MICHELLE AND MARK'S JOURNEY

MICHELLE AND MARK'S JOURNEY

Michelle had her first pituitary surgery August 8, 2012. There were risks involved in making such a decision for brain surgery of this type but Michelle and Mark were told this was the only option for this disease. The operation took place, Michelle was intubated because she has a small throat and that was the only complication. Michelle was in the hospital for five days and placed on hydrocortisone for three months to avoid adrenal failure. After these months, Michelle did not feel something was right and that the Cushing's was still in her body. More testing was performed, and Michelle's endocrinologist confirmed that Cushing's was still present and wanted to send her to radiation.

After researching, Mark and Michelle sought out two specialists opinions, one from USC and the other from St.John's Health Institute in Santa Monica CA. Unfortunately, both experts informed Michelle and Mark that it did not appear the entire tumor was removed and radiation was not an option. The option would be a second surgery. In the consult, Mark and Michelle were told at least five times she was going to die if this was not treated. This was shocking and heartbreaking the way it was said. It was not expected.  The reality hit hard.

Michelle now needs this second surgery along with follow up visits with specialists in the field of Cushing's disease, and possible in home care services. After surgery, you are monitored closely because you can suffer from adrenal failure. It takes at least one to three years to see improvements in muscle mass and symptoms because the excess cortisol has wreaked havoc in your entire body during the disease. After surgery, the patient is placed on cortisol replacement so they will not fall into adrenal failuire and die. Michelle unfortunately was on cortisol replacement after the first surgery because they thought it had been successful, but in fact it was adding to the existing cortisol in her body, making the symptoms worse. 

All of Michelle's current doctor's, her primary, neurologist, hematologist, neurologist, rheumatologist, gastroenternist, and optometrist are managing the health issues Cushing's has created for Michelle. Each doctor is managing the symptoms so that when the surgery is scheduled Michelle will be cleared for surgery.

Michelle and Mark have Blueshield insurance and have made the request through their doctors to be treated at St. John's Health Institute, where Dr. Daniel Kelly is a neurosurgeon specializing in Cushing's disease. Dr. Kelly had the best success rate for second surgeries for this disease in Southern California and is known nationwide. Unfortunately, Blueshield has denied to pay for these services. They have appealed the process and have also been denied.