Unsure what to expect from test results

[Heavy Kevy]

I’m finally getting a chance to review my eeg sleep study with the Dr this week. I don’t know what I’m hoping for.
- The option of another brain surgery
(I was told previously surgery wasn’t an option because I had activity on both sides)
- Drastic changes to medication
- Keep slowly changing medications
- Something experimental
- ?????
They believe it’s scar tissue from my first surgery that is causing my seizures.

 

[XxBlaqkxX]

Waiting for results can be the worst. Sorry to hear the scar tissue has contributed to further issues. I hope that there will be some positive notes they can give you some positive thoughts about the results. Sometimes it's about trying to relax and not thinking about it until getting to that appointment and seeing what the doctor has to say.

I'm sure it'll all work out in some way =)

 

[Porkette]

Hi Heavy Kevy,

Just like you I have activity on both sides of my brain and they found scar tissue on the right temporal lobe
but the Dr. was able to do a right temporal lobectomy to at least reduce my seizures.
You may want to ask about gamma knife surgery that's just high frequency radio waves that can destroy
all of the problem and what's great is you go home the same day as the surgery unless you get to much radiation
then you stay overnight.
I wish you only the best and May God Bless You,

Sue

 

[Heavy Kevy]

Decisions need to be made:
Positive
- The pet and eeg scans agree the activity was all right front. This is different from my test in 2017.
-I’m eligible to be a candidate for surgery.

Negative
-requires a intracranial electrode test
-months of waiting and worrying
-roughly 70% positive results from surgery that could be recommended

I’m going to fall and hurt myself eventually. I need to do something. I trust my Dr.

 

[Heavy Kevy]

I am switching back to brand name Lamictal next week and I am finally recognizing my aura.
It’s going to be interesting if the lamictal slows them down and I can stay out of the ER

 

[Nakamova]

Surgery is certainly a tricky decision to make. I hope you have success with the Lamictal and it takes surgery off the table.

 

[Sabbo]

Hello. I returned on Thursday from a 4-day stay at Northwestern Memorial in Chicago, where they did a Video EEG. They told me that I apparently had at least 4 seizures while hooked up to the EEG. Unfortunately, I didn't have any in the daytime while they had people there to set something off that might have helped locate where the seizures originated from. I'll probably be hearing from my neurologist within a week or two. I already have an appointment set up with him for a few months from now--don't know if he'll want to see me sooner.

 

[Heavy Kevy]

Received a call somewhat out of the blue from my Neurologist. The team has reviewed my case and want me to meet with a “informed consent doctor“. I will also need to take a memory test with a Neuro Psychologist.
They would need to do the intracranial electrode test
I feel again the other night. Just a bruise on my der·ri·ère luckily.
Still haven’t seen the psychiatrist yet. I’m looking forward to that.
Ugh…Removing more of my brain. Really???

 

[Porkette]

Hi Heavy Kevy,

I wish you the best of luck. I've gone through all the tests you have to go through and take my word it's well worth it.
It really surprised me what the neuropsych. found with me when doing the tests.
I had 75% or my right temporal lobe removed and all of the right hippocampus because it got hard and shrunk from so
many yrs. of seizures. I wish you only the best of luck and May God Bless You!

Sue

 

[Nakamova]

HK, the important thing is that if/when you're ready for another surgery you feel comfortable with your doctors and the decision your making with them. Hope all goes well with the tests -- make sure to reward yourself afterwards (ice cream works for me).

 

[Sabbo]

My neurologist's nurse called, & they want me to have both a functional MRI & a PET Scan done. So I'll be spending this Wednesday (5/17) at Northwestern Memorial again. The MRI is at 8:30am, & the PET Scan is at 1:15. I won't be able to eat anything solid until I'm done with both--not even for breakfast.

 

[Nakamova]

Ooh that's hard. Can you have smoothies?

 

[Sabbo]

Unfortunately, no. I know the MRI requires only clear fluids from some time the night before, & even the PET scan has some type of restriction on eating, from what I remember. That's why I had them both scheduled on the same day (other than the fact that I'm dependent on my husband taking me to appointments). In the morning I can't even have tea or coffee w/o milk/cream!!

 

[Nakamova]

I was on a similar restriction prior to a surgery, and when I arrived at the hospital I swear it smelled like bacon in the elevator. I'm sure my stomach was rumbling as they rolled me into the OR.

 

[C0urt]

I had a sleep test with a week in bed and no electronics. And not a single seizure till I was unhooked and getting packed up to leave. And my heart rate was up from a really hot nurse.