I met with my new neurologist this morning. We had a good appointment that was filled with information that I have never had before. My "daydream seizures" began when I was still in grade school. In 1981 when I was 19, I experienced my first major seizure. Since then, I would guess that I have had well over 1,000 seizures. Through the years, I have tried one seizure drug after another. Some worked fairly well, some worked most of the time and the one that I have been on for almost 10 years, has worked the best. Still, seizures manage to break through anyway. I had just taken it for granted that that was how life would always be for me. You take it or you leave it. I chose to take it.
For over 20 years, I have dealt with depressions more often than what "normal" people have. I blamed them all on my bi-polar disorder. Today, I learned that that was wrong. Today, my doctor explained much to me about these health disorders. Until today, I had no idea that most people who have seizures also develop frequent depressions. I also learned that there is hope for people like me.
The help is surgery and my doctor and other staff members are arranging for me to have this surgery that should improve my health (and my life) tremendously. Our goal is to have my surgery completed within the next two weeks.
My surgery will involve a disc being placed under the skin. There will be two incisions. One will be on the left side of my neck while the other is below my collarbone on the left side of my chest. Wiring that bends will connect the chest generator to the left Vagus Nerve in my neck. The generator will transmit stimulation to the nerve which will then be sent to my brain 24 hours every day. For some, this stimulant will cause an end to all seizure activity by itself. But, as I understand it, most people will still need to stay on oral medications. Many of those people will not need to take as much of the oral meds though.
Inside the generator is a magnet. On my left arm, I will wear what basically looks similar to a black wrist watch or I will need to wear an apparatus on my belt. Another magnet will be located in it. Whenever I receive my natural alerts that I am about to have a seizure, I will align the wristband to my generator in my chest for just a couple of seconds. By doing this, additional stimulant will be sent directly to my brain. If I am unable to unite the magnets, someone with me can do it. The result will be the seizure will just abort, or it will be shortened and/or the effects of this seizure will be minimized. The recovery time after the seizure will be shortened also.
By having this surgery, not only should my seizures be improved, but I will also notice that I am more alert and my moods should be much more leveled out.
Every time a person has a seizure, damage is being done to the brain. If a person only has one seizure in his lifetime, there will be a certain amount of damage done. The more seizures a person has, the more damage that is done. In my case, I was blessed with my father's ability to do math problems quickly in my head. Family and friends challenged me to doing math problems with them. I would only do the problems in my head while they used a calculator to see who came up with the correct answer first. Most of the time, I won. Over the past year, I have noticed that it is taking me a lot more time to come up with the correct answer. Sometimes, I need a pencil and paper to work the problem out. This has been tough for me to accept.
It used to be that once I met someone, I almost always remembered the name, face and a bit of their personal history. Now there are times when a name rings a bell or a face looks familiar but I cannot put the two together. The person's individual history is sometimes completely scrambled. Again, this has stressed me.
I am also receiving complaints that a person told me this or that. A few hours, or in some cases, a few minutes, later, I have completely lost this information never to be found again.
Over the past couple of months, I began to fear that I might have Alzheimers, a fate I surely did not want to have to face.
I discussed all of this with my doctor today. Tests were done and now I have answers to my questions. The great thing is that I do NOT have Alzheimers. I have some major brain damage that cannot be repaired. But for people like me, this isn't the end of the road. Many of us no longer have to settle with having seizure activity followed by more brain damage. In many cases, we can have this surgery which should greatly improve our seizures.
The surgery will not provide a "cure" right away. For most patients, this therapy will take anywhere from a few months to one or two years to provide full relief. Once that is attained, better control over my seizures, stronger memory and increased alertness will be available to me.
This is what we are currently facing that most people won't have to. Because of the fact that I am having another surgery on Tuesday, I am requiring two shots of blood thickeners every evening so that I don't bleed out during or after the operation. Ordinarily, my surgeon would tell me when it is safe to go back on my oral blood thinners after the surgery plus I will have to have shots of intensive blood thinners given to my stomach area for several days until my blood has reached the optimal thinness. But since I need to have this surgery, we are hoping to have it soon while my blood is thicker and therefore safer for surgery. So, at this time, I am praying that this second surgery will be done soon after Tuesday's operation. But at the same time, I am a bit anxious about having thicker blood for a longer periond of time because it could cause blood clots to form in my mechanical heart valve that could not only ruin the valve but it could also result in heart attacks or strokes.
One detail that we just learned is that I will not be able to drive a vehicle for at least 6 months. I will be completely reliant on other drivers or I will walk wherever I need to go. I am not looking forward to this inconvenience but a lot more walking might be the best thing for me all the way around.
So, anyway, Stan and I are quite pleased with the knowledge we gained in regards to my seizure activity and a highly proven treatment for the seizures and prevention of any further brain damage. We praise the Lord for blessing us with the new technology. This particular therapy was not available before 1997. It looks like this will be around for a good long time too. Autopsies have been done on patients who have had this therapy to see if the therapy caused any kinds of damage to the person's body. In all cases, NO damage was done.
There are some side effects that might go away as time passes. They include temporary hoarseness, changes in the tone of my voice, coughing, tickling sensation in my throat and shortness of breath. Believe me, I am very willing to accept these side effects if it means that my seizures might improve and my future brain damage could be minimized. Pressure will always remain where the generator is implanted. One thing that I can already see is that I will be able to return to my former public activities including such things as going back to church, etc. About two years ago, I had a major seizure while I was in church. It was so bad that an ambulance had to be called. There have been many other times that seizures have broken out while I was in public areas. Needless to say, I have been reluctant to venture out as often as I once did.
Now, tomorrow, Stan will take me to see my cardiologist in Dodge City. More tests will be done there also. I'll let you know how they turn out. I expect only positive things in regards to my heart.
Thank you for your prayers!