I've been trying to suppress my anger towards DFW neurology.
I've been trying to move on.
But it's not working.
I'm too angry.
And I don't want them to get away with their bullshit.
No. I don't want to ruin their lives. And I don't think I have the power to do that anyway. But I do want them to face some consequences, even if it's just a minor amount of shame and a small loss of customers.
After meeting with the office manager, Sai Duvvuri, I went and changed my Google review from a 1 star to a 3 star. I went through my blog and removed his name, the name of the doctor (Maria De Jesus) and the name of the office (DFW neurology).
I also frantically tried to change my review on other doctor review sites, but to my dismay, I couldn't find a way to change it.
Now I'm GLAD I couldn't change it.
DFW Neurology really didn't do anything to improve my experience as a patient there.
So why did I give in after meeting with Mr. Duvvuri?
Because I'm...
Gutless?
Stupid?
Weak?
Yeah. All those things. At least sometimes.
I'm the person who is brave enough to speak my mind. I stand up for myself. I fight back. But then I end up feeling sorry for the person I have stood up against. I back down. I try to spare their feelings.
And maybe I was somewhat charmed by Sai Duvvuri. He seemed to be maybe actually nice. I thought maybe he was the kind of guy who's an asshole over email but face to face, he's fairly decent.
I was also charmed by the fact that he showed me they were trying to make changes.
He showed me how they changed their website, so it would be easier for people to contact them through email.
He told me they had hired more people so they could get back to people faster.
And he did all this, while admitting that yes, they did have some problems with being understaffed.
Now...
Maybe things are improving for their patients in general. That would be a good thing. I hope it's true.
But it hasn't gotten better for me.
A few days after meeting with Duvvuri, I started carefully looking at the packet of information they sent home with me. I started noticing things that didn't make sense. These are outlined in this post.
I sent Duvvuri an email on Tuesday with questions.
I was going to give a brief summary, but...
Well, I think it's easier if I just cut and paste the email here.
So....
After all the drama and reassurances, I expected to get an email back rather quickly.
But no.
There was nothing on Tuesday.
Or Wednesday.
Google decided it would be nice to let me know my email hadn't been answered yet. They nudged me to follow up.
I didn't.
I wanted to be a patient with patience.
My patience paid off.
Well, not really.
Sai wrote back on Friday night.
He wrote:
Ms. Roberts,
We had noticed that they didn't provide the consultation notes in the packet they had given me. We kind of just shrugged it off and told ourselves that at least my primary care physician would get it.
But she didn't!
I had an appointment with her last week and she told me that she received some kind of EEG report but no consultation report. She seemed quite surprised by this.
From what I read and understand, it's not really kosher for doctor's offices to hide consultation notes.
Something is not right.
Well, a lot is not right.
Anyway, back to Duvvuri's email.
I actually DO believe in the idea that patients should make appointments with doctors and not try to get all their answers via the phone and email. I think doctors are busy people, and I think it's unfair for patients to take up too much of the doctor's time by getting free medical help via the phone, email, patient portal, etc.
BUT....
A) I think they owe me after the shit they've put me through. Like after just losing my MRI and then refusing to apologize for it, and changing my diagnosis one week later without explanation or apology; AND pressuring me to change my review; they should be bending over backwards.
B) If they can't bend over backwards, they could at least bend a little bit. Maybe having a discussion about my symptoms over email is too much to ask for. But he couldn't answer my questions about the diary/button events or agree to send me more EEG snapshots?
You know what is feels like to me?
Sai Duvvuri was temporarily nice to me, because my Google review scared him.
I changed that, and then he was done with me.
There has been a part of me, these past several hours, that has thought I should continue being nice, because I don't want to mess up my chances of things like...getting my consultant notes. But they are legally obligated to share my medical records. So, fuck them.
And now I'm going to go back through my old posts and remove my removal of the naming and shaming.
Edited to Add 9/29/18- When I went to get my pap smear, I asked my primary care physician if she had finally received the consultation notes from Maria de Jesus.
My PCP checked on her computer and saw that she did. She read some of it to me. Dr. de Jesus wrote that she had recommended I see an epileptologist.
This is a complete lie! She didn't make ANY sort of recommendation like that. The first person, among us, who spoke of bringing another doctor into the mix was me! And that didn't happen until a few days later.
The thing is, if there was an alternate universe where Dr de Jesus was honest on my consultation notes, and she actually did recommend me seeing an epilepsy specialist, I don't think it would make sense.
On the website of the Epilepsy Foundation, they have an article entitled "What is an epileptologist and Who Needs One"
They say: Epilepsy affects roughly 1% of the population and is one of the most common neurologic diseases. Ideally patients with epilepsy (recurrent seizures) are treated and followed by a neurologist. Many patients, who are doing well and on stable doses of medications, can even be followed by their primary care physician, perhaps seeing their neurologist infrequently.
On DFW Neurology's own website, they say, We specialize in treating all neurological and neuromuscular conditions including:
Epilepsy is the second thing on the list!
What the hell is so special about my condition that they couldn't manage to deal with my care?
Okay. I just read further down on the Epilepsy Foundation article. Who DOES need the epileptologist?
The ones that do are the (roughly) 30% whose seizures are not controlled with the first 2 or 3 medications. For those, it is important that they be given specialized care, which typically begins with EEG-video monitoring, and can result in the rectification of a wrong diagnosis, change in medications, or surgical procedures.
I was given ONE medication; put on a very low dose; then taken off of it a week later.
Also, when we met with Sai Duvvuri and asked about why I was taken off medication, he told me it's because I was having mimics of a seizure.
Mimics of a seizure? What the hell is that?
Does it mean that the computer saw things on my EEG that looked like seizures, but they weren't?
Or does it mean my what they saw on the EEG is so mild, I don't need medication?
If either of those are true, why would I need an epileptologist?
But since it's not even true that Dr. de Jesus made that recommendation....
I absolutely despise these people.
I've been trying to move on.
But it's not working.
I'm too angry.
And I don't want them to get away with their bullshit.
No. I don't want to ruin their lives. And I don't think I have the power to do that anyway. But I do want them to face some consequences, even if it's just a minor amount of shame and a small loss of customers.
After meeting with the office manager, Sai Duvvuri, I went and changed my Google review from a 1 star to a 3 star. I went through my blog and removed his name, the name of the doctor (Maria De Jesus) and the name of the office (DFW neurology).
I also frantically tried to change my review on other doctor review sites, but to my dismay, I couldn't find a way to change it.
Now I'm GLAD I couldn't change it.
DFW Neurology really didn't do anything to improve my experience as a patient there.
So why did I give in after meeting with Mr. Duvvuri?
Because I'm...
Gutless?
Stupid?
Weak?
Yeah. All those things. At least sometimes.
I'm the person who is brave enough to speak my mind. I stand up for myself. I fight back. But then I end up feeling sorry for the person I have stood up against. I back down. I try to spare their feelings.
And maybe I was somewhat charmed by Sai Duvvuri. He seemed to be maybe actually nice. I thought maybe he was the kind of guy who's an asshole over email but face to face, he's fairly decent.
I was also charmed by the fact that he showed me they were trying to make changes.
He showed me how they changed their website, so it would be easier for people to contact them through email.
He told me they had hired more people so they could get back to people faster.
And he did all this, while admitting that yes, they did have some problems with being understaffed.
Now...
Maybe things are improving for their patients in general. That would be a good thing. I hope it's true.
But it hasn't gotten better for me.
A few days after meeting with Duvvuri, I started carefully looking at the packet of information they sent home with me. I started noticing things that didn't make sense. These are outlined in this post.
I sent Duvvuri an email on Tuesday with questions.
I was going to give a brief summary, but...
Well, I think it's easier if I just cut and paste the email here.
So....
Hi! It was a pleasure meeting you last week! Thank you for answering some of our questions.
I have more. Sorry!
If you could pass these questions on to Victor and Dr. de Jesus, I would really appreciate it.
1. After looking at the EEG snapshots multiple times, I finally figured out that 7 were button-pushing ones and only 3 were program-detected-spike ones. Was there a reason these particular snapshots were given to me, or was it random? If I get a second opinion, will the button-pushing ones be any helpful to the other doctor? Is there a chance that there might be seizure activity that the program didn't pick up on on these EEG snapshots? Or would these be provided to me and another doctor for some type of baseline?
Approximately how many spikes did the software program detect?From what Dr. de Jesus had said, I'm assuming it wasn't only three. Was it less than 5? Less than 10? Less than 20? More than 20?
Is there a chance I could get a few more example of seizure snapshots? If some of those could be mailed to me, I would really appreciate it!
2. I'm very confused about the push-button events/diary.I might have misunderstood Victor, but I am pretty sure I was told to write down only things such as eating, going to bed, and taking medication. Tim and I both don't remember being told to write down the events that warranted pressing the little button.
On the EEG report it says "Spike did not correspond to the events noted on patient's diary". Is this a way of saying the spikes were not mistaken with eating artifacts. Or is it saying that the spikes never corresponded with when I pressed the button?
Then there's a section that says PUSH BUTTON EVENTS.What's written in it is not the times I pushed the button, but the eating, sleeping, and medication times.
Just to clarify, when I pressed the button it was for either A) myoclonus B) my indescribable weird/bad feelings c) One incident of my infrequent episodes of feeling awful and spitting up huge amounts of saliva.
The button would have been pressed after the myoclonus, during the weird/bad feelings, and after the spitting episode.
In the first day or two, there would have probably been a larger gap between symptoms and pressing the button because it took me awhile to get used to opening the backpack and finding the button!
Another question: The form says "The patient refused video monitoring so it is difficult to clinically correlate this EEG finding".
I'm wondering, how is epilepsy diagnosed (or ruled out) when symptoms are felt but not seen?
My myoclonus is usually very small and often in my feet.It's hard to see.
The bad/weird feelings definitely can't be seen.They also can't really be described... which I know is frustrating (for me AND doctors)
Anyway, if anyone at your center can help me understand things more, I'd deeply appreciate it!
But no.
There was nothing on Tuesday.
Or Wednesday.
Google decided it would be nice to let me know my email hadn't been answered yet. They nudged me to follow up.
I didn't.
I wanted to be a patient with patience.
My patience paid off.
Well, not really.
Sai wrote back on Friday night.
He wrote:
Ms. Roberts,
This type of clinical questions can only be answered in a follow-up visit.Please call the clinic to schedule one. If your new neurologist has these questions, they can also call us to arrange a time with Dr. De Jesus.
Thanks for your understanding and cooperation.
Regards,
Sai
And in my email back, I faked understanding and cooperation.
I'm going the cowardly route. Nice to their face and bitching about them behind their back.
Okay! Thank you!
In the meantime, can you make sure my primary care physicians office gets all my medical records from DFW neurology. I filled out the appropriate forms, but the only thing the office received was the EEG report.I would like them to also have all the consultation notes as well. I have an extra copy of the MRI, so I can provide that myself.
I called about this the other day, and hopefully it’s already been sent over or my request is being processed.But in case it hasn’t, can you please make sure this gets done.
Thank you so much!!
But she didn't!
I had an appointment with her last week and she told me that she received some kind of EEG report but no consultation report. She seemed quite surprised by this.
From what I read and understand, it's not really kosher for doctor's offices to hide consultation notes.
Something is not right.
Well, a lot is not right.
Anyway, back to Duvvuri's email.
I actually DO believe in the idea that patients should make appointments with doctors and not try to get all their answers via the phone and email. I think doctors are busy people, and I think it's unfair for patients to take up too much of the doctor's time by getting free medical help via the phone, email, patient portal, etc.
BUT....
A) I think they owe me after the shit they've put me through. Like after just losing my MRI and then refusing to apologize for it, and changing my diagnosis one week later without explanation or apology; AND pressuring me to change my review; they should be bending over backwards.
B) If they can't bend over backwards, they could at least bend a little bit. Maybe having a discussion about my symptoms over email is too much to ask for. But he couldn't answer my questions about the diary/button events or agree to send me more EEG snapshots?
You know what is feels like to me?
Sai Duvvuri was temporarily nice to me, because my Google review scared him.
I changed that, and then he was done with me.
There has been a part of me, these past several hours, that has thought I should continue being nice, because I don't want to mess up my chances of things like...getting my consultant notes. But they are legally obligated to share my medical records. So, fuck them.
And now I'm going to go back through my old posts and remove my removal of the naming and shaming.
Edited to Add 9/29/18- When I went to get my pap smear, I asked my primary care physician if she had finally received the consultation notes from Maria de Jesus.
My PCP checked on her computer and saw that she did. She read some of it to me. Dr. de Jesus wrote that she had recommended I see an epileptologist.
This is a complete lie! She didn't make ANY sort of recommendation like that. The first person, among us, who spoke of bringing another doctor into the mix was me! And that didn't happen until a few days later.
The thing is, if there was an alternate universe where Dr de Jesus was honest on my consultation notes, and she actually did recommend me seeing an epilepsy specialist, I don't think it would make sense.
On the website of the Epilepsy Foundation, they have an article entitled "What is an epileptologist and Who Needs One"
They say: Epilepsy affects roughly 1% of the population and is one of the most common neurologic diseases. Ideally patients with epilepsy (recurrent seizures) are treated and followed by a neurologist. Many patients, who are doing well and on stable doses of medications, can even be followed by their primary care physician, perhaps seeing their neurologist infrequently.
On DFW Neurology's own website, they say, We specialize in treating all neurological and neuromuscular conditions including:
Epilepsy is the second thing on the list!
What the hell is so special about my condition that they couldn't manage to deal with my care?
Okay. I just read further down on the Epilepsy Foundation article. Who DOES need the epileptologist?
The ones that do are the (roughly) 30% whose seizures are not controlled with the first 2 or 3 medications. For those, it is important that they be given specialized care, which typically begins with EEG-video monitoring, and can result in the rectification of a wrong diagnosis, change in medications, or surgical procedures.
I was given ONE medication; put on a very low dose; then taken off of it a week later.
Also, when we met with Sai Duvvuri and asked about why I was taken off medication, he told me it's because I was having mimics of a seizure.
Mimics of a seizure? What the hell is that?
Does it mean that the computer saw things on my EEG that looked like seizures, but they weren't?
Or does it mean my what they saw on the EEG is so mild, I don't need medication?
If either of those are true, why would I need an epileptologist?
But since it's not even true that Dr. de Jesus made that recommendation....
I absolutely despise these people.
