Tuesday, March 07, 2006

My Run-In with Another "Otherwise Busy Tin God"

I've spent the past two weeks going to doctor's offices and ERs, thanks to the trigeminal neuralgia, which has decided to ignore all my attempts to curb its hellish effects. Sunday night, I ended up in the ER once again.

But first, unbeknownst to me at the time....I ran into another Otherwise Busy Tin God.

I've written of Otherwise Busy Tin Gods before. They are a product of HMOs and their viewpoint of giving patients less time and doctors more patients. Quite frankly, I am surprised so few doctors contract this version of Tin God Syndrome in this day and age. Otherwise Busy Tin Gods are overworked, overstressed and always, always in a rush. They are also rude and never want to take the time to get to know a patient or their needs. Most doctors can handle the greater workload while still giving their patients quality care....but many short-circuit into Otherwise Busy Tin Gods.

In a nutshell: I have a pain management contract. It tells me to go to the ER only if the office is closed and I cannot bear the pain any longer. It also tells me to call the doctor on call first before going on. On Sunday, I couldn't take it anymore and of course, the office was closed. So I called the doctor on call....who turned out to be an Otherwise Busy Tin God. From there on in, I'm not really sure WHAT exactly happened.

Here's a copy of the letter I wrote to my primary care doctor. I've changed or X'd out all identifying information:

Dr. T:

Please put this letter in my chart/medical records. Thank you.

As you are well aware, I have MS-related trigeminal neuralgia. I had had this for nearly seven years. Until November of 2004, however, it was (for the most part) controlled by various medications with the infrequent need for urgent or emergency room care. Since November of 2004, however, the pain has gone from an occasional moderate-to-severe bout to almost daily, almost constant pain. It is excruciating, and it is debilitating. The impact on my life cannot be measured.

Saturday evening, my facial pain due to trigeminal neuralgia worsened considerably. I had hoped to “hang in there” until Monday morning and call the clinic. However, by Sunday evening, the pain was unbearable. I had not slept in three days and could not eat. I had no relief from pain medication. I could concentrate on nothing but the excruciating pain I was in, and my abject exhaustion.

I called the clinic’s answering service and asked to speak with the doctor on call. Dr. Otherwise called me back within minutes. I told her that the pain was unbearable, that I had a pain management contract and that I was going to the ER. I then asked if she could please contact the ER and let them know I was coming. She seemed confused, and asked why this would be helpful. I explained that it made the process easier and faster if a doctor called in advance and told them I was coming and why. Dr. Otherwise agreed to contact the ER, saying that she would make the call and tell them “only” what I had told her. I took this to mean that she would tell the ER that I had called, describing great pain from trigeminal neuralgia and the ineffectiveness of my current medications to treat it, resulting in a need to go to the hospital.

When my husband and I arrived at the ER, we spoke with a P.A. named Edgar X. He did not examine me nor did he assess me. He told me that he could not treat me, because my doctor had specifically instructed him not to. He showed us the phone message from Dr. Otherwise: “no treatment for chronic pain necessary.” Mr. X made it very clear that he would like to assess and treat me, but his “hands were tied.” He discussed non-narcotic possibilities, such as Norflex and Torradol, but the conclusion was that they would be of little to no help in my current situation.

I was confused, as Dr. Otherwise had made NO indication to me on the phone that treatment would be denied me (had she done so, I never would have braved the rather windy night and gone to the ER; wind on a face hurting from TN is torturous). I told this to Mr. X, who suggested I meet with Dr. T to “achieve a meeting of the minds” as he was getting “mixed signals” from Dr. Otherwise and myself. I told him that such a meeting of the minds had already taken place, in the form of a pain management contract between myself and Dr. T. Mr. X made it quite clear that despite my pain management contract, he could not treat me because Dr. Otherwise had instructed him not to do so. I asked that he call Dr. Otherwise, as perhaps Dr. Otherwise did not understand that I had a pain management contract in place or the extent of my pain and my condition (when my TN acts up, my speech is sometimes difficult to understand; my MS has also been causing my speech to slur lately). Mr. X refused to do so, claiming the ER was “too busy” to allow him to make such a telephone call. He suggested instead that I get discharged, return to the waiting room and call Dr. Otherwise myself. He also told me that coming to the ER was not the “best option.” I agreed, but explained that there was really no other option available to me at that time, and that this stipulation had been discussed at length between myself and Dr. T in the past, resulting in my current pain management contract. He responded by telling me that he, sadly, had no option as my doctor had specifically ordered that I was to have no treatment from the ER. He asked when I would be seeing a neurologist next. I told him that I had a referral in the works, but even then, all a neurologist could do was monitor my medications and send me to the ER if they failed to work (the only “cure“ is a surgery my insurance will not cover, and which does not, at this time, have a very high success rate in any event). Mr. X agreed that this was likely. He told me again that he wished there was something he could do, but unless Dr. Otherwise called the hospital and changed her order, his hands were tied. I needed to call the doctor on call, or go home. He urged me to contact Dr. Otherwise and see if “something could be worked out.”

I was discharged, and we went into the waiting room. By that time, my face hurt so badly I was unable to communicate much at all, so my husband contacted Dr. Otherwise for me. He told the doctor what had occurred, and the doctor denied having instructed the ER to withhold treatment. She repeatedly told my husband that she was “only supposed to answer the phone” and “could not assess or prescribe ‘additional’ medication over the phone on the weekend.” My husband told her that I did not ask for, nor did I expect her to prescribe, any medications; that, in fact, my Oxycodone had been refilled on 3/3 and I did not need more. It was simply not working. Dr. Otherwise continued to insist that she could not prescribe any “additional” medication. She also referred to my situation as “odd” and said she “could not understand” why we asked her to call the hospital before we went in. My husband explained that it was our understanding that we were supposed to contact the doctor on call before going in to the ER, and that it was simply easier on everyone involved (myself and the hospital) if the doctor on call informed the ER of my impending arrival. He agreed that our situation was not a usual one, owing to trigeminal neuralgia being such a rare condition. Dr. Otherwise responded by saying, “You’d be surprised how many people have it.” She seemed somewhat agitated, and was not prepared to listen to what my husband was saying. She continued to deny having told the hospital to withhold treatment. He told her we’d seen the note, but perhaps the hospital had misunderstood, or perhaps she had misunderstood my somewhat slurred speech on the phone earlier that evening. We asked that she call the hospital back to clarify the situation, and she did agree, but she continued to insist that she could not “prescribe medications,” that I would have to be seen and assessed. My husband told her that this is exactly what I wanted: to be seen and assessed. However, the PA could not even do this much, so long as Dr. Otherwise’s recommendation was in place. Dr. Otherwise then began to tell him that the hospital could “refuse to treat me” after assessing me if that was the doctor’s choice. He told her we understood that, but as it stood at that time, I had not even be examined. She finally agreed to call the hospital back, but told him that she would say “exactly the same thing” she had said before, making it unclear as to what she was going to accomplish, if anything. We did not know what to do; officially, I had been discharged. I was in more and more pain all the time, and had no pain medication with me. We decided to return home and simply attempt to suffer through it, until we could call the office in the morning, rather than spend an entire exhausting night in the ER to no avail.

I took two more Oxycodone upon arriving home; an hour later, I still did not “feel” them. I continued taking Oxycodone and Ibuprofen throughout the night in an attempt to control the pain. I was not able to sleep, for the fourth night in a row. Although it embarrasses me to admit this, I spent the night between an online support group for people with chronic pain and lying on the sofa, crying from the agony of the pain and the demeaning way I had been treated (or more accurately, not treated).

To say that this situation was humiliating is an understatement. To be in chronic pain to the point where medication is not helping, you cannot eat or sleep and you feel you cannot bear it anymore…and then to be denied help, is a special kind of pain that cannot be adequately described.

I do not over-use the ER. I have been in twice in the past few weeks; before that, I had not been into the ER for nearly six months. I use it only as a last resort, when medications are not working and the clinic is not open (I always prefer to come into the clinic, to be treated by doctors and nurses who know and understand me and my condition). Unfortunately, my TN often worsens at night, leaving me in a bad situation: suffer or go to the ER. I usually choose to simply suffer. I had to call my husband home from work in order to take me in, and pay a babysitter to watch my kids. I assure you, I do neither of those things on a whim; we are not rich people who can afford to miss work or pay babysitters on a whim. Not to mention the fact that going to the ER often means painful examinations and shots which leave me with site reactions for days afterwards. As I said before, I use the ER as a last resort only.

I am still confused by what happened, and I’m not sure who (if anyone) was in the wrong or where the “wires got crossed,” as Mr. X put it. I am also not sure as to what to do to prevent this sort of thing from happening in the future. I do know that the following needs to be cleared up as soon as possible:

1) My pain management contract needs to be re-written. As it stands, it is mostly handwritten and in places, illegible. I have had it refused at hospitals in the past, because they cannot read what is written and once because they suspected I wrote it myself. I ask that a typed version of the contract be made available to me, so that there is no confusion or suspicion involved. I apologize for this necessity.

2) I need to know whether or not I am expected or required to contact the doctor on call prior to going to the ER. It was my understanding that I am indeed supposed to do this; however, the last two times I have called have led me to question this directive (the time prior, the physician I spoke with was also confused as to why I called before going into the ER). Preferably, if I must call, I would like to have that directive added to my contract. If I am not to call, I apologize for my misunderstanding.

3) I need to know if it was rude or inappropriate of me to ask doctors on call to contact the ER prior to my visit to let them know I am going in and why. The hospital staff has led me to believe that this is very helpful to them, but if it is inappropriate, I will discontinue doing so with my apologies. I understand how very busy on-call doctors tend to be and it was never my intent make their lives more difficult.

I understand that this is not the ideal situation for anyone involved. Unfortunately, my present circumstances have left me with very little choice in the matter: my insurance will not cover surgery nor will it cover a pain management clinic. I can afford neither on my own. And though I am to see a neurologist again shortly, I do not hold much hope that very much, if anything, will change. I believe it is necessary to be realistic: I am in a situation with chronic pain which occasionally does not respond to oral medications. It is what I need to do when those eventualities occur that is at issue, and that issue is one I need to get resolved in writing and to the satisfaction of everyone involved. The chances that I will be spontaneously cured of this are nil, so I must prepare for those eventualities as well as I can.

The fact that my MS appears to be worsening considerably and may be morphing into secondary-progressive MS is no doubt contributing to the increase in pain levels I am currently experiencing. That is beyond my control, unfortunately. The dental work I am going through is also no doubt adding to the pain. That is an unavoidable aspect of the necessary dental work, and also, beyond my control.

Dr. T, you have always treated me and my pain in a compassionate and humane manner. I am certain we can come up with some workable solutions to this ongoing problem. I am still not sure what happened last night, but I do know that I wish to avoid a repeat of the situation in the future.

Thank you for your time.


Zen Angel

In a perfect world, a person like me could get adequete pain relief without resorting to begging, pleading and demeaning ER trips that sometimes leave you in more pain than you were in before you walked in the door. I understand that there are people who fake chronic pain to get narcotics. I understand that sometimes people with chronic pain get addicted, or use it deceptively to gain narcotics. I am NEITHER. I am just a person with a legitimate chronic pain issue that is tearing my life apart. What about people like me? Should we have to suffer, just because some people are using the ERs to get high?

I am never out of pain anymore. In order to be out of pain, I would have to take enough pills to knock me out for hours or leave me a zombie. Not to mention the fact that I would quickly run through the amount of pills allotted to me in a month. And at this point, with the ER turning me away....well, that's going to happen, anyway. Which means more trips to the clinic and ER for shots...if they don't turn me away, that is.

They call trigeminal neuralgia "the suicide disease." They say it's called that, because it's so painful, so excrutiating, that people commit suicide just to get away from it. But I'm not so sure. I wonder how many lose hope, not from the pain but from a health system that refuses to adequetly treat it? How many cannot take the constant blows to one's pride that comes with the current pain management system in America? Or how we're treated, always, like drug addicts or potential drug addicts? The frequent urine tests to prove we're not junkies, or the begging and pleading that comes with any request for new medication or more medication? And how many people commit suicide because some asshole Otherwise Busy Tin God turned them away?

I will not be one of them, never fear. My firmly-held religious beliefs would never permit it, and I would never leave my kids without a mom and my husband alone. But I understand it. Oh, how I understand it.

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At 7:14 PM, Blogger Angel said...

I am so angry that you are treated this way by people who took the vow of "First, do no harm".

You are always in my thoughts and prayers (((((Angel)))))).

At 8:52 AM, Blogger Pixie LaRouge said...

I have no words. It's ridiculous that you were treated that way.

(((((giant gentle hugs))))) I hope relief from pain and/or asshole doctors is around a nearby corner

At 2:25 PM, Blogger RusticateGirl said...

Ugh. My aunt has had TN for over 10 years, except technically it's atypical facial pain. She had the MVD surgery with no luck. What DOES help her, ironically, is a traction bed FYI. Weird but it works.

You need a new doctor. Shame on someone treating a TN patient like that, my gosh.

At 9:09 PM, Blogger bint alshamsa said...

I have to take narcotics for chronic pain (as a result of neck/chest/back surgeries for my cancer) so I can relate to a lot of what you wrote here. I won't commit suicide but I've certainly been depressed and in enough pain to where I don't think that it would be unreasonable for me to consider wanting to do anything to stop the agony.

Most of my ER adventures have to do with my lupus. I've had ER doctors who tried to pass me off to someone else or tried get me to leave and wait until I can see my regular doctors because they don't want to have to deal with my "complicated" case. It's maddening.

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