3 questions! Please help, I'm new!

[ranet_jeno]

Hi everyone! First time here! Anyways, please excise me if I am inthe wrong are to post these questions! But bare with me! I'm new!


First off, I wanted to get an idea of the timeline from first consultation to the day of surgery? I have my first appointment to discuss surgery on December 15th. When will I have the temporal lobe surgery?

I was also wondering what my emergency plan should be? Do I tell people not to call paramedics? I am sick of waking up in emergency rooms but have gone into status epilepticus before so should I just tell people to dial 911 after 5 minutes have passed and no call less than five?

Thirdly, is it possible to fight seizures off? Sometimes when having complex partials I try to fight it off by focusing on it going away, and have had some merit doing so... But other times I feel like I am giving into the seizure.. And in a way almost try to enjoy the complex partial but end up in the er afterwards more often than not.. Is this unusual? AND if I am having an EEG performed should I try to give into the complex partial to cause a tonic clonic? This doesn't sound like pnes does it?

Thanks!

 

[CQ:)]

Hi everyone! First time here! Anyways, please excise me if I am inthe wrong are to post these questions! But bare with me! I'm new!

First off, I wanted to get an idea of the timeline from first consultation to the day of surgery? I have my first appointment to discuss surgery on December 15th. When will I have the temporal lobe surgery?

Thanks!

Hi nick,

Welcome to the forum. I can help you a little bit in regards to your question about surgery.

Is the appt you have on 15 December with an epitiologist? If it is an epitiologist you will be seeing he/she should be able to answer any questions you have about surgery & what's involved.

If you haven't had any tests yet you will most likely have to have a series of different tests to ensure you can have surgery.
The tests will just help the epitiologist/neurosurgeon pin point where the seizure activity is & if it is safe for you to have the surgery.

I have left frontal temporal lobe epilepsy & I had brain surgery in March this year.
For me to have surgery I had to 1st see a epitiologist who went through my entire history of my epilepsy & asked a series of questions about my seizures. The epitiologist thought I would be a very good candidate so I then had to have a series of different tests.

Prior to the surgery I had PET scan, SPECT scan, MRI, eye test. I also spent a week in hospital for Video EEG monitoring. I was meant to have 2 SPECT scans, the 1st was when I hadn't had a seizure & the other while I was in for the VEEG monitoring straight after a seizure. But when I had my VEEG I only took auras so they weren't able to do the 2nd VEEG on me.
After I got out of hospital from VEEG I had to have a Functual MRI which helped with the hospitals research as well as helped the specialists pin point exactly where my seizures were.

Because surgery is a big decision & to make sure I did understand everything involved & was both physically & mentally ready for surgery I had to see a pysychiatrist & neuropsychologist. The neuropsych asked me a variety of questions & did some memory & concentration tests on me. I didn't meet my neurosurgeon until 3 days before my surgery so he could explain exactly what they would do.

In my case from the time I met the epitiologist to the time I had the surgery it was only 9 months. But everyone would be different so the best person to tell you how long you will have to wait would be the epitiologist. I think that when the neurosurgeon is able to do the surgery would also affect the time you would have to wait for the surgery.
If you get a chance you should have a look in The Laboratory where you will find a few posts about surgery which may also help.

I'm not sure which country you live in Nick but the steps involved with brain surgery may vary in different countries but hope this post was still a little bit of help.

Good luck with your appt on 15th & please let us know how it goes.

 

[KelVarQ]

Hi Nick,

I had the right temporal lobe surgery and it took 6 months from date of consultation. Had to go through a bunch of tests to see if I was a candidate. MRI, Wada Test, Neuropsych test, Pet Scan and EEG. (I think the Wada Test was strictly because I'm left handed and they were performing surgery on the RTL and wanted to ensure it wouldn't effect my speech).

I've had success with stopping the seizures (or my husband stops them) by pressing on the philtrum (the dent above the lip and below the nose...it's a pressure point and known as the rescue spot). HOWEVER, since you've been through status I personally would want 911 called. I've been lucky as I've had 100's of seizures but never went status. I know it sucks having to go to the ER, but better safe than sorry and hopefully the surgery will be your cure all! GOOD LUCK with the surgery.

 

[RobinN]

Hi Nick...

I don't have any experience with surgery, though I did do some initial research. However, my daughter said absolutely not. I am glad that I waited, because she is now 11 seizure free, and is on no medication.

At the worst of her seizure activity she had 6 tonic clonic seizures a month. New and challenging side effects with each medication she tried. Since we have made nutritional changes, added vitamin and mineral supplements for brain AND body health, she has slowly raised her seizure threshold. We also did about a year of neurofeedback therapy.

Is there a reason you are considering surgery before attempting other non evasive choices?

 

[valeriedl]

I was also wondering what my emergency plan should be? Do I tell people not to call paramedics? I am sick of waking up in emergency rooms but have gone into status epilepticus before so should I just tell people to dial 911 after 5 minutes have passed and no call less than five?

My neurologist told me and my family that depending on how bad and how long the seizure lasts determines if 911 should be called or if I should be taken to the ER.

Very, very rarely do I have grand mals. If I will start shaking and don't stop, or if it doesn't start to stop after between 5 and 10 minutes 911 will be called. They don't waste time trying to get me into the car and driving me to the hospital, they just call for an ambulance to come with the paramedics who can help me better than they could.

When I was first diagnosed with epilepsy 8 years ago almost everytime I had a seizure my family would take me to the Er. Now that they've seen me have them for all these years they know what a 'go to the ER seizure' is like. Now they just wait and see what is going on during it and how long it lasts. They know what a bad seizure is like so they know if I should go or not.

As for your other questions I really can't give you any advice on those.

 

[ranet_jeno]

Thanks guys! this has been very helpful and im glad i joined!

I really appreciate it

 

[Brent]

I was also wondering what my emergency plan should be? Do I tell people not to call paramedics? I am sick of waking up in emergency rooms but have gone into status epilepticus before so should I just tell people to dial 911 after 5 minutes have passed and no call less than five?

I tell people not to bother calling unless:
a) I've been actively seizing for more than 5 minutes, or
b) They just feel uncomfortable and want to call (some people who aren't used to it just feel better calling.)

But, my medical bracelet says "Do Not Transport If Stable". In medical terminology, "stable" means that I don't have a life-threatening condition. By the time medics show up, if I am still seizing or if there is some other problem, I want to go to the ER. Otherwise, if I am recovering, I don't want to. It doesn't hurt to have them show up.

I also have detailed instructions printed out in my wallet and in my service dog's vest. These explain what a normal seizure and recovery look like for me, and so long as this is progressing normally, I don't want to go to the ER. I've never had an unwanted trip.

Thirdly, is it possible to fight seizures off?

For me, I seem to be able to occasionally avoid a partial by focusing intensely on a single thing. This apparently only forestalls the seizure, saving it up for later. Eventually, I will have that seizure - kind of like delaying a sneeze.