To switch or not to switch…taking care of your Epilepsy might mean making a tough decision about your doctor
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.
Fall 2006, Johns Hopkins Hospital EMU
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.
2 Responses to “To switch or not to switch…taking care of your Epilepsy might mean making a tough decision about your doctor”
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Grier Korby
March 11th, 2010 at 11:24 am
Change can be very difficult for some people. Some people just do not like change. That is very common, but change can be the best thing for some people. I am one of those people. I was under the care of a Neurologist for over 2 years in attempting to get my seizures under control. We tried the various medications available. We tried them in various combinations. Along with those medications/combinations came the nasty side affects. I felt like a human lab rat, and still refer those years as the “wonder years”. I wondered what medication was next, wondered what side affects were in store for me, and most importantly, I wondered if this medicine would control my seizures?
When they did not work, my wife and I decided to see another neurologist. I was a hard decision for me because I didn’t like the idea of “starting over” with a new doctor. My confidence in the medical field was at a low point, and I couldn’t stand the thought of being a “human lab rat” again.
Fortunately, my new neurologist was Dr. Shah at the DMC. We went over my history of medications, seizure types, and medical history(spinal menengitis as a child). He thougt that I was a good candidate for the surgery. After all the pre testing for the surgery, I had the procedure on 6/3/1999. I have been under control and highly productive for 10.5 years now.
Change can be very hard for many people. For a long time, I did not like change. I liked routines. It started when I was young. My father was in the military, and we moved a lot with his job. Just when you get comfortable with school, friends, your neighborhood, you would be moving again. Now, I accept change much easier than before. My change in neurologists gave me my life back. June 3, 1999 is my “second birthday”, and my wife and I celebrate it each and every year.
Alysse
March 12th, 2010 at 10:09 am
Grier…thanks for your comment! Great outlook–and I love the part about celebrating the birthday/anniversary. I hope you are doing well!! It’s great to hear from you!