When to go to the ER (a followup from Wednesday)

[rubytue]

This is a long ramble where I try to process some thoughts...

So if you remember this thread: pandce.proboards.com/index.cgi?board=mm&action=display&thread=56849

I was getting comments about the ER, etc. I kept thinking this wasn't ER-worthy, despite what people were saying here, and I finally figured out why.

I called primary care, they said go to urgent care. I went to urgent care, and they kept repeated "if it gets worse, go to the ER."

So, I took that as the medical professionals saying I wasn't not ER worthy yet. As long as nothing changed, it wasn't getting worse, etc, no ER. I even asked what "worse" meant, since my eye's weren't working, and they told me "if the headache becomes unbearable with ibuprofen." That never happened, so in my mind, they didn't think I was ER worthy.

The Dr. I spoke with the next morning never said ER. By the time DH saw me at 2pm and was able to say that it was worse (no headache, but my left eye turned into a lazy eye - hadn't realized that), we had an appointment with the specialist in 90 minutes, which is faster than we could have gotten seen at the Hopkins ER. So that one was a judgement call on our part. We actually debated that for awhile - ER or keep the appointment. We decided to keep the appointment, but expected him to send me to the hospital - we thought he could call ahead to admitting and it would skip the ER.

Between tests and radiologists, they kept us busy until about 6:30pm. We were on the phone with the opthamologist at 6:45pm Thursday night, he had just spoken with the on-call neurologist, who said to come at 8am the next morning, unless it gets worse overnight and then to go to the ER.

In our second appointment with the neurologist on Friday, he asked why we didn't go to the ER. And then, when the opthamologist called back Friday night, he asked if I was OK with the treatment plan and not being admitted.

Dude - I had been ready to be admitted since Wednesday. But the damn professionals kept saying "if it gets worse."

On the plus note, the last appointment we again got the "if it gets worse, go to the ER line." We point blank asked him for the conditions that would indicate worse, and made him give real answers. At least he gave us some, and then added "but your bar should be really low."

[thegooser]

How frustrating. Looking forward to an update!

[rubytue]

Oh, there have been a couple of updates. This is post-stress let down where I process everything that happened and try to figure out what exactly happened to make it as frustrating as it was.

Orbital psudotumor (http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0002590/), also known as Idiopathic Orbital Inflammatory Syndrome (http://en.wikipedia.org/wiki/Idiopathic_orbital_inflammatory_disease). This is me right now

At least 1 month on high dose prednisone. Minimum of 2 months of prednisone, but only 50% remission rate after the first 2 months. Well, vision should improve in about a week, but it apparently bounces back when you taper. Joy.

eta: I can't get these links clicky. Why not?! Proboards usually just makes them clicky automagically. Sorry!

[krystee]

I think your situation was definitely ER-worthy. My mom is an ER nurse and always tells me to go to an ER rather than urgent care. A month ago, when I was vomiting on and off for 24 hours and had bad heartburn, I went to the ER, even though it seemed more like an urgent care issue. I am so glad I did because they did an ultrasound and other tests and realized I needed to have my gallbladder out ASAP. It seems like urgent care is just part 1 of a two-step process because they have to send you elsewhere to get certain tests, the wait is longer for answers, etc.

[rubytue]

Right. I know that now. But at the time, when you are tired, frustrated, and sick - I was so confused and trusted the medical professionals more than my gut. That was my point.

[LoveTrains]

Personally, I think anything that involves vision and potential blindness should be ER. When I had the other kind of pseudo-tumor, idiopathic intracranial hypertension, I got sent to the ER by my optometrist. I then left the ER when they said ti was going to be hours for an MRI and went home, which was actually a huge mistake b/c it fucked up the timing of me getting other stuff and also my insurance. If I had just stayed in the ER it would have been easier.

[krystee]

Sorry, I didn't mean to question your judgment. I agree that it's frustrating when the professionals are sort of vague or dismissive, and you have to choose between their counsel and your gut. My friend was just turned away from two ERs and two urgent care centers because they said nothing was wrong. She was SURE something was terribly wrong (her normally super low BP was much higher than usual, her heart was pounding, she was in a lot of pain), and sure enough, the third ER noticed that her doctor had way over-prescribed a medication. The dose was so high that it was causing severe cardiac issues and she could have died if she took the med for another few days.

[missajane]

I had a pseudotumor cerebri in high school. It took almost 6 months of being told one thing by one professional and then something different from another professional before we had a diagnosis and treatment. I am so sorry for your frustration and I get the whole "do I or don't I?" mentality.

I always feel like I am overreacting to something and I am not a serious enough case for the ER. It's tough to make that decision to go or not.

Enough about me - I am glad they figured things out and you are on a path to recovery and no more droopy eye/headaches!!

[Deleted]

Yeah, it's really frustrating. You don't want to be one of those people who go to the ER for a cold but at the same time it's your health and doctors mess up too so what do you do? Even the ER can be wrong.

My grandpa went to the ER and was told he wasn't having a stroke and the test results said he wasn't having a stroke when he clearly was and it turned out the test results did indicate he was having a stroke (we found out days later). The doctor sent him home while he was having a stroke.

Then DH's doctor told him he could have either gallbladder or appendix issues and the doctor was fine scheduling tests days away. I took DH to the ER for that one.

I'm just glad you finally got some answers and I hope you heal completely!

[vanillacourage]

I am guessing it's a liability thing for them to put it on you to decide whether to go to the ER. If they say "yes, go", you do and it's (relatively) nothing and you end up with a big bill, a crazy person could try to pin that on the doctor. If they tell you not to go and you end up getting sicker or worse, you similarly can't pin that outcome on the doctor. Sucks, but it's the way of medical practice today.

I'm sorry you've been ill and am glad you're getting some answers.

[Deleted]

I'm not sure I completely understand your story, but it sounds like you really didn't need to go the ER, right? You were handled just fine as an outpatient and there would have been no long term benefit from a trip to the ER. The reason doctors say "go to the ER if you get worse" is to cover their asses and protect you. At the point in time that they see you, you may be stable, but if the condition changes at all, you may not be-especially when the diagnosis is unclear. In cases that aren't clear cut, you don't want to waste a bunch of money sending someone to the ER but you also don't want them to decompensate and suffer long term morbidity. It is a balance and a judgement call-- made even worse now that so many patients have high deductible plans and file complaints if the urgent care doc sends them to the ER to be safe and then everything turns out ok and they just have a big bill!

[Deleted]

Sept 16, 2012 11:32:12 GMT -5 @lilly said:

I'm not sure I completely understand your story, but it sounds like you really didn't need to go the ER, right? You were handled just fine as an outpatient and there would have been no long term benefit from a trip to the ER. The reason doctors say "go to the ER if you get worse" is to cover their asses and protect you. At the point in time that they see you, you may be stable, but if the condition changes at all, you may not be-especially when the diagnosis is unclear. In cases that aren't clear cut, you don't want to waste a bunch of money sending someone to the ER but you also don't want them to decompensate and suffer long term morbidity. It is a balance and a judgement call-- made even worse now that so many patients have high deductible plans and file complaints if the urgent care doc sends them to the ER to be safe and then everything turns out ok and they just have a big bill!

I disagree. The specialist asked why she didn't go to the ER which means she should've and she has been told to set the bar very low to go to the ER even with treatment.

If she'd gone to the ER at the beginning, she would've gotten treatment earlier and may not be as severe as she is now. Sounds like there is a chance she could be living with permanent sight issues because of this. Maybe this wouldn't have been the case if she'd gotten the help she needed sooner.

IMO, she is very lucky. Things could've been far worse for her. Just because it seems things worked out for her doesn't mean it would've turned out this good.

[Deleted]

Sept 16, 2012 11:57:30 GMT -5 aswartzw said:

Sept 16, 2012 11:32:12 GMT -5 @lilly said:

I'm not sure I completely understand your story, but it sounds like you really didn't need to go the ER, right? You were handled just fine as an outpatient and there would have been no long term benefit from a trip to the ER. The reason doctors say "go to the ER if you get worse" is to cover their asses and protect you. At the point in time that they see you, you may be stable, but if the condition changes at all, you may not be-especially when the diagnosis is unclear. In cases that aren't clear cut, you don't want to waste a bunch of money sending someone to the ER but you also don't want them to decompensate and suffer long term morbidity. It is a balance and a judgement call-- made even worse now that so many patients have high deductible plans and file complaints if the urgent care doc sends them to the ER to be safe and then everything turns out ok and they just have a big bill!

I disagree. The specialist asked why she didn't go to the ER which means she should've and she has been told to set the bar very low to go to the ER even with treatment.

If she'd gone to the ER at the beginning, she would've gotten treatment earlier and may not be as severe as she is now. Sounds like there is a chance she could be living with permanent sight issues because of this. Maybe this wouldn't have been the case if she'd gotten the help she needed sooner.

IMO, she is very lucky. Things could've been far worse for her. Just because it seems things worked out for her doesn't mean it would've turned out this good.

Too bad you don't live closer to the OP since you are so educated on this topic. Next time, maybe she should just skip the doctors and come see you.

[Deleted]

Sept 16, 2012 13:12:40 GMT -5 @lilly said:

Sept 16, 2012 11:57:30 GMT -5 aswartzw said:

I disagree. The specialist asked why she didn't go to the ER which means she should've and she has been told to set the bar very low to go to the ER even with treatment.

If she'd gone to the ER at the beginning, she would've gotten treatment earlier and may not be as severe as she is now. Sounds like there is a chance she could be living with permanent sight issues because of this. Maybe this wouldn't have been the case if she'd gotten the help she needed sooner.

IMO, she is very lucky. Things could've been far worse for her. Just because it seems things worked out for her doesn't mean it would've turned out this good.

Too bad you don't live closer to the OP since you are so educated on this topic. Next time, maybe she should just skip the doctors and come see you.

Hahahahaha. Oh, give me a break. Stop taking it so personally.

[Deleted]

Sept 16, 2012 13:14:46 GMT -5 aswartzw said:

Sept 16, 2012 13:12:40 GMT -5 @lilly said:

Too bad you don't live closer to the OP since you are so educated on this topic. Next time, maybe she should just skip the doctors and come see you.

Hahahahaha. Oh, give me a break. Stop taking it so personally.

I'm not taking it personally, I'm just calling you out on talking out of your ass about something you don't really know anything about.

[Deleted]

Sept 16, 2012 13:16:21 GMT -5 @lilly said:

Sept 16, 2012 13:14:46 GMT -5 aswartzw said:

Hahahahaha. Oh, give me a break. Stop taking it so personally.

I'm not taking it personally, I'm just calling you out on talking out of your ass about something you don't really know anything about.

I'm not talking out my ass. You're the one who discounted her specialists by saying she really didn't need to go to the ER. I'm just saying if her specialists thought she did then makes sense to me she could've had a very different result. I'm just sticking with her specialist's opinions. Not yours.

[livinitup]

I think that this is just a good example that doctors, even specialists don't always know when to continue outpatient care and when to admit/send to the emergency room. What does "setting a really low bar" even mean? I think asking you, after the fact, why you didn't go to the emergency room was just a follow-up question.

[rubytue]

Lily - I went Wednesday AM for what I thought was 10+ days of sinus infection and double vision. Full out double vision, not just blurry or anything. By Thursday afternoon, proptosis and vision was then double and skewed (this was when we were 90 minutes from another appointment). Yes, it was all handled as outpatient. And I didn't die. But it was 3 days of hell bouncing around trying to figure out what was wrong. Hopefully after another day of steriods my eye will go back into place and I will be able to see again. But my optic nerve had signs of distress and it could lead to permanent issues. Not sure how long the window is before that happens, but it was about 3 1/2 days without treatment. ER + admission would have expedited the process, and apparently it was an option no one mentioned. Although, we had already decided if we didn't have something by Friday early afternoon, we were going up to Hopkins so we could get into their eye center quickly. FWIW, I have an appointment at their eye center, but its still 10 days off.

[whitepicketfence]

OP, I'm so sorry that you've been dealing with all of this. I don't blame you for being frustrated.

I hope things improve for you soon and I'm glad that you're finally getting some answers.