but he is seeing me in a shorter amount of time. I did break down. I still have not sent my info out to the neurosurgeron at Brigham & Women's because I know he will want to take it out. I would love updates from all of you! Thank you so much for sharing. My NS is currently at UAB so at least we know he has experience with one (me). ha. He does seem to make me not worry as much because he is just hopefuly nothing ever happens.

I would love an update on your granddaughter. I hope that she is doing well with no problems. I love that you cared to reach out to help find others in a similar situation.

I understand how you feel. My neurosurgeon wants to continue watching too in hopes that nothing will happen. I get headaches occasionally, which before this event, I rarely got. My doc says they are caused by movement of the remnants. He did tell me the globules are very sticky and it’s risky surgery since when removing them healthy tissue can be removed as well. I get the feeling you have to weigh the benefits vs the risks. Since last posting, I heard back from the Mayo requesting scans which I sent but have heard nothing back. That was a good three to four weeks ago. If I do get an appointment, I’ll post their advice.

I have headaches but most of mine are likely from cervical disc issues. I still have the main dermoid (behind my right eye, next to sylvian fissure) very much in tact but pieces throughout. Yes, he did say those would stay, even if surgery was ever done. Thankfully, mine have not caused trouble but that is what I have read can be the main issue - such as what you mentioned with chemical meningitis. I have a repeat scan next Tuesday, so praying for "no change". My neurosurgeon is Dr. James Markert at UAB. We will have a tele visit follow up after my MRI is done here. He has been seeing me since July 1, 2011 if you ever wanted another opinion. His team is, at least, used to viewing mine annually 🙂