Ode to a doctor’s visit.

Ode to a doctor’s visit. | July 2, 2024

We see them for four 30 minute visits or 2 hours in that year while we’re struggling…

They forget that we live 365 days or 8,760 hours a year with our illness…

We spend time planning in anticipation of this precious, important moment…

We invest hope and sometimes fear into the event…

We have often orchestrated endless tests and other doctors’ assessments in order that instruments will be tuned to perfection…that they might render us an orchestral visit…

The doctor will listen to us as we have observed our condition relentlessly and respond with the respect due, to the information we offer and know what is needed…

That is what we ask.

By Sally Komar

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Posted in Epilepsy
Tags: doctor's visit, illness, respect

10 Comments »

Our doctor is not always going to share opinions on different subjects so it’s important to say what you want when you want. I had the feeling I needed surgery. My epileptologist felt I had good enough control of seizures to avoid the risk. I reported every little feeling to him until he said, “OK. We’ll look into surgery.”. He was cooperative, helpful, informative, everything you wanted to see in a doctor. This led to a VEEG that led to surgery that led to 23 1/2 seizure-free years and still counting.

Don’t keep anything to yourself. Asking a lot of questions leads to better understanding.

LikeLiked by 1 person

Comment by Ed Lugge — July 2, 2024 @ 1:05 PM

Reply
Ed, if there’s anyone who knows about the power of self-advocacy, it’s you and your record of successful surgeries

You do your homework, know the facts and are diligent in your quest for the answers that are right for you.

Hats off, for your perseverance and braininess!

LikeLike

Comment by Phylis Feiner Johnson — July 2, 2024 @ 3:09 PM

Reply
So true.

I am currently on a waiting list to see my neurologist but who knows when I will see her. They do not know.

Meanwhile I have been struggling dealing with the medical system for 10 years with different medications that make working and daily living difficult due to all the side effects. Meanwhile trying to deal with all the paperwork entailed trying to keep money coming in while I am off on sick time. No social workers close to help deal with the paperwork. My GP us trying but he is not a neurologist (what I am at this point I am almost sure I need).

Even going to the neurologist and telling all the side effects and stresses on my system and less than 3 weeks later I have a seizure. My neurologist relays to my GP that I should go back to work without it seems any interest what might have caused my seizure or any changes in my condition.

Oh, yes. I did not mention I had to wait an hour for an ambulance because a seizure apparently is not considered an emergency (there was one in the ambulance bay less than 2minutes away). Fight for the right to go to an ER( the EMTs suggested someone drive me home- I live alone). When I got to the ER the EMTs left me in the waiting room. I was at the ER for 19 hours with no food offered. When they took my blood they forgot to take Blood my anticonvulsant level. I had to ask about it and they said that they would have to poke me again. As if it was going to be a deterrent to get the necessary test done.

It is just not the doctors that are the problem. It is the whole system.

Well, there’s my rant. Has anyone else been treated like this?

LikeLiked by 1 person

Comment by Jane — July 5, 2024 @ 6:24 PM

Reply
- I’m sure some of us have suffered some of those Indignities. But all? That’s outrageous!
  
  Yes, it’s true that you must learn to advocate for yourself, but who can survive such uncaring and inhuman behavior?
  
  First of all, you have to find a good neurologist. Where do you live? Are there any good teaching hospitals near by? Oftentimes you can find a treasure trove of good docs there.
  
  Then you need to be tested, diagnosed and medicated from scratch. With a Physician’s Assistant to contact in case of trouble.
  
  All docs have PAs these days. They’re invaluable and a hidden resource. (It’s a way of seeing a doctor without actually seeing them.)
  
  Next, it would be good to find an association, foundation or support group for assistance and backup.
  
  No one deserves to go through this, no less go through it alone!
  
  LikeLike
  
  Comment by Phylis Feiner Johnson — July 5, 2024 @ 10:41 PM
  
  Reply
  - I live in Canada. I am 90 miles away from an association. My doc does not have a PA. My neurologist Is near a teaching hospital but I think that she is in private practice. I agree I think I need to be re-evaluated from scratch. I mentioned getting an EEG and my neurologist discouraged this saying it probably would not show anything. I have felt rotten and struggled for 10 years. I think it would show something. Thank you for your kind words.
    
    LikeLiked by 1 person
    
    Comment by Jane — July 6, 2024 @ 1:59 PM
True, an EEG is superficial, but at least it could show some irregularities in your brain waves. Although a Video EEG would be more substantial.

Skip your neurologist’s private practice and research a hospital epilepsy department yourself. And find a doc yourself. Many before you have done it.

Some have had their lives saved. Go for it Jane!

(If you want a true life story, read about Charlie on this website. “Three Cheers for Charlie!”)

LikeLike

Comment by Phylis Feiner Johnson — July 6, 2024 @ 5:06 PM

Reply
- I do not think the hospital has an epilepsy department. There are only 2 doctors that specialize in Epilepsy and it seems that my neurologist does not want to consult with them (even at my suggestion). Healthcare seems to be a word people don’t understand. Caring about one’s health. Caring alone would be nice.
  
  LikeLike
  
  Comment by Jane — July 7, 2024 @ 9:43 AM
  
  Reply
  - Jane I would guess you’re not the only one with neurological issues.
    
    Try calling the hospital office and asking.
    
    I realize that’s not terribly
    forceful, but at least you can get an answer and act on that.
    
    LikeLike
    
    Comment by Phylis Feiner Johnson — July 7, 2024 @ 12:42 PM
  - Thank you for the suggestion. I will have to call and ask.
    
    LikeLiked by 1 person
    
    Comment by Jane — July 7, 2024 @ 10:01 PM
Jane, here’s the gist of Charlie’s story:

I know someone who went through hell and back.

Fifty-three years of seizures.

Every drug that came down the way. Combos changed, doses played with.

He refused a VNS because the company was harassing and pressuring him. (Scary.)

And then the big break. Brain surgery.

It was botched. He went on, refusing to be a victim.

And then there was another doctor and another surgery.

This time it was a 100% success.

He was seizure-free at 56 years old.

LikeLike

Comment by Phylis Feiner Johnson — July 6, 2024 @ 5:22 PM

Reply

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Our doctor is not always going to share opinions on different subjects so it’s important to say what you want when you want. I had the feeling I needed surgery. My epileptologist felt I had good enough control of seizures to avoid the risk. I reported every little feeling to him until he said, “OK. We’ll look into surgery.”. He was cooperative, helpful, informative, everything you wanted to see in a doctor. This led to a VEEG that led to surgery that led to 23 1/2 seizure-free years and still counting.

Don’t keep anything to yourself. Asking a lot of questions leads to better understanding.

LikeLiked by 1 person

Comment by Ed Lugge — July 2, 2024 @ 1:05 PM

Ed, if there’s anyone who knows about the power of self-advocacy, it’s you and your record of successful surgeries

You do your homework, know the facts and are diligent in your quest for the answers that are right for you.

Hats off, for your perseverance and braininess!

LikeLike

Comment by Phylis Feiner Johnson — July 2, 2024 @ 3:09 PM

So true.

I am currently on a waiting list to see my neurologist but who knows when I will see her. They do not know.

Meanwhile I have been struggling dealing with the medical system for 10 years with different medications that make working and daily living difficult due to all the side effects. Meanwhile trying to deal with all the paperwork entailed trying to keep money coming in while I am off on sick time. No social workers close to help deal with the paperwork. My GP us trying but he is not a neurologist (what I am at this point I am almost sure I need).

Even going to the neurologist and telling all the side effects and stresses on my system and less than 3 weeks later I have a seizure. My neurologist relays to my GP that I should go back to work without it seems any interest what might have caused my seizure or any changes in my condition.

Oh, yes. I did not mention I had to wait an hour for an ambulance because a seizure apparently is not considered an emergency (there was one in the ambulance bay less than 2minutes away). Fight for the right to go to an ER( the EMTs suggested someone drive me home- I live alone). When I got to the ER the EMTs left me in the waiting room. I was at the ER for 19 hours with no food offered. When they took my blood they forgot to take Blood my anticonvulsant level. I had to ask about it and they said that they would have to poke me again. As if it was going to be a deterrent to get the necessary test done.

It is just not the doctors that are the problem. It is the whole system.

Well, there’s my rant. Has anyone else been treated like this?

Comment by Jane — July 5, 2024 @ 6:24 PM

I’m sure some of us have suffered some of those Indignities. But all? That’s outrageous!

Yes, it’s true that you must learn to advocate for yourself, but who can survive such uncaring and inhuman behavior?

First of all, you have to find a good neurologist. Where do you live? Are there any good teaching hospitals near by? Oftentimes you can find a treasure trove of good docs there.

Then you need to be tested, diagnosed and medicated from scratch. With a Physician’s Assistant to contact in case of trouble.

All docs have PAs these days. They’re invaluable and a hidden resource. (It’s a way of seeing a doctor without actually seeing them.)

Next, it would be good to find an association, foundation or support group for assistance and backup.

No one deserves to go through this, no less go through it alone!

LikeLike

Comment by Phylis Feiner Johnson — July 5, 2024 @ 10:41 PM

- I live in Canada. I am 90 miles away from an association. My doc does not have a PA. My neurologist Is near a teaching hospital but I think that she is in private practice. I agree I think I need to be re-evaluated from scratch. I mentioned getting an EEG and my neurologist discouraged this saying it probably would not show anything. I have felt rotten and struggled for 10 years. I think it would show something. Thank you for your kind words.
  
  LikeLiked by 1 person
  
  Comment by Jane — July 6, 2024 @ 1:59 PM

True, an EEG is superficial, but at least it could show some irregularities in your brain waves. Although a Video EEG would be more substantial.

Skip your neurologist’s private practice and research a hospital epilepsy department yourself. And find a doc yourself. Many before you have done it.

Some have had their lives saved. Go for it Jane!

(If you want a true life story, read about Charlie on this website. “Three Cheers for Charlie!”)

Comment by Phylis Feiner Johnson — July 6, 2024 @ 5:06 PM

I do not think the hospital has an epilepsy department. There are only 2 doctors that specialize in Epilepsy and it seems that my neurologist does not want to consult with them (even at my suggestion). Healthcare seems to be a word people don’t understand. Caring about one’s health. Caring alone would be nice.

LikeLike

Comment by Jane — July 7, 2024 @ 9:43 AM

- Jane I would guess you’re not the only one with neurological issues.
  
  Try calling the hospital office and asking.
  
  I realize that’s not terribly
  forceful, but at least you can get an answer and act on that.
  
  LikeLike
  
  Comment by Phylis Feiner Johnson — July 7, 2024 @ 12:42 PM
- Thank you for the suggestion. I will have to call and ask.
  
  LikeLiked by 1 person
  
  Comment by Jane — July 7, 2024 @ 10:01 PM

Jane, here’s the gist of Charlie’s story:

I know someone who went through hell and back.

Fifty-three years of seizures.

Every drug that came down the way. Combos changed, doses played with.

He refused a VNS because the company was harassing and pressuring him. (Scary.)

And then the big break. Brain surgery.

It was botched. He went on, refusing to be a victim.

And then there was another doctor and another surgery.

This time it was a 100% success.

He was seizure-free at 56 years old.

Comment by Phylis Feiner Johnson — July 6, 2024 @ 5:22 PM

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