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Reply: searching for info

Will you stop downgrading medications that did not work for you Do you realize that...

Posted by clarinet2

6 Replies | Reply | Watch This DiscussionReport This| Share this:searching for info Will you stop downgrading medications that did not work for you Do you realize that...

Reply: Seizures and new medications

Hula dancer is correct about the main ingredients which are the same and the fillers can...

Posted by clarinet2

6 Replies | Reply | Watch This DiscussionReport This| Share this:Seizures and new medications Hula dancer is correct about the main ingredients which are the same and the fillers can...

Reply: Seizures and new medications

If your seizures continue and are not doing as well as before I really feel you need to...

Posted by clarinet2

6 Replies | Reply | Watch This DiscussionReport This| Share this:Seizures and new medications If your seizures continue and are not doing as well as before I really feel you need to...

Reply: Is surgery a "last resort" or overlooked for epile...

Haylen, I agree that the option for surgery is overlooked quite often because the term...

Posted by clarinet2

Haylen, I agree that the option for surgery is overlooked quite often because the term brain surgery seems to frighten patients especially after reading some of the responses to this discussion. Physicians also want their patient to prepared to make decisions.

Yes medications are the very first option, but with today's variety of medications the specialists usually know which medication or medications to start with to see how the patient responds. The patient may need to have medications adjusted to their body's response. Some can be controlled with medications and some do not.

Brain surgery is much more precise and will NOT be done unless the doctors pinpoint the starting point of the seizures. My seizures were coming from multiple sides of the brain, but the majority were starting from a small area which had scar tissue built up and it was on the side of my brain which was not my dominent side controlling major things such as my speach, vision, hearing, memory or any comprehension.

I just wanted to share the facts that I researched by contacting two neurological specialists. The VNS is the alternate method of treatment if medications are not working AND if the patient is not
a candidate for surgery. The doctor's decide if surgery is safe or the VNS would be more effective. From there it is up to the patient or the patient's family to make the final decison what they want done.

Every person I have met that has the VNS was not a candidate for brain surgery and medications were not helping enough so that is why it was implanted.

Not everyone has auras prior to their seizures to swipe the magnet over the VNS. That is why the VNS has to be adjusted for some patients with no auras.

Since my surgery I have gone from 15-20 seizures per month to zero. My medications have been decreased to only two medications per day and I will never downgrade surgery, VNS or the technology that we have been blessed with.

We need to educate society and patients that every person's body is different and what happens to one person with medications, surgery or the VNS can be completely different to another person.View Thread

Posted byclarinet2

12 Replies | Reply | Watch This DiscussionReport This| Share this:Is surgery a "last resort" or overlooked for epilepsy? Haylen, I agree that the option for surgery is overlooked quite often because the term...

Reply: Info regarding surgery

Jason, my seizure disorder was very similar to yours and Angies. Seizures started when I...

Posted by clarinet2

Jason, my seizure disorder was very similar to yours and Angies. Seizures started when I was about 11 years old back in the mid 1970's . The seizures started from multiple sides of the brain, but the majority of the seizures started from the side that could have the surgery.

I had to fight to find a job within my capability, but i did not give up and just took whatever part time, temporary and volunteer jobs I could find.

I was lucky to find a full time job back in 1986 prior to my surgery at the Minneapolis VA Medical Canter. It was not my first choice, but I applied and did not give up. I did have some issues in the beginning with discrimination due to the seizures. I contaced the local Epilepsy Foundation and the VA union helped me to find another job in the same hospital that was in an area with much better staff who understood seizures better and could handle the issue without panic.

I never was allowed to drive just like you, but I did not let that stop me from getting around. In 1986 I moved from my small home town in Wisconsin to the Minneapolis area by myself . The transit system was much better in the Minneapolis area and there was a metromobility bus and van service for citizens who could not drive due to medical issues.

Like Angie I did not think about myself as being handicapped because no one would even know that I had a seizure disorder until I told them or had a seizure around them.

After my surgery back in 2001 I did learn to drive at the age of 40, but it is very expensive with the price of gas, insurance and car maintenance. I know two other friends who had brain surgery, but decided not to learn to drive because they had adapted their lives without a car.

I know that giving up my driving when I become older will not be difficult as it is for some people because I know what my options will be to get around for appointments and other activities.

Keep moving forward and we hope that you can connect through your doctor with other citizens who have had brain surgery for seizures to help answer your questions and guide you through your journey.

DanaView Thread

Posted byclarinet2

8 Replies | Reply | Watch This DiscussionReport This| Share this:Info regarding surgery Jason, my seizure disorder was very similar to yours and Angies. Seizures started when I...

Reply: service dog

The website's exact title is: www.can-do-canines.org

Posted by clarinet2

6 Replies | Reply | Watch This DiscussionReport This| Share this:service dog The website's exact title is: www.can-do-canines.org

Reply: service dog

I attended a support group a few weeks ago where a Terri a woman with severe tonic clonic...

Posted by clarinet2

6 Replies | Reply | Watch This DiscussionReport This| Share this:service dog I attended a support group a few weeks ago where a Terri a woman with severe tonic clonic...

Reply: Info regarding surgery

Hello dude, we are very happy that you are asking questions regarding the possibility of...

Posted by clarinet2

8 Replies | Reply | Watch This DiscussionReport This| Share this:Info regarding surgery Hello dude, we are very happy that you are asking questions regarding the possibility of...

Reply: Has anyone over 50 had the temporal lobectomy ?

Ellen, We are very happy that you connected back with the discussion to keep us posted on...

Posted by clarinet2

55 Replies | Reply | Watch This DiscussionReport This| Share this:Has anyone over 50 had the temporal lobectomy ? Ellen, We are very happy that you connected back with the discussion to keep us posted on...

Reply: HELP!!!!!!

Please aske more questions to your doctor to learn more about the lobectomy. The more...

Posted by clarinet2

2 Replies | Reply | Watch This DiscussionReport This| Share this:HELP!!!!!! Please aske more questions to your doctor to learn more about the lobectomy. The more...

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