Twilight, we want you to know that with your medication experiences with other medical issues you need to be patient with side effects and exactly how long it takes to get the medications through your system before you may start seeing results.
I would recommend that you take your prescription list to a pharmacist and have a one on one counsel session with him or her to find out the effects of all of the medications you are taking for spinal stenosis and fibromyalgia and your anti seizure medications especially when they all have been prescribed at the same time.
It can take time for medications to be adjusted and of course you are aware of this due to the other medications you are on.
If you are still have problems with both consider other options. I know friends who have fibromyalgia and have tried alternate methods such as acupuncture, water therapy and other natural choices.
The consulting with a pharmacist will help you understand the possible side effects of all your medications and the what can counter-interact with your medications as you are being adjusted.
I am a friend of Angie's who had the same type of surgery done, that is how we met.
Amy, A happy late congratulations to you. After what you wrote I have come to the same conclusion that Angie had for you.
Also the average man does not always want to discuss activities the same way women do. Your husband is now in a new life and if you can watch closely to exactly what happens during the seizure and document it.
Keep the journal and hopefully sooner or later your husband will relax and will be able to discuss stuff like this openly and with less denial.
I had the same question three years ago due to the pressure and sensitive area on the temporal lobe. It was 8 years since the surgery and I asked the doctor if this was common.
It has been over 11 years since my right temporal lobectomy and I still have a sensitive bruise type feeling on that side. The doctor said that this can happen because where the brain and skull healed back this may have affected some of the nerves in that area.
I also found out that I have a mild allergies and when the barametric pressure changes I get alot of pressue on both sides of the sinus areas.
If it becomes too uncomfortable discuss this with your doctor to find out what your options will be.View Thread
Nancy, the responders to your email are not panicking, we are simply trying to give you information to pass on to your doctor for your quality care and service.
Having to wait in this situation is not good patient care. What if your doctor became very ill or had an emergency who would cover for them?
This can be a very good learning experience for your doctor because what if your doctor had a patient with the VNS who had a life threatning experience with the VNS similar to Dennis from the previous VNS discussion?
This could help you to help other future patients so they did not have to wait to get their VNS adjusted. what we are trying to share with you is that your doctor need back up coverage.
This is not downgrading, just simple facts that should be looked at by doctors to help their patients.View Thread
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.