Community Forum Archive

The Epilepsy Community Forums are closed, and the information is archived. The content in this section may not be current or apply to all situations. In addition, forum questions and responses include information and content that has been generated by epilepsy community members. This content is not moderated. The information on these pages should not be substituted for medical advice from a healthcare provider. Experiences with epilepsy can vary greatly on an individual basis. Please contact your doctor or medical team if you have any questions about your situation. For more information, learn about epilepsy or visit our resources section.

Seizures caused by Tornwaldt's cyst??

Sun, 06/13/2010 - 18:48

My daughter began having Petit mal seizures when she was 12. After being placed on medication the seizures stopped and she went off her medicine at age 14. In August of 2009 on her first day of college she had a grand mal seizure in the shower before we left to move her into her dorm. She did not have another one and convinced me to cancel her appt with the neurologist. In March during finals week she had another one and then another on June 1. We had been waiting on her appt with the neurologist which isnt until June 23 but on June 1 I took her to the ER and they admitted her overnight. The neurologist on call told me her MRI was clear but there was a slight abnormality on her EEG. I called to copies of her records and when I received the MRI report it states that she has a 1.2 cm Tornwaldt's Cyst. I have tried to research this type of cyst but have found very little information about it because it is a very rare type of cyst. I am wondering if this could be the cause of her seizures. Has anyone else heard of this cyst? I am wondering why it was not mentioned to us at the hospital. We have definately determined that stress plays a big role in her seizures but the cyst has me concerned too.

Comments

Thornwaldt

Submitted by Ihsurvivor85 on Tue, 2020-01-28 - 17:38
Hello, I am searching for TC patients to compile data to present at an otolaryngology and Neurosurgical convention in April, please find me and reach out to me. It’s almost Rare Disease Day and I am campaigning here in the USA to put a face to Thornwaldt and show that we are suffering from this and more treatment modalities need to be researched and we need to be heard! Please help me in my fights and efforts to bring awareness to the Thornwaldt community. I have a fb Support Group called Thornwaldt Disease Support Group, find it and please JOIN!!! Thank you, Melissa Phillips

I have been to the doctors

Submitted by katiebrown0208 on Mon, 2017-07-31 - 21:20
I have been to the doctors twice for headaches the first time they found one thornwaldt cyst that was in 2010 and then my headaches got worse so I went and got more scans at witch point they found that my one cyst turned into 4 and the doctors sill have yet to do anything about them not sure if this will help but the most help I got was with the neuro department at uofm hope you can help you daughter cuz I personally know her pain and hope you find someone to actually help her 

They can be removed just in

Submitted by katiebrown0208 on Mon, 2017-07-31 - 21:21
They can be removed just in some cases it's safer to just leave them be it depends on the location of the cyst 

Sign Up for Emails

Stay up to date with the latest epilepsy news, stories from the community, and more.