I received some disappointing news and shocking – it was a first. I’ve been with my Neurologist for 8 years. We’ve tried everything to get my seizures under control. We’ve consulted with the epileptologist in the group once years ago. The conclusion was that my Dr. was doing everything that he could. Over the years, I’ve been in and to so many Dr’s and different facilities due to epilepsy, it’s sickening to think about.
My current neurologist works out of a level 3 comprehensive epilepsy treatment center. At my last appointment on Tuesday when I told him about the problems I was having, he said with a heavy heart, “David, it’s not that I don’t want you here, but I need to transfer your care to a level 4 comprehensive epilepsy treatment center (which will be UCI) where you’ll be with a team of 5 epileptologists. Over there they have access to things I don’t.” It broke my heart.
Finding and developing a good relationship with a Dr. is so hard, and that’s what I had with him. I asked what are they going to do that we haven’t? I’m not interested in more medications (26 is enough) and I’m not a surgery candidate. I’ve already had a VNS, so what are they going to do that we haven’t? He explained that he feels, since my epilepsy case is so difficult, that’s where it’s best for me at this time because they’ve got access to new research programs, etc..
So, I’ll go BACK to the epileptologists at the UCI Comprehensive Epilepsy Treatment Center and see if they can do anything or make some changes that will improve my life…. I’m not hopeful. We found my first epileptologist over there when I was 19 years old.
On another note, I’ve been trying to manage some “issues” for months now. Since my mTBI in December, I have been dealing with things that are overwhelming me. Tuesday at the Dr. I was officially diagnosed with PTSD and also PCS (Post Concussion Syndrome). Although I’m glad to finally have a diagnosis so that I can move forward with treatment, I was also saddened by the news. At times it’s been difficult just to breath.
God bless all of you that are fighting these horrible conditions.