If you’re like most of us with Epilepsy, at some point in your battle with this disease, you will switch neurologists. Sometimes it has to happen because you will relocate…or you might just need a change. In more than 7 years, I’ve switched 3 times. Either way, it’s something you shouldn’t fear.
The first time, I truly adored my neurologist here in metro-Detroit. After all, he saved my life! But, my husband and I (he was my fiance’ back then) felt I needed an epileptologist (for those of you who don’t know…it’s an Epilepsy specialist). So, I found a fantastic specialist at Johns Hopkins in Baltimore. Dr. Ron Lesser was full of facts, direct and extremely informative. He never minced words with me when it came to getting me to realize that my life had changed. I was under his care for just 4 years, and in that time, my seizures were located, my ridiculous allergies to virtually 80 % of all anti-seizure medications were discovered, I tried the Ketogenic Diet with another Hopkins doc, Dr. Eric Kossoff, and I made an attempt at Epilepsy Surgery.
When we moved to my native Detroit-area in the summer of 2007, I found another epileptologist, my third neurologist, Dr. Aash Shah, and although his style and his demeanor is so different than my other doctors, I couldn’t be happier. We made yet another attempt at Epilepsy surgery, this time these doctors were quite aggressive since it was my second attempt. But, it was much too risky to do the surgery. I would have lost too much in language skills, cognitive abilities and balance. So, along with my surgeon and Dr. Shah, we decided to have the Vagus Nerve Stimulator implanted right away.
Why have I been so happy and so lucky with my doctors? Believe me, I have spoken to other doctors about my care. I’ve chosen my neurologists very carefully and very strategically. Here’s a short list of suggestions when it comes to choosing a neurologist…it was passed along to me by a doctor as I was leaving Maryland and moving to Michigan:
-What does the doctor expect the patient to discuss at regular visits AND why? How long does the doctor expect visits to last?
-If you are not seizure-free, what sort of treatment options should a patient expect, i.e. testing/clinical trials/medicine switches/surgery?
-What information/support does the doctor expect from the patient at each visit? Seizure logs? List of medications? Family members to help take notes? Video/photo of seizures?
The Epilepsy Foundation of America has some very good ideas on choosing a neurologist. The Epilepsy Foundation of Michigan‘s Website also has a great checklist that you can take with you to your appointment, when you are interviewing a new doctor, or visiting with your current neurologist. Also, check out Seizuretracker.com, it’s a fantastic site to make logging and tracking your seizures SO much easier and simpler! Either way, switching doctors…or even getting a second opinion shouldn’t be something you fear. It’s a necessary part of your care.