Nancy, no one is panicking here, we are simply giving you some advice to share with your doctors. It is not fair that you have to wait so long as a patient, that is not good patient customer service at all.
What if this was a another patient with a VNS and it was truly an emergency similar to the man Dennis from the other discussion?
I think you should discuss this with your doctor, who would cover for him or her if they were ill and not able to work?
I hope you understand where we are coming from? No one is panicking we are just offering good advice to share with you and your doctor.
Your learning experiencing will benefit each other and other patients for the future.View Thread
Nancy, I agree with Candi's response. There must be a back up physician or another neurologist on one of the Islands who should cover your main neurologist's patients while on leave. especially when it deals with the medical device.View Thread
Just to clarify the VNS approval. It was officially approved by the FDA in 1997. Dennis could not have received the implant if it was not approved yet. The VNS was available in 2001 when my doctors were considering the option for myself.
At the time it was approved it was still new and doctors had to learn carefully how to program and reprogram the device for each patient differently and it will always be a learning experience because it is a medical device.
The main problem came from the Medtronic's defect which affected VNS and pacemakers so let's keep our information correct on this sight. I am not downgrading just giving a little advice.
Dennis has some very good legitimate information with proof of problems that occurred that is what he was trying to inform anyone reading this sight, but there are always good and bad outcomes when it comes to the medical technology. View Thread
Your story and information caught my attention right away. The first time I heard about this was in the reader's digest story. Yes the facts are correct, but this does not happen to everyone.
Medtronics had some very defects with the equipment which first showed up with pacemakers and now the VNS. There are many people who have the VNS implanted and are doing much better with reduced seizures, but their VNS is monitored carefully and frequently.
You are correct about the possible defects that could and have happened, but this is a decision for the patient and doctor to make about having the VNS implanted.
If medications were not controlling your seizures and you were not a candidate for brain surgery, then the VNS may have been your last resort. I do not blame you for bringing the information out to society, but what about the people who are doing fine and have had no problems?
The VNS like medications has side effects, which I just learned about this year from a friend in an Epilepsy Support group. I know two people who had their VNS replaced and several who had their adjusted to make sure that that the patient was safe.
Have you tried alternative options for seizure control? Over the course of my journey with seizures I tried acupuncture, chiropractive care, medications and then it was choice between the VNS or brain surgery. If brain surgery could not have been done I would have gone with the VNS just to see what the outcome would be.
I personally know two other people that would not be living today if they did not have the VNS so there are always two sides to every story.
We need to keep the facts out in the open, but also show the good side of treatment for seizures which some have and some do not.
Amy, It is good to vent and get the frustrations out. As Candi said you may have to turn your hearing off and try to ignore the moaning and groaning and consider the source.
This will be a learning experience for both of you and once you are together as husband and wife you can take a break away from the mother in law and have some freedom.
It may take time and patience to get through this confusion, but in the long run your life is just beginning together. I am so proud of you with your research and questions you have to learn more about seizures.
Amy, Thank you for posting your discussion because you have every right in the world to learn about your fiancé's seizure disorder and what to do and what not to do. I hope you can start going with him to his doctor's appointments with his Epileptologist hopefully he has one. Going with to the doctor you will learn more and more about what Epilepsy is and what our seizures are. I agree with Angie that his mother is very insecure and selfish. She does not want to accept the fact that she is losing her child that she had to protect so much. It is time to speak with her face to face to tell her how much you love her son and how you want to help him live a "quote" normal life without being so protected. His mother is not going to be around forever to take care of him and she needs to realize that you are a blessing to be in his life. You are asking questions to learn about the seizure disorder without hiding it great job! There are so many disorders out there like diabetes which involve the person to take care of themselves, but also the loved ones around to help out. If the mother does not grow up and wake up to realize that you are not bringing on the seizures it sounds like maybe the stress from the way his family treated him and of course the excitement of getting married can add to this. Take one day at a time and if this gets worse your family in-law need to wake up and realize this is the year 2012 not the 1800's. My mother broke the ties fortunately when I was 22 years old to let me move out on my own even though I had been struggling with complex partial seizures since I was 11 years old. My father was not happy and the two of them had big fight about it, but I moved forward, out on my own continued to have seizures but felt freedom. Let your mother-in-law and his family read our responses, because this could be destroying her son's life and yours. You both are in my prayers! DanaView Thread