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I am a 47 year old woman diagnosed with Cushings Disease June 2014. I have always been one of those girls who was curvy, but was a yo-yo in the weight department.
About 1o years ago I was diagnosed with PCOS. I had extra facial hair, extra weight, irregular periods, infertility problems. Boy did I feel good about knowing what was wrong with me!
Then a couple of years after that I had a stress fracture in my right foot. I seemed to take forever to heal, but finally did. I had several uneventful years. I did have pain in my pelvic area for quite sometime before deciding something had to be done. Four years ago, after visiting my gyno, it was decided that I should have a hysterectomy due to fibroids. That is when the fun really started for me.
I really didn’t noticed, but sometime after that my skin became really oily, I had acne (for the first time in my life), and the weight had come on. My hair became quite wavy. And the stress factures started.
First my left foot, the 2nd metatarsal, then the 3rd metatarsal. All in all I have had four different instances of stress fractures in my feet, and one on my ankle. What got everyone’s attention though, was when my hip broke.
I had been seeing a chiropractor for back problems I figured were due to wearing a boot for my fractures on and off for years. My back did not seem to be getting any better. As a matter of fact my hip area seemed to hurt worse. Then, early the morning of January 8, 2014, I was trying to make my way to the bathroom, when I heard this awful noise, felt an even worse pain and down I went. Later the doctors figured I had had a stress fracture that had started to heal in the femoral neck of my hip, but broke.
All of my doctors were scratching their heads. But that was about all. My PCP ran some blood and urine tests, but really did not find anything out. I FINALLY asked every one of my doctors, since they did not know what was wrong, where did they suggest I turn. Each one said and endocrinologist. Of course my next question was “What is an endocrinologist?”.
That was in February 2014. I was referred to Dr. Ferries, one of the few endos in Wyoming. It took a while to hear from her, but when I did, I was disappointed to hear that the soonest I could get in to see her was in June.
In the meantime, I had refractured my ankle. April 1, 2014 I had the ankle repaired. April 7, 2014 I passed my first kidney stone. I let Dr. Ferris know about it. Shortly after that my appointment got moved to May.
My appointment with Dr. Ferries last about 2 hours. After asking all the questions, listening to my story and an exam, she told us she thought it may be Cushings, but needed to do several tests. She let us know that it was something that would take some time.
I did the urine tests, the blood tests, and an MRI. My cortisol levels were way out of the norm. The MRI showed a 6mm microadenoma on my pituitary. I was ecstatic! After deciding to have my little friend removed in Denver, Co, Dr. Ferries sent my referral to Dr. Lillehei at University Colorado Hospital.
I took a few days, but they called to make an appointment. July 31, 2014 was my appointment with the brain surgeon. I was so happy to be on my way to feeling better! I had to tell my story again to Dr. Lillehei, the brain surgeon. He did not see the tumor, so he wanted me to see his endocrinologist. Then I had to tell my story yet again to Dr. Wierman. She told me she was not impressed by my previous tests and MRI. She would like me to do them all again. She told us they had their protocols, and when they did not follow them, they usually got bit. I was disappointed, but understood.
Those results of those tests were inconclusive. My cortisol was not nearly as high. So the next step was IPSS. The petrosal was scheduled for August 18, 2014. The results of the that test were quite definitive. There was an ACTH secreting tumor on the right side of my pituitary. Hooray!! My surgery was scheduled for September 5, 2014.
The surgery went off without a hitch. Colin, Dr. Lillehei’s PA, then informed me that the surgery was the easiest part. He said I would pretty much feel like sh@%. He was right. I am feeling better and better. My skin is not a grease pit any more. I am loosing weight. My appetite sucks and sweets make me even more nauseated. I can manage to make it to aquacise several times a week, though. I am looking forward to the days when I have energy!
Vicki Perez first noticed she was gaining weight back in October 2015 – and in less than 12 months she had ballooned from 9st 4lbs to 12st 4lbs.
Her face began to bloat and her feet swelled so large that she couldn’t even wear shoes.
The shocked mum-of-one learnt she had Cushing’s disease, which is caused by high cortisol levels.
But it wasn’t until last January that she found out it was due to a deadly tumour on her pituitary gland.
After two surgeries to have the tumour removed, Vicki has finally began to recover and is sharing her story to raise awareness.
Vicki, who is currently studying to become a dental hygienist in Florida, said: “The gym and fitness has always been my passion.
“I train every day. So I was shocked when I noticed my face was getting puffy and my hands and feet were swelling like water retention.
”They were so swollen I had to wear men’s shoes and my clothes didn’t fit.
“I felt bloated all the time and I didn’t want to leave the house.
“I continued working out at the gym not realising I was causing damage.”
In February 2016, she noticed strange rashes on her hands and body and was rushed to hospital in anaphylactic shock.
Vicki said: “When I saw the rashes I thought it was an allergy but the next day I work up and I couldn’t breathe.”
Despite numerous tests, medics continued to deny there was anything wrong.
The fed-up mum decided to see a Cushing Disease specialist at The University of Alabama.
She said: “I took my MRI and CT scan and they saw the tumour was in my brain.
“My hospital had completely mis-read it.”
After further tests, doctors were able to confirm it was a brain tumour.
She said: “I’m not sure how long I had the tumour. I thought I was going to die.”
After an initial surgery to remove the tumour on the left of her pituitary in June, and a second op to remove a second tumour in July, Vicki’s health began to improve.
She said: “Two days after the first surgery and my feet were normal.
“I was excited, I felt great, I felt amazing but a month later I was back in hospital for the second surgery.
“The recovery was hard, it hurt to move. I had to teach to walk again and how to run again.
“I was angry and I was crying all the time. It messes with your hormones and makes you think you are crazy.”
The road to recovery has been long and after eight months, Vicki still has a way to go.
But now her weight is down to 10st 10lbs and she is able to wear shoes and her normal clothes again.
She said: “It’s a slow process.
“I am not 100% back to normal and any emotional stress can be dangerous for me and cause me to go into shock.
“But I am starting to see improvements and I’m just focusing on my son and school.”
Vicki added: “My son really struggled with seeing me so sick but now I am able to spend time with him, he is so much better and not acting out at school.
“He’s the most important thing, I couldn’t have got through this without him.”
Have been experiencing symtoms since mid90s. Spent almost four years on high doses of steroids for brain tumor, snd diffilculty being weaned off.
Midsection has continued to grow,blood pressure and glucose levels have risen. Upper body muscle has all but disappeared, have the hump on back of neck. Developing facial hair, have lost upper body muscle
My journey started about 7 years ago. I began with generalized symptoms. I had severe insomnia, muscle and joint aches. I would be wired for a few days than couldnt get out of bed for days. The symptoms continued to get worse.
I sought help from several dr’s which led nowhere. after doing research I really felt that my symptoms were related to cushings. My local endo did run a few urines and salivas which came back elevated, however, he just wanted to re test in 6 months. I was deteriorating so rapidly that I decided to go to LA and see Dr. Friedman. Best decision of my life.
I will be starting on Ketokonazole after he gets labs that he drew back, and he has Dr. M at MD Anderson reviewing my MRI.
For the first time in many years I feel there is a light at the end of the tunnel. I am so greatful that I have found Board s like this one so that I am able to inform myself. So thank you !
Erica was a fellow Cushing’s Disease survivor. She had been through pituitary surgery, radiation, and a BLA in an effort to receive her cure.
I didn’t know her myself, and I don’t know if she was a member of the Cushing’s Help boards but it’s so depressing to know that we have lost another so young from the damage done by this horrible disease.
Erica Michelle Meno returned to her heavenly home on March 6, 2015. Nicknamed, “GaGa,” she was born and raised in Cincinnati, Ohio. She was 38 years old. She graduated from Sycamore High School, Northern Kentucky University and Eastern Kentucky University. Erica had a zest for life and just loved being with her family. She loved sports of all kind and loved to cook. She was an avid reader and volunteered much of her time and many years at The Ronald Mc Donald House.
In addition to her family she had a great love for her pets especially her lively dog, Chesney. She is preceded in death by her grandparents Anthony and Mary C. Meno and Joseph and Katherine Terzo and Aunt, Karen Meno and Uncle, Bruce Ficke.
She is survived by her parents Michael and Mary Meno, devoted brother Ryan Meno and sister-in-law Melanie, loving niece and nephew, Leah and AJ Meno, her aunts and uncles: Frank and Terri Terzo, John Terzo, Judy (Terzo) and Chris Tocatlian, Victoria Ficke and Teri Zingale, cousins: Joseph and Kristen Terzo, John and Lesli Terzo , Amanda (Terzo) and Mike Stewart, Dominique and Natalie Tocatlian, Kati (Terzo) and Chris Mottershead, Dana (Terzo) and Omar Qureshy, Joe Granato, Kelly Ficke, Alex and Melanie Ficke, Vincent, Sam, and Remy Zingale. Erica was deeply loved and will be missed and remembered by many friends and family. Visitation will be 9am until time of Mass of Christian Burial at 10am on Friday, March 13th at The Community of the Good Shepherd Catholic Church, 8815 E. Kemper Road, Cincinnati, Ohio, 45249.In lieu of flowers, the family has requested donations may be made to the Ronald McDonald House Charities in Erica’s memory.https://www.rmhcincinnati.org/help/donate/donate-online or you may also donate by check, made payable to RMHC – Greater Cincinnati, and mailed to Ronald McDonald House Charities, 350 Erkenbrecher Avenue, Cincinnati, OH 45229. Thomas-Justin Memorial serving the family. – See more at: http://thomasjustinmemorial.com/tribute/details/575/Erica_Meno/obituary.html#content-start
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Some of the comments from other Cushies:
My condolences to Erica’s friends and family and to our Cushie community.I too am afflicted with Cushings and a part of me dies every time I lose another fellow Cushie!The world just got a little bit dimmer without her beautiful soul!May she rest in peace and may her memory live on.She was a wonderful person.
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Dear Meno family, My name is Melanie and I’m a survivor of Cushing’s Disease. Your daughter and I corresponded a few times on a message board dedicated to this disease. Please accept my heartfelt condolences at the loss of your beautiful daughter. Every time a member of our Cushing’s Family leaves this earth it sends a wave of sadness throughout the world-wide members who live with this disease daily. The tribute you’ve written about Erica is lovely and indicates what a beloved daughter of God she is and how special she is to you and your family. I believe our lives continue on in the next life and believe Erica is now free from pain and sorrow. May God grant you peace and comfort in the days ahead. With love,
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My prayers go out to all who knew and loved Erica. Having had surgery for Cushing’s Disease and dealing with it’s consequences myself, I am inspired by her strength and determination to keep pushing forward for her cure. My heart aches that she was taken so early, and I pray she can now rest from her struggles and is at peace.
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I wanted to express my sincere condolences to Erica’s family and friends at this difficult time, my thoughts and prayers are with you. Sadly I never got a chance to meet Erica in person, we met though Bobbi Phillips on FB. We both have Cushing’s disease or as Erica called us Cushies and there aren’t many people that understand, it was a comfort to have someone that does. I will miss hearing from her, she will hold a special place in my heart. God Bless Erica!
Two months before my 31st birthday, I was diagnosed with diabetes. I was really shocked considering no other family member (maternal or paternal) had this disease.
Well, as the months followed, so did other diseases such as high blood pressure, high cholesterol, etc. Each diagnosis brought more shock because I felt great and could keep up with any 20 year old out there. Within the next two years I had gain 70 pounds and looked like an apple with popsicle sticks for legs. I also seemed to have more symptoms which seemed to be dismissed by the doctors because it was also a symptom of one of my other diseases.
In the past 8 1/2 years, I’ve had 3 doctors, 3 endocrinologists, a hemotologist, a nuerologist, and 2 cardiologists that just keep attaching my symptoms to one of the labels that has already been given to me. Now, at the age of 40, I feel like I have the body of an 80 y/o. I can hardly walk because of the clots in my legs (have 2 stints), can’t stand for long and bending just kills my back because of the crack in my L5 S1 vertebrae, and among other things, can’t seem to do anything because of the extreme fatigue I have. I have no doubt that I have diabetes, high blood pressure, high cholesterol, clotting problems with my arteries, and everything else they want to label me with, but it seems to me that after only 8 1/2 years, my health shouldn’t have gone down hill so fast. I also take 16 pills a day because each doctor wants to give me a medication for each symptom.
For a few years, I’ve been searching the internet for an answer. I would spend hours and seem to hit a brick wall each time. Still, I wasn’t going to give up. No one gets so sick that quickly from any of the diseases I’ve been diagnosed with. Just the other day, I was watching Mystery Diagnosis . I don’t even remember what it was about, but it did prompt me to start my internet search again. I did something different this time. I didn’t research all of my “diseases”. I simply typed in the search field: “Do any diseases mimic diabetes”. Guess what popped up all over my screen. Yep, Cushing’s Disease. I went to article after article and website after website. I was amazed to find that many of my symptoms were linked to Cushing’s Disease. I couldn’t believe what I was reading. My “diseases” could actually be a symptom of a bigger disease which would explain a lot to me. Now I have another endo which I’ve made an appointment with (a month away, yuk) and I’m going to ask to be tested specifically for Cushing’s Disease.
Below I’ll list my symptoms.
Round “Moon” Face, Fat Lump on Back of Neck, Low Potassium, High Cholesterol, High Blood Pressure, High Blood Sugar, Glucose Intolerance, Insulin Resistant, Muscle Weakness, Fatigue, Anxiety, Irritability, Depression, Decreased Fertility, Decreased Libido, Acne-like Rash, Backaches, Excess Facial or Chin Hair, Slow Healing Cuts or Scratches, Large Abdomen, Insomnia, Irregular Periods, Edema, Scalp Hair Loss, Excess Sweating, Memory Problems, Dizziness, Low Growth Hormone.
I also have a chronically high platelet and white blood cell count. The Hematologist couldn’t even figure it out (Yes, cancer has been ruled out with a bone marrow biopsy). I’m not sure if that has anything to do with Cushing’s or not, but unfortunately I have that as well.
Sometimes we tend to forget that many doctors only spend 7-10 minutes a visit speaking with us and forget about us about 7-10 minutes after leaving the room, and they certainly don’t lay awake at night thinking of us. It is much easier for them to treat a symptom that has already been issued a label rather than find a bigger cause for it, so we sometimes have to take matters into our own hands and help ourselves.
I’m thankful to have found this sight. If I find out that I do not have Cushing’s, I will continue my search, but it is nice to know that I will find an answer someday.
I had been sick for eight years before I finally got diagnosed with Cushings disease. My daughter went online and punched in hump on back and found out about Cushings disease. Then she went to sites like this one and found out what tests were necessary, which was very helpful, because not only did the endocrine doctor I saw think I didn’t have cushings disease, he also didn’t know what tests I needed. Thankfully he was on board with ordering the tests we asked him to order.
In 2008 I had pituitary surgery. I went on steroids afterwards for over a year. I lost all of the weight I had gained. My doctor told me I was cured. I kept telling him I was still exhausted and I was sick all of the time, but he wouldn’t listen and told me I was just depressed. Since then I have been to three other endocrine doctors. I have done a few 24hr. Urine collections and an 11 :00pm to 7am urine collection. I also did 3 saliva tests which were normal. The night time urine collection was on the “high side, but still within normal range “.
I had an MRI which didn’t show anything either. My doctor said he would do more 24 hrs urine collections in a couple of months. He said he would also do another MRI. I haven’t had any luck with the 24hr urine collections, so I am not expecting much. I had pretty much resigned myself to the fact that I will be fat and sick the rest of my life because I am so tired of doctors telling me they can’t find anything wrong with me.
I gained 60 lbs. In 6 months after my doctor told me I was cured. At the same time I started gaining the weight back, I started to get the same symptoms I had when I had Cushings disease. Since then my weight continued to climb until I started taking cortisol reducing supplements. Now I am still sick, but my weight has stayed the same. I have days where I am so sick I don’t want to get out of bed. Most of those days I have severe headaches and back aches. I get colds and flu a few times a month. People don’t think it’s the flu because I get it so often, but I have vomiting and body aches, just like I did when I had Cushings disease. I think I may have cyclical cushings because the tests aren’t showing anything. I am wondering if someone could recommend a test or tests that are good for cyclical cushings disease.
In March 2020, college student Gianna Schembari, 23, began to battle an illness that she would later learn is an extremely rare disorder of the endocrine system, the body’s complex network of glands and organs which uses hormones to control critical functions such as metabolism, energy level, and the ability to respond to injury, stress, and mood.
“The most noticeable symptoms that happened that early were the significant weight gain, my mood swings,” recalls Ms. Schembari. “I just kind of started getting into a really depressive state. I would get these headaches and I would get heart palpitations. I mean, things just started getting worse very quickly.”
Eventually, an MRI revealed a small benign tumor, called a microadenoma, located on Gianna’s pituitary gland. That’s an indication of Cushing disease, a rare and serious disorder that affects only 10 to 15 people per million. With proper surgical or medical treatments, a person with Cushing can return to a healthier life — as was the case with Ms. Schembari after she met a team of experts in removing pituitary tumors at Miami Neuroscience Institute, part of Baptist Health.
(Watch video and hear from patient Gianna Schembari and her surgical team: Neurosurgeon Vitaly Siomin, M.D., Miami Neuroscience Institute, and Francisco Pernas, M.D., an ENT (ear, nose and throat specialist) affiliated with Baptist Health. Video by Carol Higgins.)
Neurosurgeon Vitaly Siomin, M.D., Miami Neuroscience Institute.
“The pituitary gland is one of the most critical parts of the brain and I would picture it as a command center that would produce the critical hormones and send them to the bloodstream,” explains neurosurgeon Vitaly Siomin, M.D. “Cushing’s disease is a condition when one of the hormones, which is called ACTH, is produced in excessive quantities.”
Once in the bloodstream, the ACTH hormone stimulates different organs of the body, and patients “may present clinically with high blood pressure and with some fat deposition in a very abnormal way. Some patients may decompensate and develop diabetes. The immune response is altered. They may develop brittle bones, pimples on the face and other problems.”
Medication to help shrink the tumor presented severe side effects.
“It made me very, very sick,” said Ms. Schembari. “I could not function. I was in bed. We were just like: Okay, maybe we need to go ask somebody else what they think.”
Ms. Schembari and her family then turned to neurosurgeon, Michael McDermott, M.D., chief medical executive at Miami Neuroscience Institute. A multi-specialty team of physicians experienced in the treatment of pituitary tumors was assembled for her case, including neurosurgeon Vitaly Siomin, M.D. and Francisco Pernas, M.D., an ENT (ear, nose and throat specialist) or otolaryngologist, affiliated with Baptist Hospital and other Baptist Health facilities.
“When I met with the team of all of my different doctors, I just instantly felt like everything was going to be okay,” said Ms. Schembari. “They knew exactly what it was and then they just had their plan as to the treatment.”
Dr. Pernas emphasizes the importance of the team approach at Miami Neuroscience Institute. “Some neurosurgeons will do the surgery on their own,” he said. “The difficulty becomes in the nasal anatomy. We as ENTs are skilled at nasal anatomy, and we’re skilled at nasal endoscopy.”
Dr. Siomin explains how technology has helped advance the removal of pituitary tumors via minimally invasive techniques.
“We could put the scopes through the nostrils and navigate the scopes using what’s called the image guidance technology,” says Dr. Siomin. “It is just like GPS that most people use for driving. We use the same technology for surgery that helps us to go directly to the tumor, open up very minimally and resect the tumor using the endoscopic visualization.
Ms. Schembari recalls her condition before the surgery. “I had high blood pressure, anxiety, panic attacks, nausea, vomiting — all that stuff and I was on about five medications.” But now, she is on track to a full recovery. “Since the surgery, I am not on one medication and all of those symptoms are completely resolved,” she says. “It’s been about seven months since the surgery and I feel amazing.”
Says Dr. Siomin of the pituitary tumor: “It’s all gone. And she has normal pituitary gland tissue.”
To say that Ms. Schembari is grateful is a huge understatement: “They are the best doctors on earth. I feel like a whole new person. I basically got my life back and I’m super, super happy.”
Where do I start? I have had Cushing symptoms since the late 1990″s. I was tested for cushings and was told that I did not have it.
Then in 2007 I was diagnosed with a tumor in my adrenal gland, mind you I still had symptoms off and on since the 90’s. I went to every endocrine in the Fredericksburg area and was on the OR table to have my adrenal gland removed when the Endocrine said that Cushings was not completely ruled in as what was going on with me, despite 3 24 hour urines showing elevated cortisol levels.
Then I went to this doctor then that doctor…….still saying they couldn’t confirm my diagnosis. In October 2007 I was admitted to the hospital with a pneumonia and did an MRI of my head (again) because I was having severe headaches which showed a lesion of some kind.
After 6 weeks of IV antibiotics and a repeat MRI I decided that I should go see a neurosurgeon. As soon as I walked into his office and never saying a word with medical records in my hand he said “Have you ever been worked up for something called Cushing Syndrome? I replied yes and he said you are very sick and need to have it taken care of and sent me to Georgetown Hospital in Washington DC….where I saw a surgeon and had my right adrenal gland removed 12/29/2008.
I have been pretty healthy until about 18 months my primary doctor was concerned about my heart rate being so high and my brother had just had a quad bypass surgery and sent me to the cardiologist. My heart rate has never been lower than 100 since I can’t remember…..and back in March 2014 I started having weakness going up the stairs, then in September my hips and back started hurting and I was having problems falling asleep and staying asleep.
My HbgA1c was 13.7 and I could not figure out why my blood sugars were spiking despite being on a diet and insulin. My cortisol level was normal in October. I started a really strict diet and not cheating the week of Christmas…..yes I know crazy…..I was only eating veggies, protein and 2 fruit servings a day…to detox my body….I gained 6 pounds.
When January came and I had to see my cardiologist for a follow up my heart rate was 128 and I i had gained 17 pounds in four weeks and guess where it all was…..my abdomen…..I felt like my Cushings had been causing havoc on my body. I was noticing the thin skin and bruises that wouldn’t heel. But I was thinking this can’t be returning until my cardiologist ordered that dreaded 24 hour urine and my levels were 98….2 times the normal….
I just did a repeat last week and had a MRI of my abdomen which the urine was guess what positive for elevated cortisol and the real shocker came today when my doctor called and said my MRI showed both adrenals….but how can that be I had the right one removed in 2008 that had a 4cm tumor in it??? My doctor is wondering if there was residual tissue left behind and what seems to be an adrenal is really a tumor??? Has anyone experienced a re-growth or Cushings for a second time….
My doctor is trying to get me into Georgetown asap because obviously the beast has returned.
Thank-you for your support and understandings in advance!!!!!
I am 38 and had three transphenoidal surgeries for Cushing’s.
I had a CSF leak with the 2nd and when they went in to repair it and look for more tumor my remaining pituitary gland was necrotic and I lost the whole gland.
That did not cure my Cushing’s so I went on to have a laproscopic adrenalectomy followed quickly by galbladder problems and appendicitis. Dr. Ludlan, Deleshaw and Sheppard at OHSU worked with me. I had my pituitary surgeries in 03 and my adrenals and other 2 surgeries in 04.
I have not been able to return to work as a nurse and feel thie surgeries have greatly reduced my quality of life. I would love tro talk with other people.
I have two adopted kids from China as a single mom who are 12 and 13.
I know have problems with fibromyalgia and arthritis.
Cushing's Disease is a rare condition caused by excessive production of cortisol, a hormone essential for various bodily functions. It is a specific form of Cushing's Syndrome, where the overproduction of cortisol is due to a tumor in the pituitary gland. The condition affects 10 to 15 people per million each year, predominantly women between […]
For all of my early life, I was the good, compliant, patient. I took whatever pills the doctor prescribed, did whatever tests h/she (most always a HE) wrote for. Believed that whatever he said was the absolute truth. He had been to med school. He knew what was wrong with me even though he didn't live […]
Transsphenoidal surgery is the primary treatment for patients with Cushing disease (CD). This study assessed the surgical and endocrinologic outcomes of patients with CD following endoscopic pituitary surgery using strict biochemical criteria to guide surveillance in patients not achieving early remission.
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