Cushing’s Disease Caused by a Pituitary Tumor: Vanessa’s Story

Post updated from February 12, 2020

Cushing’s disease is a rare endocrine disorder caused by an ACTH-secreting pituitary tumor. Below is a firsthand patient experience about the long journey to diagnosis, the surgical expertise of Dr. Daniel Kelly and the Pacific Neuroscience Institute (PNI) team, and the multi-year recovery process. Patient stories like this provide insight into early symptoms, diagnostic challenges, and treatment pathways for pituitary disorders.

Patient Story: Vanessa’s Experience with Cushing’s Disease

Every step along the way I knew I was where I was supposed to be, in the hands of this amazing medical team and their knowledgeable and experienced care. My gratitude towards Dr. Kelly and the medical team at Providence Saint John’s cannot be put into words.

-Vanessa B., San Juan Capistrano, CA

After my daughter was born in 2008, I started noticing changes in my body, mostly related to weight gain. I sought medical attention and over the course of seven years, I had many diagnoses along the way that never seemed to explain all the symptoms and the growing problems with my health. As my symptoms worsened, I continued to advocate for my health and ask my doctors to find the answer.

I am a critical care nurse by profession, and I knew something was very wrong. Yet after countless labs and multiple MRIs that showed no tumor, it was difficult to find a diagnosis. On a Monday afternoon in September of 2013, I walked into Dr. Daniel Kelly’s office and that day he confirmed I had Cushing’s disease, caused by a pituitary tumor.  For almost every symptom listed for Cushing’s, I could “check” the box next to it.  The physical effects of my tumor made me almost unrecognizable. 

Talking with Dr. Kelly that September day, my relief of finally having a diagnosis equaled the apprehension of the dangerous predicament I was in with my health. We discussed surgery, but even more concerning was the recovery. He scheduled brain surgery for me the following Thursday and a slew of other tests and consultations commenced to prepare for surgery.

Every step along the way I knew I was where I was supposed to be, in the hands of this amazing medical team and their knowledgeable and experienced care. My gratitude towards Dr. Kelly, ENT surgeon Dr. Chester Griffiths, endocrinologist Dr. Pejman Cohan, and the rest of the medical team at Providence Saint John’s cannot be put into words.

The path through Cushing’s has been a difficult one. The time from my first symptoms to diagnosis took seven years.  The time from diagnosis to surgical treatment took four days.  My recovery from Cushing’s took two years.  It was a long and difficult road. I remember being in tears in my doctor’s office because it was so hard, and he would cheer and say, “That’s good news!” I stayed focused, one day at a time, sometimes one minute at a time, but always grateful.

As the months passed, I regained my energy and was able to start living life again.  I lost weight.  My hair started to grow back. I began to recognize myself in the mirror again.  After a year a half, I finally had the strength to return to work. Now, almost at my three year anniversary, I consider myself fully recovered.

On a personal note, I am a single mother of a beautiful daughter. If it had not been for Dr. Kelly and the other doctors that literally saved my life, she would be growing up without a mother. Thank you for giving us a chance for a wonderful life.

We are forever grateful and thankful for your dedication to your work and your patients.

Key Facts About Cushing’s Disease

• Condition: Cushing’s disease is caused by an ACTH-secreting pituitary adenoma that leads to cortisol overproduction.
  
• Common symptoms: rapid weight gain, round face, muscle weakness, fatigue, mood changes, high blood pressure, and skin changes.
  
• Diagnosis challenges: Small pituitary tumors often evade detection on MRI; specialized endocrinology and pituitary expertise is often required.
  
• Treatment: The standard of care is endoscopic transsphenoidal pituitary surgery, performed by neurosurgeons experienced in pituitary disorders.
  
• At PNI: Dr. Daniel Kelly and the Pacific Neuroscience Institute team are recognized for advanced pituitary tumor care and minimally invasive endonasal surgery.
  

When to Seek Medical Evaluation for Suspected Cushing’s Disease

If you are experiencing multiple progressive symptoms—especially unexplained weight gain, facial changes, muscle weakness, insomnia, or mood shifts—an endocrinology evaluation may help determine whether a hormonal imbalance is contributing.

Our Pituitary Experts at Pacific Neuroscience Institute

The patient story above highlights the work of:

• Dr. Daniel F. Kelly, neurosurgeon specializing in minimally invasive pituitary surgery
  
• Dr. Chester Griffiths, ENT surgeon supporting endonasal surgical approaches
  
• Dr. Pejman Cohan, endocrinologist specializing in pituitary disorders
  
  These specialists are part of the Pacific Pituitary Disorders Center at PNI located at Providence Saint John’s Health Center in Santa Monica, CA.