Temporal lobe suregry

[Jo Humphreys]

Hello. Im new to this so im not sure wether im doing this correctly.
I suffer with temporal lobe epilepsy and ive got to have surgery as none of the medication works.
Ive got an appointment to see the surgeon in september and the psychiatrist in february.
Does anyone know how long its likely to be until I have my operation?
Many thanks Jo

 

[Porkette]

Hi Jo,
Welcome to CWE! I had temporal lobe surgery done in 1993 my surgeon did ultrasound surgery on me and remove 75% of my right temporal lobe and all of my right hippocampus. I also had to see a neuropsychiatrist and neurosurgeon along with an Epileptologist. These Drs. ordered tests to be done on my CT scan, fmri, wada test, stress test, neuropsych testing to be sure I could handle the surgery along with a veeg all before the main surgery was done. All together it took about 1 full yr. of testing before I was able to have the surgery but that was back in 1994 and hopefully things are done much faster today. I will tell you that after the surgery you will be tired for a month or two and depending on how the surgery goes you may find that foods you never liked you will like. I had to go for 7 follow up visits after my surgery. My surgery took about 7-8 hrs. but what took the longest was testing me during the surgery. I wish you the best of luck and May God Bless You!

Sue

 

[Frink]

Hi Jo,
Welcome to CWE.

 

[CQ:)]

Hi Jo

Welcome to the forum.

Have you had any testing done yet in preparation for your surgery or to confirm you are a candidate? The amount of time it will take as to when someone will have surgery differs as every country & hospital is different so the best people to ask are your speclaists eg neurologist or epiologist & the surgeon.

I had surgery on my left temporal lobe in 2011, before my surgery I had to have a series of testing. MRIs (both regular MRI & a functional MRI), PET Scan, SPECT Scan, VEEG & a neuropsych evaluation.

At the hospital where I had my surgery there was a team of specialists involved in the surgery, they have a meeting each week to discuss patients who are having surgery. The specialists put together all their information & decide whether the patient can have surgery. Just one specialist wouldve had to have said no & I wouldnt have been able to have my surgery but they all agreed that the surgery was the best option for me.

The whole procedure from when my neurologist suggested surgery to when I had the surgery took 16 months. The longest part was the waiting list to see the epiologist which was 7 months but once I saw him & he confirmed I would be a good candidate he sent my information to the epilepsy nurse who then contacted me & booked in my appts for my tests.

One thing I always tell people is the surgery is in no way a cure for our epilepsy but another way to help control the seizures when medication doesn't work.
When I had my surgery I went 2 years seizure free & was even able to drop one of my meds (went from 2 meds to 1) but in 2013 I started having funny feelings again.
My neurologist confirmed the funny feelings were focal seizures (bit like simple partials).

Good luck

 

[Cint]

Have you had any testing done yet in preparation for your surgery or to confirm you are a candidate? The amount of time it will take as to when someone will have surgery differs as every country & hospital is different so the best people to ask are your speclaists eg neurologist or epiologist & the surgeon.

I had surgery on my left temporal lobe in 2011, before my surgery I had to have a series of testing. MRIs (both regular MRI & a functional MRI), PET Scan, SPECT Scan, VEEG & a neuropsych evaluation. ...................
.....

One thing I always tell people is the surgery is in no way a cure for our epilepsy but another way to help control the seizures when medication doesn't work.
When I had my surgery I went 2 years seizure free & was even able to drop one of my meds (went from 2 meds to 1) but in 2013 I started having funny feelings again.
My neurologist confirmed the funny feelings were focal seizures (bit like simple partials).

Good luck

:agree: Except I only went 14 months seizure-free.
Everyone is different and it all depends on the individual and what type of seizures.

I went thru all the miserable testing too. The WADA test is surgery, too.
Check this out for more info:

http://www.epilepsy.com/learn/treating-seizures-and-epilepsy/surgery/pre-surgery-tests

Good luck.

 

[cadsgj]

Greetings Jo! Each of us I believe have somewhat different waits we have. Of my three surgeries, each has been a different amount of time. First one was merely right away because of an AVM causing seizures. Second was a 6+ month wait and the third was a month or two. I do hope it comes where you don't have to wait much and that all goes great.