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Transcript of 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 Page 1
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
Published by The CSRF 65 E. India Row, Suite 22B, Boston, MA 02110-3389 617-723-3674 web site: www.CSRF.net Page 2
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:
Left to right: Carrie and Ellen at ADA in Orlando
Published by The CSRF 65 E. India Row, Suite 22B, Boston, MA 02110-3389 617-723-3674 web site: www.CSRF.net Page 3
Michael
Florence, AZ
Adrenal tumor, 5/10
Rebecca
Rockaway, NJ
Pituitary tumor, 2010
Janka
Sfantu Gheorghe, Romania
Pituitary tumor, 2010
Melissa
Ft. Lauderdale, FL
Pituitary tumor, 10/08
Jo
Exmouth, Devon, United Kingdom
Pituitary tumor, 11/10
Stephanie
Kirkland, WA
Pituitary tumor, 1985 when 12yo
Carolina
Brandon, MS
Pituitary tumor, 2005
Pituitary tumor recurrence
Susan
Melbourne, FL
Adrenal tumor
Nicole Mueller
Indianapolis, IN
Diagnosed 9/10
Mark
Lee, MA
Pituitary tumor, recurrence
Radiation, 2008, Wants to help others
Wendi
Sulphur Springs, TX
10yo son with possible Cushing’s
Susan
Chesterfield, MO
Pituitary tumor, 7/10
Elana
Ellington, CT
Adrenal tumor, 5/10
Teresa
Harvest, AL
Adrenal tumor, 2010
Wendy
Frisco, TX
Katherine
Anaheim, CA
Pituitary tumor, 1995
Daniel Beaver, PA
Ectopic tumor
Unilateral adrenalectomy, 2007
Reonee
Copley, OH
Lost a loved one due to Cushing’s
Wants to help others
Jennifer
Bloomfield Hills, MI
313-930-7200
Pituitary tumor, 8/10
Crystle
New Milford, CT
Pituitary tumor, 2010
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
Pituitary tumor, 3/10
Justin
Buffalo, NY
Pituitary tumor recurrence, 2010
Unsuccessful Pituitary surgery
Lorie
Spurger, TX
Adrenal tumor, 2010
Joanne
North West River
Newfoundland and Lab
Adrenal tumor, 2010
Andrea
New York, NY
Adrenal tumor, 12/09
Published by The CSRF 65 E. India Row, Suite 22B, Boston, MA 02110-3389 617-723-3674 web site: www.CSRF.net Page 4
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.
Published by The CSRF 65 E. India Row, Suite 22B, Boston, MA 02110-3389 617-723-3674 web site: www.CSRF.net Page 5
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]
Published by The CSRF 65 E. India Row, Suite 22B, Boston, MA 02110-3389 617-723-3674 web site: www.CSRF.net Page 6
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.
Published by The CSRF 65 E. India Row, Suite 22B, Boston, MA 02110-3389 617-723-3674 web site: www.CSRF.net Page 7
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]
Published by The CSRF 65 E. India Row, Suite 22B, Boston, MA 02110-3389 617-723-3674 web site: www.CSRF.net Page 8
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
Published by The CSRF 65 E. India Row, Suite 22B, Boston, MA 02110-3389 617-723-3674 web site: www.CSRF.net Page 9
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
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
Published by The CSRF 65 E. India Row, Suite 22B, Boston, MA 02110-3389 617-723-3674 web site: www.CSRF.net Page 10
"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-
Published by The CSRF 65 E. India Row, Suite 22B, Boston, MA 02110-3389 617-723-3674 web site: www.CSRF.net Page 11
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
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
Published by The CSRF 65 E. India Row, Suite 22B, Boston, MA 02110-3389 617-723-3674 web site: www.CSRF.net Page 12
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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
Published by The CSRF 65 E. India Row, Suite 22B, Boston, MA 02110-3389 617-723-3674 web site: www.CSRF.net Page 13
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
Published by The CSRF 65 E. India Row, Suite 22B, Boston, MA 02110-3389 617-723-3674 web site: www.CSRF.net Page 14
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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,
www.caringcounselor.com
Published by The CSRF 65 E. India Row, Suite 22B, Boston, MA 02110-3389 617-723-3674 web site: www.CSRF.net Page 15
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web site at www.CSRF.net—Member Services,
or just return this form to:
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Can the CSRF provide your email to others that contact us?
____ yes ____no
Can the CSRF provide your phone number to others that contact
us? _____yes _____no
Interested in Helping Others
with Cushing’s?
The CSRF is always in need of members
willing to have their email address
and information posted in the
Members to Contact section of our website!
If you are willing to help, simply change your profile
in the Member Services section of
our website or email:
Please Don’t Forget to Keep Your
Information Current!!
If you have an email address on file with the
CSRF, you can make changes to your contact
information or status by logging in to the Mem-
ber Services section of our website. If you do
not have an email on file and wish to add one,
please email [email protected]
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