Update - looking at possible brain surgery

epileric

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Hi Eric

When I went to the gym I decided not to get a membership mainly because its to expensve so I just pay as I go. Because I am on a tight budget I can only afford to go once a fortnight.

I know it's probably not enough going once a fortnight but I think of it as something different to walking lol.
If you can afford something like one of those big exercise balls you could do all sorts of things at home. They also make great seats because they make you keep your back straight and exercise its muscles (though my back does get tired after a while)
 

CQ:)

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If you can afford something like one of those big exercise balls you could do all sorts of things at home. They also make great seats because they make you keep your back straight and exercise its muscles (though my back does get tired after a while)
Thanks for the idea Eric

My Dad has one of those exercise balls so might see if he's not using it & take his lol.


I have only ever tried one of those balls once & nearly fell of it :roflmao:.
 

Nakamova

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I have one of those physio balls at home. I also use it as a spare chair when I have people over -- my place is pretty small, so the ball is just part of the furniture.

I got the Nintendo Wii system to use at home when the weather is bad out. The Wii is cheaper than joining a gym, and provides a decent range of stuff to do.
 

Rae1889

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Yup
I have a physio ball. and I used to use one to sit on at work. you can buy those ball rollers that make it roll around like a regular office chair.

I have the Wii Fit, and Wii Active. both are really fun. same with Wii Play, and Wii Sports. they can get your heart rate going pretty good.
 

Bernard

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Ruth

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Q

Walker's philosphy on working out is simple: start everyday very early in the morning before the distractions of the day come around. Do that workout every day without quitting every single day a year, no matter what.

The 2 factors that will ensure your success is Dedication and Mental Toughness.

The secret of the routine is consistency. If you allow yourself one day off then you're going to do the same thing later on and eventually stop working out altogether, a part of the schedule, you might even look forward to the structed workout.
Thank you Bernard for this information. He is right about quitting for even one day. I started quitting and then I stopped all together. I have started again and this has encouraged me to keep on doing my exercises.

Hi CQ, you can buy sugar free ice cream. When I walked a lot, I lost weight and I felt a lot better.
 

CQ:)

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Hi all,

I've been flat out lately so not much time to go online.

I had some casual work at the chiropractor who I've done casual work for before. Other times I've worked for the chiro it has been for 2 weeks or 1 day here or there. This time it was for 5 weeks, 1 March until 1 April.
Even though I enjoyed the work & the patients were great I did have moments where I got a little stressed.

I tried to walk to the chiro when I could which is usually a nice 45 min walk.
There were some days where I had to start at 7:45am & most nights I finished after 6pm. I had a very good friend drive me to work when I had the early starts & bring me home when I finished at night.

On Tuesday morning I took a turn while I was walking to work. I had only left home 10 mins before the turn & was fine by the time I got to work. I was hoping to go the whole month without taking any turns/seizures so was a bit annoyed with myself that i took a turn.

Next weekend I'm going away on a 3 day trip with a group of other ladies who have epilepsy. It's been organised by the organisation my epilepsy educator works for. My epilepsy educator & another educator are also coming. I'm looking forward to it & think it will be great to meet other people who are in a simular situation to myself.

I hope everyone has a good easter.

 
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flinnigan

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I don't know how I missed meeting you in the past or these posts, been spending a lot of time recoup-orating. I had surgery June 2009 and have been seizure free since. Any questions ask. Good luck. Oh and have a fun trip.
 

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Hi Flinnigan,
That is great that you are seizure free. I know the surgery must have been tough, but it was worth it in your case. Keep us posted.
 

CQ:)

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I don't know how I missed meeting you in the past or these posts, been spending a lot of time recoup-orating. I had surgery June 2009 and have been seizure free since. Any questions ask. Good luck. Oh and have a fun trip.
Hi Finnigan

Nice to meet you, that's good news that you have been seizure free since the op :clap:.

I recently joined an Australian epilepsy forum & have been talking to a lady on there who just had the surgery. This lady had the tests & the surgery at the same hospital I will go to if I am a candidate.

Only 2 more months until I see the specialist but I'm sure that time will go quick lol
 

CQ:)

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Hi all

Yesterday I went & saw the epilepsy neuro in regards to seeing if I'm a candidate for surgery.

The specialist went right through my epilepsy history from the seizures I took as a baby to what happens when I take a turn now. He also looked at my MRI scans & confirmed what my regular neuro said which is that I have left temporal lobe epilepsy. He pointed out to me where the scarring was on the left side of the brain which was pretty interesting lol.

He said that I would be a good candidate for the surgery & explained the chances the surgery will work & the risks involved. I have been put on the waiting list & may be able to get in sooner for the tests then 1st thought. It may still be more than 3 months before I can get in to have the tests but I was told that if they have a spot come available they will ring me which may be a couple of days notice.

The speciailist also explained how they are doing research into why in some situations children have seizures then go seizure free for a period of time until the seizures come back. He asked if I was interested in being apart of the research & got blood tests from me. They also took blood from my Mum just to see if the reason I have the epilepsy is genetic even though we don't know of any history of epilepsy in my family.

So now I just have to wait until I hear from the hospital about when i can get in to have the tests done.

Will keep you posted :)
 

flinnigan

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:clap: Sounds like very good news to me. I will be one year seizure free this coming Saturday and other than an occasional stress headache I feel fab. I'll be starting my one year testing soon. I'll go back for memory test with the Neuro Psychologists to see what I may have lost or even gained since surgery. Keep me in the loop.
 

CQ:)

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:clap: Sounds like very good news to me. I will be one year seizure free this coming Saturday and other than an occasional stress headache I feel fab. I'll be starting my one year testing soon. I'll go back for memory test with the Neuro Psychologists to see what I may have lost or even gained since surgery. Keep me in the loop.
Hi Flinnigan

Thats great news about being 1 year seizure free :clap:.
Good luck with the test with the Neuro psych.

I will keep everyone posted with what happens
 

Cint

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Hi CQ,

I also have left temporal lobe epilepsy and had a lobectomy on the left side 20 years ago in Nov. I was seizure free for 14 months, so I hope if you do decide to have the surgery, your outcome will be much more successful than mine.

Here is an interesting article about verbal memory and Temporal Lobectomy:
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1867081/
Verbal Memory Decline after Temporal Epilepsy Surgery?: A 6-Year Multiple Assessments Follow-up Study
Alpherts WC, Vermeulen J, van Rijen PC, da Silva FH, van Veelen CW; Dutch Collaborative Epilepsy Surgery Program.
Neurology 2006;67:626–631. [PubMed]

OBJECTIVE
To assess the long-term effects of temporal lobe epilepsy surgery on verbal memory.

METHODS
We assessed verbal memory performance as measured by a verbal learning test (“15 Words Test,” a Dutch adaptation of Rey's Auditory Verbal Learning Test) before surgery and at three specific times after surgery: 6 months, 2 years, and 6 years in 85 patients (34 left temporal lobe [LTL] vs. 51 right temporal lobe [RTL]). An amygdalo-hippocampectomy and a neocortical temporal resection between 2.5 and 8 cm were carried out in all patients.

RESULTS
LTL patients showed an ongoing memory decline for consolidation and acquisition of verbal material (both 2/3 SDs) for up to 2 years after surgery. RTL patients at first showed a gain in both memory acquisition and consolidation, which vanished in the long term. Breaking the group up into a mesiotemporal (MTS) group and a non-MTS group showed clear differences. The group with pure MTS showed an overall lower verbal memory performance than the group without pure MTS, in the LTL group more pronounced than in the RTL group. After surgery, both pathology groups showed an ongoing decline for up to 2 years, but the degree of decline was greater for the LTL patients with MTS compared with the non-MTS group. Becoming and remaining seizure-free after surgery does not result in a better performance in the long term. Predictors of postoperative verbal memory performance at 6 years after surgery were side of surgery, preoperative memory score, and age.

CONCLUSIONS
The results provide evidence for a dynamic decline of verbal memory functions up to 2 years after left temporal lobectomy, which then levels off.
 

CQ:)

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Hi Cint,

Thats no good that the surgery was unsuccessful for you. Even though the surgery didn't work for you did the seizures reduce after the surgery.

Over the last few months I have met different people who have had the surgery. Most of the people I spoke to said at this stage they have been seizure free since the surgery. A couple of the people I spoke to said they still take seizures after surgery but they have gone from having bad seizures to having smaller seizures & their seizures aren't as often.
 

CQ:)

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Hi CQ,


Here is an interesting article about verbal memory and Temporal Lobectomy:
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1867081/
Thanks for the article about memory after surgery. It was an interesting read.

I have been told that you have less chance of your memory improving if you have left temporal lobe epilepsy. I just can't remember the reason why you have less chance of your memory improving :roflmao:.

I'm not sure if I have this right but isn't your speech also controlled by the left side of your brain?
 

Cint

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CQ,

My seizures came back with vengeance, but my surgery was nearly 20 years ago and they could not get all the damaged area that was causing my seizures. Before surgery, I was experiencing CP seizures. 14 months after surgery, I started having TC seizures again in addition to CP, and tried about 8 more medications. In 1997, I had the VNS surgery, which helped me more than brain surgery.
They told me the speech is controlled on the left side. And my memory is bad now. I went to a speech/memory therapist afterwards and it helped somewhat.
 

flinnigan

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Yep speech is left side but memory is both I was told numeric is left and facial is right. I've seen an improvement in my numeric. My surgery was on the right. I really think my memory improvement is more due to not having seizures. I had a great deal of damage in the right side they removed about a golf ball size portion of brain along with the right hippocampus and amygdala. I actually scored very high in my memory test before surgery. I believe I was pretty high functioning because I had had it my whole life and the left side and or other parts of the right had picked up the slack.
 

CQ:)

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Hi all

Today I got a letter & some information from the hospital where I am having the tests done.


At this stage I am booked in to go to the hospital for tests on 8 November but dates may be changed.
:doctor:
 
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