Saturday, February 26, 2011

Harvey Cushing: Rocking Modern Medicine

Famed neurosurgeon's century-old notes reveal 'modern' style admission of medical error

Science Centric
22 February 2011 23:32 GMT

The current focus on medical errors isn't quite as new as it seems. A Johns Hopkins review of groundbreaking neurosurgeon Harvey Cushing's notes, made at the turn of the last century, has turned up copious documentation of his own surgical mishaps as well as his suggestions for preventing those mistakes in the future.


Authors of the article, published in the Feb. Archives of Surgery, suggest that such open documentation may have played an important role in spurring groundbreaking medical treatment advances in Cushing's era - and could have the same effect today.


'Acknowledging medical errors is evidently something that doctors identified early on as critical to advancement a very long time ago,' says principal author Katherine Latimer, B.S., a medical student at the Johns Hopkins University School of Medicine.


Latimer and her colleagues scoured Johns Hopkins' archives to locate operative notes covering 878 of Cushing's patients. The notes, transferred decades ago to microfilm, covered the early years of Cushing's career, from 1896 to 1912, at The Johns Hopkins Hospital. After deciphering the notes - a monumental task, the authors say, owing to Cushing's poor handwriting, abbreviations, and pages crowded with notes of other physicians, too - the researchers selected 30 cases in which errors were clearly delineated.


The cases fell into categories of errors similar to those that plague doctors today, the authors said, classifying 11 of the cases as errors of judgement in which Cushing made the wrong choice during a surgery. One example: operating on the wrong side of a patient's brain. Seventeen cases were identified as 'human error,' mistakes in which Cushing revealed clumsy or careless behaviour, such as dropping an instrument into a surgical wound. Three of the errors were considered equipment or tool oversights, such as the case in which a woman's heavy bleeding left Cushing and his colleagues without enough wax, a substance used at the time to seal blood vessels.


Latimer and her colleagues say they were surprised by Cushing's frank and copious documentation of his own shortcomings. His notes acknowledged mistakes that may have resulted in patients' deaths, as well as those that didn't seem to harm patients' outcomes. They said the documentation took place in an era in which malpractice litigation was becoming a growing concern for doctors. Though malpractice penalties were substantially smaller in Cushing's day, lawsuits presented a serious risk for physicians' reputations, the authors noted.


The authors also emphasised that Cushing practised in a time of enormous surgical innovation. For example, patient mortality from surgical treatment of brain tumours fell from 50 percent to 13 percent during his career. While some of this jump ahead was due to improving technology, the authors propose that part of the reason was open documentation of errors, which helped Cushing and other surgeons develop fixes to avoid them.


'People are human and will make medical mistakes,' says Latimer, 'but being vigilant about your own shortcomings is critical to improving. To keep medical innovation flowing, we need to strive to maintain this same vigilance today.'


Alfredo Quinones, M.D., associate professor of neurosurgery at the Johns Hopkins University School of Medicine and senior author of the study, adds that today's medical errors continue to have a tremendous impact on patients and their families. 'Recognising errors and reporting them can help us greatly improve medicine,' he says. 'After all, we are all working towards the same goal: better patient care.'

Story from Science Centric | News
http://www.sciencecentric.com/news/11022234-famed-neurosurgeon-century-old-notes-reveal-modern-style-admission-medical-error.html


Friday, February 25, 2011

Pay No Attention to the Girl Behind the Smile

There are so many things I wish people knew about me but I won’t say, because you don’t ask; and when you do, you’re not truly listening.

-- an oldie but a goodie I food when reading my blog

Thursday, February 24, 2011

Sleep

Cushing's: Disease of the Night

Cushing's is a disease of the night. Fluctuating cortisol levels keep our bodies captive in a sleepless cave: one night, we may find sleep; other nights, it eludes us.

After drudging through a day of dental work and laundry yesterday, I was happy to climb in bed early. I slept soundly from 9 pm to 12:40 am.

-- ZING -- My eyes popped open.

I was wide awake until 5 am but i was to restless to sleep. My toddler daughter woke up extra early at 6 am, and I think I dozed off with her in the bed with me around 7:30 am. She played on my iPhone. She woke me up at 7:50 am, pulling the lamp string on and off, saying "Mama get up. Get uuuuppppp. Get uuuuppppp. Get uuuuppppp. Get uuuuppppp." So, because her life depended on it, I got up. We were up until we napped from 3-5 pm. I was awake from 12:40 am to 3:00 pm. Now, it is 10:00 am, I hope I can sleep through the night. If you see Mr. Sandman hanging around Go, please send him my way.

Despite my two batches of high test results and the tumor sighting, my body insists on pumping out more cortisol. I don't need all the extra anymore! Oh, I just realized. I didn't cc: my body on the email below, giving it a reprieve from all that cortisol pumping. I forgot to announce that it doesn't have to perform on command anymore (not that it really ever did but it succeed in doing the opposite aka Costanza's move). I failed to mention that there is no need to show off its full-figured, more-to-love cortisol stock pile anymore. So listen up, T-T-T-Tumor Willison Phillips. I am almost to surgery. Let's all try to get along and get some rest. No more midnight parties, please. I know you know the end is near, that your days are numbered. I hope you do go down without a fight, because whether you like it or not, I'm gonna have to cut you out of my life. Capice?

-m

Hospital Pain Scale

This is the best thing I have read in a looonnnnggg time. I plan to tape it to my rolling table bridge over my lap thing while I'm in the hospital for my 2nd pituitary brain surgery. Hooray for better communication. ~m

Boyfriend Doesn't Have Ebola. Probably.

http://hyperboleandahalf.blogspot.com/2010/02/boyfriend-doesnt-have-ebola-pro...

Wednesday, February 23, 2011

Plop Plop Fizz Fizz: Oh What a Relief It Is

I have some very good, very personal news to share!! I wrote an email to my LA endocrinologist, cc:ing the neurosurgeon. It's easier to paste than summarize again. Here we go!

***********

I met with Dr. [Neurosurgeon] yesterday, February 22, 2011. We reviewed my dynamic 3T MRI of the pituitary dated 1/12/11, and Dr. [Neurosurgeon] immediately identified two areas of suspicion in the sequence when the dye entered the pituitary. The target area is a 3 millimeter tumor located on the right side of the pituitary. He also identified a suspicious area adjacent to where the left tumor was resected during the last pituitary surgery. The white arrow points to a tumor, aka dark area aka "area of hypoenhancement" in radiology terms.

[note: the radiologist read this 19-month post op MRI as a normal post operative scan. Radiologists are often wrong. I repeat, Radiologists are often wrong! You must have your pituitary MRIs read by a neurosurgeon. Do not stop pushing for a Cushing's until you get it].


Dr. [Neurosurgeon] is awaiting a final letter from you regarding your findings and recommendations. He is willing to accept me as his surgical patient for a second pituitary surgery.

Since your last email, I have a second positive value: a high on a salivary cortisol test supporting hypercortisolemia. It occurred the same night as my high midnight serum cortisol draws on 2/11/11. MN cortisol serums (normal
2011-02-12 @ 0037 – 1.9 (ug/dL)
2011-02-12 @ 0007 – 3.1 2011-02-11 @ 0035 – 9.7 // diagnostic for Cushing's 2011-02-11 @ 0010 – 8.4 // diagnostic for Cushing's

2011-02-10 @ 0045 – 8.7 // diagnostic for Cushing's 2011-02-10 @ 0015 –11.1 // diagnostic for Cushing's

2011-02-09 @ 0040 - 9.2 // diagnostic for Cushing's
2011-02-09 @ 0010 - 9.8 // diagnostic for Cushing's

2011-02-08 @ 0023 - 5.6 // suggestive of Cushing's

2011-02-07 @ 0030 - 5.1 // suggestive of Cushing's
2011-02-07 @ 0000 - 5.0 // suggestive of Cushing's

2011-02-06 @ 0034 – 3.3
2011-02-06 @ 0013 – 2.6
MN salivary cortisol (normal
2011-02-12 @ 0034 – 0.051

2011-02-12 @ 0009 – 0.071 2011-02-11 @ 0033 –0.180 // diagnostic for Cushing's (CORTISOL DOUBLED IN 29 MINUTES)

2011-02-11 @ 0004 – 0.087 2011-02-09 @ 0045 – 0.085 Based on these findings, are you ready to clear me for a second pituitary surgery? Dr (neurosurgeon) reviewed the benefits and risks of a second pituitary surgery. He mentioned the short-term possibility of diabetes insipidus and cited the chance for a cerebrospinal fluid leak to be 15-20%, which would require a few more days in the hospital lying flat on my back. We discussed fertility, and Dr. McCutcheon stated that having a second pituitary surgeon would like hurt the chances of maintaining fertility going forward. My husband and I discussed fertility after the appointment. We both agreed that the next step is a second pituitary surgery. We both struggle with my compromised quality of life, and we know that, above all else, is our top priority. We are not willing to consider a bilateral adrenalectomy (BLA) now, since there is a clear target for pituitary surgery, and a life on replacement steroids is scary for us. A miracle baby will follow if it is meant to be. We are still excited for what the future holds for us.

I look forward to your recommendations, and I hope surgery will be in my near future.

Sincerely,

Melissa


On Thu, Feb 17, 2011 at 12:37 AM, my Los Angeles endocrinologist:

These look high-let's see the stuff you sent to the Esoterix lab and [the neurosurgeon's] read on your mri. I like to see a 2nd positive value [indicating high cortisol].
Glad you are happy.


***********

Can you see me smiling from ear to ear! I am so happy!!!
~ m

Tuesday, February 22, 2011

PNA Webinar: "Thoughts, Feelings, and Behavior: What does the Pituitary Have to do with These?" - Library - Article | Pituitary Network Association

Many people watching the physical demise of a Cushing's patient may believe that the struggle to diagnosis makes us depressed. While that is true and worthy of every drop of depression, in actuality, that is only part of the story.  Tumors cause the pituitary to send out error messages that cause many hormones to sputter and malfunction. This resulting hormone imbalance leads to depression, anxiety, mood swings, and suicidal thoughts.

NOT TOO FUN. ~m

* * * * * * * * * *

PNA Webinar: "Thoughts, Feelings, and Behavior: What does the Pituitary Have to do with These?" - Library - Article

Pituitary Network Association, www.pituitary.org

This presentation covered the following:

  • The basics of the hormone system
  • How stress affects the pituitary gland
  • The purpose of emotions and how they interact with the body
  • Some of the mental health symptoms commonly associated with pituitary and other hormonal disorders
  • What you can do to help yourself or a loved one with the mental and physical symptoms of and endocrine disorder

Cortisol Levels, Thyroid Function and Aging

Thank you to my dear Cushie friend Cyndie for this excellent find.

*  * * * * * * * * * *

HOW CORTISOL LEVELS AFFECT THYROID FUNCTION AND AGING

Interview with David Zava, Ph.D

JLML: Cortisol is needed for nearly all dynamic processes in the body, from blood pressure regulation and kidney function, to glucose levels and fat building, muscle building, protein synthesis and immune function. You’ve been specifically studying the effects of cortisol on thyroid function.

DTZ: Yes, one of cortisol’s more important functions is to act in concert or synergy with thyroid hormone at the receptor-gene level. Cortisol makes thyroid work more efficiently. A physiologic amount of cortisol—not too high and not too low—is very important for normal thyroid function, which is why a lot of people who have an imbalance in adrenal cortisol levels usually have thyroid-like symptoms but normal thyroid hormone levels.

JLML: Would you explain this thyroid-cortisol relationship in more detail?

DTZ: One way to understand the synergy of cortisol and thyroid is to think of trying to turn on a big round valve with one hand, as opposed to two hands where you can really grip it and turn it on. Both thyroid and cortisol have to be there in the cells, bound to their respective receptors at normal levels, to efficiently turn the valve on and get gene expression. So, when cortisol levels are low, caused by adrenal exhaustion, thyroid is less efficient at doing its job of increasing energy and metabolic activity.

Every cell in the body has receptors for both cortisol and thyroid and nearly every cellular process requires optimal functioning of thyroid.

JLML: And what happens when cortisol levels get too high?

DTZ: Too much cortisol, again caused by the adrenal glands’ response to excessive stressors, causes the tissues to no longer respond to the thyroid hormone signal. It creates a condition of thyroid resistance, meaning that thyroid hormone levels can be normal, but tissues fail to respond as efficiently to the thyroid signal. This resistance to the thyroid hormone signal caused by high cortisol is not just restricted to thyroid hormone but applies to all other hormones such as insulin, progesterone, estrogens, testosterone, and even cortisol itself. When cortisol gets too high, you start getting resistance from the hormone receptors, and it requires more hormones to create the same effect. That’s why chronic stress, which elevates cortisol levels, makes you feel so rotten—none of the hormones are allowed to work at optimal levels.

Insulin resistance is a classic example. It takes more insulin to drive glucose into the cells when cortisol is high. High cortisol and high insulin, resulting in insulin resistance, are going to cause you to gain weight around the waist because your body will store fat there rather than burn it.

JLML: This would certainly be a significant effect when it comes to creating balanced hormone levels.

DTZ: When cortisol is high the brain also is less sensitive to estrogens. That’s why you can have a postmenopausal woman with reasonable amounts of estrogen, but when you put her under a stressor and her cortisol rises, she’ll get hot flashes, which are a symptom of estrogen deficiency. She really doesn’t have an estrogen deficiency, the brain sensors have just been altered. If you then drive the estrogen levels up with supplementation to treat the hot flashes, she’ll start getting symptoms of estrogen dominance like weight gain in the hips, water retention, and moodiness. And the hot flashes usually don’t go away.

This is why you often can’t effectively treat someone with hormonal imbalance symptoms such as hot flashes by simply adding what seems to be the missing hormone, be it thyroid, progesterone, estrogen or testosterone. If your cortisol is chronically high you’ll have overall resistance to your hormones.

Click here for full article; http://www.virginiahopkinstestkits.com/cortisolzava.html


Sunday, February 20, 2011

DENTAL WORK: Thanks a lot, Cushing's!

I am having a lot of dental problems. Just went to the dentist this past Monday. She was showing me cracked teeth, chipped teeth, broken crowns, broken fillings -- plain as day in the photographs on the screen in front of me.  Undeniable. I was shocked and mortified!

After going tooth by tooth, detailing what she recommends for treatment, the dentist asked, "Do you grind your teeth?" I said, "I did when I was younger, but I don't know now." She said that bruxism or teeth grinding appears to be the cause of the damage to my teeth. I asked her what causes that, and she said, stress.

HELLO!

I saw a dentist just last year, when I thought I chipped a tooth on a piece of hard candy. I didn't have the chipped tooth after all, but he didn't mention any of this other damage. We even discussed Cushing's because his teenage cousin had just gotten some high cortisol tests. So, I don't know if all this damage has happened in the last 12 months while my cortisol has been getting higher or not.

So, I am in for $2500 of dental work plus a mouth guard, which can't be fitted until I get all the other repair work done. My dental insurances covers $1500, so I plan to pursue additional money from the medical insurance, since of courses, this problem is the results of a medical condition -- 255.0. Has anyone ever tried that? Regardless, I'm gonna try to get the medical insurance to reimburse me some of the money. Just another fight on my hands, I am sure.

Boo, Cushing's. Boo to you.

Saturday, February 19, 2011

2009 article on Cyclical Cushing's

A member of the message boards shares this article yesterday. Thank you!

Lower cure rates, lower adenoma id, older patients, longer follow-up. This is an interesting paper.

The prevalence and characteristic features of cyclicity and variability in Cushing's disease.

BlogTalkRadio with Dr. Friedman

Struggling with Cushing's?
Undiagnosed but your gut says you have it?
Post op pituitary surgery?
Persistent Cushing's and still sick?
Pre-op or post-op bilateral adrenalectomy? 

This series of free online radio chats are for you.

MaryO, founder of Cushings-Help.com and Cushie.info, and Robin, active board member/blogger of Survive the Journey and Cushing's 365, interview Dr. Theodore Friedman, an endocrinologist based in Los Angeles, CA.  Dr Friedman has helped many fellow Cushies, and I am proud to have him as my doctor now.

- CushingsHelp | Internet Radio | Blog Talk Radio -
Second Interview with Dr. Ted Friedman DR. F 3/12/2009

Dr. Ted Friedman Returns for his Third Interview 2/13/2011

In his private practice, Dr Friedman charges $450 an hour for his time. He has generously donated three hours to us Cushies in these blog chats, and it is far more valuable than the $1,350 you would have paid if you had the exact same conversations in his office. This information is priceless, because it *empowers* patients with knowledge to overcome this rare and rascally disease that doesn't want to go down without a fight.

These chats explain why our local endocrinologists' conventional understanding of and protocol for cushing's does not help all of us. In fact, Dr. Friedman helps us understand that the process of testing, diagnosis, treatment, and surgery (-ies) for patients with cyclical cushing's is very different from florid Cushing's patients.  He and his colleagues work very hard to ensure his research findings make their way into the medical literature in hopes of shaping future treatment of mild or episodic Cushing's patients. Also, be sure to read Dr Friedman's latest paper, aptly titled:

High Prevalence of Normal Tests Assessing Hypercortisolism in Subjects with Mild and Episodic Cushing’s Syndrome Suggests that the Paradigm for Diagnosis and Exclusion of Cushing’s Syndrome Requires Multiple Testing

Thursday, February 3, 2011

Spinning Out of Control

I am pleased to see more and more articles about Cushing's on the internet. I repost them here, hoping that someone will see themselves in one of these articles.  If I can help someone put a name to what ails them, then I have done my small part.

However, I do want everyone to realize that not all cases of Cushing's are resolved with one surgery. I know many people who go on to have more than one pituitary surgery, and maybe even a bilateral adrenalectomy in an effort to stop cortisol production at the source. Some even go on to have gamma knife radiation to zap remaining ACTH-producing cells on their pituitary.

Patients with cyclical/ periodic/ episodic/ persistent Cushing's will struggle much more with diagnosis, treatment, and cure.  Please just keep this in mind.

~Moxie Melissa

* * * * * * * * * *

Spinning Out of Control

Unexplained symptoms left Shana Leslie feeling like an old woman trapped in a 30-year-old’s body.

Throughout 2007, Shana Leslie* developed acne, experienced increasingly shorter menstrual periods and gained more than 20 pounds, mostly in her midsection. Her friends were not surprised. “I had just turned 30, was in the middle of a divorce and had recently been promoted at work,” says Ms. Leslie. “So everybody told me it was related to stress.”

Spinning Out of Control: Cleveland Clinic's Diagnosis Challenge, Summer 2010

Tuesday, February 1, 2011

New Testing Protocol is Needed

Are you struggling to get diagnosed?  Is your doctor refusing to order any more cortisol tests because the ones you have had came back normal? Do you feel in your gut that Cushing's encapsulates ALL the odd symptoms that you've had for years that no doc can really treat or cure? Well, this is the article you have been waiting for.

Dr. Friedman's latest paper outlines the need to reconsider the testing protocol for patients who experience episodic or cyclical Cushing's. This is a good read.

http://www.goodhormonehealth.com/symptoms/episodic%20cushings-hmr.pdf

High Prevalence of Normal Tests Assessing Hypercortisolism in Subjects with Mild and Episodic Cushing’s Syndrome Suggests that the Paradigm for Diagnosis and Exclusion of Cushing’s Syndrome Requires Multiple Testing
T. C. Friedman,1 D. E. Ghods,1 H. K. Shahinian,2 L. Zachery,1 N. Shayesteh,1 S. Seasholtz,1 E. Zuckerbraun,1 M. L. Lee,1 and I. E. McCutcheon3
1Division of Endocrinology, Metabolism, and Molecular Medicine, Charles Drew University of Medicine and Science, Los Angeles, CA, USA
2Skull Base Institute, Los Angeles, CA, USA
3Department of Neurosurgery, MD Anderson Medical Center, Houston TX, USA
Correspondence T. C. Friedman, MD, PhD Charles Drew University of Medicine & Sciences, Division of Endocrinology, 1731 E. 120th. St., CA 90059, Los Angeles, USA, Tel.:+1/310/668 5197, Fax: +1/323/563 9324theodorefriedman@cdrewu.edu

Many Endocrinologists believe that a single determination of eucortisolism or a single demonstration of appropriate suppression to dexamethasone excluded Cushing’s syndrome, except in what was previously thought to be the rare patient with episodic or periodic Cushing’s syndrome. We hypothesize that episodic Cushing’s syndrome is relatively common and a single test assessing hypercortisolism may not be sufficient to accurately rule out or diagnose Cushing’s syndrome and retrospectively examined the number of normal and abnormal tests assessing hypercortisolism performed on multiple occasions in 66 patients found to have mild and/or episodic Cushing’s syndrome compared to a similar group of 54 patients evaluated for, but determined not to have Cushing’s syndrome. We found that 65 of the 66 patients with Cushing’s syndrome had at least one normal test of cortisol status and most patients had several normal tests. The probability of having Cushing’s syndrome when one test was negative was 92 % for 23:00 h salivary cortisol, 88 % for 24-h UFC, 86 % for 24-h 17OHS, and 54 % for nighttime plasma cortisol. These results demonstrated that episodic hypercortisolism is highly prevalent in subjects with mild Cushing’s syndrome and no single test was effective in conclusively diagnosing or excluding the condition. Rather, the paradigm for the diagnosis should be a careful history and physical examination and in those patients in whom mild Cushing’s syndrome/disease is strongly suspected, multiple tests assessing hypercortisolism should be performed on subsequent occasions, especially when the patient is experiencing signs and symptoms of short-term hypercortisolism.

http://www.goodhormonehealth.com/symptoms/episodic%20cushings-hmr.pdf