If your seizures continue and are not doing as well as before I really feel you need to discuss this with your doctor. Some patients respond fine to generic while others are much better sticking with brand names.
I know that my doctor and I discussed brand and generic medications for my seizure disorder and he agreed that since my seizures are doing well with brand he did not want me to switch to generic.
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
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.
I attended a support group a few weeks ago where a Terri a woman with severe tonic clonic and other types of seizures brought her service dog with. It was an amazing story of how many broken bones and head injuries the woman had. Her dog has the VNS magnet on his collar and since she has no aura prior to the seizure, the dog jumps up and puts his collar close enough to the VNS to send the signal to stop the seizures. Check the website out called Can Do Canines.org
The service dog also can step on a button on the floor of her home which hooks up to First Alert which can get an ambulance to Terri's home.
The service dogs through this agency are not only to help with seizures, but have helped citizens with diabetes and now children wiht Autism.View Thread
Hello dude, we are very happy that you are asking questions regarding the possibility of surgery. I know four other people who have had lobectomies and that also includes myself. My surgery is a complete success, seizure free for 10 years. I still take two medications because my case was complicated, but to not have seizures started a new journey which includes reaching out to others who need support.
I was having seizures for 26 years before the option of surgery opened up. I decided to look into the opportunity after getting more information from my doctors and asking lots of questions.
I am sure that you will also hear from friend Angie soon!
Ellen, We are very happy that you connected back with the discussion to keep us posted on Eric's journey. I know that it can be difficult for some patients to connect with others especially when it comes to surgery. I never was given a name of a person to connect with prior to my surgery. My next thought was let's just get this done and take the recovery journey one day at a time.
Eric we are with you in thoughts and prayers each day prior to your surgery and after. Keep moving forward and try your best to share your feelings and concerns with your doctors, friends and your wife. The more you get your questions and frustrations out the better you will feel.
I now feel that maybe there was a purpose for me to have been diagnosed with seizures because I have connected with many citizens to share our journey in life with this disorder.
Please aske more questions to your doctor to learn more about the lobectomy. The more questions the more you will understand. The basic information is if medications, specific diets and other alternative natural methods do not work, then the doctors usually check to see if a patient is a candidate for surgery or not.
If a patient is not a candidate for surgery then the VNS may be the next option. Some patients are candidates for one, but not the other.
If you are a candidate for one or the other get information, education videos and also get referrals to other patients who have had the procedures done. It really helps to speak with others who can share their own experiences.
I know four friends who have the VNS and four who have had lobectomies. Some are seizure free and some are not, but for the patients who are not, the seizures have decreased and made our lives much better!View Thread
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