Question from Victoria:
I am a 36 y.o. female in excellent physical shape , and generally well. In March of 2005, at age 34, I experienced two partial seizures that subsequently generalized. No hx of seizures prior to this; however, severe chronic migraines from 2001-2003 managed with Topamax, as well as severe unremitting insomnia during that period (usually prodrome). Resolved and d/c AE’s in that time frame. Unsure if clinically relevant. Sleep-deprived EEG provided a diagnosis of idiopathic LTL Epilepsy. (Discovered later that my Mother had grand mal seizures into her late teens.) Non-contrast and Gad MRI’s revealed “8×8 mm mass w/ a small septated adjacent structure that has mild asymmetric thickening of the wall on the right lateral aspect which enhances slightly. Most likely a benign pineocytoma, not a simple cyst. Continued follow up in 6 months to reassess.” No family hx. No other workup or CSF markers were obtained. MRI of 10/05: Lesion is recorded as 8×10 mm. (It has grown in last 6 mos. but this is Not on report) Conclusion: “because of lesion’s asymmetric posterior wall enhancement, serial follow up with repeat MRI in 6 months is advised” Radiologist’s report terms it an “atypical benign pineal cyst or benign pineocytoma”. In the last year I have experienced: Cognitive difficulty (word-searching), ST memory loss, forgetfulness, complete loss of concentration and focus to the degree where I halt a conversation because I cannot convey my thoughts, or remember what I was speaking about. Problematic with my daily activity…( in biotech sales) Granted, it has been somewhat difficult due to not driving for 6 months, losing my job due to that, and having to find a new one, but I am not myself at all. I feel like I lost my snappy personality. I used to always be the laughing one in the room. (Maybe it’s adulthood) 3 mos. ago I had several episodes of diplopia, along with headaches. Evaluated by opthalmologist on my own, normal. Controlled from the start with Zonegran 300mg; no seizures. Today, my best friend, incidentally a physician, encouraged me to seek a second opinion. I am being evaluated at Yale on Tuesday! What should I expect with the clinical information I have provided? Would you please speak to the standard of care/ evaluation in pineal cysts, pinealcytomas, etc? What are treatment options, and when are they required? Is any tumor growth acceptable? Anything else? Thank you. I appreciate your taking the time and care to read this lengthy post, to answer it, and mostly, that you provide a resource and an anchor for patients and their families. Your answers are considerate, respectful and very compassionate. You seem to be what every patient would like from their physician: communicative, knowledgeable, friendly, highly intelligent and motivated. I have always been blessed with those qualities in my own caregivers.
Thank you again. Victoria
I can understand the life changing events you have been through over the past few months. Many of my patients have seizures as a result of their brain problems. Anticonvulsants typically work well at controling seizures. However, some have side effects that can impair neurocognition or personality. It is best to talk with your neurologist about this. It sounds as though you have two problems–a pineal region cyst and temporal lobe epilepsy. Medications and serial mri’s, surgical resection, and radiosurgery all can play roles in your treatment. It is best to find an experienced neurosurgical team. They can evaluate you and discuss the potential treatment options. The neurosurgeons at Yale are an excellent group. Please let me know if I can be of assistance in the future.
Best of luck, Jason Sheehan