I can only start this post with a sigh, so here it is:
*sigh*
Last week I reported nine days seizure free and two/three seizures in three weeks. Thursday I had a TC which wrecked everything and I haven't gotten better since. Yesterday I had my blood levels done for my Phenytoin and they are still too low despite the dosage increase. My doctor has increased my dosage of Phenytoin but she said that if my levels don't rise into therapeutic range during the lowest trough by next month, she's sending me to a neurosurgeon straight away. I was waiting till Jan to do VNS when I could get coverage for it but she says we have to stop the TCs, so I guess the way it looks is that she's recommending the surgeries my medical insurance does cover because she thinks it's better to treat the seizures now--temporal lobectomy deep brain stimulation.
I was feeling pretty relaxed about having a whole six months to NOT think about surgery. I was also feeling relaxed about the choice of VNS because it's such a noninvasive procedure. I can already feel my heels digging into the ground about this issue. I just do not want brain surgery. I was referred to a surgeon before to find out if I was viable for a lobectomy, which I am, and then I ran away because I was scared. I did the inpatient EEG again about six years ago when my epilepsy doctor recommended it. (second surgery recommendation I received. Today's recommendation is the fourth recommendation for surgery I've been given by a doctor) Then I ran away again. So now I'm thinking I'm going to do the same thing.
I'm scared of these things: I don't want to lose my capacity to write and my love for literature. My life is meaningless without that stuff. I don't want to lose any more words.
And I don't want to turn into a carrot.
And I'm also scared of this undefinable thing that doesn't have a shape or a definition. Actually, that's the biggest fear of the lot.
And, by the way, brain surgery is just so...melodramatic. So extreme. The risks!
What danger does having TCs and partials weekly actually pose?
I'll admit that my quality of life suffers severely, but surgery can take away my quality of life permanently whereas medication can be chopped and changed. I don't know what I'm scared of. I just know that I'm scared. And I've read all the data, so information is not going to take that fear away. When the option isn't imminent, I do want surgery. But when it draws in closer, I don't want it.
Here is the neurosurgeon my doc is sending me to. He makes you feel safe, right? : http://www.neurosurgery.co.za/about.html
*sigh*
Last week I reported nine days seizure free and two/three seizures in three weeks. Thursday I had a TC which wrecked everything and I haven't gotten better since. Yesterday I had my blood levels done for my Phenytoin and they are still too low despite the dosage increase. My doctor has increased my dosage of Phenytoin but she said that if my levels don't rise into therapeutic range during the lowest trough by next month, she's sending me to a neurosurgeon straight away. I was waiting till Jan to do VNS when I could get coverage for it but she says we have to stop the TCs, so I guess the way it looks is that she's recommending the surgeries my medical insurance does cover because she thinks it's better to treat the seizures now--temporal lobectomy deep brain stimulation.
I was feeling pretty relaxed about having a whole six months to NOT think about surgery. I was also feeling relaxed about the choice of VNS because it's such a noninvasive procedure. I can already feel my heels digging into the ground about this issue. I just do not want brain surgery. I was referred to a surgeon before to find out if I was viable for a lobectomy, which I am, and then I ran away because I was scared. I did the inpatient EEG again about six years ago when my epilepsy doctor recommended it. (second surgery recommendation I received. Today's recommendation is the fourth recommendation for surgery I've been given by a doctor) Then I ran away again. So now I'm thinking I'm going to do the same thing.
I'm scared of these things: I don't want to lose my capacity to write and my love for literature. My life is meaningless without that stuff. I don't want to lose any more words.
And I don't want to turn into a carrot.
And I'm also scared of this undefinable thing that doesn't have a shape or a definition. Actually, that's the biggest fear of the lot.
And, by the way, brain surgery is just so...melodramatic. So extreme. The risks!
What danger does having TCs and partials weekly actually pose?
I'll admit that my quality of life suffers severely, but surgery can take away my quality of life permanently whereas medication can be chopped and changed. I don't know what I'm scared of. I just know that I'm scared. And I've read all the data, so information is not going to take that fear away. When the option isn't imminent, I do want surgery. But when it draws in closer, I don't want it.
Here is the neurosurgeon my doc is sending me to. He makes you feel safe, right? : http://www.neurosurgery.co.za/about.html