Code
2050, Fall, 2005 My story is a bit different
from most of the articles I have read in these newsletters.
Like all Cushing's patients I suffered a great deal
but I did not suffer for very long because I was very
lucky to have been diagnosed early on.
I had not been feeling quite myself for the past year.
I was tired all the time, I was anemic, I suffered from
heartburn for weeks on end, I had skin problems, tons
of facial hair, menstrual irregularities and I had muscle
injuries that would not heal. In August 2004, I came
back from a hiking trip in British Columbia with my
family and I was very tired; my cheeks were suddenly
very bloated and I had put on a lot of weight. I knew
I had eaten a lot of BC fruit but this was ridiculous.
My wonderful family kept saying that I looked just fine.
I was very disappointed in myself; it felt like I was
getting old too quickly which was hard to accept because
I was only 42. In September, I started back at school
(I am a grade one teacher) and my condition deteriorated
quickly; I could barely make it up the steps to my classroom
and I was exhausted. I went to see my family practitioner,
Judy Chow, whom I have known for 17 years and she immediately
suspected a hormonal imbalance problem. She sent me
off for the necessary tests and on October 5, 2004 she
diagnosed me with Cushing's disease. Three days before
that I had started suffering from a non-Cushing's symptom;
I was feeling a sensation of electric shocks in my hands,
arms and legs. By the end of the week I had to leave
my job and say goodbye to my students because I started
suffering from anxiety attacks and I was becoming very
overwhelmed by this shock sensation.
The following week, I met with an endocrinologist who
said that I didn't have Cushing's because I wasn't sick
enough nor fat enough. Further tests proved her wrong.
By the time I had my surgery I was suffering from all
the Cushing's symptoms I had had printed off from the
CRSF site. Besides those already mentioned I began losing
my hair, my eyes were burning all the time, my muscles
were extremely weak despite lots of walking; I suffered
from insomnia, I had concentration problems, my stomach
was extremely bloated causing constant abdominal pain,
and my sacro-illiac joint which I had injured 6 months
earlier caused constant excruciating pain even after
months of physiotherapy. Furthermore I seemed to have
fractured a small bone in my hand and I was suffering
from anxiety. This was especially difficult because
I am usually a very confidant person. In November I
was actually scheduled for a hysteroscopy to remove
fibroids in my uterus which were causing serious menstrual
complications. My endocrinologist and gynecologist didn't
think that the Cushing's was a problem and that I should
go ahead with the surgery. However, my family doctor
and sister-in-law who is a doctor herself discouraged
me from going ahead with the operation. Anyways, my
period completely stopped after that for several months.
By December my electric shock syndrome had spread to
my entire body; my face, my lips, my tongue. In my stomach
the feeling became a motor-like motion. My entire body
was affected by this syndrome and it was intensified
with noise, light and any little stress. A simple conversation
on the phone with a close friend would cause more pain.
It gradually increased over the months and became worse
as the day unfolded. My poor husband and children were
living in a tomb-like house trying to be as quiet and
tranquil as possible.
While waiting to get an MRI, I was referred to Dr. Gerard
Mohr a very good neurosurgeon in Montreal. I live in
Ottawa, which is two hours away. Throughout my illness
I tried to be proactive in getting the necessary care;
I decided to email this doctor to tell him about my
peculiar symptom. To my surprise, he emailed back saying
that he would see me before Christmas and to let him
know as soon as I got the results of my MRI. Ultimately
it would show that there was a microadenoma in the pituitary
gland. However the surgeon would not operate until I
saw a neurologist because he could not explain my electric
shock symptom. He promptly arranged for an appointment
with this new specialist on January 6 and he said that
I would have my surgery on January 10th if everything
seemed all right. On January 6th my husband and I drove
to Montreal in a raging snowstorm both of us completely
overwhelmed because that morning my dad-in-law had passed
away.
The surgery was very successful; I remember the endocrinologist
saying "There is potentially good news" because
my cortisol was almost undetectable the day after the
surgery which could mean that Dr. Mohr had completely
removed the tumor. The five weeks following the surgery
were extremely difficult because I felt worse than before
the operation; all the Cushing's symptoms were worse,
the withdrawal was awful, I had an infection in my sinus
cavities because of the transsphenoidal surgery, I had
a bad reaction to the antibiotics, my period was back
and causing lots of stomach cramps, I had really bad
headaches and my electric shock symptoms had become
even more intense. My husband and I started to face
the reality that perhaps this was not at all part of
the Cushing's and that I was suffering from another
illness all together. Only then did my endocrinologist
in Ottawa decide to finally investigate and she sent
me off to a neurologist who did a new battery of tests.
By this time I had lost so much muscle tome that it
hurt to sit. I spent as much time walking as possible
because it's the only thing that helped me handle the
withdrawal. I went out everyday in our Canadian winter
getting through the wind and snow determined to get
better. I would go out to the shopping mall along with
the seniors when the ice made it too dangerous to walk
outside. I was feeling really rotten and kept repeating
that the CSRF people had said to be patient and that
I would eventually get better. Well, they were right.
One morning I was walking and suddenly I realized that
my eyes burned a little less, my heartburn wasn't as
sharp, my shocks were a little number and my head wasn't
as heavy. I remember feeling such a sense of elation
that I took out my cell phone and called my husband
at work and my brother in Montreal.
I decided to change endocrinologists because I remember
the CSRF information about the importance of working
with a good doctor after the surgery. He slowly took
me off the hydrocortisone and I have been hormonal therapy
free since June 11th! In the Spring I went to Aquafitness,
seniors aerobics and 50yr plus Tai chi to try and get
back into shape. It turned out that the electric shocks
eventually went away very slowly as they had come. It
was actually June before they had completely gone away,
nine months after they had started. In September I went
back to teaching and I am feeling great. I have to go
to physiotherapy because my muscles and my tendons seemed
to have been damaged by the high levels of cortisol
and I have developed osteoporosis but I consider those
minor problems compared to what I have endured. I was
able to get through my illness because of three factors:
I had an excellent family doctor who knows me well,
I was able to obtain invaluable facts through this foundation
which enabled me to soundly process the information
I would receive from the doctors that cared for me and
most of all I was able to stay strong because of my
wonderful supportive family and friends who went to
such great lengths to take care of me when I was sick.
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Code
2039, Fall 2005 It started, for me, in 1996.
Something started happening to my body. I was always
tiny—too skinny, in fact. Suddenly, I began putting
on weight, eating everything in sight. I figured it
was just a sign that I was nearing 30, but it never
leveled out. Soon, I started noticing huge, purple bruises
on my body. I began to feel “the blues”—depression that
I chalked up to PMS. I began taking anti-depressants.
Flash forward to 1999. I had a general feeling of being
“not well.” I was fatigued much of the time. The anti-depressants
weren’t working. I was still gaining weight. I went
to the doctors and, after many tests, was told the shocking
news that I had leukemia—they just didn’t know what
kind. At the end of the year, I had a bone marrow test.
Six days before the results came in, my (then) husband
walked out. I was suddenly stressed to the breaking
point. My work screeched to a halt; I took about a month
to regroup. The test came back negative. No leukemia.
But they still wanted to monitor me. I slowly returned
to work. Six months later, after a follow-up blood test,
I was again told I was “a ticking time bomb.” I was
sent to MD Anderson Cancer Center in Houston for another
bone marrow test. Another distressing scare for nothing,
and still, thank God,—no leukemia. But I knew something
was wrong. I felt broken.
In
2003, I found true love and married my long-time friend,
Glenn Fine, publisher of the magazines I have spent
the last 10 years working for. Everything was like a
dream. Except my health. By this time, my weight had
climbed to 181 lbs. Despite the joy in my life, the
depression was closing in. I was still working at a
frantic pace, but I found it was becoming more and more
difficult to focus. I couldn’t handle stress. I was
in physical pain on a daily basis. The fatigue was incapacitating.
My period stopped. And there were a host of other symptoms.
I finally all but stopped writing—the only thing I had
ever wanted to do—because I couldn’t rely on myself
to meet the deadlines. I was no longer able to do my
job.
Finally, in 2004, after nine years and eight doctors,
I got the right diagnosis: Cushing’s Disease, caused
by a tumor on my pituitary gland. I remember, when we
first read about the disease, I prayed daily, Please
God, let me have a tumor. Let this really be it. I was
afraid to even hope that there was a name for what I
had been living with, much less a cure. No tumor showed
up on the MRIs, but my endocrinologist, an amazing man
by the name of Dr. Rubin, knew it was there. He sent
me to Los Angeles, where it was removed by Dr. Martin
Weiss on December 16, 2004, at USC Medical. I was “cured.”
Looking back, it was the depression that was the most
horrible part of this disease. It was dark and heavy,
like a wet velvet blanket; it completely encompassed
me. The terrible, disfiguring weight gain, the exhaustion,
the inability to sit through a TV show, the acne on
my back, the bruises on my legs, the stretch marks—it
all just added to it. I spent hours on the phone to
my mom sobbing, often without reason. I remember saying,
“This isn’t me…this isn’t me…” Any stress, and the disease
took a turn for the worse. I began abusing my pain medication,
trying to find an escape. Without my family, my husband,
and the grace of God, I would not have made it through.
They were the ones who kept thoughts of suicide at bay.
I promised God, if He would just get me through this,
I’d help others. I’d make others aware of it. So, please,
anyone who needs to talk—about anything—please contact
me! Except for when we travel, I am always available
by either phone or email, any time of the day or night.
Just talking can help so much.
I
won’t lie: the recovery is painful and it can take years.
I have since relieved myself of much of the pressures
of my job in order to fully heal. As a result of the
surgery, I woke up with diabetes insipitus. No fun,
but a little pill takes care of it. I still experience
a lot of pain, especially in my hands, knees, and feet.
My energy hasn’t completely returned, and there are
days when the depression still creeps in. But I’ve dropped
ALL the weight! In fact, I look better than I did before.
I’m now at 120. My skin has completely cleared up. I
can read and watch television again. I no longer abuse
my medications. And every day is a little bit better.
The most helpful thing has been the contact I’ve had
with other Cushie’s, and discovering that I’m not alone,
I’m not insane, and there are people who really do understand
completely. This sight, and those who work so hard to
maintain it (such as Karen Campbell), are Godsends.
Hang in there. It really does get better. And God bless!
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Code
880: Summer 2005
My name is Bob. In 1995, I began having health problems.
The doctor I was seeing at the time insisted that nothing
was wrong with me. My arms were bruising; a deep purple
color and sometimes with just the lightest bump, they
would bleed. All the doctor said was “your skin is ageing
before it’s time.” My personality was beginning to change
as well. I had high and low points all in the matter
of minutes. I gained a lot of weight, my face turned
red and became round. I was also tired all the time.
I
was finally referred to a couple of specialists. One
of those doctors was an endocrinologist, Dr. Linarelli.
He ran a few tests on me and thought he knew what could
be wrong! I was in Cabo San Lucas, Mexico at the time
the results came back. Dr. Linarelli called me in Cabo,
as he was leaving for Italy in a few days and wanted
to see me before he left. My wife and I packed up, drove
straight back to San Diego and met with Dr. Linarelli.
He tried to explain Cushing’s to us. He said he had
one last test to perform on me, an MRI, and if a tumor
showed up in the pituitary, it was Cushing’s Disease.
When the results came back he had already left for Italy
so I saw another doctor who was filling in part time.
Sadly to say, this doctor knew nothing except to tell
us that I did have Cushing’s Disease and he knew of
no one who could help me. I felt alone and depressed.
My
daughter went on-line and we found Dr. Wilson at the
University of California, San Francisco. We went up,
met with him and got his opinions. Unfortunately, my
insurance would not cover the operation I needed in
San Francisco. When Dr. Linarelli returned from his
trip we again met with him, and once again he was helpful.
He knew of a few surgeons in San Diego and one in particular,
Dr. Randall Smith, who specialized in operating on pituitary
tumors. We met with Dr Smith and he immediately put
me at ease. He said not to worry about anything at all.
I was to think about getting better and everything else
was his job.
My
surgery was on September 22, 1998. The surgery went
well, however I stayed in the ICU longer then expected.
My blood pressure would not stabilize for a few days
and I had a couple of minor problems. Not long after
the surgery, I went through six weeks of radiation to
shrink the rest of the tumor that could not be removed
during surgery. The radiation was five days a week,
for six weeks. When this was all over, Dr. Linarelli
turned me over to Dr. Eric Gold, another endocrinologist
in San Diego.
Dr
Gold was one of the best doctors I ever had the pleasure
of knowing. He spent a lot of time with me and helped
me a lot until his untimely death this past New Year’s
Eve. Ironically when I heard of Dr Gold’s passing, I
also heard that Dr Linarelli had passed away as well.
At this writing, I am just starting with a new endocrinologist.
In April of 1999 I began to have double vision. I was
referred to Leah Levi, M.D., Clinical Professor of Ophthalmology
and Neurosciences. She is a wonderful doctor and spent
a lot of time with me. The muscles in my left eye were
damaged when I had the radiation treatments. In July,
I had surgery on both eyes and I am thrilled to report
that it has dramatically helped the problem. I do wish
I’d had the surgery years ago! Since my Cushing’s,
I’ve had colon surgery, some teeth removed and gum surgery;
all related to Cushing’s. I keep up on all my doctor’s
visits, take my medications, and do all the testing
that goes with having had Cushing’s.
San
Diego hosted the Endocrine Society’s annual convention
in June. I helped at the Cushing’s Support and Research
Foundation booth, and learned a lot. I also met Karen
Campbell, Director, and Louise Pace, Founding President
of the foundation. They are both very hard workers for
the Cushing’s Foundation and it was a pleasure to meet
and work with both of them. I hope to keep up periodic
local meetings here in San Diego. Please do let me know
if you are interested.
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Code:
1176 Summer 2005
In 1997, when I was 19 years old, my first symptom of
Cushing’s Disease appeared in the form of acne. I never
had acne so I didn’t think much of it and visited my
first doctor and was given my first medication. Soon
more symptoms were to follow… exhaustion, night sweats,
hot flashes, my hair was falling out, and then I needed
to “go” at least once a night, which turned into 4-6
times per night. My GP ran a CT on my abdominal area,
and I was diagnosed with back pain and sent home.
 Then
in 2000, I gained 50 pounds in four months, going from
a size 4 to a 12 with no in between sizes. Also my first
purple stretch mark (stria) appeared on my upper quads.
The striae eventually covered my upper legs and traveled
to my calves, breasts, waist, and tricep area, and I
gained another 35 pounds pushing me over 200 pounds
from 120. I wore maternity pants because my stomach
was so large.
The
weight gain was terribly difficult for me. I was a model
and actress in Los Angeles, and my job depended on the
way I looked. I exercised before Cushing’s and even
more when I had it because I was fat and needed to lose
the weight. I did spinning, step-aerobics, yoga, Pilates,
and only would gain weight. Two months prior to my diagnosis
I almost collapsed while doing cardio and had to stop
exercising. At that point I had lost full control of
my life, and I knew something must be wrong, but the
doctors (over 20 including endocrinologists) repeatedly
said I was fine.
In 2002, my “moon-face” and I were at my allergist when
he said, “Your face used to be so taunt.” I jumped on
that opportunity and explained my symptoms yet again
to him, but this time I showed him the purple striae.
He stepped out of the room and called his colleague
who was an endocrinologist. He described my symptoms
over the phone, and my allergist came back in the room
and said, “You need to get a cortisol test. I think
you may have Cushings.”
Less
than two months later, I had my pituitary tumor removed
along with most of my pituitary and had to start hormone
replacement including cortisol. Fortunately surgery
cured my Cushings, and many of my symptoms started to
disappear. My acne cleared, purple striae decreased
in size and color immediately, I lost 55 pounds in less
than 6 months, and I finally slept through the night.
But I was still undiagnosed with two other diseases,
so my recovery was very difficult and confusing for
the doctors. I was in chronic pain and couldn’t digest
food. Thirty more doctors later and over 50 medications
with no improvement, a diagnosis of gastroparesis and
intestinal pseudo-obstruction were given.
Six
months ago, I started eating Whole Food Chinese Herbs
which rebuilt my health and has allowed my body to regenerate.
I stopped over 12 medications in three months including
my depression, anxiety, low bp, thyroid, and migraine
meds, etc., and all narcotics. More importantly though,
it helped my body balance itself, and I don’t’ have
to take hormone replacement anymore, not even cortisol.
My body used to make about 4-5 on a good day. Now I
make 19 all by myself! I was told I’d be on cortisol
for the rest of my life, so this is huge for me.
I’m
27 now, back to a size 4, and flourishing both physically
and mentally. My goal is to return to work next year,
and eventually get married and have kids. These dreams
of mine, which were once destroyed by Cushings, have
been reborn, and I am now in control of their destinies!
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Code
1083, Winter, 2005
This letter is written not only to tell my 'Cushing's'
story but to officially thank Louise Pace for organizing
the Cushing's Foundation to provide support and promote
awareness of this very dreadful disease and for helping
me in particular by guiding me to the proper treatment
that saved my life. My tale only adds  credibility
to the need for urgency to make the public knowledgeable
early on of the symptoms that could save a victim years
of agony trying to find a diagnosis and for the medical
world to be more ambitious in recognizing these symptoms
so treatments and cures could be facilitated and lives
saved. Until I was 48, I was super healthy, athletic,
hard-working and ambitious. I was a single mother, raising
two teenagers, working full time and staying in top
physical shape playing tennis, jogging and exercising
daily. Then little by little things started falling
apart, starting with a stress fracture of my ankle in
about 1992. Then I started getting un-healing wounds
that turned into ulcers, my skin ripped off like an
onion, and I noted the appearance of facial hair. A
few more doctors later and still no one made a diagnosis
and quickly referred me on to other specialists…to no
avail. Obviously I knew something was wrong and I started
 getting
quite frustrated that no one could figure out the problem.
By the time I was making a move from New Jersey to New
Mexico in 1999, I noticed I was losing my muscle strength
and was having trouble lifting boxes and climbing stairs.
Then after a year in New Mexico I was in really bad
shape and was told by several doctors that I better
get back east where supposedly there was better medical
care. At this point my arms and legs were pencil thin
and covered with bleeding ulcers, my weight had shifted
to my belly, my face was getting distorted and roundish,
my cheeks reddened with broken vessels like a severe
sunburn, and my internal thermostat was screwed up -
I would be cold in a hot room and visa versa. Unfortunately
just coming back east didn't solve my problems and I
went bouncing around to several more doctors before
one finally thought of Cushing's and recommended the
urine tests that showed my cortisol was almost 800.
Then more time was wasted because the radiologist failed
to see the 7mm pituitary tumor on the first brain MRI
and spent 8 months looking for an ectopic tumor. Finally
my third endocrinologist saw the very evident tumor
but for some reason wasn't convinced that it was the
culprit and wanted to remove my adrenals to stop the
cortisol production even through the adrenals had no
tumors. At this stage of my disease I had high blood
pressure, was losing my memory and sensibility in general,
was easily confused, could not understand instructions,
was disoriented in time and space, and my speech was
getting jumbled. It seemed my mind and body were always
revved up in fast drive and I truly felt like I was
ready to explode. But somehow I had the presence of
mind to question this doctor's advice to remove my adrenals
and this is when Louise Pace stepped in to tell me to
get yet another opinion. Fortunately through the Internet
I found that the National Institute of Health in Bethesda
was doing research on the testing for pituitary Cushing's
and I was accepted into their program at the eleventh
hour. Dr. Lynette Nieman at the NIH confirmed the pituitary
tumor and Dr. Oldfield removed it in January 2002. I
wish I could say that was the end of my problems. Besides
being on the hydrocortisone for 19 months with at least
4 months of agony weaning off the medication, I am now
trying to put together the pieces from the damage done
by the high cortisol. It literally ate my bones away
and left me with a deteriorated ankle which was fused
in December 2002, several collapsed cervical vertebrae
which were fused in November 2003, two hip fractures
that leave me walking with a cane, and such a severe
collapsed scoliosis of my spine that I lost 3"in height
and at this point don't know if surgery will even help
the pain and deformity. Humpty Dumpty was in better
shape than me. But despite the years lost to Cushing's
and the permanent damage I am suffering, and the fact
that I will probably never be able to work again, I
can still say I am so thankful to be here to tell my
story. I certainly have had to make adjustments to my
lifestyle but at least I have that life to adjust. It's
bad enough having Cushing's but no one should have to
waste years of their life going to 30 doctors to find
their cure. More people like Louise Pace and those at
the Cushing's Foundation deserve everyone's support
in their efforts to change the situation. I hope my
story helps in that endeavor. Also, I would appreciate
hearing from anyone who had similar bone problems, in
particular if anyone could share their results of a
lumbar fusion, which I am considering.
Code:
1197 Spring 2005
I remember one afternoon my son came home from his first
day of first grade and said to me….”Mommy, what does
“chubby” mean? Immediately, my heart sunk…already at
the age of six my son was learning the cruel reality
of how society views overweight individuals, even young
children.
At the age of six, my son was already showing obvious
  signs
of the classic look of a Cushing’s patient, although
I had never heard of the disease before. In his kindergarten
year, and every year after, his weight gain increased
by approximately 30 pounds per year, despite the fact
he was playing basketball, baseball, and skateboarding.
I watched his weight like any other concerned mother
would do, and tried to manage it on my own. Soon, it
was apparent that something was very wrong with my child,
however I couldn’t really pinpoint what it was.
He
was complaining of headaches, and also he was extremely
stiff every morning. He would complain of his joints
aching, and he reminded me of a little old man first
waking out of bed. I went to our local pediatrician,
and he looked at Stephen, and was concerned with the
weight gain. He referred Stephen to a specialist, and
in turn began the unending circle of numerous doctor
and hospital visits. The endless poking and prodding
by doctor after doctor for over two years was incredibly
disheartening. I had noticed that Stephen’s height had
not changed during this two year period, and I kept
telling the doctors over and over my concerns. Several
doctors told Stephen, that he ate too much, and they
accused me of over feeding him, and sneaking food to
him. They referred me to several nutritionists, and
even suggested that Stephen have a personal trainer
to get the weight under control. Several comments were
made over the course of the two years that Stephen may
have Cushing’s, but all the doctors rejected that thought,
and said that since Stephen was a male and a child,
that it would be extremely rare. The doctors had ordered
urine free cortisols, dex tests, and several blood analysis
tests, only to tell me that the likely hood of Stephen
having Cushing’s was so rare that all completely dismissed
it.
With
the help of the Cushing’s Support and Research Foundation
they were kind enough to connect me with a family in
Australia who had a boy recently diagnosed with Cushing’s.
I immediately contacted them, and instantly realized
I was not alone, and that the mother had gone through
the exact same stress of fighting to manage her son’s
health care as I had. With the constant support from
this incredible family, I found the strength to not
give up and keep fighting for the answers to my son’s
illness. CSRF also referred me to the brain tumor center
at San Francisco University, and finally the correct
3d MRI’s were ordered which proved a tumor on the left
side of Stephen’s pituitary gland. They informed me
to contact the National Institutes of Health, and speak
with Dr. Chorusus. Within a month of contacting the
NIH Stephen and I were on a plane to Maryland, and soon
after the correct diagnosis was confirmed. “Cushing’s
Disease”. Stephen in fact did have an ACTH producing
tumor on his pituitary gland. Stephen spent almost a
month at the NIH, and under went transsphenoidal surgery
in September of 2000. Although he was quite ill for
several months afterward, and remained on replacement
therapy for almost two years, he beat the odds of having
this terrible disease. Stephen is now almost 6 ft tall,
and is a happy healthy 13 year old, who enjoys life,
and has learned the gift of compassion from his experiences
of fighting this disease.
I
truly believe without the help of the CSRF and the Aulbury
family in Australia my son would not be here today.
My undying gratitude goes out to the National Institutes
of Health and their incredible staff of Dr. Chorusus,
Dr. Stratakis, Meg Keil, and the superb nursing staff,
whom saved Stephen’s life.
For
anyone out there who is experiencing the pain of fighting
for your loved ones health, don’t give up! The answers
are out there, and there are people who are placed in
our lives to guide us through. If there are any mothers
who would like to contact me for support please feel
free to!
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Code:
1175 Spring 2005
When
I look back on things, I first noticed a problem with
weight gain in the winter of 2000. I continued gaining
and began filling out more in my face and middle through
that summer and into winter 2001. During that time I
also started having sleepless nights regularly. My family
doctor tried lots of sleeping pills until I got tired
of that and gave up. I was feeling very bad with the
extra weight, so since I was up at 2 a.m. every morning,
I had the time to exercise. I was exercising and eating
very healthy. If I hadn’t had Cushing’s, I could have
been on the cover of Men’s Health and Fitness (maybe!).
My family also had the cleanest house on the block and
we were getting packages from Ebay weekly (there wasn’t
much more I could do between 2 & 7 a.m.). I thought
this was normal for a long time. In the summer of 2002
I got an anal fissure. A simple surgery should have
fixed this, but I had three and was out for the whole
summer due to the slow healing. I was back to exercise
and diet by winter 2002-2003, and even managed to lose
a little weight (5-10 lbs that would have been 40 for
a normal person!)
 In
June 2003 my wife and I went to Cedar Point amusement
park and my ribs hurt after the first day, but I kept
going. After the trip I tried moving heavy shelves at
work and that sent me doubled over to the floor. Things
only got worse from here. I was very over weight and
in the matter of months I got the hump on my neck, stretch
marks allover my belly, armpits and chest. We had been
to many doctors who sent us to other doctors. I was
still not sleeping well and things were getting worse.
I would get up in the middle of the night in so much
pain that my wife would take me to the emergency room.
We would have to call someone to come and sit with our
kids and off we’d go. This happened at least four times.
They would run tests, tell me to lose weight and give
me a shot of painkiller and we’d go home. At one of
the ER visits they did a chest X-ray and thought I had
been in an accident because I had 13 broken ribs. This
sent us to another doctor who thought I could have bone
cancer. I was very depressed by now and weighed about
245 lbs compared to my normal 175 lbs. I quit smoking
in November 2003 since I got winded just walking to
another room and my chest hurt constantly.
In
Dec. 2003 my family Dr. finally set up an appointment
at the I.U. Medical Center. Dr. Melissa Cavaghan (best
Dr. in the whole world!) recognized the symptoms of
Cushing’s the first time she saw and talked to me on
Jan. 14, 2004. This was followed by all the tests; blood
tests, MRI’s, urine collections and saliva collections
until they could get the answers they needed. They finally
did and I had my pituitary surgery March 1, 2004. I
was so happy with my endocrinologist that I stuck with
her even through we were 2 hours away. The first few
months after surgery I was worse. I was depressed, afraid
to see anyone, still in pain and cried constantly. I
still had ER visits after surgery. Twice for terrible
depression and then for seizure-like episodes that were
caused by too many medicine changes. We soon learned
to only change one thing at a time. I was fortunate
enough to work for my family and took a lot of time
off. I could not have done this without my wonderful
wife, great family, good friends and most of all, Jesus
Christ. Everything that’s happened to me has brought
me closer to the Lord, closer to my wife and closer
to my kids who are now the ages nine, five, and three.
I hope that God can use my testimony somehow to help
someone. This experience has changed my life for the
better and I am thankful for it. There is a light at
the end of the tunnel and that light shines from our
savior Jesus Christ. Please don’t give up! When you
don’t think you can do it, take out your Bible and read
through the Psalms. Pray and give thanks to God that
you’re alive. I am still taking 25mg of Cortef, Effexor
and Clonazepan. But, I’m so thankful I’m here to be
writing this the week of March 1st—one year after surgery!!
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Code
2014:
Spring
2005
Here is a brief history of my dealings with Cushing’s
so far:
- Beginning
of Symptoms June 1997
- Diagnosed
with Pituitary Microadenoma Oct. 1999
- Transsphenoidal
Hypophysectomy April 2000
- Stereotactic
Radiosurgery (Gamma Knife) Dec. 2001
- Recurrence
of Symptoms June 2003
- Bilateral
Laparoscopic Adrenalectomy Jan. 2005
I
weighed about 100 lbs. up until I was 20 (1997), when
I started showing symptoms of Cushing’s (typical weight
gain, moon face, striae, excess facial and body hair).
A year later, I had put on probably 25 lbs. By 1999,
I was very heavy, and had noticed that I got tired more
easily and quickly, and that my muscles (especially
legs) got tired and hurt after much walking or activity.
My dermatologist suggested I get checked for Cushing’s.
Several doctors, lots of blood work and two MRIs later,
the neurosurgeon told me that there was a tumor on my
pituitary gland. At 168 lbs., the transsphenoidal hypophysectomy
to remove the tumor, a microadenoma, was done. They
told me the surgery went perfectly, that the tumor was
on the outside and basically fell right off. I developed
what they labeled anesthesia-induced hepatitis after
the surgery and then adrenal insufficiency because I
had not been put on any replacement medications. After
6 hours in the hospital with an IV, and then being put
on hydrocortisone, things evened out.
 After
almost a year, almost off the hydrocortisone, I began
to feel that symptoms were returning, mainly weight
gain, and I just felt the same as I had before. My neurosurgeon
said it was probably because my metabolism just wasn’t
what it used to be (at 22), and/or it was the steroids.
Upon my insistence that something was wrong, they finally
did another MRI, showing a recurrence of the tumor.
Since I had already had the transsphenoidal surgery,
we decided to do the stereotactic radiosurgery (which
I just recently found out is the same thing as Gamma
Knife), which again seemed to work for about a year
and a half. I dropped to 120-125 lbs. again, felt better,
and then summer of 2003, I started putting weight back
on again, etc. I went to a new endocrinologist with
my concerns, and since my UFC levels were normal, he
blamed my symptoms on depression. It wasn’t until December
of that year when my cortisol levels went up that he
thought a recurrence of the Cushing’s was possible.
In February of 2004, my levels were 306 (normal 5-50).
He referred me to an endocrinologist in St. Louis at
Barnes-Jewish Hospital, who then referred me to one
of their neurosurgeons. After a 1 ½ year battle with
my local hospital, I finally got the adrenalectomy approved
by the endo in St. Louis, had the procedure done and
am now recovering. My mood and mental state are much
better, and my strength and energy are returning slowly.
I ended up taking a 6 month leave of absence from my
job as a school secretary because the Cushing’s had
gotten so severe, but the school district would not
honor my request to return to work half-time temporarily,
so I have resigned from my position there, and am now
figuring out what I’m going to do from here. If anyone
would like to contact me, please do so!
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Code
1190, Winter, 2005
My story seems to be much like that of many others that
are suffering from Cushing's disease. Since the early
90's, it appeared that my health was declining. I gained
100+ pounds and no matter what I did, I could not get
rid of it. I also had extremely high blood pressure,
which caused me to have horrible headaches, and suffered
from muscle and bone weakness. Every doctor I went to
informed me that my problem was because I was overweight,
and I believed them. I started to believe that I was
just supposed to be overweight and nothing I could do
would change that. Prior to my diagnosis, I had the
typical Cushing's symptoms; always tired, bones and
muscles ached all the time, could not sleep at night,
my body became distorted, broke a bone in my foot, lost
most of my hair on my head, bruised easily, periods
ceased, diagnosed with Diabetes, my face and body had
acne all over, severe depression and I overall just
felt lousy. I was on about 20 medications a day and
I am not going to lie, there were several times I wished
I could just die.
I
finally got diagnosed in February 2003, but the pain
and suffering did not immediately stop. It took several
tests (my favorite being the urine collection) and several
doctors to finally figure out that I had a tumor on
my pituitary gland. I was referred to University of
Virginia and there I met Dr. Vance and Dr. Laws, which
changed my life forever. They immediately saw the tumor
on the MRI I had done in March! I went through the Inferior
Petrosal Sinus Sampling procedure (which was not very
pleasant) for confirmation that it stemmed from my pituitary
gland. The following day I was asked to come back in
4 days to have my pituitary gland operated on. I was
so relieved that someone finally understood what I was
going through. I went in for my operation on a Monday
and after staying in the hospital for 2 days, Dr. Laws
informed me that they needed to go back in to see if
any tumor remained because my cortisol level was still
too high. So, I went back under the knife. Let's just
say the post op was not fun at all. I felt as if I was
on the verge of death. I went home 2 days later with
only 20% of my pituitary gland left. I have been back
to UVA 3 more times for follow up. As of June 2004,
I was found to be in good health! I am now only taking
1 blood pressure medication and all symptoms seem to
have gotten better. I have not felt this good for years!
If anyone wants to contact me, I am here for them -
anytime day or night. This is a tough challenge for
anyone to go through and I honestly feel that only the
ones that go through this know what it feels like. There
is not a day that goes by that I am not afraid it may
come back. However, knowing that there are people out
there who are part of this foundation has made me comfortable
to know that I am not alone.
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Code:
2005, Winter, 2005
I'm not quite sure when this all really started. I remember
being a junior in college (1999-2000) surviving dorm
food, moving to an apartment and eating healthier foods,
yet I was gaining weight. Weight has been a sore spot
with me because I had been a gymnast for as long as
I can remember and especially upsetting since I was
majoring in exercise physiology. But no matter how hard
I tried, I had trouble just maintaining a steady weight
let alone losing the weight. Not eating was not an option
because I got migraines whenever I missed a meal by
more than 1-2 hrs. So I just went on with life struggling
with the guilt of the weight gain but not really acknowledging
it and buying bigger clothes. The next few years were
a blur, I completed my internship in physical therapy,
graduated from college, got engaged, and all the while
moving every 4-6 months. The engagement was a very stressful
2 years, my fiancé's family was very excited while my
family was very upset. As you can imagine this was a
constant source of stress added on top of traveling
to judge gymnastics meets, to see my fiancé, starting
a new job in a new town, rolling the first new vehicle
I had ever owned, and spending my first Christmas away
from my family. I had much more than I could handle.
So when I started feeling more and more fatigued every
day I thought it was expected given the situation. I
would increase my water intake and go to the gym 2-3
times a week, no matter how tired I was because exercise
should give you energy. It never really helped.
This
is when I started noticing other things that just didn't
seem quite right; getting heart burn every time I ate
chocolate (for a chocolate lover this is really not
good!), drinking more and more water, getting up in
the middle of the night to urinate, oily skin (I stumped
my Mary Kay lady), trouble sleeping, plus I noticed
that when I laid on my side my stomach rested on the
bed. From here things just got worse. The weight gain
continued and I started forgetting little things. I
chalked it up to being tired and started compensating
by writing everything down. It wasn't until I made an
appointment with a new doctor that I started to believe
that something was really wrong. My blood pressure that
day was 160/100!! I saw several more doctors and had
several more tests with conflicting results. Meanwhile
I started noticing that I couldn't pay attention, remember
things, and conversations were getting more and more
difficult. I thought I was going nuts! It took everything
I had to go to work (5 min away) in the morning, take
a nap at lunch, work all afternoon and make it home
safely at night. Luckily, my nurses got me an appointment
with a doctor and knowing I would be tired I wrote down
everything that was bothering me about my health condition,
covering a piece of paper front and back. He thought
I had poly-cystic ovaries and ordered a list of labs
9 miles long and a 24 hour urine on the outside chance
that I had something he'd only heard about in medical
school. Several hormones came back way high and contradicting
to each other. The doctor asked me to get one more blood
test because my cortisol levels were 7 times higher
than they should ever be and needed to see where the
problem was originating. I was excited because finally,
we were on the way to figuring out what was wrong. My
ACTH was extremely high and he ordered a brain MRI that
showed my tumor that was a 1.1x 1.2 x 0.9 cm mass growing
on the left side of my pituitary gland. I cried as my
now husband and I left the doctor's office that day,
not because I was scared of what was ahead of us but
in relief that someone had finally listened to me and
had figured out what was wrong!
From
there everything snowballed with our families getting
involved, us trying to find a doctor that could help,
trying to figure out how we were going to afford the
surgery, and getting enough time off work. We began
a mad search for information. That is where I first
found your web site. The stories I read were so close
to home that I cried. I wasn't alone. My family was
very understanding and helpful (especially my husband!!)
and we found a doctor in Salt Lake City, Utah who could
help us. Less than 2 months after being diagnosed, (which
felt like an eternity!) I went in for transsphenoidal
surgery. It's been a little over a year now since that
surgery and life has greatly improved. I can eat again,
hold conversations, can drive without being afraid,
and I am losing weight. The mood swings are irritating
and the nausea for days on end are annoying to say the
least, I still weigh more than I should, and I am still
tired but, I am back doing pretty much everything I
did before. I'm still on steroid replacements due to
a couple of sinus infections that irritated my asthma,
once forcing me to the emergency room. I'll admit I
am afraid of the tumor growing back and I am still very
tired but I don't let that stop me from working, coaching,
judging, and enjoying my life. On my sad days or when
I feel like I'm never going to get better it helps to
go back to your web site and read through other people's
stories and suggestions. Thank you for posting these
wonderful stories so that no matter what part of the
world you are in you can find comfort in knowing that
you are not alone.
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Code
1083, Winter, 2005
This letter is written not only to tell my 'Cushing's'
story but to officially thank Louise Pace for organizing
the Cushing's Foundation to provide support and promote
awareness of this very dreadful disease and for helping
me in particular by guiding me to the proper treatment
that saved my life. My tale only adds credibility to
the need for urgency to make the public knowledgeable
early on of the symptoms that could save a victim years
of agony trying to find a diagnosis and for the medical
world to be more ambitious in recognizing these symptoms
so treatments and cures could be facilitated and lives
saved.
Until I was 48, I was super healthy, athletic, hard-working
and ambitious. I was a single mother, raising two teenagers,
working full time and staying in top physical shape
playing tennis, jogging and exercising daily. Then little
by little things started falling apart, starting with
a stress fracture of my ankle in about 1992. Then I
started getting un-healing wounds that turned into ulcers,
my skin ripped off like an onion, and I noted the appearance
of facial hair. A few more doctors later and still no
one made a diagnosis and quickly referred me on to other
specialists…to no avail. Obviously I knew something
was wrong and I started getting quite frustrated that
no one could figure out the problem. By the time I was
making a move from New Jersey to New Mexico in 1999,
I noticed I was losing my muscle strength and was having
trouble lifting boxes and climbing stairs. Then after
a year in New Mexico I was in really bad shape and was
told by several doctors that I better get back east
where supposedly there was better medical care. At this
point my arms and legs were pencil thin and covered
with bleeding ulcers, my weight had shifted to my belly,
my face was getting distorted and roundish, my cheeks
reddened with broken vessels like a severe sunburn,
and my internal thermostat was screwed up - I would
be cold in a hot room and visa versa. Unfortunately
just coming back east didn't solve my problems and I
went bouncing around to several more doctors before
one finally thought of Cushing's and recommended the
urine tests that showed my cortisol was almost 800.
Then more time was wasted because the radiologist failed
to see the 7mm pituitary tumor on the first brain MRI
and spent 8 months looking for an ectopic tumor. Finally
my third endocrinologist saw the very evident tumor
but for some reason wasn't convinced that it was the
culprit and wanted to remove my adrenals to stop the
cortisol production even through the adrenals had no
tumors. At this stage of my disease I had high blood
pressure, was losing my memory and sensibility in general,
was easily confused, could not understand instructions,
was disoriented in time and space, and my speech was
getting jumbled. It seemed my mind and body were always
revved up in fast drive and I truly felt like I was
ready to explode. But somehow I had the presence of
mind to question this doctor's advice to remove my adrenals
and this is when Louise Pace stepped in to tell me to
get yet another opinion. Fortunately through the Internet
I found that the National Institute of Health in Bethesda
was doing research on the testing for pituitary Cushing's
and I was accepted into their program at the eleventh
hour.
Dr.
Lynette Nieman at the NIH confirmed the pituitary tumor
and Dr. Oldfield removed it in January 2002. I wish
I could say that was the end of my problems. Besides
being on the hydrocortisone for 19 months with at least
4 months of agony weaning off the medication, I am now
trying to put together the pieces from the damage done
by the high cortisol. It literally ate my bones away
and left me with a deteriorated ankle which was fused
in December 2002, several collapsed cervical vertebrae
which were fused in November 2003, two hip fractures
that leave me walking with a cane, and such a severe
collapsed scoliosis of my spine that I lost 3"in height
and at this point don't know if surgery will even help
the pain and deformity. Humpty Dumpty was in better
shape than me. But despite the years lost to Cushing's
and the permanent damage I am suffering, and the fact
that I will probably never be able to work again, I
can still say I am so thankful to be here to tell my
story. I certainly have had to make adjustments to my
lifestyle but at least I have that life to adjust. It's
bad enough having Cushing's but no one should have to
waste years of their life going to 30 doctors to find
their cure. More people like Louise Pace and those at
the Cushing's Foundation deserve everyone's support
in their efforts to change the situation. I hope my
story helps in that endeavor. Also, I would appreciate
hearing from anyone who had similar bone problems, in
particular if anyone could share their results of a
lumbar fusion, which I am considering.
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Code:
253 Fall 2004
Hi, my name is Joanne and I just had to write a letter
about my recent experience with growth hormone. About
4 months ago, I saw my Endocrinologist and he asked
me if anyone has ever tested me for growth hormone deficiencies.
I told him no, so he started testing me and found that
I was not producing any growth hormone at all. He told
me the normal levels for an adult was 81 to 225 and
mine was below 25.
Well,
I am now on the growth hormone and have been taking
it for about 3 months. It is an injection that I have
to give myself everyday. I can already see results!
My level has already gone up to 91, I am losing weight,
my cholesterol level has gone down and my level of heart
disease has gone down. I also have more energy. I did
experience all of the side effects; swelling of the
ankles (the first month), now I have a little joint
pain, which the doctor says will go away when my body
gets used to it.
I was diagnosed with Cushing's in 1977 when I was 30,
now I am 57 and have been on all kinds of replacements
ever since. With this new hormone that I am receiving,
I am beginning to feel like a new person!! I just thought
that I would let you know that for me, it really does
work! I'd be happy to talk to anyone who is thinking
of trying it.
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Code:
1151 Fall 2004
My story is very much like that of so many of you. I'm
a 56-year-old wife, mother, and grandmother. I work
in a public school and tell students that their stories
must have a beginning, middle, and end. Well, I'm not
sure where my story begins or will end. I had been blessed
by being a very healthy person and don't run to the
doctor for just any little thing, but these past few
years I have gone for many things; shingles, bruising
easily, fungus infection, tremors, heart catheterization,
just not at the same time. I had trouble sleeping and
a terrible intolerance to heat. I thought this must
be what the change of life is like.
In
June 2002, I knew something was terribly wrong. I was
having tremors to the point I couldn't hold my hands
still. I went to the doctor with a list of my symptoms:
higher blood pressure, heart palpitations, trembling,
feeling of nausea, headaches, nervousness, loss of appetite,
muscle spasms (arms and legs jerking), sleeplessness,
tingling and numbness in my legs, feet, toes, and fingers,
and facial hair. My doctor
thought
I had a thyroid problem and sent me for tests, which
came back high -Hyperthyroidism. The endocrinologist
concurred. I'll not go into all I went through that
terrible summer. The endocrinologist had me back for
repeated visits and tests. I was gaining weight (like
crazy) and when I asked why, he gestured a spoon to
mouth movement (that hurt, for I knew I wasn't overeating).
In the meantime, I went to my chiropractor who I hadn't
seen in months and he asked if I was taking steroids.
He said that I looked just like someone on steroids.
I told my endocrinologist this and honestly, it was
like a light bulb turned on (it clicked). He went over
to a desk and wrote (not speaking to me) for ten minutes,
I managed to make out Cushing's on the paperwork he
had given me.
I
came home, got on the net, and that is how I found the
Cushing's Support and Research Foundation. You've taught
me almost everything I know about Cushing's. I thank
the Lord for this foundation. I did have Cushing's and
went to the University of Michigan (UM), and had my
first surgery on October 20, 2003 (my eldest daughter's
36th birthday, which she spent with her father in the
waiting room). I had bone where you should have an air
pocket in the pituitary and when they drilled into it,
I lost two units of blood so they had to exit. You know
something is wrong when your neurosurgeon comes to your
bedside after surgery and pats you on the shoulder as
he says, "You were a challenge!"
I
cried into my hospital pillow most of the night. Being
a Christian, I had asked the Lord to let me have a Christian
nurse. Well, almost all my nurses were Christians. (Talk
about Angels of Mercy!) (I now tell all my friends that
you do want to be an airhead not a bonehead. One of
my friends gave me a T-shirt with BONEHEAD printed on
the front. A good sense of humor along with faith, family,
and friends can get you through.) I was sent home to
rest and build-up for my second surgery on November
24th. Part of my pituitary was removed this time. I
came home Thanksgiving Day and was more thankful than
ever for all my blessings.
My
story is ongoing, with visits to UM. I take two 10mg
tablets of Cortef each day for now. It is amazing that
you need to give your body the same thing that caused
such a rage in you. If I were to tell you The Good,
The Bad, and The Ugly of "Cushing's", you
could all relate to The Bad, like in my story, and the
Ugly, we all know, for it's when you look into the mirror
and the reflection looking back isn't anyone you know.
The Good is what I've learned and who I now am. I've
learned the power of prayer and that life's difficulties
don't have to have us pinned to the mat. I've learned
the perspective of attitude. Attitude comes from your
personal walk with the Lord. I find joy in each new
day He gives me. I quit playing the "Why"
game a long time ago and I am just thankful that I'm
walking and talking and able to do the things I do.
Each day is a gift! This newsletter has been a blessing
to me. We need each other. I hope I can help others
as you have helped me.
In
His love!
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Code:
1158 June 2004
My name is Pat. I had a Pituitary Tumor (Cushing's Disease)
removed 12/17/04, (Macro 1.4 cm or 14mm size) by Dr.
Kelly at UCLA. This has been a long journey for me.
In 1990 I was diagnosed with Chronic Fatigue and Immune
Dysfunction Syndrome (CFIDS), Fibromyalgia, and Environmental
Illness/Multiple Chemical Sensitivities. I was a Needs
Assessment and Referral Counselor at Charter Hospital.
I than went to work for Brotman Hospital as a Drug and
Alcohol Counselor, with their day treatment program
for Chronic Mentally Ill Substance Abusers, but by 1992
I was so ill I went on disability. I could not read
or write for over a year, so sick. I started a support
group, www.montagestudio.com/cefca, and phone hotline
in 1993, to give myself a reason to live. I had such
cognition difficulties and fatigue, to name a few symptoms,
that I don't honestly know how I achieved this!
In 1994 I thought I was in remission, little more functional
and decreased Fibromyalgia pain; yet, I also went through
premature menopause at that time, age 35 (I am 45 now),
which I now found out was the cause and beginning of
a Pituitary Tumor/Cushing's Disease! I was single and
I had no children. My doctor figured this is when the
tumor developed/high cortisol, to compensate for my
crashed adrenals (HPA Dysfunction common to CFIDS Patients).
I tried so hard to lose the weight all those years,
and the past few years people were always asking me
when I was "due" for my stomach was so distended.
In addition, I was anxious and depressed, experienced
nausea most of the time, facial hair, moon face, hump/fat
pads, and many of the other Cushing's effects. The Rheumatologist
just attributed this all to getting older and osteoporosis
(which I had a severe case by this time due to Cushing's
- little did I know!). No one picked up on the Tumor
situation until last October, 2003. I had other health
problems, especially mold injury (from water damage
in my home) and had to leave with basically the clothes
on my back in August. My life was upside down. I was
stressed and went to see a chiropractor to ease my tight
neck. I knew something was wrong when the x-rays showed
fat pads not bone as my old Rheumatologist had claimed.
By October 2003 a New doctor (been to so many through
these years trying so many things to get well) wanted
me to have an MRI done when I showed him my x-rays and
told him of my concerns. I was not willing to give up
and attribute it to old age! He stated he thought I
had Cushing's disease and wanted to test me. The tumor
was clearly seen on the scans, and Cushing's Disease
confirmed. I had gained 40 pounds by this time, and
looked totally different, as you can imagine.
After I was diagnosed, I went to many healers, tried
holistic things, which didn't heal me, but got me in
good shape for surgery a year later. Thank God it was
a slow growing tumor, because it was close to my eyes
and sinuses, and waiting any longer would have been
detrimental to my health. I had surgery performed December
17, 2003, at UCLA with Dr. Kelly. He has been very kind
and patient with me while I tried alternative treatment,
knowing surgery would be eminent.
As for my hospital experience, 2x's I had adrenal insufficiency
and was terrified. I had no idea what to expect, fainting
on the floor, staff all around me when I woke up, going
in and out of consciousness, frightened I would go to
sleep and never wake up, wanting to throw up all the
time, could not walk, dependent on oxygen mask (trouble
breathing) and I.V., using a bed pan, and had a longer
stay than anticipated. Plus, hurting from stitches on
my stomach, and was told was used for fat during surgery;
had cerebral brain fluid leakage and titanium mesh was
placed in my head. Little did I know that was only the
beginning. I did not understand the post-op situation
(cortisol withdrawal symptoms, medication side effects,
emergency bracelet, light headedness, to name a few).
I am struggling with continual weakness, edema, painful/swollen
hands and body. I am a wreck since surgery, going from
depression to anxiety, hormones bouncing off the walls.
hot flashes, cognition problems, incontinence (cortisol
weakens muscles including the bladder), and sometimes
crippled to the point I can't even stand to brush my
teeth. Now, ailments are popping up as the high cortisol
decreases in my body. I have a fatty liver and gallbladder
disease (cortisol can do this), Rheumatoid Arthritis
(Cortisol can do this - break down the muscles and joints),
heart irregularities, to name a few. Cortosol can cause
so much damage, and I feel like I am left in pieces
all over the floor, running from doctor to doctor to
patch me up.
I have only lost 5 pounds but my mustache is gone, which
is good news. Plus, my osteoporosis has gotten better
and is now osteopenia status; in such a short amount
of time. Taking out that tumor saved my life! So, I
have been looking for answers and finally found you
all! I am not alone! It is ONE DAY AT A TIME now, and
I am looking forward to better days ahead.
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Code:
1161 I am the luckiest man alive. I'm writing
this letter after almost losing my life. Cushing's has
changed me as a person. My life will never be the same.
I had Cushing's for 8 years before I was diagnosed.
I knew there was something wrong, but my GP said I wasn't
taking care of myself. Not exercising enough or eating
right. The first part of my body that was affected was
my eye site. I am one of the few who have lost site
from Cushing's. I was ill all the time, cold's, flu,
anything in the air, I would catch it. I put on 50 lbs.
In my face and abdomen. My blood pressure was 145 over
110.
Finally, I could not walk and went to an old doctor
I knew. He is an orthopedic surgeon. He took x-rays
and found I had multiple fractures throughout my legs.
He then sent me to a rheumatologist, where I was diagnosed.
After dozens of doctors - finally! I had a pituitary
tumor. But the damage was already done - I have loss
of site in my left eye, Avascular Necrosis, Osteoporosis,
Osteoarthritis and have had 5 major surgeries (left
hip replacement, left wrist, tumor surgery and 2 left
foot surgeries). I am still on many medications but
have my life back after 3 years of not knowing what
my future would be. I am back to work, in the gym and
love to play golf! I hope I can help support or give
someone hope. Thanks for the opportunity to tell my
story.
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Code:
984 I
developed Cushing's at the age of twelve and was not
diagnosed until almost fifteen. A relative I had not
seen in quite some time noticed I was rather obese and
had poor growth in height. Since my physical changes
had occurred so gradually, my immediate family had not
realized the outward appearance had been altered.
In
order to determine if I actually had Cushing's Syndrome,
many blood and urine tests were performed - blood tests
were done on a regular schedule for one week (I was
hospitalized during that time) and urine tests were
done daily. Due to the time involved in testing, I missed
a significant amount of school. After almost a year
of thorough physical examinations, hospital stays, and
many tests, the endocrinologist from All Children's
Hospital (St. Petersburg, FL) diagnosed me with Cushing's
Syndrome.
Once
it was determined I had Cushing's, the decision for
me to undergo surgery was made almost immediately. However,
it is worth noting here that when I underwent surgery,
the doctors did not find a tumor; so they just cleaned
the area very well. After surgery, I remained in the
hospital for a week and then went home where I recovered
nicely. Once home from this ordeal, the worst finally
behind me, my mother and I were still in contact with
the doctors and there were trips to the hospital for
continual blood and urine testing (for follow-up); this
eventually tapered off. The post-surgery medications
also decreased gradually. I followed-up with the endocrinologist
annually and always received a clean bill of health.
Even after I turned eighteen, it was recommended I continue
to follow-up annually with an endocrinologist, which
I have not followed through with - to this day, at age
33, I believe I remain sign and symptom free of Cushing's.
Previous
to this diagnosis and even for a while after, I had
a very difficult time attending school because of the
open ridicule I faced from my peers and even a teacher,
all because of my physical appearance. I learned to
deal with my condition and the fears associated with
it by listening to my doctors and by accepting the fact
that I had to have surgery to get better. I was also
pretty open and honest with my family about my feelings.
I had a lot of support from my family and that helped
me tremendously in dealing with my low self-esteem.
It was very difficult for my mom to watch me struggle
with this condition and to watch me endure all the tests
and examinations. There were times away from me, when
I know she would break down and cry, but in front of
me, she was always my pillar of strength and support.
I also know that my mom had the support of her parents
who were always there to help with anything that was
needed. I also believe that my faith in God sustained
me through the Cushing's experience and that my faith
continues to be a source of strength in my life today.
After
Cushing's, I came out of my shell, so to speak. I went
on to college, received my Master's degree in Social
Work in April of 2000 and have been in the field for
approximately 4 years. I would very much like to help
any one struggling with this disorder, particularly
families who are dealing with the illness of a child.
Please feel free to contact me.
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Code:
716 1996.
Age 46. Married. One daughter in 5th grade, another
in 10th. Working in a high stress job 4 ½ days
a week. Busy all the time. I started gaining weight
and would eat dinner then head for a box of crackers
even though I was already full. My face and neck started
breaking out. I started having to get up at 3:00 am
to go to the bathroom. My face got red and puffy, my
arms and legs got skinny. My blood pressure went up,
and my sex drive went down. None of my clothes fit.
I thought I was in menopause, but tests said no. I thought
I had rosacea, but the dermatologist said no. I finally
went to a new family doctor with a typewritten page
long of symptoms, and he immediately sent me for tests
for Cushings….He said he could retire now because
he had successfully diagnosed a case of Cushings! The
next few months brought a whirlwind of tests, doctors
visits, and finally a transphenoidal operation in a
local hospital. I foolishly went on blind faith in the
doctors, ignoring Louise Pace's plea to go to a doctor
in another city who was more experienced in pituitary
surgery. I didn't want to leave my family, and I didn't
want to question my doctors. Well, I thought my surgery
in April of 1997 was a success..the doctor told me he
had removed the tumor, I was back to work in 8 weeks,
I lost all the weight I had gained (about 25 lb.) and
life was good again-until a year later when I went to
donate blood and was told my blood pressure was too
high. I was also waking up again at 3:00 am again to
go to the bathroom., so off I went to the endo for more
24 hour urine collections, and sure enough, the Cushings
was back…My endo urged me not to do any research
on the Internet, to leave everything to him. This did
not set well with me, and when I tried to talk to my
neurosurgeon, he would not return any of my phone calls,
which I found rather odd. I decided at this point I
needed to take matters into my own hands. I talked to
Louise, I talked to Kathy Carbone, I talked to the Pituitary
Tumor Network Assoc, I met with doctors in New York,
but decided in the end, my best chance for recovery
was to try to get admitted to the NIH. I went through
months of letter writing, sending x-rays, presenting
my case, phone calls, emails until I was finally accepted
as an "exception"…Persistence was the
word here…They do not deal with many repeat transphenoidals.
During this period, my weight went up 40 lb., my legs
were so weak I couldn't get up from a squat, I could
barely climb the stairs at night to go to bed. My brain
was in a constant fog. I couldn't make a decision to
save my life. I couldn't even decide if a cake was done
cooking in the oven. I didn't even trust myself to be
driving because I would have to tell myself "green
means go, red means stop"…I was shopping for
my clothes in the maternity section, I had a mustache,
and my hair was thinning. My periods stopped, and I
was pretty much a mess. In the meantime, I sent my oldest
daughter off to college. During all this time, which
was almost year, I started taking meditation classes,
therapeutic touch classes, and reading about relaxation
therapy. I headed to NIH in April of 1999-I was so impressed
with the quality of care in this facility and met people
there that I still correspond with. I spent 3 weeks
there away from my family, but it gave me time to concentrate
in myself and my healing…I brought meditation tapes
and music with me, and the meditation practice got me
through some very long, scary nights. I had people praying
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