Hypometabolism in Occipital Lobes on PET with Temporal Lobe Epilepsy

Hi, @adoptivemother - as a fellow mother, I empathize with feeling scared about your daughter. This is especially challenging when you get some results back on a patient portal and may or may not know how to interpret them. I know that for me when I look at pathology or radiology reports, I know enough information just to be "dangerous." I never understand all the vocabulary in these online reports.

I would encourage you to call and speak to your neurologist's/epileptologist's administrative assistant or their nurse, requesting that someone on the team have a phone call or video chat with you at their earliest convenience to explain the results. I would guess that such communication is in the plans for the doctor and team, but it's perfectly fine to let them know you'd like to do that as soon as possible. I found for myself that I generally interpret my findings online as far worse than they really are, and I'm relieved when I speak with the doctor.

How's your daughter been doing symptom-wise since your visit to Mayo Clinic Rochester?

Thank you for the voice of reason. It is tricky for me to call and request things because she is 23 and very much hanging onto the tiny bit of independence that remains. I haven't even told her about the PET because she is upset enough about potential brain surgery.

We had world class treatment at Mayo! She has not had any noticeable seizure activity since leaving there and having her med dose doubled. They said she wasn't even on a therapeutic dose to begin with which was maddening but it left room for a simple improvement.

Glad to hear your daughter's treatment was world-class at Mayo Clinic. I'm also happy to hear she's not had any seizure activity since leaving the medical center and having her dose doubled.

adoptivemother, I get what you are saying about hanging onto any bit of independence that remains as a young adult. One of my sons turned 18 this year, and we are walking the tightrope of trying to let him learn to manage his own healthcare (e.g., we decided to have him go to this year's well-child visit by himself) while also providing guidance, a reminder once in a while, etc. Our son is definitely flexing his independence muscles, so we have to walk on eggshells a bit.

What would you think about asking your daughter, if the opportunity presents itself, if she'd be willing to call or message the doctor in her Mayo Clinic portal about meeting soon to discuss the results of her scans and any other outstanding topics related to her care?

I realize there may not be an opportunity to approach your daughter on this anytime soon, if she is not in a receptive frame of mind, not around, etc. Or, you may deem it best to not go the route of prompting her to do anything.

I also realize she may not be a phone caller. My 16- and 18-year-olds really don't call anyone - even to follow up on something my husband and I would deem important - but perhaps your daughter does.

I'd also like to introduce you to @simplepartialman1 @santosha @kb2014 @mofu @rloc @restisaweapon @royanthony. They may have input for you related to your 23-year-old daughter's epileptic condition and a PET scan that found hypometabolism.

Are you continuing to feel scared today, @adoptivemother?

Thank you for your response. We have definitely coached our other kids in a similar manner but like you said, it is like walking on eggshells with this one. I did go ahead and call Neurology and ended up leaving a message for Dr. Britton. He or his nurse should call with some clarification on the PET scan. I just have to be patient. Thank you for tagging people!

I am still scared only because there is no cure for Lewy Body Dementia (what Google associates with the finding) and the life span is so short. Until I read that scan this weekend, I was over the moon hopeful that the doctors could possibly cure her with surgery and my only hurdle was to convince her to accept the treatment (she doesn't want her head shaved or to miss more work/school). Epilepsy is awful but LBD would be far worse in my opinion due to lack of treatment options. I hope they have a logical explanation that doesn't involve an additional diagnosis.

Heather

Good Morning
Thank you @lisalucier for introducing me to @adoptivemother.
I very much agree with you, Lisa. We are not doctors, so we cannot fully understand some results, especially those complex from the brain. Those terms can be very scary when we read them without having all the necessary knowledge.
Yesterday, for example, I was reading the results of the new MRI of my mother, who has Alzheimer's. New terms to me and new results that did not appear in the last MRI. I started to feel worried, but then I remembered the words of my dear yoga teacher about watching ourselves not to anticipate possible belly pains and wait for the doctor's call and explanation. I know it is easily said, but I am trying to distract myself with other activities until we get the reply from my mother's neurologist.
Try to stay calm, Heather, and celebrate the fact that your daughter has not been having seizure activity since this new med dosage.
My best wishes and vibrations for your daughter.
Chris (@santosha)

Dr. Britton called us personally to explain the results and said that it almost certainly is not a new diagnosis but related to the seizures. The question is whether the seizures are originating from the malformation and projecting to the other sites, which would further be a vote for surgery, or if she has many focal points for seizures, which probably makes surgery unlikely. They ordered a new test called a MEG but it is $40,000 and they won't schedule it until our insurance agrees to it or not. I am sure the insurance company knows more than Mayo clinic doctors. :/

In any case, even though her condition is overwhelming and the thought of brain surgery is so frightening, I am comforted to know they aren't concerned about a neurodegenerative disease at this time. I also was impressed with Dr. Britton taking the time to call both of us individually, explain everything, and then make detailed notes of the conversations in the patient portal. I have never received this level of personalized care anywhere.

Heather

Glad to hear that, @adoptivemother, that the doctor called you both and explained everything. And wonderful that they aren't concerned about a neurodegenerative disease at this time.

Good luck on the prior authorization for the MEG test. Will you share more about what they would be looking for with this test?

I am also glad to hear that @adoptivemother! I hope that your insurance won't create trouble with this exam.
Continue please sharing your experience with us.
Chris (@santosha)

I believe it is supposed to be a more detailed scan of her brain to determine where seizures are originating from. Mayo said they have only had the machine for a few months so I imagine it is not a common test.

Hi @adoptivemother, good morning
I had never heard of the MEG exam before, but after researching it, I understand it is something pretty new. I have learned a new thing from you :-).
Chris (@santosha)