Posted by Johnna
on September 14, 2000 at 22:15:49:
In Reply to: Re: I need answers my doctor isn't giving them posted by Tess on September 13, 2000 at 18:30:34:
: : : My son was flown out to Salt Lake City UT for an MEG study which is an MRI and EEg mixed together. In their findings they saw abnormal scattered activity in his right temporal lobe with some frequent bursts in his left lobe. He was to undergo several others tests because in the findings it didn't clearly show any signs of eptileptic activity. But as I read and search for answers it seems to me (and you can tell me that I am wrong) that this activity in his brain is classified as an eptileptic disorder? Please help me, he is only 4 years old and I live in Nebraska and don't have a child neurologist within 6 hours of me and I hate the doctor he has. He should have been doing follow ups with him and he never has for over a year now (since we got our findings back from Utah. I need some help I am tired of being alone trying to play doctor. Thakn you for any information you could give me.
: : The reason your doctor isn't giving you the information you need is because they usually don't
: : know the answers themselves. I've been dealing with them since my son was 10 and he's 30! He has been on every medication and even had surgery in 1992. I wouldn't recommend the surgery to anyone under any situation. You don't operate on the brain and come out the same person! He had a Vegas Nerve stimulator implant 2 years ago and that hasn't controled the seizures either. I wish you the best trying to find a doctor where you live. We live in a very small town but only have to drive 45 minutes to his doctor. She's very nice but they will be the first (or should be) to admit them just don't know what epilepsy is all about. Best wishes. I will pray for you and your child!
: : I also have a son with epilepsy. He was diagnosed at age 9 and is now 14. Working with Dr.'s can be frustrating, I guess because they can't give you any clearcut answers. They don't know the cause, don't know which medicines will work, just experiment. You might talk to your County Nursing Service, and see if they have a neurologist from a major city who comes down regularly to your area. That's what we do. We live out in the boondocks too! Hang in there, and don't let them intimidate you. Ask the questions you want answered even if they do look at you like you're an idiot!
I am 36 and was diagnosed with a seizure disorder when I was 27. Reason unknown. I've seen
4 doctors. When one doesn't know what to do they send you to another one. # 3 actually talked
me into surgery. Tonya is right, to a certain extent. Surgery has helped some people with severe
epilepsy to lead a normal life. On the other hand if your dealing with minor cases, for instance,
partial seizures. I would find a good doctor, a second opinion and think twice. 3 things I didn't do.
Shes right about being a different person. My only deficit is my short term memory. My surgery
was in 1994. I have ( I'm told) one of the best doctors in the country now. Unfortunately its a 3 1\2
hour ride, out of state.Even he still can't tell me where the seizures are coming from or why.
But he's interested, he answers my questions to the best of knowledge and he tries. He has
suggested the vagas nerve stimulator but I desided against it. Unfortunately there are some cases
that can't be explained. I happen to be one of them. I've learned to deal with it, but it took a long time.
I'm not telling you to give up. Do the best you can to find a good doctor. Even if you have to travel.
Ask lots of questions. I'm on a combination of 2 medications and have been seizure free for over 8
months! I can drive now!
DON'T GIVE UP! I WISH YOU THE BEST OF LUCK IN YOUR QUEST!