Language, Sound, and Silent Language

Yesterday I had my second session of auditory processing disorder therapy with Dr. Katz. A very pleasant colleague of his from New Zealand sat in on the session.

When I first started working with Dr. Katz this year, he evaluated my processing by playing words and sounds to me and asking me to repeat what I heard. My biggest challenge was to repeat the sounds I heard to him as I actually heard them, rather than repeat them as I knew I was supposed to have heard them. For instance, yesterday he played a word. I explained that it sounded to me like “wu-wuhl” but that I knew it should be “wall” as I didn’t know of any English word “wu-wuhl.” When he played the sound, the first thing I did was spell w-u-w-u-h-l in my head. I immediately recognized that it is not a real word and decided I must had heard “wall” instead.

That is why it takes me so long to respond to people at times. It takes me even longer to respond when I hear a word like “sent” because I am busy spelling s-c-e-n-t, s-e-n-t and c-e-n-t, while evaluating the context to figure out which one I should have heard. It gets even worse with words like “see” because I have to go through s-e-a, s-e-e, and also s-i, because I’ve been around lots of Spanish speaking people my whole life. Then, for instance, if I’m in Colorado I have to wonder if I was supposed to have heard “ski,” rather than any version of “see”.

This is a strategy I refer to as my “internal closed captioning system”. It is a habit I’ve had for as long as I can remember. Turns out I was wrong about “wall” when Dr. Katz played the word. The word he had played was “wool”. I would never have guessed “wool” unless it was part of a conversation about sheep, yarn, or sweaters. It is a word I hear far less often than “wall”. I work with averages and probability when I’m talking to people. It really drove home how reliant I have been on context and spelling for understanding speech throughout my entire life. It also explained why I had experienced such a hard time in classrooms and lectures throughout my educational career.

I get really fatigued after my sessions with Dr. Katz. I still experience profound exhaustion after being exposed to sound from which I am expected to extract meaning. But despite this I will continue because the sessions are incredibly eye opening and informative. I’m slowly learning to differentiate sounds based on their own merit, rather than based on context.

Today I had another variety of language lesson. I had a one on one tutoring session in American Sign Language or ASL. My tutor is super cool and I feel like I have learned a lot already. What I find interesting about my ASL class is that unlike anything else I’ve ever been expected to learn, I’m not expected to learn with my ears. My tutor uses her voice some, but like many Deaf people, her enunciation is different from that of hearing people. With my APD I don’t stand a chance of figuring out what she says. Which is fine, because as it turns out I’m learning content at a faster pace because of the visual nature of the subject matter. I have never learned this quickly through spoken communication. It is almost like discovering an ancestral homeland. The language just feels right to me.

I am very excited about what the future may hold. I finally have a firm grasp of my strengths and limitations. I know what I can do and I know how I can do it. I hope my journey can be of benefit to others.

Illustration of ovary, Fallopian tube, and top or funds of uterus

Letter to an OB/GYN who did not take my PMDD seriously

This is a copy of a letter from a patient to her former doctor. I commend the author and contributor Amanda for speaking up and advocating on her own behalf and ultimately advancing the cause of educating physicians about premenstrual dysphoric disorder.

Doctor,

I was a patient of your office for about 14 years which included delivery of my two daughters in 2001 and 2004. I last saw you in the spring/summer of 2013. I had come to you for a consultation and to discuss my request for a hysterectomy/oophorectomy. I typed out a list of how my symptoms of PMDD have affected my life for the past 15 plus years. My symptoms were debilitating and affected my life in every way. For two weeks out of the month it affected every relationship (work, children, spouse, family, and friends). I endured impulsive behaviors, suicidal thoughts, hopelessness, self-harm, hating myself, etc. I discussed past treatments, consequences and multiple medications for the past 17 years. Nothing was working anymore and my PMDD was getting worse. I never had the physical effects of PMDD or had bad, heavy periods. After you read my list, you looked at me and said you would never give me a hysterectomy for this and for those reasons. You said I didn’t have heavy bleeding, fibroids, etc. You said that I just need to remember that it’s “PMS” and remember what I was dealing with. You didn’t even acknowledge and address it as PMDD. You didn’t believe me or take it seriously. I said if it was as easy as changing my thoughts, then I wouldn’t be in your office and left. I left your office in tears and felt hopeless. I never wanted to come back and never did.

I am writing you almost six months post operation of a hysterectomy and bi-lateral oophorectomy. I am 37 now and am on an estrogen patch. I have never felt better in my life. I knew that the surgery was my last resort and only hope. I took Lupron injections for six months prior to surgery to ensure that this would end my PMDD. As a doctor and a woman who has dedicated her life to women’s health, I feel you didn’t take me or my issue seriously and ultimately failed me. I have learned through my PMDD treatment there are doctors who don’t even believe this exists and/or don’t even know about it.

I have been active in Facebook groups for PMDD since they started them and they have been my only support as I do not know anyone personally that suffers from it. They have been wonderful to relate to and to know that I am not alone. I have attached this letter from the NAPMDD foundation. They have a great website of resources for the doctors and for the patients. They have asked members of the association to provide the letter to any OB/GYN’s and women’s health services. Most women are self-diagnosed that have PMDD. They are very often misdiagnosed by practitioners for years as having Bi-Polar, Anxiety, Borderline Personality Disorder, Depression, etc. I was fortunate enough to have a therapist who specialized in women’s studies to diagnosis this after years of treatment and wrong diagnoses. I hope that by reading these letters and possibly checking out this website that you can have a different outlook on this disorder, which is said to affect 8% of women.

Sincerely,

Amanda

 

This piece is copyrighted by the author Amanda.

The Real Cost of Healthcare

Are you getting what you pay for? How much is that time in the doctor’s office worth to you? How much is it worth to the doctor?

Let’s examine a case.

The following is based on an interaction between a married couple, Andrew and Dana, and a neurosurgeon. Andrew had been experiencing neck pain for years and found it was worsening in severity. He had an MRI of his neck that showed no major issues. The neurosurgeon reviewed the negative cervical MRI report with Andrew at his initial appointment and ordered a bone scan and an EMG test to try to pinpoint other causes. Andrew and Dana had already learned at the time of the EMG that it was negative. Dana accompanied her husband to his follow up appointment to find out the results of the bone scan.

The couple recorded and transcribed the appointment for my review.

Dana and Andrew arrived at the office at 7:20 for the scheduled appointment time of 7:30. No one showed up to open the office until approximately 8:07. They were taken back to an exam room at about 8:28. The doctor entered the exam room at 8:50.

“If you look right here, you’ll see that there’s an area…an increase…right in here…arthritis…” Dr. Neurosurgeon mumbled, “Have you ever had your shoulder looked at?”

“No, sir,” answered Andrew.

The doctor said nothing in response.

“What does that mean?” Andrew asked.

“Uh, I’m a neurosurgeon so…I would send you to somebody who takes care of shoulders.”

Silence.

“Okay,” said Andrew. “So like a…?”

“An ortho person?” Dana offered.

“Yeah, that’s who,” said Dr. Neurosurgeon, “a shoulder specialist.”

Silence.

“So give me an idea of what you’re thinking after seeing this. What type of issues…” asked Andrew.

“I think it’s a shoulder issue,” Dr. Neurosurgeon replied.

“So a mechanical issue as opposed to…” they were almost begging for information. “Muscular or…”

“So you have a shoulder problem,” he said.

Silence.

“So who might you recommend?” they asked desperately.

Dr. Neurosurgeon gave them a name and told them that the receptionist would set up an appointment with the shoulder surgeon he named.

That was it. The couple basically had to beg for information and ended up with very little. Now I understand it is outside of Dr. Neurosurgeon’s specialty to identify images in a bone scan but he was not the least bit sympathetic to Andrew and Dana’s desire for information. He could have given at the very least an outline of what the shoulder specialist might look for and explain that he was not qualified to predict the outcome.

He could have said: “I’m sorry, but issues that don’t involve the central nervous system are outside the scope of what I’m comfortable addressing. I am happy to send you to Dr. Boneanmussle who will look at this scan and maybe order more tests to see if you have a shoulder muscle kerfizzle or bone splatazzle or something else entirely. I understand you’re eager to pinpoint the reason for your pain. I wish I could tell you more but our scheduler Ms. Gitterdun will get you set right up with Dr. Boneanmussle’s office. I apologize for your wait and I hope I have given you at least some information.”

That would have taken 45 more seconds.

In 27 years of practice he hadn’t figured out a better way to communicate? As a neurosurgeon he is just not that smart?

No, he is that smart. He is just that uncaring. He sees no reason to expend energy improving his communication skills because he doesn’t think his patients deserve any more than what he currently offers. He doesn’t believe he owes them more than he is already giving them. And no one is holding him to a higher standard of communication.

Would you accept this level of communication from your cell phone company customer service person or from your auto mechanic? Of course not. In a comparable business transaction you probably would have asked for a supervisor or simply taken your business elsewhere. But this is health care.

The encounter lasted 2 and a half minutes. Andrew’s insurance was billed $129.00. His insurance contract reduced the charge to $93.04. That is a billed rate of $51.60 for each minute of face time with the physician. Insurance reduced that charge from $51.60 a minute to a mere $37.22 per minute of doctor face time. My educated guess is that the doctor spent about five minutes reviewing the bone scan and three and a half minutes documenting the appointment. So we’ll say the doctor spent 11 minutes total on Andrew’s case. That’s still a billed rate of $11.73 per minute, reduced to $8.46 per minute by insurance. Andrew’s insurance agreed to a rate of $507.60 per hour.

In contrast the couple had been at the office for one and a half hours. They had a forty minute round trip commute to the office. It took 7 more minutes after seeing the neurosurgeon to schedule with the shoulder specialist. That means Andrew had invested well over 2 hours of his time to get 2 and a half minutes of interaction with a doctor who didn’t tell him shit. He had to dip into his paid time off allowance to go to this appointment. Andrew makes about $37.50/hr. Dana freelances so we’ll leave her income out of the equation. According to work.chron.com, after six years in practice, the average salary for a neurosurgeon is about $589,500 a year, or $283.41/hr, based on a 40 hour work week. This surgeon has been in practice for 27 years so I think that is a conservative salary estimate. Just imagine if Andrew had made the current minimum wage of $7.25 an hour with no paid time off. Imagine how that loss of work would have affected the family’s finances!

With these types of money for time disparities Dr. Neurosurgeon should have been a little more sympathetic to Dana and Andrew’s inquiries. I fully understand the costs of staff and other overhead, but charging $129.00 for 2.5 minutes with a physician who offers very little information is unacceptable.

Hormones spelled out in yellow and red magnets with stethoscope curled around the word.

The Politicization of Women’s Health, A response to Robyn Stein DeLuca’s TED talk.

 

This TED talk came to my attention when it was posted in a PMDD forum. Other women in the forum responded that the talk seemed invalidating and dismissive of the very serious illness they live with. I tend to agree with the feedback of the women affected by PMDD. This is my analysis.

The speaker, Robyn Stein DeLuca, opens by gauging the audience’s familiarity with the concept of PMS. She establishes that PMS is a familiar concept with easily recognizable symptoms. She goes on to point out that mainstream American media accepts and propagates ideas and assumptions about PMS.

DeLuca then drops her bombshell that after five decades of research the jury is still out on PMS. It’s poorly defined, treatment protocols vary…it may not even be real! She explains how historically the symptoms of the disorder described by psychologists varied so greatly that the very definition of PMS became meaningless!

She outlines the shabby research techniques and protocols that characterized presumably the five decades of research she referred to earlier. She claims that the DSM “…in 1994…redefined PMS as PMDD, Premenstrual Dysphoric Disorder.”

Actually the DSM didn’t distinctly include PMDD until DSM V, which was released in 2013. Prior to that, the DSM 4 included PMDD not as a distinct mental illness, but as a “depressive disorder not otherwise specified.” Deluca heralds the clarity established by the diagnostic guidelines offered in DSM 5. She then points out that under the new criteria in DSM 5 the number of women affected by PMDD turns out to be only 3-8%, which she considers “not even a lot of women.”

So DeLuca opens with a claim that five decades of research hasn’t supported the premise that PMS exists. Then she points out how poorly conducted much of that research was.

Okay…you are using five decades of research that by your own reports is worthless to support your premise that PMS is a dangerous and erroneous cultural creation? It’s generally a bad idea to use volumes of poorly conducted research as support for anything. And a mere 3-8% of the world’s female population are affected? If women are slightly less than 50% of the estimated 7 billion humans on this planet, and about 2 billion of these 3.5 billion women are menstruating, then the low estimate or 3% of menstruating women translates to roughly 60 million women with PMS/PMDD…whichever she is calling it right now…because she wants to undermine a PMDD diagnosis by conflating it with a cultural concept of PMS!


Head spins…

She goes on to posit that, “the PMS myth” persists because of cultural limitations on the role of women.

Now I won’t argue for a minute that many cultures, especially the American one to which she is primarily referring, frequently limit the roles of women. Popular conceptions of PMS have been used by sexist people to minimize women’s speech and self-advocacy. That is undeniable. But the irrational interpretations of a sexist culture have zero bearing on whether a medical condition is real.

Many well established medical conditions are stigmatized and used to oppress individuals affected by the conditions. Think of any disease that might cause a person to wear a colostomy bag, think leprosy, think any one of legions of mental illnesses. Simply because a sick culture uses a diagnosis to oppress a person with the diagnosis does not mean there is no validity to the diagnosis. The cultural interpretation of the illness needs to be addressed, the disease doesn’t need to be denied.

DeLuca’s assertion that PMS is a largely Western concept is irrelevant also. Lots of women’s health issues are more marginalized in non-Western societies. That has no bearing on their realness or validity. If society at large and physicians in particular choose not to discuss for instance the high infant mortality rate in any country whose society doesn’t hold women in high regard, that doesn’t mean high infant mortality doesn’t exist in that country. [I am aware that infant mortality affects more than women. I use this example because societies that relegate childcare exclusively to women may view it that way]. That means it isn’t talked about or researched in that country.

To state or imply that diagnosis and treatment of PMS or PMDD is anti-feminist is more hurtful to 60 million women than any run of the mill sexism. To have other women, who we would hope are our allies, take a stand to deny us diagnosis and treatment for a life threatening condition is morally reprehensible.

Because that’s what PMDD is. It’s a life threatening condition. The 3-8% of women who are affected by this disease experience job loss, relationship difficulties, relationship loss, depression, and even death by suicide. And this woman thinks it is helpful to stand up in a forum like a TED talk and tell people that it’s really no big deal that over 60 million human beings deal with this disease every month? To suggest it is a cultural problem and not a medical problem? She criticizes what she calls “the medicalization of women’s reproductive health.” I criticize the politicization of a medical disorder. I criticize speech that discourages further well conducted research into cures for a disease that kills females and only females.

The root of the problem is not a cultural misperception about PMS. The root of the problem is that an endocrinological disorder is being treated as a mental illness. The problem is that the hormonal health of women is being handed to psychologists and psychiatrists for treatment. Imagine going to a psychiatrist for your diabetes or your hypothyroidism. What do you think the outcome would be? What do you think the data would show? Imagine a man being told to go to therapy instead of being given testosterone supplementation for age related testosterone production changes.

DeLuca says that, “…the success of medication in treating PMS symptoms vary from woman to woman.” She uses that as evidence to support the invalidity of a PMS diagnosis. Of course the success rate of using psychiatric drugs to treat a hormonal disorder would have varying rates of success! Considering the efficacy of antidepressants to treat depression is disputed, with estimates ranging all over the place, it’s not surprising that the efficacy is unpredictable when you prescribe a psychiatric drug for an endocrine condition. I’m sure you’d find the same kind of inconsistency if you prescribed Prozac for erectile dysfunction. A man just might get an erection because increased serotonin made him happier overall.

But wait, we’re talking about women.

This presentation is so off base. The problem isn’t that a make believe, culturally based illness is being given credence. The problem is that a hormonally based illness is being investigated by mental health professionals, simply because one aspect of its presentation is similar to recognized mental illnesses. The problem that American society uses the term PMS to dismiss or demean women’s emotional states is a completely separate issue from research and treatment of a disease that may affect more than 60 million women. The problem is that an educated women would stand up in front of an audience of thousands and undermine the health concerns of millions of fellow women.

Let’s not back away from helping women because existing research is incomplete or inconclusive. Let’s fund more and better studies. Let’s take seriously the complaints of millions of women that their health is being affected by their hormones. Let’s listen to women’s voices instead of dismissing them.

Update Jan 2017: Science supersedes Deluca’s biased and hurtful interpretation of PMDD: https://www.nih.gov/news-events/news-releases/sex-hormone-sensitive-gene-complex-linked-premenstrual-mood-disorder

Hands of person in white doctor's coat shown typing into a computer keyboard.

What Your Records Say Can Hurt You

Do you have inaccurate or outdated information in your medical records?

Errors, misdiagnoses, and former diagnoses in your records can have far reaching consequences on your health and well being.

Right now in the United States, only some health care professionals have access to your medical records. One provision of the Affordable Care Act was to require that any health system that accepts coverage such as Medicare and Medicaid transition to the use of electronic medical records.

Typically if you see a doctor at one health care system, only providers in that system will be able to see your records, unless you voluntarily share them outside of that system. If Pleasant County Health System has your records, all providers associated with Pleasant County can see your records, though they should only be looking if they have good reason. If you share records from Pleasant County Health System with a doctor who works in Happy Basin Health System, all of Happy Basin’s staff will have access to your records.

But in the future this will change. The goal in health care information technology is something called interoperability, which means your records from any health system will be visible at any other place you seek treatment. Explore the US government’s Interoperability Roadmap here. Eventually interoperability will exist worldwide.

Isn’t that a good thing?

Yes…well, ideally it is.

If all of your records are accurate, this sharing helps make sure the care you get at any facility takes into consideration all the conditions you have. If the new doctor you are visiting while in another town needs to see the lab results or an allergy list from your primary care provider, she can see them. That goes a long way to prevent retesting and guesswork, especially in an emergency situation.

But if your records contain errors, the opposite can happen.

Say your medical record from Pleasant County Health reports that you have bipolar disorder. You may not actually have bipolar disorder, but you once saw a psychiatrist (doctor #1) at Pleasant County who thought you did. Doctor #1 put bipolar disorder in your medical records. When you see doctor #2 at Pleasant County for fatigue, weakness and muscle aches Dr. #2 may be short on time or competence and assume your fatigue, weakness and muscle aches must be associated with a depressive episode from your bipolar disorder. Dr. #2 may miss a problem with your thyroid in part because of Dr. #1’s diagnostic error. We all hope that doctors like # 2 don’t fall prey to bias, but hope won’t get you good health care.

Does this really happen? Unfortunately, yes. Here’s a piece from the New York Times about something called diagnostic overshadowing. Diagnostic overshadowing is the term used for when a patient’s coexisting condition is believed to result from their mental status, and a thorough investigation into the coexisting condition isn’t made because of the assumption that patient’s problem is psychiatric, rather than physical.

Uh oh. What can I do?

You can write to the facility that holds your records and ask to have them changed or amended. Provide as much evidence as you can to support your case. The facility must review your request and respond.

In the United States, the department of Health and Human Services oversees administration of HIPAA law, which governs the handling of your medical records. If you see an error in your records; the law provides for you request an amendment to your health record or information. Below is a part of the statute that governs amendments to health records.

Visit the Health and Human Services website for more information. The information below is from that source.

§ 164.526 Amendment of protected health information.

(a) Standard: Right to amend.

(1) Right to amend. An individual has the right to have a covered entity amend protected health information or a record about the individual in a designated record set for as long as the protected health information is maintained in the designated record set.

(2) Denial of amendment. A covered entity may deny an individual’s request for amendment, if it determines that the protected health information or record that is the subject of the request:

(i) Was not created by the covered entity, unless the individual provides a reasonable basis to believe that the originator of protected health information is no longer available to act on the requested amendment;

(ii) Is not part of the designated record set;

(iii) Would not be available for inspection under§ 164.524; or

(iv) Is accurate and complete.

(b) Implementation specifications: Requests for amendment and timely action.

(1) Individual’s request for amendment. The covered entity must permit an individual to request that the covered entity amend the protected health information maintained in the designated record set. The covered entity may require individuals to make requests for amendment in writing and to provide a reason to support a requested amendment, provided that it informs individuals in advance of such requirements.

(2) Timely action by the covered entity.

(i) The covered entity must act on the individual’s request for an amendment no later than 60 days after receipt of such a request, as follows.

(A) If the covered entity grants the requested amendment, in whole or in part, it must take the actions required by paragraphs (c)(1) and (2) of this section.

(B) If the covered entity denies the requested amendment, in whole or in part, it must provide the individual with a written denial, in accordance with paragraph (d)(1) of this section.

(ii) If the covered entity is unable to act on the amendment within the time required by paragraph (b)(2)(i) of this section, the covered entity may extend the time for such action by no more than 30 days, provided that:

(A) The covered entity, within the time limit set by paragraph (b)(2)(i) of this section, provides the individual with a written statement of the reasons for the delay and the date by which the covered entity will complete its action on the request; and

(B) The covered entity may have only one such extension of time for action on a request for an amendment.

So find out what’s in your medical records and request to have corrections made if you find errors. You can get your records by requesting them from the provider’s office or sometimes from a medical records department affiliated with your provider’s office. In many cases, records are available online through patient portals.

 

From Trauma to Trauma

I believe physicians have the moral obligation to make diagnoses based on science and evidence. My experience, however, is that far too many physicians make diagnoses based on feelings and unexamined biases against a backdrop of science and evidence.

In 1999 I became very ill.  It was the start of a journey that would take me through the often incapable hands of many medical professionals and ultimately result in damage to my brain. I sought the help of professionals to heal the wounds my mind had sustained from childhood trauma. In addition I had undiagnosed auditory processing disorder and premenstrual dysphoric disorder that went ignored despite years of complaints. 16 years later, I am beyond the childhood trauma but disabled as a result of iatrogenic brain injury.

I learned during my healthcare journey that the most deadly epidemic patients in the United States face isn’t heart disease, cancer, or obesity. The most deadly epidemic is health care employee ego. The second most deadly epidemic is bias among health care providers that prevents them from systematically applying logic when problem solving.

While this blog is inspired by my disastrous journey in search of appropriate diagnosis and treatment; it will also address other contemporary issues in medical and health care administration ethics that are relevant to everyone who ever sets foot in a doctor’s office, hospital, or clinic.

These writings will discuss neglect, abuse, and trauma. These writings will discuss mental illness. These writings will discuss prejudice and assumptions. These writings will discuss surviving all of these things and moving forward to try to heal a system so sick that it can take a cold and turn it into pneumonia. A system that can take anxiety and turn it into crippling panic; a system that can kill when it is supposed to cure.

In my journey I have discovered that there is a huge divide in expectation between medical consumers and medical professionals. Public health agencies, and even some health systems wisely recommend that patients ask questions and become informed about their health. An informed consumer can make healthy choices. Sadly, many physicians aren’t interested in the type of dialogue that promotes understanding. Too many physicians are interested solely in a monologue the offers the patient only tiny bits of information the doctor deems most important. Physicians often underestimate or overestimate a patient’s potential for understanding. A true dialogue rarely takes place during a doctor’s visit. Sometimes this is because of time constraints, but more often it is due to ego constraints.

Excessive self-confidence interferes with genuine inquiry and responsible exercise of logical investigation.

If the arrogance, ego, and irrationality endemic in healthcare culture continues to grow unchecked, no attempts at building a healthier society will be successful. The consequences reach far beyond the individual patient. They extend to the patient’s family, the patient’s employer, health insurance companies, social service agencies, welfare and safety net programs, local and national economies, and society at large. If a sick patient can’t get well because of how they are treated when they seek help, everyone suffers.