In my last medical-post, I said I would name and shame if things don't go well at my next neurology appointment.
Well...and here we are.
So....
Here's my story.
As I said in my last medical post, my MRI report was missing and we were not satisfied with what we were told regarding my EEG.
The doctor, Maria de Jesus, wouldn't tell us much. She just said I had general seizures. I asked her if I could go without medication, and she said no, medication was needed. I got a prescription for Keppra and started taking it.
I was frustrated with the briefness of our appointment and the lack of information provided.
Later better questions formed in my mind, and I wrote DFW Neurology an email asking them to forward the questions to Dr. de Jesus.
Here's the email I sent:
I had a 72 hour EEG on July 16. I've been told that seizure activity was seen, and I met briefly with Dr. de Jesus about this. I might be being over curious and picky about these things, but I am feeling dissatisfied with the information provided to me. I would really like to know more. I have another appointment with Dr de Jesus on August 15. I would really appreciate getting more information about my seizures.If you could pass on these questions to her before my appointment, I would DEEPLY appreciate it.
1. For the most part, did my seizure activity match up with when I pressed the little button (I usually pressed a minute or so after the "event")
2. Were there many times that I pressed the button and no seizure activity was seen?
3. Were there times that I didn't press the button and seizure activity was seen?
4. Were seizures seen every day? If so, how often? Hourly? A few times?
5. Were there seizures seen during sleep?
6. Did most of the seizure activity look the same or were there variances?
7. Was any background slowing seen on the EEG?
8. I had an episode on Wednesday night (July 18) around 9 pm, and I would really like to know if that was a seizure. Was anything seen on the EEG? And if so, did it look different or more intense than other seizure activity? Thank you so much.I appreciate your time and effort.
This morning we had a follow up appointment. I will give Dr. de Jesus credit. She DID try to answer the questions, and she was very personable. But we left even more confused than ever.
First of all, the diagnosis changed. Last week it was general seizures. This week she used the term bilateral frontal temporal...SOMETHING? And she said they were NOT seizures. She also said it's up to me whether or not I want medication.
WTF???!!!
How and why did the diagnosis change? Did the doctor give me the wrong report last week?
A part of me thinks maybe it's a lost-in-translation issue, because English doesn't seem to be the doctor's first language. Maybe for her, the word "seizure" should be applied only to general clonic tonic seizures (grand mal) and should not be used for partial seizures.
OR was I misdiagnosed last week with seizures; my questions prompted the doctor to take a second look; and she then realized I wasn't having seizures after all?
As for the other questions. We never got clarification over whether the seizures happened during sleep. Nor did we get a clear idea of how often the not-seizures were happening. All she would say is that they DID happen every day but they weren't happening all the time. So, what does that mean? Hourly? Once or twice a day? Three times a day?
And here's the most confusing thing. She said the abnormal activity did NOT correspond to when I pushed the button.
I pushed the button a lot, so it seems quite strange that if I was having multiple EEG abnormalities, it always occurred when I was not pressing the button. I would think just by coincidence alone, sometimes the button pressing and the EEG spikes would happen simultaneously.
So here are the two conflicting theories I have.
A) The spikes come not from abnormal brain activity but eating. Tim is big on believing this theory. Victor Remmers, the tech guy, warned us that eating looks very much like a seizure. So I had to keep a diary that noted when I ate, when I took my birth control pills, and when I went to bed. Now for the most part, I just marked down the beginning of a meal which for me is leisurely and sometimes includes breaks between eating. I might eat something; then wait for something to finish cooking; then eat again.
For example, I might say I ate at 7:23, but then my eating might have gone off and on for about 30 minutes after that.
Could the doctor have not paid attention to the eating diary or misinterpreted it?
And you know what, if there's one time that I wouldn't be pressing the button, it would have been while eating.
B) The button pressing DOES correspond with the abnormalities on the EEG, but Dr. de Jesus didn't understand that the button-pressing was usually delayed by a minute or two.
Really.
Am I supposed to believe my brain is abnormal but this is not the cause of any of my symptoms? I could go with SOME of my symptoms are not caused by an abnormality. It would make sense that I have seizures; then also some psychological symptoms. But how can it make sense that I'm having abnormal brain activity and not feeling anything? Yet at times that my brain is normal, I'm feeling things and having random body jerking?
Anyway....
I was bothered last week that we weren't shown the EEG. I wanted to see it with my own eyes.
To my relief, this morning, the doctor showed us some of the EEG. But it didn't make me feel any less confused. Because it was just a brief sample out of 72 hours. I still don't know how many seizures I had...not even a remotely general idea. Nor do I know if I had them while asleep.
Oh wait. They aren't seizures. Right?
What the hell am I supposed to call them?
Does it matter?
Well, it DOES matter to me.
I don't think it matters to Dr. de Jesus or the rest of the staff at DFW Neurology. I think they just wanted an excuse to use the expensive medical equipment they had purchased. For all I know, they just made up a random diagnosis; then had to backtrack when I started asking more questions.
Now onto the MRI story.
Last week, I asked for the results and Dr. de Jesus couldn't find it. She called me soon after the appointment with the results. I wanted to see these results for myself, so I asked for them this morning. The office staff person searched and couldn't find them. She said they weren't in my file.
By this time, I was so paranoid, I imagined the doctor had picked up random results from another patient and had read them over the phone to me.
To her credit, this wasn't the case.
Tim and I went to the imagining center; got the results; and they pretty much match what the doctor had told me.
In case anyone cares: here are the abnormal bits.
The ventricles and extra-axial spaces are slightly prominent for age.
Prominent perivascular spaces are noted at the inferior extent of the basal ganglia on the right.
There is a mild diffuse prominence of the ventricles and extra-axial spaces, slightly greater than expected for age and suggesting a component of nonspecific atrophy.
I'm not sure what any of that means, and Googling didn't help. But I feel somewhat reassured by the words "slightly" and "mild".
And to be fair and realistic, there are probably a LOT of people who don't get MRI's and if they did, they might end up seeing the same results.
I'm pretty sure I don't need to be completely freaking out.
So I'm not freaking out.
But I AM angry.
I am also feeling depressed.
And....I feel alone, lost, distrustful, and helpless.
I hate healthcare in America.
I really do.
Basically, I'm in a really bad headspace right now.
I think I'm going to take a break from blogging until I'm in a better headspace. Or until I at least know what the hell is going on inside my headspace.
(8/31/18)- Deleted my naming and shaming, because I had a meeting with the office manager and we worked some stuff out.
(9/9/18) Went back to naming and shaming, because after careful consideration and subsequent interactions, I feel we really didn't work anything out after all.
8/1/19-Added even more naming and shaming, because it's a year later and I'm still PISSED.
Well...and here we are.
So....
Here's my story.
As I said in my last medical post, my MRI report was missing and we were not satisfied with what we were told regarding my EEG.
The doctor, Maria de Jesus, wouldn't tell us much. She just said I had general seizures. I asked her if I could go without medication, and she said no, medication was needed. I got a prescription for Keppra and started taking it.
I was frustrated with the briefness of our appointment and the lack of information provided.
Later better questions formed in my mind, and I wrote DFW Neurology an email asking them to forward the questions to Dr. de Jesus.
Here's the email I sent:
I had a 72 hour EEG on July 16. I've been told that seizure activity was seen, and I met briefly with Dr. de Jesus about this. I might be being over curious and picky about these things, but I am feeling dissatisfied with the information provided to me. I would really like to know more. I have another appointment with Dr de Jesus on August 15. I would really appreciate getting more information about my seizures.If you could pass on these questions to her before my appointment, I would DEEPLY appreciate it.
1. For the most part, did my seizure activity match up with when I pressed the little button (I usually pressed a minute or so after the "event")
2. Were there many times that I pressed the button and no seizure activity was seen?
3. Were there times that I didn't press the button and seizure activity was seen?
4. Were seizures seen every day? If so, how often? Hourly? A few times?
5. Were there seizures seen during sleep?
6. Did most of the seizure activity look the same or were there variances?
7. Was any background slowing seen on the EEG?
8. I had an episode on Wednesday night (July 18) around 9 pm, and I would really like to know if that was a seizure. Was anything seen on the EEG? And if so, did it look different or more intense than other seizure activity? Thank you so much.I appreciate your time and effort.
This morning we had a follow up appointment. I will give Dr. de Jesus credit. She DID try to answer the questions, and she was very personable. But we left even more confused than ever.
First of all, the diagnosis changed. Last week it was general seizures. This week she used the term bilateral frontal temporal...SOMETHING? And she said they were NOT seizures. She also said it's up to me whether or not I want medication.
WTF???!!!
How and why did the diagnosis change? Did the doctor give me the wrong report last week?
A part of me thinks maybe it's a lost-in-translation issue, because English doesn't seem to be the doctor's first language. Maybe for her, the word "seizure" should be applied only to general clonic tonic seizures (grand mal) and should not be used for partial seizures.
OR was I misdiagnosed last week with seizures; my questions prompted the doctor to take a second look; and she then realized I wasn't having seizures after all?
As for the other questions. We never got clarification over whether the seizures happened during sleep. Nor did we get a clear idea of how often the not-seizures were happening. All she would say is that they DID happen every day but they weren't happening all the time. So, what does that mean? Hourly? Once or twice a day? Three times a day?
And here's the most confusing thing. She said the abnormal activity did NOT correspond to when I pushed the button.
I pushed the button a lot, so it seems quite strange that if I was having multiple EEG abnormalities, it always occurred when I was not pressing the button. I would think just by coincidence alone, sometimes the button pressing and the EEG spikes would happen simultaneously.
So here are the two conflicting theories I have.
A) The spikes come not from abnormal brain activity but eating. Tim is big on believing this theory. Victor Remmers, the tech guy, warned us that eating looks very much like a seizure. So I had to keep a diary that noted when I ate, when I took my birth control pills, and when I went to bed. Now for the most part, I just marked down the beginning of a meal which for me is leisurely and sometimes includes breaks between eating. I might eat something; then wait for something to finish cooking; then eat again.
For example, I might say I ate at 7:23, but then my eating might have gone off and on for about 30 minutes after that.
Could the doctor have not paid attention to the eating diary or misinterpreted it?
And you know what, if there's one time that I wouldn't be pressing the button, it would have been while eating.
B) The button pressing DOES correspond with the abnormalities on the EEG, but Dr. de Jesus didn't understand that the button-pressing was usually delayed by a minute or two.
Really.
Am I supposed to believe my brain is abnormal but this is not the cause of any of my symptoms? I could go with SOME of my symptoms are not caused by an abnormality. It would make sense that I have seizures; then also some psychological symptoms. But how can it make sense that I'm having abnormal brain activity and not feeling anything? Yet at times that my brain is normal, I'm feeling things and having random body jerking?
Anyway....
I was bothered last week that we weren't shown the EEG. I wanted to see it with my own eyes.
To my relief, this morning, the doctor showed us some of the EEG. But it didn't make me feel any less confused. Because it was just a brief sample out of 72 hours. I still don't know how many seizures I had...not even a remotely general idea. Nor do I know if I had them while asleep.
Oh wait. They aren't seizures. Right?
What the hell am I supposed to call them?
Does it matter?
Well, it DOES matter to me.
I don't think it matters to Dr. de Jesus or the rest of the staff at DFW Neurology. I think they just wanted an excuse to use the expensive medical equipment they had purchased. For all I know, they just made up a random diagnosis; then had to backtrack when I started asking more questions.
Now onto the MRI story.
Last week, I asked for the results and Dr. de Jesus couldn't find it. She called me soon after the appointment with the results. I wanted to see these results for myself, so I asked for them this morning. The office staff person searched and couldn't find them. She said they weren't in my file.
By this time, I was so paranoid, I imagined the doctor had picked up random results from another patient and had read them over the phone to me.
To her credit, this wasn't the case.
Tim and I went to the imagining center; got the results; and they pretty much match what the doctor had told me.
In case anyone cares: here are the abnormal bits.
The ventricles and extra-axial spaces are slightly prominent for age.
Prominent perivascular spaces are noted at the inferior extent of the basal ganglia on the right.
There is a mild diffuse prominence of the ventricles and extra-axial spaces, slightly greater than expected for age and suggesting a component of nonspecific atrophy.
I'm not sure what any of that means, and Googling didn't help. But I feel somewhat reassured by the words "slightly" and "mild".
And to be fair and realistic, there are probably a LOT of people who don't get MRI's and if they did, they might end up seeing the same results.
I'm pretty sure I don't need to be completely freaking out.
So I'm not freaking out.
But I AM angry.
I am also feeling depressed.
And....I feel alone, lost, distrustful, and helpless.
I hate healthcare in America.
I really do.
Basically, I'm in a really bad headspace right now.
I think I'm going to take a break from blogging until I'm in a better headspace. Or until I at least know what the hell is going on inside my headspace.
(8/31/18)- Deleted my naming and shaming, because I had a meeting with the office manager and we worked some stuff out.
(9/9/18) Went back to naming and shaming, because after careful consideration and subsequent interactions, I feel we really didn't work anything out after all.
8/1/19-Added even more naming and shaming, because it's a year later and I'm still PISSED.