csr f hunter

Published by The CSRF 65 E. India Row, Suite 22B, Boston, MA 02110-3389 617-723-3674 web site: www.CSRF.net

The Cushing’s Newsletter

The Cushing’s Support and Research Foundation, Winter, 2010

To Share To Aid To Care

Inside This Issue

Summer Outreach page 2

New Members page 3

Post-Surgical Recovery Survey Results page 4

Quality of Life Survey page 5

Doctor’s Answers page 6

Research Studies page 7

Patient Stories page 8

Donations page 12

2011 Membership Dues Yearly Membership dues are now due.

Please use the enclosed envelope to send

in your donation. Or, you can pay your

dues on-line through our website at

www.CSRF.net

Log into the Main Area of Member Services

and select Membership Dues on the sidebar.

If you joined after September 1, feel free to make a

donation, but your dues are not due until next fall.

Thank You For Your Continued Support!

CSRF Exhibits at Endo 2010 For the 15th year in a row, the CSRF exhibited at The

Endocrine Society’s annual meeting! This year’s meeting

was held in San Diego, CA, June 19-22nd. As usual, this

meeting was well attended by both international and national

endocrinologists and endocrine nurses. This exhibit contin-

ues to be an excellent opportunity to let the endocrinology

community know that there is an organization to support

those with Cushing’s. If you are interested in the many ex-

cellent scientific presentations, you can view the abstracts at

www.endo-society.org. Select “Meetings”, then “Annual

Meeting”, then “Endo 2010 Meeting Website.”

Cushing’s Patient Education

Day Audio and Slides still

On-line If you haven’t yet had a chance to view the pre-

sentations from the February, 2010 Cushing’s Patient

Education Day, they are still available for viewing from

our website - www.CSRF.net under What’s New. These

very informative presentations include:

Introduction to the Pituitary Gland and Cushing’s

Dr. Larry Katznelson, Stanford Univ.

Diagnostic Testing for Cushing’s Dr. Lewis Blevins, UCSF

Pituitary Surgery for Cushing’s Dr. Martin Weiss, USC What to Expect During Recovery Dr. Lewis Blevins, UCSF

Radiation Therapy Dr. Mary Lee Vance, UVA

Medical Therapy for Cushing’s Dr. Anthony Heaney, UCLA

Effects of Cushing’s on the Brain Dr. Andre Lacroix, Univ. of Montreal

Cushing’s and Quality of Life Dr. Mary Lee Vance, Univ. of Virginia

Thus far, over 340 people have viewed

over 150 hours of these presentations.

Thank you again to Corcept Therapeutics for

sponsoring this event.

Left to Right: Karen Campbell, Cindy Zacharyasz, Lee Carlson


CSRF Summer Outreach By Ellen K. Whitton

One of my roles as a new Director is to in-

crease outreach for CSRF, to raise awareness of

Cushing’s both among medical practitioners and

the general public. Ably assisted by Carrie

Pledger, I staffed a booth at the American Diabetes

Association’s Annual Scientific Sessions, a 4-day

conference in Orlando, Florida. There were some-

where around 17,000 people in attendance, from

all over the world. One endocrinologist from India

knew about CSRF from one of his patients! The

experience of meeting endocrinologists from

around the world highlighted the need to have our

literature in other languages, particularly Spanish.

I found that the endocrinologists there were

already familiar with Cushing’s, although they

were interested to learn that CSRF is available as a

resource to support their patients. I met the pub-

lisher of Diabetes Health magazine, and we have

been offered the opportunity to write an article for

them. The most valuable contacts we made there

were with diabetes educators and nurses. These

are the folks who really spend time with diabetic

patients, and are well-placed to notice possible

symptoms of Cushing’s. A nurse from the Navy

told me she always checks patients with diabetes

for thyroid problems, and after meeting us, was

thinking about also checking cortisol levels. I

came away from this event feeling that it is with

these diabetes professionals that we can have the

most impact.

In August, I attended the annual convention of

NAAFA, the National Association to Advance Fat

Acceptance in San Francisco. This is an organiza-

tion committed to ending prejudice against people

because of their size, and I thought that among a

group of such large people, there might be undiag-

nosed Cushing’s patients. This convention was

smaller than anticipated, with about 80 people pre-

sent. I had the opportunity for long conversations,

and it became apparent that many extremely heavy

people avoid doctors entirely because of bad ex-

periences of being treated punitively for their

weight. I met Marilyn Wann, a well-known activ-

ist within the size acceptance movement, and

spoke with her about the need for anyone contem-

plating bariatric (weight-loss) surgery to have an

evaluation by an endocrinologist. Although this

was a small group, I think it was an unusual and

valuable opportunity to provide information to

people we might not otherwise reach.

So this summer I had the experience of doing

outreach to both a large group and a small one. It

is extremely difficult to quantify the success of

these efforts; even at a small event, you never

know who might pick up a leaflet and save a life.

So I encourage CSRF members who want to get

involved to look for opportunities to speak with

the public. You don’t need to be an “expert”. At

the event in Orlando, an endocrinologist came up

to me and said, “So, how accurate is midnight sali-

vary cortisol testing?” I said, “I dunno - I’m a pa-

tient!” He burst out laughing and said, “Well, at

least you’re honest!” We are not qualified to give

medical advice, but we can use our own experi-

ence to raise awareness, and direct people to the

real experts.

If you’d like to talk about doing some out-

reach, please contact me at:

[email protected].

Left to right: Carrie and Ellen at ADA in Orlando


Michael

Florence, AZ

[email protected]

Adrenal tumor, 5/10

Rebecca

Rockaway, NJ

[email protected]

Pituitary tumor, 2010

Janka

Sfantu Gheorghe, Romania

[email protected]


Melissa

Ft. Lauderdale, FL

[email protected]

Pituitary tumor, 10/08

Jo

Exmouth, Devon, United Kingdom

[email protected]


Stephanie

Kirkland, WA

[email protected]

Pituitary tumor, 1985 when 12yo

Carolina

Brandon, MS

[email protected]


Pituitary tumor recurrence

Susan

Melbourne, FL

[email protected]

Adrenal tumor

Nicole Mueller

Indianapolis, IN

[email protected]

Diagnosed 9/10

Mark

Lee, MA

[email protected]

Pituitary tumor, recurrence

Radiation, 2008, Wants to help others

Wendi

Sulphur Springs, TX

[email protected]

10yo son with possible Cushing’s

Susan

Chesterfield, MO

[email protected]


Elana

Ellington, CT

[email protected]

Adrenal tumor, 5/10

Teresa

Harvest, AL

[email protected]

Adrenal tumor, 2010

Wendy

Frisco, TX

[email protected]

Katherine

Anaheim, CA

[email protected]


Daniel Beaver, PA

[email protected]

Ectopic tumor

Unilateral adrenalectomy, 2007

Reonee

Copley, OH

[email protected]

Lost a loved one due to Cushing’s

Wants to help others

Jennifer

Bloomfield Hills, MI

313-930-7200

[email protected]


Crystle

New Milford, CT

[email protected]


Welcome to a Few of Our New Members They would love to hear from you!

Karen

District Heights, MD

Adrenal tumor, 9/10

Miri

Los Angeles, CA

[email protected]


Justin

Buffalo, NY

[email protected]

Pituitary tumor recurrence, 2010

Unsuccessful Pituitary surgery

Lorie

Spurger, TX

[email protected]

Adrenal tumor, 2010

Joanne

North West River

Newfoundland and Lab

[email protected]

Adrenal tumor, 2010

Andrea

New York, NY

[email protected]

Adrenal tumor, 12/09


Post-Surgical Recovery in Patients with Cushing’s:

Results of an Open-Ended Survey Created by the CSRF By Brent Abel from the Research Group of Lynnette Nieman, M.D.

National Institutes of Health, Bethesda, MD

As Dr. Mary Lee Vance described in the summer

2009 newsletter of the Cushing’s Support and Research

Foundation (CSRF), post-operative recovery from

Cushing’s syndrome can be long and frustrating. In-

deed, previous work has shown that patients continue

to have subnormal quality of life even after pituitary

and adrenal gland function return to normal. To better

understand the recovery process in patients surgically

treated for Cushing’s syndrome, the CSRF invited sur-

gically-treated members to complete an open-ended

survey about their experiences. Our research group then

clustered the responses to determine how often specific

topics were mentioned. By analyzing this open-ended

survey, we were able to determine the most significant

issues to CSRF members based on the topics that they

mentioned in their responses.

Of the 94 CSRF members who participated in this

survey, 84% reported overall negative recovery experi-

ences. Respondents reported that they had trouble with

(from highest to lowest percentage): lethargy, joint

pains, problems thinking (such as difficulty paying at-

tention or processing information), body weight, and

depression. Patients also were concerned about the lack

of information they received about the recovery proc-

ess. Decisions to taper off exogenous cortisol replace-

ment therapy (CRT) were made by the physician alone

about twice as often as mutual decision-making be-

tween the patient and physician. Though the median

time frame among 69 participants to discontinue CRT

was 11 months (25-75 percentile of 6-18 months), the

median time frame to perceived full-recovery for 49

participants was 20 months (25-75 percentile of 12-27

months). However, one participant wrote in the survey

response that the recovery process was, “nothing as bad

as I had read or expected.”

Many survey respondents also noted coping

mechanisms utilized during their recovery process. The

most common mechanism was support from family,

friends, and physicians. Other mechanisms included:

support groups, exercise, resting, completing activities

considered normal before the onset of Cushing’s syn-

drome, pain relief, religion, and entertainment. One

participant wrote that, “sad to say, had I not met [my

endocrinologist], I probably would have committed

suicide because I was so depressed, anxious, etc, and

had given up hope.” The value of family, friends, and

physicians in the recovery process suggests that addi-

tional patient and family education, as well as im-

proved physician understanding of the recovery proc-

ess, might improve patient satisfaction and perceived

quality of life during recovery from Cushing’s syn-

drome.

Though these results provide insight into the daunt-

ing challenge faced by patients recovering from Cush-

ing’s syndrome after surgical treatment, there is still

much more to be learned. To build upon our current

knowledge of the recovery process, our research group

has created another patient survey with fixed responses

to specific questions, to provide us with more quantifi-

able information on the patient recovery experience.

We invite all surgically-treated CSRF members to

complete this new short survey at http://

csrecoverypatient.nichd.nih.gov. Please complete this

survey, even if you completed the earlier one. By

learning more about the recovery process, we hope to

identify specific ways to improve the patient experi-

ence during recovery. We hope to publish these results

in a medical journal and to provide a synopsis of the

information in the CSRF newsletter. Thank you for

your help.

Editor’s Note: The research group of Dr. Lynnette

Nieman has worked to improve testing for the diagno-

sis and differential diagnosis of Cushing’s syndrome.

In particular, use of diurnal salivary cortisol, cortico-

tropin releasing hormone (CRH) test and inferior pet-

rosal sinus sampling have been important contributions

from the NIH. Our current research focuses on the lo-

calization of ectopic ACTH-producing tumors, the pa-

tient experience and quality of life during and after

Cushing’s syndrome, and the role of cortisol in the

metabolic syndrome.


Have you recovered from Cushing’s

syndrome after surgical treatment?

Please share your experiences

during the recovery period!

Researchers at the National Institutes of Health have

created a survey to gain more insight into the recovery

process in patients surgically treated for Cushing’s

syndrome. The survey will take about 15 minutes to

complete and no personal information will be requested.

To take the survey, please go to the website below to begin:

http://csrecoverypatient.nichd.nih.gov

National Institutes of Health Public Health Service

Please direct any questions to

Nicola Neary at [email protected]


Doctor’s Answers By Dr. Mary Lee Vance

Question: I recently was diagnosed with a fatty liver.

Does this present with Cushing’s?

Answer: Fatty liver is most commonly related to

poorly controlled diabetes mellitus, with high blood

lipid tests (cholesterol, triglycerides). It is not a

"presentation" of Cushing's, but may be a consequence

of Cushing's.

Question: I had my surgery in Feb 2007. I had an in-

guinal hernia in May 2008 and have recently been diag-

nosed with a large paraesphogeal hernia that requires

surgery. I wonder if I have had these hernias due to

the amount of time I had Cushing’s Disease before be-

ing diagnosed?

Answer: There is no way to know if the hernias are a

consequence of Cushing's - although Cushing's does

cause a negative effect on supporting tissues (thinning

of the skin), one can speculate that this may be a conse-

quence of Cushing's. However, in the many patients

with Cushing's that I have taken care of , this has not

occurred.

Question: I am taking steroids to control another medi-

cal condition. Will taking the entire dose in the morn-

ing help minimize the side effects? Is there anything I

can do to minimize the side effects?

Answer: If a steroid is given for a condition other than

replacement for adrenal insufficiency, the dose is usu-

ally higher - the most commonly used steroid is predni-

sone which can be taken once a day. However, if the

condition requires continuous steroid treatment (such as

severe asthma), the drug should be taken as prescribed.

If the steroid is hydrocortisone, this is shorter acting

and should be given twice a day. The frequency of ad-

ministration is not the real issue, it is the dose of the

steroid. The bottom line is the lowest effective dose of

the steroid that controls the condition is the goal. To

minimize the side effects of steroid medication: a

healthy diet, with adequate protein, and regular exer-

cise (swimming is a good idea,; minimizes effect on

joints), a multiivitamin, calcium and vitamin D (to re-

duce the risk of bone loss and osteoporosis), trying to

control the increase in appetite caused by steroid ther-

apy (very difficult) and the resulting weight gain. The

bottom line is that a steroid may be necessary to treat

several disorders and there are negative consequences,

particularly on muscle mass and muscle function and

on bone density. If a patient requires long term steroid

treatment, it is a good idea to have a bone density study

(DEXA) and if there is bone loss, treatment for this is

available and a good idea. If a patient requires chronic

steroid treatment (several months), this causes the pitui-

tary gland and the adrenal glands to stop producing

necessary hormones (ACTH, cortisol) that are neces-

sary for life. It is important that the steroid not be

stopped abruptly because this can be life-threatening. If

the plan is to discontinue the steroid, it should be done

gradually over weeks or months (depending on the

medical condition and the dose of steroid) and super-

vised by a physician who is familiar with withdrawing

steroid treatment.

Question: I have Nelson's syndrome (aggressive

enlargement of an ACTH secreting pituitary tumor fol-

lowing a bilateral adrenalectomy) and radiation has not

been effective. The tumor is creating problems with

my vision. What are my treatment options?

Answer: Since the pituitary tumor has enlarged to af-

fect the nerves that control eye movements or eyesight,

the first line of treatment is surgery to remove as much

of the tumor as possible. Medical treatment with the

oral chemotherapy temozolamide (Temodar) can be

tried. Two recently published studies, one from France

and one from the University of Virginia, showed that

patients with different types of aggressive pituitary tu-

mors (including some patients with Nelson's syndrome)

had a 50% "response rate" (either a decrease in tumor

size or no growth over time). Because this is a chemo-

therapy drug, treatment with Temodar should be pre-

scribed by and supervised by a Neuro Oncologist.

Editor’s Note: Dr. Mary Lee Vance, M.D. is Professor of Medicine and

Neurosurgery at the University of Virginia, Charlottesville, VA.


Purpose: Cushing’s syndrome is caused sometimes by ectopic ACTH secretion. If an ectopic tumor cannot be found or if surgery cannot be done, medicines that reduce cortisol produc-tion can be given. Mifepristone is a drug that blocks the action of cortisol in the body. High daily doses of mifepristone have been used safely to treat a few subjects with Cushing’s syndrome as well as certain kinds of cancer, gynecological diseases, and psychi-atric disorders. No major safety issues have been raised from these clinical studies. In addition, mifepristone has been used safely in many countries for more than ten years at a single dose of 600 mg to terminate early pregnancy. You will take mifepristone by mouth three times a day. The dose of mifepristone will be increased every week until you reach the highest dosage allowed, or your symptoms are clearly improving. You will stay in the hospital during this period. Thereafter, you will return to the hospital every three months for the assessment of your condition. You will be able to take mifepristone for up to 12 months if you continue to do well. During the study period you will undergo physical ex-amination, electrocardiogram and a scan to measure body composition intermittently, and you will fill out several stan-dard questionnaires. Blood will be drawn periodically to measure hormone levels and to monitor the safety of mifepris-tone. If you are a woman, ultrasound examinations of the uter-ine lining will be performed. The aim of this study is assess whether mifepristone will improve high blood pressure, diabetes or other symptoms of Cushing’s syndrome in subjects with ectopic ACTH secretion.

Criteria for admission into the study:

� Age 18 to 75 years � Cushing’s syndrome caused by ACTH ectopic secretion confirmed biochemically � Glucose intolerance or diabetes and/or hypertension that is considered to be caused or worsened by the hypercortisolism � Women should be sterilized, post-menopausal, sexually inactive or willing to use barrier methods of contraception throughout the study. � Subject willing to return to NIH during the full course of the study � No recent changes in corrective treatments for diabetes, hypertension or depression � No severe cardiovascular, liver or renal impairment � Patients must discontinue all approved or experimental steroidogenesis inhibitors, adrenolytic agents or somatostatin analogues within four weeks of admission � Body weight less than 136 kg Number of patients-35 Location: National Institutes of Health, Bethesda, Maryland Enrollment Period: 2007 and ongoing

For more information or subject referrals contact:

Marina Zemskova, M.D. Telephone (301) 594-3385 Email: [email protected] Fax: 301-402-0884 NIH/NIDDK-NICHD, 10 Center Drive, Room 6-3940 Bethesda, MD 20892

Research Study - Mifepristone

Symptomatic Treatment of

Cushing’s Syndrome Caused by

Ectopic Adrenal Cortcotrophin

Hormone (ACTH) Secretion

Research Study - New Imaging

Modalities in the Evaluation of

Patients with Ectopic Cushing's

Purpose: Cushing’s syndrome is caused sometimes by ec-topic ACTH secretion. Finding the exact location of the tu-mor making extra ACTH is necessary for successful surgical treatment. In 10% to 20% of patients, Cushing Syndrome is caused by ectopic production of the hormone ACTH. Often the ec-topic ACTH is produced by a tumor of the lung, thymus, or pancreas. However, in approximately 50% of patients the tumor cannot be found even with the use of extensive imag-ing studies such as CT, MRI, and nuclear scans (111-indium pentetreotide). Positron emission tomography (PET scan) using DOPA has the ability to detect pathologic tissue based on physiologic and biochemical processes within the abnor-mal tissue. Participating patients will be admitted to the Clinical Center at the National Institutes of Health and will receive a standard evaluation of Cushing syndrome and its cause. These tests include MRI of the pituitary, blood, saliva and urine tests, CRH stimulation and dexamethasone suppression test, and inferior petrosal sinus sampling (IPSS). Most of these tests will be done on our inpatient unit or in our day hospital. If the testing indicates a pituitary tumor making ACTH, patients will be offered surgery at the NIH. If the testing indicates ectopic ACTH secretion, we will perform standard studies to look for the tumor, as well as two re-search studies, F-DOPA PET and 3T MRI. The 3T MRI has a stronger magnet than the more common scanners and might give a better picture. Imaging studies of the neck, chest, abdomen and/or pelvis, as indicated by the history, physical examination and biochemical tests will be done by Octreoscan, CT and/or MRI scans. If the standard imaging studies identify a clear-cut tumor, we will consider surgical exploration, usually at a later admission. If only the research studies are positive, we will not do surgery but will continue to follow with imaging at 6-12 month intervals, and treat the Cushing syndrome with medication or adrenalectomy as needed.

Criteria for admission into the study:

� Age 18-70 years

� Cushing’s syndrome caused by ACTH secretion con-

firmed biochemically

� No severe heart, liver, or kidney disease or severe active

infection

� No known allergy to [111In-DTPA-D-Phe]-

pentetreotide or other somatostatin analogues or x-ray dye

� Body weight less than 136 kg

There is no charge for admission and testing at the NIH.

For more information or subject referrals contact:

Lynnette Nieman, M.D. NICHD/National Institutes of Health Building 10, CRC, 1 East, Rm 1-3140

10 Center Dr, MSC 1109

BETHESDA MD 20892-1109

Fax: 301-402-0884

email: [email protected]


Patient Stories

Our son, Hunter, has always been very active, enjoy-

ing playing baseball and football as a young boy, and

more recently in high school. In retro-

spect, we noticed some changes when

Hunter was 11 and was in 6th grade. But,

he was feeling well and staying active, so

we thought any changes we were seeing

was just due to the normal time of pu-

berty.

During Hunter's regular yearly physi-

cal in July 2009, when he was 15 and in

10th grade, his primary

care physician referred us to the Univer-

sity of Iowa Endocrinology Department

to see why he had not grown in nearly

three years. We had an appointment

scheduled for November 30, 2009, but

the hospital called and moved it up to

August 26. We met with Dr. Liuska Pe-

sce, a pediatric endocrinologist. She or-

dered several blood tests, saliva samples,

to test for numerous things, including

Cushing’s, and an x-ray of the left hand. We weren’t quite

sure what it meant yet, but the first round of blood work

came back showing high ACTH and high cortisol levels. She

ordered more tests and all came back with the same results.

Dr. Pesce suspected that he had Cush-

ing's Disease. The next step was to have

a brain MRI and CT scans on his lungs,

kidneys, heart, and adrenal glands to

figure out what was causing the high

ACTH and cortisol. Hunter had an MRI

and CT's on Monday September 21. Dr.

Pesce called us and told us that she had

some good news and bad news. The

good news was that his CT scans all came back clear. The

BAD news was that the MRI came back showing a large

tumor on his pituitary gland. The tumor measured almost an

inch in diameter. The pituitary gland is about the size of a

pea, the tumor measured about the size of a golf ball or a

walnut. This is when mom and dad started to worry.

Our next visits to the hospital included a stop in Neu-

roophthalmology. There Dr. Longmuir did a series of eye

tests and found that Hunter's eye sight and his peripheral

vision had not been affected yet. Dr. Longmuir then showed

us the MRI and explained where the tumor was and that the

tumor was putting pressure on the optic nerve. Hunter was

lucky that he had not begun to have vision problems. Then,

another visit to Dr. Pesce, where she explained the test re-

sults and the treatment plan. Next we spoke with Dr. Green-

lee, the neurosurgeon. He explained the MRI scans and de-

scribed the surgery. Before we left his office we had surgery

scheduled for the following Thursday, October 1, 2009. They

said the surgery will take about 5 ½ hours. Things were mov-

ing fast. We also had an appointment with Dr. Graham, in

Otolaryngology (ENT), who explained that the ENT sur-

geons go in first and get the neurosurgeon to where he needs

to be to do his job of removing the tumor.

We arrived at the hospital that next Thursday at 10:45am

and were taken to a room to wait... The surgery was sched-

uled for 12:45pm, but earlier surgeries were running late, so

it was 2:45pm before things got started. Our pastor said a

prayer, and Mike and I gave Hunter big hugs and then he left

for surgery. About 7:20pm Dr. Greenlee came in and said

that the surgery went well and by 8:45pm we were in the

room with Hunter in Pediatric ICU. He was very thirsty, but

couldn’t have any fluids yet and his blood pressure was

higher than they wanted. Hunter said he had the worst head-

ache ever, but he hadn’t lost his sense of humor.

By Friday morning, Hunter was off the high blood pres-

sure medicine and his blood pressure was great. 120's/60's -

70's vs. the 190's/90's the night before. His sodium levels

were also where they should be. The doctor cleared Hunter

to eat, so he ordered chicken strips and chicken noodle soup

and said he was getting really HUNGRY. Unfortunately,

when they removed his arterial line, his wrist became very

swollen and he couldn’t eat until after they determined that

his wrist didn’t need surgery. Finally he was able to eat!

Hunter had another MRI and the Neurologist said the MRI

looked good. So, we came home on Saturday and were

thankful to catch up on some much needed sleep. Hunter

came home from the hospital on 45mg of hydrocortisone a

day to keep his cortisol levels elevated so that he didn’t feel

sick. Hunter was feeling well and actually went back to

school on October 6th, just 6 days after his surgery!! Amaz-

ing.

On Monday, October 12, we had an appointment with

Hunter's endocrinologist for results on the post-op ACTH

levels. Before surgery his levels were running around 116.

Normal numbers should be between 9-52. One day after his

surgery his level was 13 and three days later it was 20. His

blood pressure at this point is 146/77, probably due to the

dosage of hydrocortisone. Dr. Pesce lowered Hunter's medi-

cation to 15mg hydrocortisone daily hoping this would help

his BP.

On October 31, Hunter was approved to go on growth

hormone therapy! It seemed pretty simple to do the injec-

tions and Hunter gave himself shots every night before he

went to bed. Good thing needles don't bother him! He was

excited about starting the growth hormone therapy and hoped

5th Grade

6th Grade

10th Grade


football season, acne, joint aches, backaches, headaches, and

noticing he'd been a little more tired than normal. Dr. Pesce

told us that her thoughts were that the tumor was growing

back.

Hunter had the MRI Friday, October 22. We met with

his surgeon, Dr. Greenlee and learned that sure enough the

tumor was back. It wasn’t as big as last time, measuring

about 12mm, but big enough to be creating problems.

Hunter had his second surgery on October 29, 2010. Dr.

Pesce said that with pediatric cases

of Cushing's Disease it is not un-

common to have two surgeries. We

all just prayed that this surgery

would take care of this stubborn

tumor and that it would be gone for

good.

This time surgery lasted 4 ½

hrs and the ENT said that his part

of the surgery took longer than he

expected since most of the bone

had already grown back from the

1st surgery. Basically he had to

open up the path again for Dr. Greenlee to remove the tumor.

The doctors said that this tumor was different than the first

one that was removed. He said it just kind of fell apart.

Maybe that is a good sign? The first one was more cystic.

He did not have a spinal fluid leak like during the previous

surgery so there was no need to remove a plug of fat from his

abdomen this time. Later that afternoon, Hunter started

throwing up, and it was all blood! Talk about SCARY. Not

to worry though, it was just drainage from the surgery and

when blood settles in your stomach you will get sick. Sun-

day morning the neurosurgeon sent us home. Amazing that

after a surgery like that you only stay in the hospital a couple

of days! Hunter was very happy to be going home.

Needless to say, we are praying that this is the end of the

road for this stubborn tumor. The MRI taken after surgery

supposedly looks “good” and his ACTH and cortisol levels

are not high, but not low. Dr. Pesce cannot tell from these

numbers if there is a cure yet or not. Only time will tell. She

said that Hunter can discontinue taking replacement cortisol

because his body is producing it on its own. We decided that

for now we are going to hold off on the growth hormone

treatment. As far as we know there is no evidence that tak-

ing growth hormone injections was the cause of the tumor

growing back, but there is also no evidence to prove that this

wasn’t the cause. We’d rather not take any chances.

Thank you to everyone for your continued support and

prayers. We live in an awesome community and are blessed

with wonderful friends and family.

Amber

[email protected]

to see some good growth! Hunter went back to normal ac-

tivities like gym class! Sitting on the sidelines was not easy

for him. He was looking forward to getting back in the

weight room to get in shape and gain some strength and

hopefully some big muscles. :) So far the road to recovery

has been pretty smooth and we hoped that it would continue

that way. We were so thankful that the doctors were able to

diagnose Hunter so quickly and that they found something

and were able to take care of it.

From December through February, Hunter had many

tests done. His vision remained the same as before the sur-

gery, which was good news. He was found to be hypothy-

roid, so he started thyroid replacement. A follow up MRI at

6 months looked great, and by mid-Feb, Hunter was able to

discontinue his replacement hydrocortisone! By April, a lot

of Hunter’s symptoms from the Cushing’s Disease disap-

peared. He no longer bruised easily, lost fat, gained muscle,

and was feeling less tired and weak. His blood pressure was

now normal. He had grown 3 inches since the surgery! He

had another bone scan and his bone age was 14.3 years. His

new predicted adult height was 5’4”, which is two inches

taller than previously predicted. While 5’4” is still not ideal,

it is much better than the 4’10” he started off at. In the whole

scheme of things, being short is not the end of the world.

In May, a visit to the ENT showed that Hunter had very

full sinus and a polyp, which led to a referral for full allergy

testing. So, they tested for allergies and didn’t find any!

But, they also did a chloride sweat test and that turned out

abnormal. That led to a scare that Hunter might have Cystic

Fibrosis! After other testing, we were very thankful that

Hunter did not have Cystic Fibrosis!

Hunter felt well, was happy, and continued to amaze us

every day. He handled and still continues to handle his ill-

ness well. I’m not saying that he didn’t have his days where

he questioned why all of this has

happened to him, but for the most

part he tries to keep a POSITIVE

ATTITUDE. We continued saying

our prayers that everything would

continue to go well and that the

tumor wouldn’t grow back. I keep

telling Hunter that God has a plan

for him and that he never gives one

more than they can handle.

Unfortunately, in September,

2010, Hunter had a routine

checkup with his endocrinologist at the University of Iowa.

Lab work from this appointment came back with his blood

cortisol level being a little on the high side. Dr. Pesce or-

dered a 24 urine test and also the three midnight saliva tests

to see how those cortisol levels would come out. Those also

came back higher than normal. Some of the other symptoms

were starting to resurface again as well... weight gain during

Spring, 2010

Fall, 2010


"YOU! DO! NOT! HAVE! CUSHING'S!" My

endocrinologist yelled after I requested more testing

despite three negative 24 Hour Urine Free Cortisol

tests and a below normal Low Dose Dexamethasone

test. "YOU! CAN'T! PROVE! THAT!" I yelled back

while my mind desperately reeled for more arguments, more

statistics, more anything to get another test for Cushing's. I

stuttered as I rapidly fired off findings by Cushing's research-

ers who had reported patients with Episodic or Cyclic Cush-

ing's. "As long as the entity of Cyclic Cushing's exists, and I

continue to have Cushing's symptoms, you HAVE to keep

testing!" I ended. During my tirade he had turned around

and leaned against the counter in the exam room, head down

with hands on either side of my open file. He stood silently

for so long I flinched slightly when he took a breath, turned

around, looked me straight in the eye and said quietly, "Do

you know how rare that is?" My eyes watered and I looked

away. "That still doesn't mean I don't have it."

Rewind about six weeks to my first visit, same doctor,

same exam room. As the endocrinologist sat down I started

relaying my list of symptoms (at this point the onset had

been about 4 and 1/2 years), current and past medications,

family history, surgeries and hospitalizations, all known by

heart from the many, many other times I had been in a new

doctor's office. Before I was even halfway through my re-

cital, he held his hand up to stop me and asked, "Have you

ever heard of Cushing's Disease? I haven't run any tests on

you yet, but you have it." He continued to explain what

Cushing's Disease was -- ACTH, pituitary, adrenal, but all I

heard was the word "TUMOR". No. Absolutely not. I do

not have this. I cannot have this. I came here because my

sister and mother were both just diagnosed with Hypothy-

roidism. That's what I have, no way did I have a damn tu-

mor! This guy is a quack. I'll make a follow-up appointment

to be nice and cancel it by telephone tomorrow.

But as he began asking questions, it was as if he was

telling me my own story: "Do you have any purple mark-

ings? Have you noticed your arms or legs becoming

weak? Has your face changed shape along the jaw

line?" The list goes on. I did indeed have all the symptoms

he asked about, but never thought them relevant enough to

report to a doctor, nor did any doctor ever bother to ask me

about them. Our eyes met as the feeling in the room shifted

from the boring, routine office visit to an eerie, yet exhilarat-

ing event. I was terrified, but fascinated. Could there really

be one cause to all my symptoms? If so, could I be

fixed? And most importantly, I pushed through the shock to

ask, "Is this...um...fatal?" "Yes," he said and smiled, "But

it's completely curable."

The next year and a half was filled with 24 hour Urine

Free Cortisol collections, Midnight Salivary Cortisols,

MRI's, CT's, etc. I became increasingly debilitated, making

multiple trips to the Emergency Room with kidney stones

and being hospitalized with what should have been minor

infections. A doctor in the hospital declared me "the sickest

26 year old he's ever seen!" Yet no Endocrinologist, Cush-

ing's Specialist or Neurosurgeon would agree to treat me

because my results were all over the board. Some tests came

back definitively negative for Cushing's, some tests came

back toward the high normal or slightly above normal limits

for Cushing's, and some came back soaringly high positive

for Cushing's. I had a mathematician run statistics on my test

results using conservative estimates of sensitivity and speci-

ficity. The result? I could prove with over 99% accuracy

that I both did and did not have Cushing's Disease. Great. I

had the dreaded Cyclic Cushing's Disease. Now all I needed

was a doctor who would treat it.

After multiple arguments with my local Endocrinologist

for a referral, I finally ended up in the office of a Neuroendo-

crinologist at Mt. Sinai School of Medicine. She ran her

own tests with the same results -- negative, borderline, posi-

tive. I even ended up with a negative 24 hour Urine Free

Cortisol and a positive Midnight Salivary Cortisol on the

same day! Apparently, I had a tumor that produced cortisol

at night, but not enough cortisol to show up consistently on

24 hour Urine Free Cortisol tests. However, the Neuroendo-

crinologist and Neurosurgeon were still hesitant to treat my

condition.

I pulled every stunt I could possibly think of to convince

those doctors to treat me. I argued, I threw journal articles at

them, I gave them statistics, I did and said outrageous things

to make them laugh, I offered to sign away all my rights to

the point that they could walk into the operating room roar-

ing drunk and I couldn't sue them. I so doggedly pursued

them that they probably could have had me put away for

harassment. I knew I was pushing it -- with every move a

voice in my head screamed "What are you doing, crazy

woman?!?!", but something in my gut would not allow me to

stop. It was as though my brain was put on autopilot while

some kind of strange intuition in my gut took over -- it told

me I was dying quickly and I needed to do whatever it took

to get treatment as soon as possible. Nothing else mat-

tered. Nothing.

About a year and a half after first hearing the word

"Cushing's" I walked into the Neuroendocrinologist's office

again carrying test results with the same pattern as always --

one negative, one borderline, one positive. I felt like crap

and didn't have the energy to fight that day. She made some

notes about my blood pressure being higher than the last time

she saw me, my hair loss, and the few pounds I had

gained. She started the same speech about her hesitancy to

treat me because I had such inconsistent results. To this, I

sat back up from where I was laying on the exam table and

wearily responded by naming the risks involved in the sur-


gery along with their respective statistical likelihood of oc-

currence, and said that I understood I could die and/or be

disabled by this, and that it was my choice to take this risk.

I saw her face change as she reconsidered. "What would

you do if we go ahead with surgery and you remain sick?"

she asked. "I would be disappointed, but at least then we'll

know we need to look somewhere else for a cause," I replied,

"But we can't do nothing while I sit here and waste

away! I'm 26 years old and almost completely disabled. No

one can say why, but I have a good hypothesis and if it's

wrong we have to know so we can start looking for the real

problem!"

Exactly one month later my parents and I entered the pre

-surgical intake lobby at Mt. Sinai Hospital. After the usual

paperwork and insurance business, a nurse took me back and

I changed into a hospital gown and put the hospital socks on

and got set in a hospital bed. This was the real deal. No

going back now. I was terrified, but hopeful they would find

the tumor that had, up to this day, been elusive. The next

thing I remember is hearing the neurosurgeon's excited voice

saying "Are you awake? We opened you up and the tumor

was right there! We got every bit of it! We got it!" If I did-

n't hurt so badly, I would have cried for relief. Instead, I

tried to convince them to increase the painkillers because I

was absolutely overwhelmed with pain, but I couldn't talk so

it just ended up sounding like E.T. saying

“Ooooooouch! Ooooooooouch!"

The next few months are a blur of indescribable pain. I

was no stranger to pain before -- kidney stones, aura mi-

graines, etc. But there was nothing to prepare me for the

pain of cortisol withdrawal and there was nothing to prepare

me for just how long the pain would last. I thought about

pounding myself on the head and knocking myself out. I

thought about begging for some doctor to put me in a coma

for a few months. I even thought about asking for the tumor

back! Somehow, I managed to get through the first couple

months' worth of pain. Around the third month or so the

pain got to a tolerable level. I am only 9 months post-

surgery as of this writing, and still experience some pain and

other Cushing's symptoms. However, I am at the point now

where I can see the other side -- life without Cushing's -- and

get excited about it.

Please feel free to contact me with questions or concerns

at [email protected]

Thanks,

Marie

My story is very similar to the others that you'll see

here, with one notable exception; I'm a man! I find it

interesting that the vast majority of experiences here

are from women. I understand that Cushing's is more com-

mon in women, but not to this extent. I suppose men just

aren't as comfortable sharing their experiences. Another

difference for me is that I never really felt sick prior to my

diagnosis. I gained about 20 pounds, got the "moon face",

and spindly arms and legs, but didn't suffer from depression

or fatigue to the point where it was noticeable. I was living

overseas for the past few years and wasn't too impressed with

the health care there. My thin skin

and easy bruising was written off by

the dermatologist as being caused by

excessive exposure to the sun in my

younger years. A psychiatrist said my

memory loss was due to job-related

stress. My easy cutting and bleeding

were deemed to be "normal" for some-

one my age (47). When I broke a

bone in my foot for no apparent rea-

son, no-one thought much about it. However, the worst

thing was my repeated injuries to my back, which were never

x-rayed, and deemed to be muscular and referred for physio-

therapy. While I wish I had been diagnosed sooner, I harbor

no ill-will against these doctors, since Cushing's is so rare

(especially adrenal tumor-related in a man), that the average

doctor would never see a case in their lifetime.

Upon returning to the US, my back was still bothering

me, so I went to my GP who referred me to an ostoeopathic

surgeon. He also discovered that my blood pressure was

extremely high and referred me to a cardiologist. The bone

guy x-rayed my back and found four fractured vertebrae,

which was quite unusual for someone so young. This, linked

with my foot fracture led him to order a CT-Scan and MRI of

my back. Fortunately, he spotted something odd near my left

kidney and sent me off to an endocrinologist with an interest

in osteoporosis.

After spending only about five minutes with the endocri-

nologist, he told me "I know exactly what's wrong". He or-

dered a 24 hour urine test and

confirmed his diagnosis, telling

me I was a "classic" case of

Cushing's Syndrome. He then

referred me to a surgeon to

schedule the removal of a 3cm

adrenal tumor and my left adre-

nal gland. At the surgeon's of-

fice a group of med students was

given all of my history and

symptoms, but the only one who

could come up with the correct diagnosis was the one who

(Continued on page 12)

Cushing’s

After Treatment


We still need your stories!

You can email them directly to

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Letters editor at:

[email protected] or

[email protected]

Donations—Thank You!

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Miri Park

already knew I had a hormonal problem. I felt like I was in

an episode of Gray's Anatomy!

My laparoscopic surgery lasted about five hours and I

was able to go home from the hospital after a four-day stay.

I was feeling pretty good (considering I'd just had surgery).

On day seven I developed severe chest pain and wound up

back in the hospital for another four days with pleurisy and

pneumonia. This is something you want to avoid if at all

possible. I stayed home from work for four weeks, feeling

too fatigued to do much of anything, and often had an upset

stomach. This was the hardest time for me, because I could-

n't do the things I used to. Also, I've always loved to eat and

enjoy good food, but during this period nothing sounded or

tasted good, making eating a chore more than a pleasure. I

lost almost 15 pounds in the first two weeks, but put back on

about half of that.

After surgery I started out on 30 mg of Hydrocortisone

and weaned back to 10 within the first year. I felt tired most

of the time and had a hard time psyching myself up to do

things, but was confident that this would go away in time. I

had the stamina to walk and exercise with light weights on a

daily basis. My doctor advised me to refrain from jogging,

biking, or golf for at least six months, as I was still at a high

risk for further bone fractures. This was the most frustrating

thing for me, because in my pre-Cushing's days I had always

been very active, with outdoor hobbies and exercise. My

appetite varied and my weight eventually stabilized, with my

belly slimming a little and arms and legs filling back out.

It took me a full two years to become Hydrocortisone

free, which was frustrating because I had hoped for a faster

recovery. However, I'm now back to my college weight (25

lbs below peak weight), most of the aches and pains are

gone, and after intensive treatment, my bone density has re-

covered. My energy has returned as much as can be ex-

pected for a 49 year old and I still enjoy being outdoors, but

can't jog or run due to the remaining back pain. Much to my

wife's dismay, I've taken up a new hobby - skydiving.

In hindsight, it should have been obvious that I had

Cushing's. I showed many of the classic symptoms, but they

were explained away as part of getting older. I'm amazed

now by how many people had told me they thought some-

thing was wrong with me but were afraid to ask for fear of

being considered nosey. Many of them are old friends that

only saw me once or twice a year, so the changes in my ap-

pearance didn't seem so gradual as it did for me and my wife.

Several people told me they didn't recognize me at all.

It took a while to get a diagnosis, but I feel lucky to have

been diagnosed after having Cushing's for around four years

(estimated by looking back at old photos). I suspect I wasn't

hit as hard as many because I was very active before and

during my illness. My medical care in the US has been ex-

(Continued from page 11) cellent and my employer, family, and friends have been very

understanding and supportive through the whole thing. I've

learned a lot from various Cushing's websites and was con-

nected with a wonderful email penpal who had the same pro-

cedure at about the same time. It was great being able to

share progress and setbacks with someone who was in the

same boat.

My wife and I enjoyed living overseas, but now realize

that moving back to the US to get healthy must be part of

God's plan for us. We're thankful for the many problem-free

years we've had together and look forward to many more

now that we've put the Cushing's monster to rest.

I wish the best for all of you who are still fighting for a

proper diagnosis and an end to your symptoms.

Chris

[email protected]


Hello, my name is Carrie. About four years ago, I

sent in a letter and a few pictures for the CSRF news-

letter (fall 2006). I thought it was well written and

truthful (it was) but something has been troubling me since

then. I wasn’t what I had written, it was what I hadn’t writ-

ten.

Let me first give you a quick re-cap

of my story. I was diagnosed with

Cushing’s disease due to a pituitary

adenoma in March, 2000. That was

after 5/6 years of frustration, just like

everyone else. I finally had an answer

and was referred to USC (University of

Southern California) Hospital to have my transsphenoidal

resection surgery. I was lucky in this case, being that one of

the finest surgeons, Dr. Martin Weiss, Professor of Neuro-

surgery, worked there. In October, 2000, I underwent my

surgery, which was a success. During the discovery of the

pituitary adenoma, they also discovered another tumor. This

tumor, unrelated to the adenoma, was located in the occipital

lobe of my brain. Because the pituitary tumor causing the

Cushing’s, was more critical, it had to be removed first. Af-

ter a year of recovery, I was sent to have this tumor removed.

It was non-cancerous (soooo grateful), but being that it was

located in the occipital lobe, an area that affects your eye-

sight, I lost 99% of my peripheral vision.

Now that you have a little insight to my medical history,

I need to discuss the OTHER things that were not addressed

before. For a lot of people, me included, your emotional

journey with Cushing’s is almost just as bad, if not worse,

than your physical problems. Maybe because of being

ashamed or afraid, people are reluctant to share this part.

Lucky are the ones who are not affected as severely as oth-

ers. When you are ill and YOU KNOW there is something

wrong, yet NO ONE is listening to you, it is very frustrating.

YOU can SEE changes in yourself, YOU can FEEL changes

in yourself, yet it seems nobody else can. As time goes by

and your trips to the MANY doctors, radiologists, neurolo-

gists, etc. can’t give you any answers, it’s hard to stay posi-

tive. You are scared, you feel sick all the time, your hor-

mones are erratic, you are gaining weight, it seems for no

reason! With each doctor visit you feel worse. Your fami-

lies don’t know what to do and tension starts to build. You

are unaware that your body is unleashing mass doses of ster-

oids that are wreaking havoc on just about every organ inside

of you. Have you heard of the many athletes who are on

steroids and their irrational behaviors? Well, that’s what we

are dealing with, only WE DON’T KNOW! As Cushing’s is

taking over you (especially women) we become embarrassed

by our appearance, you feel like a bald football player in a

dress! I myself became fat, grew hair where I didn’t want it

and lost almost all of the hair on my head! Going out to any

public place was unnerving, peopled stared at you. The doc-

tors told you to lose weight, get more exercise. People

THINK they know what is wrong with you, “Stop stuffing

your face”, “Get off the couch”, but they DON’T know! In

my case, I was eating exactly as my doctor ordered, I went to

aerobics twice a day, and it did NOTHING! My weight went

up to 230lbs. All of the ciaos can take a toll on your loved

ones, even your friends. There came a time when I got so ill,

I began to have irrational phobias, things that to others were

very strange. I was deeply afraid to be by myself, I even

wanted to have someone stand at the bathroom door with it

open, when I needed to use it. I also was scared out of my

mind to go to sleep unless someone stayed in bed with me

and they HAD to stay AWAKE. Not only are our bodies on

steroids, we can’t sleep and suffer from sleep depravation.

So you can see what a mess we can become. The doctors

already think it’s all in our heads, so we begin to believe

them. I came very close to it. One day I decided that I could

not live another day like that. I said I thought I was going

crazy and didn’t want to live anymore. My (then) husband

and my daughter (20yrs old at the time) drove me to the hos-

pital, only to be turned away saying that I had to have al-

ready tried to harm myself. My husband did what he always

did, never the one to disrupt the peace or cause a scene, said

“Well there is nothing we can do, we might as well go

home”, but NOT my daughter, she fought tooth and nail, she

argued, yelled, and even got on her knees and begged.

Thank goodness they relented and I had a two week stay

there. Even though they had no idea I had a disease, and

thought I was Loony, the stay there probably saved my life.

All the medications I was on allowed me to get much needed

sleep and also kept me focused on other things. By the time

I was finally diagnosed, I actually was losing my cognition.

I was unable to remember my phone number, my address

and where things were in my own house. I also lost track of

time. I wonder today, how many people out there are suffer-

ing from an illness as with Cushing’s, and are stuck in men-

tal institutions, and no one knows?

Well, today I am lucky to be

alive, I’m thankful for each day I wake

up. If you are ill, it is very important

to have people around you that will

stand up for you, that will go to bat for

you, someone who believes in you. If

you don’t have that support, GET SOME, you can meet other

“Cushies” through the CSRF, you may also get info by call-

ing the CSRF that could be beneficial to you. Do not give up

your fight. I thank my daughter for saving me. I would not

be here today if not for her. Remember you CAN beat this.

You are David and this info is your STONE, Goliath

(Cushing’s) will ultimately go down defeated!! Good luck to

all of you!! Reclaim your life!

Carrie

[email protected]


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I have been resting, resting, resting for 7 months

now after my recent health crisis with Cushing’s Dis-

ease. I had Pituitary Tumor Surgery 12/03 during

which I had spinal fluid leakage that was patched up with a

titanium mesh, a huge Macro Adenoma was removed, and a

physical and emotional wasteland left behind. That type of

surgery usually lasts about 4 hours, but mine was 9 due to

difficulties.

In April, 2010, I had, I guess you could say, a cortisol

crisis, swinging way high then way low. Due to all the scar-

ring from my previous surgery, the Univ. of Colorado Pitui-

tary Clinic was not able to determine if there is tumor re-

growth or not. They do now think that I had a brain stroke

during my first surgery, which would explain why I cogni-

tively struggled so much after that. This time around, the

highs of this Cyclic Cushing’s gave me the sensation of put-

ting my finger in a light socket. Then I would swing danger-

ously low to Addison’s, which put me in the Emergency

Room. I could not walk, barely talk, or make my own food.

They were considering put-

ting me in convalescent

care. For a time, I had care-

givers coming to my home

to help me function, then a

Physical Therapist, Occupa-

tional Therapist, and

Speech Therapist. I am now

happy to say that I am gaining my strength back, with the

help of medication to remain stable. I have a solid healthcare

team which gives me solace. Beyond this, I believe my will-

ful resiliency helped me stay alive. However, I am realistic

that Cyclic Cushing’s Disease is an illness I will always

have, one that again took me for a dangerous ride. I started

researching my illness, and found others on YouTube who

expressed their anguish too. There are wonderful stories of

the successful survivors, and those of some who continue to

suffer; and other courageous souls who did not make it, who

we mourn. I identified deeply, reaffirming my dedication to

educating the public on this rare disease and assisting my

Cushing’s journeyers.

Gratefully, I am coming back to life. I feel like I am

'embodied' now. I am amazed by my crisis experience, and

my ‘near death experience’: 'seeing the light' and when

asked if "I wished to live" I said YES, not knowing after I

passed out if I was going to wake up afterwards. I am walk-

ing and talking well now, and driving again, something I

struggled with during this last harrowing experience. My

head is spinning from the roller coaster I have endured. My

online video will explain more:

http://www.youtube.com/watch?v=MZyHKDpjZMM

Through my health crisis, I have developed a rich spiri-

tual life. I feel blessed and Thank God daily, continuing to

pray for my 'Cushie' Sisters and Brothers. I have resumed

my Skype and phone counseling business and it feels so

good to 'get back on the horse'. I am most eager to help

Cushing's patients through their 'Dark Night of The

Soul" (Caroline Myss) process, adapt to a new lifestyle of

pacing and self-regulation, and move from the machinations

of the head into the spirit of the heart. I am only a phone call

away, offering a hand you can hold. Please reach out, you

are not alone.

Blessings,

PAT [email protected]

www.caringcounselor.com


Want to Be on the CSRF mailing list? If you aren’t already on our mailing list, you can join through our

web site at www.CSRF.net—Member Services,

or just return this form to:

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Name____________________________________________

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City______________________ State ________ Zip_______

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ble. Please make checks payable to CSRF.

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If you are willing to help, simply change your profile

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The Cushing’s Support and Research Founda-tion is a non-profit organization incorporated in the state of Massachusetts to provide support and information to those interested in Cush-ing’s. This publication is for informational pur-poses only, and does not replace the need for individual consultations with a physician. CSRF does not engage in the practice of medi-cine, endorse any commercial products, doc-tors, surgeons, medications, treatment, or tech-niques. The opinions expressed in this news-letter are those of the individual author, and do not necessarily reflect the views of individual officers, doctors, members, or health care pro-viders. BOARD OF DIRECTORS Louise Pace, Founding President 65 E. India Row, Suite 22B, Boston, MA 02110 617-723-3674 [email protected] Elaine Wolman, Director 5446 Alta Vista, Laguna Hills, CA 92653 949-455-0555 fax: 949-455-0585 Karen Campbell, Director 12531 W. Limewood Dr., Sun City West, AZ 85375 623-518-4871 [email protected] Lee Carlson, Director 925 9th St. S. St. Peters, MN 56081 [email protected] Ellen Koretz Whitton, Director Seattle, WA [email protected]. Dr. James Findling, Endocrinologist Endocrinology Center at North Hills Medical College of Wisconsin Menomonee Falls, WI 262-253-7155 Meg Keil, Director of Pediatric Programs NICHD, NIH, Bethesda, MD John P. Gulielmetti, Treasurer

Cushing’s Support and Research Foundation

65 E. India Row, Suite 22B

Boston, MA 02110

Dr. George Chrousos University of Athens, Greece National Institute of Health Bethesda, Maryland

Dr. David Cook Department of Endocrinology Oregon Health Sciences University Portland, Oregon

Dr. James Findling Endocrinology Center at North Hills Medical College of Wisconsin Menomonee Falls, Wisconsin

Dr. Laurence Katznelson Medical Director, Pituitary Center Stanford University, Stanford, California

Dr. Anne Klibanski Chief, Neuroendocrine Unit Massachusetts General Hospital Boston, Massachusetts

Dr. Andre Lacroix Professor of Medicine Director, Endocrinology Program University of Montreal, Quebec, Canada

Dr. Edward Laws Neurosurgery Brigham and Women’s Hospital Boston, Massachusetts

Dr. Lynnette K. Nieman Clinical Director National Institute of Health Bethesda, Maryland

Dr. Edward Oldfield Crutchfield Professor of Neurosurgery and Internal Medicine University of Virginia Charlottesville, VA

Dr. David Schteingart Professor of Medicine University of Michigan Ann Arbor, Michigan

Dr. Constantine Stratakis Director, Pediatric Endocrinology Program NICHD/NIH Bethesda, Maryland

Dr. Brooke Swearingen Department of Neurosurgery Massachusetts General Hospital, Boston

Dr. J. Blake Tyrrell Endocrinologist UCSF Endocrine Group Practice San Francisco, CA

Dr. Mary Lee Vance Professor of Medicine, Division of Endocrinology & Metabolism, Professor of Neurosurgery, University of Virginia, Charlottesville, Virginia

Dr. Martin Weiss Professor of Neurosurgery University of Southern California Los Angeles, California

The Cushing’s Support and Research Foundation

© 2010 The Cushing’s Support and Research Foundation

MEDICAL ADVISORY BOARD

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