Best not always the best: Finding the right epilepsy specialist for u

Posted by lsittll @lsittll, Jun 30 10:09pm

I’ve been to the University of Pennsylvania, Johns Hopkins and University of Maryland Medical Hospital. They have reputable doctors but the best of them have been the very worse for me. It all depends up the individual that is for sure! I usually have to switch doctors at a clinic several times before I get the right doctor and I don’t care if its not the “best”.But of course I don’t want the worst.

@lsittll, Great topic. I expanded the title to reflect the discussion. Finding the right specialist for YOU certainly goes beyond reading reviews. With a chronic condition like epilepsy, you're working with someone as a team. You want that team member to work with you, to provide medical expertise, but also to respect and consider your experience and your expertise about you.

You might appreciate some of the tips members have shared in these related discussions:
– Your Tips on How to Get Off to the Best Start with a New Specialist https://connect.mayoclinic.org/discussion/your-tips-on-how-to-get-off-to-the-best-start-with-a-new-specialist/
– How to evaluate a cancer doctor? https://connect.mayoclinic.org/discussion/how-to-evaluate-a-doctor/

I'd like to also bring @lynette1975 @gimmegum @jakedduck1 @mxyzptlk32 @possumm @fbutterw20 @ehowey18 @crstyday40 @patrassi @jktaheri) and others into this discussion.

@lsittll, why don't you kick us off. What do you look for in a doctor? What is important for you to be able to trust in the care you get? What traits do you value?

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@ Collen Young There are many factors that look in when choosing a doctor. I want and need a doctor who treats me as an individual patient. Not all patients are alike. I need a doctor who is knowledgeable about the side effects including rare side effects (as I am rare) of my antiseizure drugs and their interactions with the other medications that I take. If the doctor has any doubts they look in the PDR! Certainly no "know it all" doctor for me! A doctor with a good bedside manner definitely is needed. Also a doctor who is understanding and respecting of my needs and wants

Liked by Kristin, Leonard

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@lsittll
Colleen said it better than I. But you sometimes you have to let doctors be doctors but that doesn’t mean you don’t have the final say, doesn’t mean they don’t have to explain everything until you thoroughly understand it either. Sometimes we do have to compromise though. I compromised with one doctor by finally agreeing to take Lyrica. I didn’t like anything about the drug that I had heard. Seeing how I seldom have side effects from meds I really had no justification to refuse that drug so I decided to give it a try. Turned out my intuition was right. I stopped it and ended up filing a complaint with the FDA.
There are unfortunately incompetent and uncaring doctors out there. I think we’ve probably all had our share of them. If every doctor was a top doctor medical errors wouldn’t be the third leading cause of death in this country.
You know how epilepsy and memories are so I don’t remember if you’re still actively having seizures or not but I was curious if you have ever been to or consider going to the Mayo Clinic Epilepsy Center? I doubt if you did that you would be disappointed.
If your seizures are still active in spite of treatment have you ever had or ever considered epilepsy surgery? Personally I refuse to have it done myself, I have known a lot of people who have benefited from it and sadly some who have died, others who have gotten worse while some have lost function. I’m not a big gambler so to me it’s too big a gamble. Fortunately my parents believe the same way I am often wonder if it was because of the side effects my father suffered from his brain tumor surgery. Sorry I didn’t mean to go off into a tangent.
Take care of yourself,
Jake

REPLY
@jakedduck1

@lsittll
Colleen said it better than I. But you sometimes you have to let doctors be doctors but that doesn’t mean you don’t have the final say, doesn’t mean they don’t have to explain everything until you thoroughly understand it either. Sometimes we do have to compromise though. I compromised with one doctor by finally agreeing to take Lyrica. I didn’t like anything about the drug that I had heard. Seeing how I seldom have side effects from meds I really had no justification to refuse that drug so I decided to give it a try. Turned out my intuition was right. I stopped it and ended up filing a complaint with the FDA.
There are unfortunately incompetent and uncaring doctors out there. I think we’ve probably all had our share of them. If every doctor was a top doctor medical errors wouldn’t be the third leading cause of death in this country.
You know how epilepsy and memories are so I don’t remember if you’re still actively having seizures or not but I was curious if you have ever been to or consider going to the Mayo Clinic Epilepsy Center? I doubt if you did that you would be disappointed.
If your seizures are still active in spite of treatment have you ever had or ever considered epilepsy surgery? Personally I refuse to have it done myself, I have known a lot of people who have benefited from it and sadly some who have died, others who have gotten worse while some have lost function. I’m not a big gambler so to me it’s too big a gamble. Fortunately my parents believe the same way I am often wonder if it was because of the side effects my father suffered from his brain tumor surgery. Sorry I didn’t mean to go off into a tangent.
Take care of yourself,
Jake

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Dear Jake:

I understand your views on things. I have had seizures since 6 1/2 had brain surgery twice to no avail, I have taken almost every medication there is to try. I will be no more guinea pig and let the doctors learn from me! Now that I have found zonisamide that has decreased my seizures to once monthly and seizures are all nocturnal, I will not complain! They do not interfere with my life at all. Seizures have been like this since I saw my doctor last May. When I can get an appointment to see her next I will and maybe there will be an increase in medication that will make things for the better. For the time being I could not laslt for better.

Laurie

Liked by Leonard

REPLY
@colleenyoung

@lsittll, Great topic. I expanded the title to reflect the discussion. Finding the right specialist for YOU certainly goes beyond reading reviews. With a chronic condition like epilepsy, you're working with someone as a team. You want that team member to work with you, to provide medical expertise, but also to respect and consider your experience and your expertise about you.

You might appreciate some of the tips members have shared in these related discussions:
– Your Tips on How to Get Off to the Best Start with a New Specialist https://connect.mayoclinic.org/discussion/your-tips-on-how-to-get-off-to-the-best-start-with-a-new-specialist/
– How to evaluate a cancer doctor? https://connect.mayoclinic.org/discussion/how-to-evaluate-a-doctor/

I'd like to also bring @lynette1975 @gimmegum @jakedduck1 @mxyzptlk32 @possumm @fbutterw20 @ehowey18 @crstyday40 @patrassi @jktaheri) and others into this discussion.

@lsittll, why don't you kick us off. What do you look for in a doctor? What is important for you to be able to trust in the care you get? What traits do you value?

Jump to this post

@colleenyoung I find that having a doctor who deals with your seizures as a team is important.

I saw a doctor for the first time. I just switched from Johns Hopkins University to University of Maryland Medical Center. She was discontinuing vigabatrin. I mentioned switching to Dilantin because it was successful earlier but she said no that affected your liver..
I said that I get a strange feeling with my seizures that makes me feel like I am causing the things. She tried to set up EEG monitoring to check to see if I was indeed having seizures. She knew I had an established history of epilepsy. If she had consulted with other doctors on the team my doctor would have told her that patients with psychomotor seizures feel a sensation like that, a deja'vu feeling before their seizures. She told me this when I asked her the same thing. Last time I saw that doctor!

Liked by Leonard

REPLY

@lsittll
I live in rural America so not a lot of choice. Either due to this or my personality, perhaps both, I accept responsibility for the quality of care and appointments I have. Easy to say, right? There are a few tips and tricks anyone can use though.

I am an introvert so over the years I have had to learn to fight the inclination to just sit and listen. Before I address that though, I want to say I have learned to listen. Listening is a learned skill and to hone it I tape sessions and take notes from that. Writing helps me retain. At the next session I ask questions about the previous. Asking questions shows the doctor a couple of things, the obvious…I am listening and interested but more importantly I am willing to put effort into this.

How does this make for a better experience with a doctor? I have never met anyone that doesn't like to talk about what they are interested in. Bring on the know-it-all because they probably do. If you can keep them talking, it is hard to tell what you might learn. I suspect most are just itching to tell someone about their latest thoughts. Sometimes I can connect the dots for the doctor because one of the things a know-it-all knows is I know me better than anyone.

How can an introvert join a conversation with the smartest person in the room and not look like an idiot? It takes a level of confidence to do this. I constantly remind myself I am the expert regarding me. I know how I reacted to the medicine and the doctor needs that info. I document my reactions so we have something to talk about other than my feelings. In some respects I am the smartest person in the room. I constantly remind myself of that. It has gotten easier over the years.

Nevertheless, when working with someone new I can let the introvert part of me begin to take over. Over the years I have recognized this about myself so to preclude me incessantly worrying about saying something stupid and failing to ask good questions, I lead with the stupidest thing I can thing of. Then I don't worry anymore about saying something stupid because I already have. If you are laughing at this point it is ok. It makes me laugh too but it works for me.

Another trick I use when I know I want to ask a question but the introvert has kicked in is to just blurt out whoa, whoa Nelly, slow down. Well I just interrupted the doctor's dissertation now I have to say something right? Generally it is the first thing that pops into my head which is what I wanted to ask anyway. If I have completely surprised myself then I ask them to say what they just said except slower because they just went over my head. Invariably it is the truth and stroking a doctor's ego is not beneath me.

I go out of the way to tell them where I have failed. Over the years I have found it builds trust faster. Once they know I am telling them all the bad stuff then they quit grilling me and we spend the majority of the time on stuff we are both interested in.

In short, a doctor with a horrible bedside manner is a challenge worthy of your many talents. When they start telling you about their life outside of medicine is how you determine victory. Yes, I keep score.

When a doctor looks forward to seeing you because you are his/her best patient, you will have a better experience.

REPLY
@mxyzptlk32

@lsittll
I live in rural America so not a lot of choice. Either due to this or my personality, perhaps both, I accept responsibility for the quality of care and appointments I have. Easy to say, right? There are a few tips and tricks anyone can use though.

I am an introvert so over the years I have had to learn to fight the inclination to just sit and listen. Before I address that though, I want to say I have learned to listen. Listening is a learned skill and to hone it I tape sessions and take notes from that. Writing helps me retain. At the next session I ask questions about the previous. Asking questions shows the doctor a couple of things, the obvious…I am listening and interested but more importantly I am willing to put effort into this.

How does this make for a better experience with a doctor? I have never met anyone that doesn't like to talk about what they are interested in. Bring on the know-it-all because they probably do. If you can keep them talking, it is hard to tell what you might learn. I suspect most are just itching to tell someone about their latest thoughts. Sometimes I can connect the dots for the doctor because one of the things a know-it-all knows is I know me better than anyone.

How can an introvert join a conversation with the smartest person in the room and not look like an idiot? It takes a level of confidence to do this. I constantly remind myself I am the expert regarding me. I know how I reacted to the medicine and the doctor needs that info. I document my reactions so we have something to talk about other than my feelings. In some respects I am the smartest person in the room. I constantly remind myself of that. It has gotten easier over the years.

Nevertheless, when working with someone new I can let the introvert part of me begin to take over. Over the years I have recognized this about myself so to preclude me incessantly worrying about saying something stupid and failing to ask good questions, I lead with the stupidest thing I can thing of. Then I don't worry anymore about saying something stupid because I already have. If you are laughing at this point it is ok. It makes me laugh too but it works for me.

Another trick I use when I know I want to ask a question but the introvert has kicked in is to just blurt out whoa, whoa Nelly, slow down. Well I just interrupted the doctor's dissertation now I have to say something right? Generally it is the first thing that pops into my head which is what I wanted to ask anyway. If I have completely surprised myself then I ask them to say what they just said except slower because they just went over my head. Invariably it is the truth and stroking a doctor's ego is not beneath me.

I go out of the way to tell them where I have failed. Over the years I have found it builds trust faster. Once they know I am telling them all the bad stuff then they quit grilling me and we spend the majority of the time on stuff we are both interested in.

In short, a doctor with a horrible bedside manner is a challenge worthy of your many talents. When they start telling you about their life outside of medicine is how you determine victory. Yes, I keep score.

When a doctor looks forward to seeing you because you are his/her best patient, you will have a better experience.

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Very well said….

REPLY
@mxyzptlk32

@lsittll
I live in rural America so not a lot of choice. Either due to this or my personality, perhaps both, I accept responsibility for the quality of care and appointments I have. Easy to say, right? There are a few tips and tricks anyone can use though.

I am an introvert so over the years I have had to learn to fight the inclination to just sit and listen. Before I address that though, I want to say I have learned to listen. Listening is a learned skill and to hone it I tape sessions and take notes from that. Writing helps me retain. At the next session I ask questions about the previous. Asking questions shows the doctor a couple of things, the obvious…I am listening and interested but more importantly I am willing to put effort into this.

How does this make for a better experience with a doctor? I have never met anyone that doesn't like to talk about what they are interested in. Bring on the know-it-all because they probably do. If you can keep them talking, it is hard to tell what you might learn. I suspect most are just itching to tell someone about their latest thoughts. Sometimes I can connect the dots for the doctor because one of the things a know-it-all knows is I know me better than anyone.

How can an introvert join a conversation with the smartest person in the room and not look like an idiot? It takes a level of confidence to do this. I constantly remind myself I am the expert regarding me. I know how I reacted to the medicine and the doctor needs that info. I document my reactions so we have something to talk about other than my feelings. In some respects I am the smartest person in the room. I constantly remind myself of that. It has gotten easier over the years.

Nevertheless, when working with someone new I can let the introvert part of me begin to take over. Over the years I have recognized this about myself so to preclude me incessantly worrying about saying something stupid and failing to ask good questions, I lead with the stupidest thing I can thing of. Then I don't worry anymore about saying something stupid because I already have. If you are laughing at this point it is ok. It makes me laugh too but it works for me.

Another trick I use when I know I want to ask a question but the introvert has kicked in is to just blurt out whoa, whoa Nelly, slow down. Well I just interrupted the doctor's dissertation now I have to say something right? Generally it is the first thing that pops into my head which is what I wanted to ask anyway. If I have completely surprised myself then I ask them to say what they just said except slower because they just went over my head. Invariably it is the truth and stroking a doctor's ego is not beneath me.

I go out of the way to tell them where I have failed. Over the years I have found it builds trust faster. Once they know I am telling them all the bad stuff then they quit grilling me and we spend the majority of the time on stuff we are both interested in.

In short, a doctor with a horrible bedside manner is a challenge worthy of your many talents. When they start telling you about their life outside of medicine is how you determine victory. Yes, I keep score.

When a doctor looks forward to seeing you because you are his/her best patient, you will have a better experience.

Jump to this post

Dear mxyzptk32:

I listen and let it lo in one ear and right out the other ear. I now have an epileptologist for seven years that is such a gem in every way! She works WITH ME. I won't go anywhere else!

Liked by Leonard

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@lsittll

Dear mxyzptk32:

I listen and let it lo in one ear and right out the other ear. I now have an epileptologist for seven years that is such a gem in every way! She works WITH ME. I won't go anywhere else!

Jump to this post

@isittll

I understand that I am the posterior part of the gap between the sphincter at the end of the colon.

Liked by Leonard

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