I had a brain tumor, not a colloid cyst. The tumor was located in one of my lateral ventricles, though. Basically, the center of my brain. The symptons I experienced were seizures, headaches, double vision, personally changes plus a few other things. Sounds like our symptons are/were similiar. Ended up having surgery in 1992. The tumor was benign, thank goodness! Was seizure free until 2014. Been having a grand mal seizure about every 2 years since. Any doctor I've been too have no clue as to why the seizures started up, again. Very fustrating! In November, it will be 29 years since my surgery. Feels like it was yesterday.
@jwillits8 I do not have a colloid cyst. I am a moderator for Connect so am just asking a lot of questions to see if there are other members for whom I could connect you to in order to be able to share notes on your respective journeys.
I had a brain tumor, not a colloid cyst. The tumor was located in one of my lateral ventricles, though. Basically, the center of my brain. The symptons I experienced were seizures, headaches, double vision, personally changes plus a few other things. Sounds like our symptons are/were similiar. Ended up having surgery in 1992. The tumor was benign, thank goodness! Was seizure free until 2014. Been having a grand mal seizure about every 2 years since. Any doctor I've been too have no clue as to why the seizures started up, again. Very fustrating! In November, it will be 29 years since my surgery. Feels like it was yesterday.
Dr. Patrick J. Kelly. He left Mayo Clinic in July of 1993. He worked at & then retired in 2008 from NYU Langone. There could be a doctor there who could help you? It's worth checking out. Keep me posted.
I just found out two weeks ago that I have a colloid cyst. I also have lesions on my brain. My stupid doctor that is a neurologist had his nurse call me and tell me. They are referring me to a neurosurgeon because she said they would know more about a colloid cyst. I mean it kind of freaks me out I have a brain tumor and I know it's benign but it's me and it freaks me out. So I haven't talked to the neurosurgeon yet or even been giving an appointment. So what information do y'all have for me? Mine is 5mm by 5mm by 6mm
I just found out two weeks ago that I have a colloid cyst. I also have lesions on my brain. My stupid doctor that is a neurologist had his nurse call me and tell me. They are referring me to a neurosurgeon because she said they would know more about a colloid cyst. I mean it kind of freaks me out I have a brain tumor and I know it's benign but it's me and it freaks me out. So I haven't talked to the neurosurgeon yet or even been giving an appointment. So what information do y'all have for me? Mine is 5mm by 5mm by 6mm
@msangelique, it is shocking to get the news over the phone or in any manner. I can understand that you're freaked out. The term brain tumor is frightening benign or not. You're not alone. I'm tagging @jwillits8 and @lynda1992 to join me in welcoming you.
Angelique, is your cyst causing you any symptoms? Is that how it was discovered? Do you know where it is located?
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@jwillits8 I can see you would like to connect with others regarding colloid cysts.
I was able to find a previous comment in which @57r shared that she has a colloid cyst on the brain as well.
While we wait for @57r to join, do you mind sharing what type of symptoms you are having?
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1 Reaction@amandajro my symptoms have been ongoing for 6 months with unsteady walking, head pressure, sore eyes, memory mainly.
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2 ReactionsI had a brain tumor, not a colloid cyst. The tumor was located in one of my lateral ventricles, though. Basically, the center of my brain. The symptons I experienced were seizures, headaches, double vision, personally changes plus a few other things. Sounds like our symptons are/were similiar. Ended up having surgery in 1992. The tumor was benign, thank goodness! Was seizure free until 2014. Been having a grand mal seizure about every 2 years since. Any doctor I've been too have no clue as to why the seizures started up, again. Very fustrating! In November, it will be 29 years since my surgery. Feels like it was yesterday.
@jwillits8 have you been diagnosed with a colloid cyst or looking for an explanation of your symptoms?
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1 Reaction@amandajro I have a colloid cyst. Who did your surgery? How big was your tumor?
@jwillits8 I do not have a colloid cyst. I am a moderator for Connect so am just asking a lot of questions to see if there are other members for whom I could connect you to in order to be able to share notes on your respective journeys.
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1 Reaction@lynda1992 Who did your surgery?
Dr. Patrick J. Kelly. He left Mayo Clinic in July of 1993. He worked at & then retired in 2008 from NYU Langone. There could be a doctor there who could help you? It's worth checking out. Keep me posted.
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Hug
1 ReactionI just found out two weeks ago that I have a colloid cyst. I also have lesions on my brain. My stupid doctor that is a neurologist had his nurse call me and tell me. They are referring me to a neurosurgeon because she said they would know more about a colloid cyst. I mean it kind of freaks me out I have a brain tumor and I know it's benign but it's me and it freaks me out. So I haven't talked to the neurosurgeon yet or even been giving an appointment. So what information do y'all have for me? Mine is 5mm by 5mm by 6mm
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Helpful -
Hug
1 Reaction@msangelique, it is shocking to get the news over the phone or in any manner. I can understand that you're freaked out. The term brain tumor is frightening benign or not. You're not alone. I'm tagging @jwillits8 and @lynda1992 to join me in welcoming you.
Angelique, is your cyst causing you any symptoms? Is that how it was discovered? Do you know where it is located?