Chat and Community Forums Closed

Due to the popularity of social media, we have seen decreasing engagement on our forums and chat. Please know we want to keep talking to you about epilepsy, seizures, and what you need. We want to stay connected with you.

Community Forum

Left temporal lobectomy in Australia

Hi I am new to this site and live in Australia. We don't have a support site anything quite like this and it is great to see so many topics and be able to 'meet' people who go through the same experiences. I have never even met another person with epilepsy in the 15 years I have had it, and have told very few people. Currently I am considering surgery and was wondering if any members on here are also Australian and if they can recommend surgeons, or tell me about their experiences with surgery in Australia. thanks ozsam

Comments

Re: Left temporal lobectomy in Australia

Hi Ozsam,
I am from Sydney and had surgery this year at Westmead Private,where I had a private room with ensuite.
So far, my surgery results are excellent, but this does not mean I am cured, You have to wait one year after surgery,generally, and if you are still seizure free they will slowly start to reduce medications then. Very very good , excellent care recieved at Westmead Private.very attentive. I went in the day before surgery and was in there for 7 days after surgery. You will want private health insurance, that covers your hospital accomodation etc,to cover your costs at Westmead Private, Westmead Public is on Medicare .
But before you can get there, you need to do the video eeg at Westmead PUBLIC Hospital, generally 7 days ,(sometimes longer), with a camera on you the whole time , you will also have a vest on ,in which a bulky transmitter is attached . You will need a family member who knows your condition well to go to Westmead Public with you for the 7 days video eeg, as they have to alert the staff every time you have a seizure.
There is also other test which you would need to do later,after the video eeg as well, such as pet scan, Spect scan, fmri test etc.
At Westmead Private, they had me back in my Private room 72 hours after the surgery, and the physiotherapist had me out of bed the next day aiding me to walk again . Its very important you get mobile after the surgery. When you come out of the anasethetic you are very alert. I was a little emotional for about 3 weeks after surgery, but this is only the results of the morphine wearing off, from the anasethetic. Some side affects of surgery can be: memory loss, tip of the tongue -losing words, periphial vision- but this can restore with time.
You may feel the need to shade your eyes for the first couple of weeks after surgery.
I had Dr Andrew Bleasel - nuerologist at Westmead Public and I had Dr Mark Dexter at Westmead Private-surgeon.
Having surgery is not to be taken lightly, I had an attitude that I was not going to make up my mind one way or the other until such time I had been through all the testing they wanted , and had been given the prognosis of what chance of sucess surgery would be for me.
Good Luck- Aussie

Re: Re: Left temporal lobectomy in Australia

Hi

Thank you so much for responding. It really helps to hear some feedback.

Can I ask the severity of your epilepsy on going in for surgery? At this point my neurologist is not recommending it either way as I do not have a chronic case, and maybe not until I want to have kids, which is why I am finding the decision so difficult. I have been through the testing before, and then they decided that because it was left sided it might be a bit risky on my speech/memory. I think that was what made me run. I will have to go through it all again if I decide to go ahead with it. Did you do a WADA test?

I did not realise the recovery was quite so long. Do you think your speech and memory will fully return?

The million dollar question - Are you glad you went ahead with it?

Thanks very much for your help. I am in WA and the association aren't too helpful,I can't find anyone to answer my questions.

the aussie with too many questions.

Re: Re: Re: Left temporal lobectomy in Australia

Hi Ozsam,
My epilepsy was not severe (petimal if I remembered my tablets or Grand Mal if I forgot a dose). it was discovered in the pyscology test I went through and the fmri I went through during all the tests to see if I was a suitable candidate for surgery ,that the functions that were normally controlled by the left hand side of the brain had switched to the right hand side.The right side of my brain had been able to teach itself to do the functions normally done by the left side,this was a big advantage for me in seeing if I was a suitable candidate. They believe my brain was able to retrain itself because I was so young.2 months old.
No I did not have a WADA test, instead I had a relatively new test , I had what is called an fmri scan,( Functional MRI scan ) in this they can get a better result than going through the invasive wada test. It is similar to a normal mri scan only that during this test the operator shows you words on a screen in front of you and you need to "think" of the relative adjective for that word . I know this sounds unusal ,but it is true, at the time I had the test, it it was not recognized by medicare.
My speech was normal immediately after the operation,fortunately my speech has not been affected. Yes I have had some memory loss, I forget peoples names every now and then, I sometimes lose a word when Im talking to someone .
Probably the thing that I have lost the most- and miss the most is my ability to dance. I have been a linedancer for over 10 years, before having sugery I was one of the better "non competitive" line dancers in Sydney. I now have trouble remembering new dance routines, where as with the older dances I do not have as much difficulty with.
t I was told that I would probably have difficulty in learning anything new but would not have problems with old memories/abilities.
To help my memory, I regularly do crosswords/ sudoku puzzles to exercise the brain.
Recovery will be at least say 8 weeks before you would even consider returning to work, but even then you need to remember that it takes a full year for the brain to heal after surgery, so you can expect a few odd things like occasionaly losing balance , maybe some perphial vision loss, but these things usually get better with time.
Even though I have a few memory problems and my ability to dance is not as good as it used to be, I am determined to get my dancing back and I am slowly improving. One thing to remember, just because you have some problems immediately after surgery ,it doesnt mean you will always suffer that problem, with time perphial vision improves and so will "some" other problems.
I have never owned or driven a car, I am now able to go for a license if I want to. The positives definitly outweigh the negatives. Providing I continue as I am , I dont have to worry any more about when will I next have a seizure? where will I be? will I be safe? Not ever having another seizure is really something to be happy about, but I still have another 4 months to go before my year is up ,which is when my doctor will start to reduce my tablets,that will be a bit scary after been on them so long. If it is afe for you to have surgery I would reccomend it. It is a big decision ,but is a life altering, (for the better ),one as well.
Have you considered going interstate if you cant get a good surgeon in WA
Aussie

Our Mission

The mission of the Epilepsy Foundation is to lead the fight to overcome the challenges of living with epilepsy and to accelerate therapies to stop seizures, find cures, and save lives.

 
24/7 helpline
P