I'm here after a long break and I need advice

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stacey

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HI

My name is Stacey and i came on this site quite a while back, so i guess i am new here again. :)


A little about me:

I have Tuberose Sclerosis Complex and both my children do too, luckily for me i have been seizure free for 8 years.

Unfortunately my youngest (kyuss, 4) has high blood pressure and development delay from the TSC and Xavier (6) has Adhd, Autistic traits, intellectual disability and also seizures.


Xavier has been a major concern with his seizures lately as he is now on his 10th medicine and he is also taking 4 at once.He is having up to 5 drop seizures a day and his neurologist has said that he has only another four meds until he has to be considered for surgery.I am very nervous about this surgery happening and i was looking for any advice from anyone who has been (or knows someone who has) has epilepsy surgery. any advice would be wonderful.

thankyou for reading my novel :D

Stacey
 
Wow Stacey you're dealing with a lot. I don't have any advice but take care. I hope you get some helpful responses soon.
 
Thankyou MAB,

It's nice to hear from those who know what I'm talking about which puts my mind at rest. Thankyou for the reply��.
 
 
Hi

Thankyou Nakamova for all that info, I read up on the links you gave and also in an Australian site too to see what it all entails. I saw the neurology for xavier about a week or so ago and as I said above only 4 meds are left, his seizures have improved slightly with the paxam but I am rather cynical at this point after 9 other meds that it will work. It seems to be a consistent problem that the meds last approx a month and then the seizures go haywire. I have had to buy him a helmet because he has split his skull and has had to have it glued a few times and it scares me that with the seizures, the meds and with him knocking his head if that is something that can cause permenent damage.

The neurologist suggested that I talk to some others that have had the surgery , as well keeping in mind that xavier is only 6 and his mental/ emotional development is limited.

Thankyou for taking the time to reply, it's very much appreciated :)
 
*im not sure what surgery he is thinking of because he hasn't really explained anything other then that he is considering it as an option for xavier, this of course makes it more frightening for me not knowing what's going on :(
 
Well, you're doing the right thing gathering information. I hope the doctor can be more helpful/reassuring going forward.
 
Can anyone give me any info about the surgery from those who have had it?
 
HI Stacey,

Where in Australia are you from? I live on the NSW/VIC border which is in the country area so we only have your basic neurologists here.

I had epilepsy from 9 months - 3 then no seizures for 21 years until my seizures returned in 2002 when I was 24.
My neurologists tried me on a few different meds & from 2004 I was on at less 2 meds at a time. In 2009 after trying me on my 5th med in 7 years he told me there wasn't much more he could do & suggested I look into surgery & referred me to an epiologist.

When my neurologist suggested I have surgery he referred me to Prof Sam Berkovic who is the head adult epiologist at Austin Health in Melbourne. I met Prof Berkovic in June 2010 & after going through my history of seizures he confirmed I was a good candidate for surgery & passed my info onto the hospitals epilepsy nurse. Once the epilepsy nurse contacted me I went through pre surgery tests & in Nov 2010 I found out I was an excellent candidate for surgery.

I had my surgery on 10 March 2011 where they removed scarring on my left temperol lobe.
I have been seizure free since the surgery & the only issues I have is sometimes my head might feel a little funny but it lasts a really short time which seems to happen more when I am stressed or over tired. My specialists in Melbourne said to me that the funny feelings are just my brain reminding me not to over do things.


The Austin health has a paediatric epiologist Prof Ingrid Scheffer who is supposed to be really good.
http://www.ingridscheffer.com/about.html
http://www.brain.org.au/epilepsyresearch/staff/profiles/i_scheffer.htm

If you want to talk to me further feel free to send me a private message :)
 
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Hi CQ,

I am from Perth and we spend most of our time at princess Margaret hospital, where his neurologist Peter Walsh is and I also talk to the epilepsy liaison nurse quite frequently in between appointments.

At first I was told that surgery would have to be in Melbourne and of course that would have meant flights/ accom while I was there but then I was told that dr najaran at PMH can do it and she is the head neurologist at pmh as far as I know.

Of course if it hoes ahead atleast it being in my own state and a place I'm familiar with can only be a good thing, and also support from family and friends nearby.

Thankyou for the info and I will definately look at the links you have provided ��

If I don't speak to you before then, merry Christmas and I hope that the coming year brings you luck and joy. Xx
 
stacey said:
Hi CQ,

I am from Perth and we spend most of our time at princess Margaret hospital, where his neurologist Peter Walsh is and I also talk to the epilepsy liaison nurse quite frequently in between appointments.

At first I was told that surgery would have to be in Melbourne and of course that would have meant flights/ accom while I was there but then I was told that dr najaran at PMH can do it and she is the head neurologist at pmh as far as I know.

Of course if it hoes ahead atleast it being in my own state and a place I'm familiar with can only be a good thing, and also support from family and friends nearby.

Thankyou for the info and I will definately look at the links you have provided ��

If I don't speak to you before then, merry Christmas and I hope that the coming year brings you luck and joy. Xx
Click to expand...
That would be good if your son does have an operation it can be done in Perth to make it easier.

I live a 3 to 4 hour drive from Melbourne so my epilepsy nurse had booked all my pre surgery appts close together so I didn't have to make too many trips down to Melbourne. I had my 1st lot of tests in September 2010 & the VEEG then some other tests in November 2010. I found out while I was in for the VEEG that I could have surgery.

The surgery was covered under medicare so the only thing I was out of pocket with was travel & some accomodation. My Mum came with me as my carer, we took the train for the pre surgery tests & when i was due to have the surgery & my Dad picked us up when I was due to come home. My Mum is on a pension & I was on a health care card so our train tickets were cheaper & the Austin Health have a medi hotel near the hospital for patients who live out of town. It was free for me & Mum only had to pay a small fee.
When I had my VEEG the epieologists decided they wanted to do a functional MRI but my epilepsy nurse couldnt get me in until 4 days after I finished the VEEG so we had to stay in Melbourne for a few days longer then expected.
My epilepsy nurse arranged accomodation for us & the only place she could get us in at short notice was lions house which was not far from the hospital.

After I had my surgery I had to stay in Melbourne for a week before I saw the specialists again & got the all clear to go home.
My Mum & I stayed at the Lions House after I came out of hospital when I had the surgery.

When we 1st went to Melbourne for my pre surgery tests my epilepsy nurse told us about a transport accomodation assistance you can get to help with travel/accommodation. We had to pay for the transport/accommodation & then send the receipts of & we were paid some of the money back.
This was for NSW but I think its Australia wide.

Good luck with everything, keep us updated
 
To CQ,

I must say firstly, thankyou so much for being able to give me the info that you have because it helps that you have had the surgery and know what happens up to getting the surgery but can also say what happened after and its also great that you are a aussie too!

I left a message with the epilepsy liason nurse today because xavier is becoming increasingly agressive to his brother especially but to me also.This is because of the paxam, his newest medicine, so i daresay things are going to change again and i hope that it all works out.

thankyou for all your help :D
 
stacey said:
To CQ,

I must say firstly, thankyou so much for being able to give me the info that you have because it helps that you have had the surgery and know what happens up to getting the surgery but can also say what happened after and its also great that you are a aussie too!

I left a message with the epilepsy liason nurse today because xavier is becoming increasingly agressive to his brother especially but to me also.This is because of the paxam, his newest medicine, so i daresay things are going to change again and i hope that it all works out.

thankyou for all your help :D
Click to expand...
You're more then welcome Stacey :)
As I said if you want to speak to me privately or have any questions then feel free to send me a Private message
 
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