Sunday, March 31, 2013

Endoscopic v. Microscopic pituitary surgery

I am learning new things about Cushing's even six years after first seeing the word in print. I did not fully understand the surgical difference and thus possible benefits of endoscopic surgery. For the life of me, I can't remember which I had on my two surgeries, and not much slips by me. I feel like neurosurgeons and even endocrinologists don't emphasize this difference. This made other patients and me believe we were getting the same surgery while at different facilities, but we are not. 

As I continue to determine my next step for treatment after two failed pituitary surgeries and six long years seeking diagnosis and treatment, my mind gets tangled in all the unknowns. I wonder what small change could have led to cure. It might not be helpful, but it does keep me researching and sharing what I find here.

Patient's Symptoms Of Cushing's Disease 
Beginning To Abate After 
Endoscopic Pituitary Cure

Sunday, March 24, 2013

How chronic pain has made me happier

The difficulty in recovering from Cushing's is that for some, it fails to leave us -- despite multiple surgeries or even cortisol-lowering drug therapies. I have room for improvement in this area.

In the article below, Rob Heaton offers an insightful look into chronic pain, and he captures the feelings and emotions surrounding those issues well and turns them into happiness.

When Rob Heaton say chronic pain is like mental illness, I want to add the uncured Cushing's often causes chronic pain and mental illness.

I'll share this short excerpt with you, then please read the entire piece regarding how Rob got happy with chronic pain.

"Chronic pain is like mental illness. It is a squeamish, taboo class of affliction that few people know how to deal with, so you and others dance around the issue and you don't have to admit to any fragility."

How chronic pain has made me happier | Robert Heaton

Saturday, March 16, 2013

Cortisol and Tinnitus

I had my second pituitary tumor resection surgery done at MD Anderson Cancer Center on April 20, 2011. My ears have been ringing with tinnitus ever since. My first evening I awoke after being in recovery, I asked my husband to close the curtains to block out the light and try to be quiet. All sound was bothering me. I woke a little later to see my mother and two sisters whispering in the room. They had come to see me after surgery and my husband relayed my requests. When i returned home, my husband hammered blankets across our bedroom windows to block out sunlight and noise. It was nearly blacked out, and it was my favorite part of the house and vital to my recovery after surgery.

Even today though, I don't like a lot of noise or light in the house. My windows are covered with different blankets but still blacked out. While my husband is at work, I keep the TV off. I hate all the chattering and noise from commercials. I don't listen to music in the car anymore. It's too noisy. I hate it. Yes, this classically-trained-vehicle-singer no longer likes it or does it. My radio is off while on the road.

Since my surgery, for nearly two years, I
have faced tinnitus on a daily basis--loud nonstop buzzing. It is not pulsatile with my heart beat (like another cause of tinnitus). It is not localized in my ears. It is difficult to describe, but I feel like I am wearing a headband that buzzes. I hear the buzzing in both ears, around the top of my head and through my brain. Tonight it is so loud, it sounds like a bug zapper.

I have mentioned my tinnitus to several endocrinologists and neurosurgeons. None have asked follow up questions and none have related it to my fluctuating adrenal hormones. Last week, one stated it was unrelated to the pituitary.

Then I find this article below which states:

"Tinnitus is a frequent, debilitating hearing disorder associated with severe emotional and psychological suffering. Although a link between stress and tinnitus has been widely recognized, the empirical evidence is scant."

Why can't my doctors help me?  Why don't they know what I stumble across on the Internet as medical fact?  Why must I continue to put the pieces together for them to see the diagnostic picture? The Art of Diagnosis is not only exhausting me; it is draining my life light right out of me.

When will someone sweep me off my crippled feet and discover the treatment that will return me to my vibrant self?


BMC Ear, Nose and Throat Disorders 2012, 12:4 doi:10.1186/1472-6815-12-4

Cortisol suppression and hearing thresholds in tinnitus after low-dose dexamethasone challenge

Veerle L Simoens1,2,3 and Sylvie Hébert3,4,5*


Tinnitus is a frequent, debilitating hearing disorder associated with severe emotional and psychological suffering. Although a link between stress and tinnitus has been widely recognized, the empirical evidence is scant. Our aims were to test for dysregulation of the stress-related hypothalamus-pituitary adrenal (HPA) axis in tinnitus and to examine ear sensitivity variations with cortisol manipulation.


Twenty-one tinnitus participants and 21 controls comparable in age, education, and overall health status but without tinnitus underwent basal cortisol assessments on three non-consecutive days and took 0.5 mg of dexamethasone (DEX) at 23:00 on the first day. Cortisol levels were measured hourly the next morning. Detection and discomfort hearing thresholds were measured before and after dexamethasone suppression test.


Both groups displayed similar basal cortisol levels, but tinnitus participants showed stronger and longer-lasting cortisol suppression after DEX administration. Suppression was unrelated to hearing loss. Discomfort threshold was lower after cortisol suppression in tinnitus ears.


Our findings suggest heightened glucocorticoid sensitivity in tinnitus in terms of an abnormally strong glucocorticoid receptor (GR)-mediated HPA-axis feedback (despite a normal mineralocorticoid receptor (MR)-mediated tone) and lower tolerance for sound loudness with suppressed cortisol levels. Long-term stress exposure and its deleterious effects therefore constitute an important predisposing factor for, or a significant pathological consequence of, this debilitating hearing disorder.


FREE:  The electronic version of this article is the complete one and can be found at:

Monday, March 4, 2013

Reoccurrence: A Cushie's Worst Nightmare

Hooray. You somehow heard the word
Cushing's. Someone finally ran the right tests at the right time. You finally got some highs in cortisol and low ACTH (adrenal tumor) or high ACTH (pituitary tumor). A little spot doesn't light up on your mri ("hypointensity") and it is suspicious for a tumor. Ah ha. This is your surgical target.You finally found a genius neurosurgeon but s/he is three states away from you. You organize coverage for the house and kids while your parents and spouse go off to surgery with you. You are finally getting a surgery. You can believe it is finally happening. You wonder if you will every make it out alive and in what condition, what cortisol condition. 

Within a week or a few months, you start suspecting a reoccurrence. This is so unfair. You had surgery yet you still have Cushing's. Returning symptoms don't lie. Lab values don't lie. Doctors even neurosurgeons don't often know what to do with you-- they said they got all the tumor out, so... ?  They don't understand why the labwork shows high cortisol and high ACTH, I mean, they removed pituitary tumor out of your head!

This is one of many moments of true despair in a Cushie's life.

Every Cushing's patient worries about it, and most doctors deny it even is possible. "One surgery will remove the tumor and you'll be back to normal. No problem."  

Yeah, we wish.

This article gives some parameters for
post op ACTH levels - not just cortisol -  that may indicate a cure versus the dreaded reoccurrence. 

All Cushies study articles like this, hoping that their post op numbers fall within the magical range of cured Cushies. We are looking for hope even when there is none to be found.

Note: this is a small study with only 55 patients. Not a large sample size, but hey. Maybe they are on to something.


Recurrences of ACTH-Secreting Adenomas After Pituitary Adenomectomy Can Be Accurately Predicted by Perioperative Measurements of Plasma ACTH Levels

  • Received November 15, 2012.
  • Accepted February 4, 2013.
  1. Baha M. Arafah
  1. Division of Clinical and Molecular Endocrinology, Department of Neurological Surgery, University Hospitals Case Medical Center, Louis Stokes Cleveland Veterans Medical Center And Case Western Reserve University, Cleveland, Ohio 44106
  1. Address all correspondence and requests for reprints to: Baha M. Arafah, MD, Division of Clinical and Molecular Endocrinology, University Hospitals Case Medical Center, 11100 Euclid Avenue, Cleveland, Ohio 44106.


Background: Adenomectomy is the treatment of choice for ACTH-secreting adenomas. Although the development of ACTH deficiency immediately after adenomectomy suggests surgical success, disease recurrence was reported in patients who developed hypocortisolism postoperatively. In the current study, we examined the value of measuring perioperative plasma ACTH and cortisol levels in predicting disease recurrence of patients with ACTH-secreting adenomas.

Methods: Consecutive patients (n = 55; 41 females, 14 males) with clinical, biochemical, and histological documentation of ACTH-secreting adenomas were investigated after pituitary adenomectomy. All patients were followed with clinical monitoring and frequent measurements of plasma ACTH and serum cortisol levels, and none received glucocorticoids unless or until they developed symptoms of adrenal insufficiency or when their serum cortisol levels were ≤3 μg/dL.

Results: Postoperative serum cortisol levels reached ≤3 μg/dL in 46 of 55 and were ≥4 μg/dL in the remaining 9. Simultaneously measured plasma ACTH levels in the latter 9 patients were >40 ng/L when the serum cortisol reached its nadir. In contrast, among the 46 patients who had serum cortisol levels of ≤3 μg/dL, plasma ACTH levels measured simultaneously were ≤20 ng/L in 38 of 46 and >20 ng/L in the remaining 8. During a mean follow-up period of nearly 7 years, patients who had a nadir plasma ACTH of >20 ng/L developed recurrences even though their postoperative serum cortisol levels were ≤3 μg/dL.

Conclusions: Despite profound hypocortisolemia after adenomectomy, a simultaneously measured plasma ACTH level of >20 ng/L in the perioperative period is highly predictive of future recurrence of ACTH-secreting adenomas.

  • Received November 15, 2012.
  • Accepted February 4, 2013.