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I am a newbee. I hadn’t even heard of such a thing as Cushing’s disease until last year (2007). Pituitary? Beats me – must be some gland somewhere. What the pituitary actually DID was way beyond my scope. I was a 52 year old aviation photographer living in the Napa Valley totally ignorant that I had a life threatening illness.
I was starting to think I was going insane. For 8-10 years I felt that I was unjustly given a major dose of terrible karma. My blood pressure was in the stratosphere, I bruised at the drop of a dime, menstrual periods were like scenes out of a slasher film, and my bone scans looked like Swiss cheese. My face became round, red and puffy and my weight gain took me to a robust 203 pounds. Very strange because I am a vegetarian, have never over-eaten and had exercised moderately (when I wasn’t recovering from bruising or shattered bones). Kidney stones were a common occurrence. (I think I went through 7 or 8 of those). My depression heightened with every doctor visit. My woes were alternately blamed on bad diet, being female, being clumsy, or just plain unlucky. Totally depressed and at the end of my rope, I signed up for the Dr. McDougall 10 Day Diet and Nutrition Program.
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Dr. McDougall promotes a vegetarian vegan lifestyle through proper nutrition and exercise so I thought I’d give it a try. The doctors at my HMO couldn’t figure me out, so I put my faith in a lifestyle change. After my 10 day gourmet boot camp, Dr. McDougall suggested that the HMO check me for pituitary or adrenal problems. He was the first one to suggest I had Cushing’s syndrome. They reluctantly did the tests and the diagnosis was confirmed. I had full blown Cushing’s disease. That lifestyle guru figured out in 10 days what the mainline medical doctors couldn’t… or wouldn’t.
I thought once the diagnosis was made, my life would then be a bowl of cherries. Wrong-wrong-wrong… It was more like the pits. Once I found out I needed brain surgery I went into shock. I am a single woman living with a golden retriever. How am I going to handle this? I called one of my friends to tell her about my situation. Her husband answered the phone. I mentioned that I was going in for brain surgery. He responded by saying, “Gee, I hope it isn’t serious.” I hung up the phone and cried. He just didn’t get it. Nobody got it. I was scared, confused, depressed and convinced I was alone in this world and was going to die.
The next six months were summed up in one word; tests. Tests, tests, and more tests. I won’t go into detail because you’ve all been there. You know the drill. Finally, I was to meet with the HMO’s neurosurgeon. I know you are supposed to respect, communicate, and get along with your doctors. Without going into detail, I wouldn’t let that man feed my dog, let alone poke around inside my brain. I went for a second opinion. The next surgeon I met at California Pacific Medical Center wouldn’t take the job. The tumor appeared to be too close to the carotid artery for his surgical expertise. He, in turn, sent me to Stanford University Medical Center. I was unbelievably lucky to be teamed with Dr. Laurence Katznelson and Dr. Edward Laws, the best in the world. I was scheduled for surgery November 13, 2007.
My transsphenoidal surgery went fairly smoothly. The next day however, a rather salty liquid started dripping down my throat and pouring out my nose. I had a spinal fluid leak. The fat patch from my abdomen didn’t hold. Here I was, less than 24 hours after my surgery, going back in for a second round. I was so doped up I barely knew what was going on. I heard later, I was quite cranky. This time, the doctors took a muscle graft out of my left thigh to use as a plug. That did the job and I now have a 3” scar as a conversation piece (assuming someone gets lucky enough to glimpse my thigh.) After nearly a week in the hospital, I went home to recuperate.
It was a strain trying to recuperate once the bills started rolling in. My health insurance refused to pay for my procedure since I had “gone out of system”. I was both saddened and enraged. Their surgeon couldn’t do the job and they weren’t willing to pay for another better qualified doctor to do my surgery. I went through an in-house arbitration process to determine if the bills would be paid by my HMO. The answer was NO. I went through a second arbitration, and the answer was the same, NO. It’s hard to get justice when the arbitrators are hired and paid for by the insurance company. Hmmm, conflict of interest…??
After my second rejection and the loss of life savings, it was suggested that I take my case to the California State Department of Managed health Care in Sacramento. I submitted all of my medical records, letters from five doctors, and a letter from myself, explaining my situation as well as a photo so the reviewers could put a face to the story. This was a make or break deal. I was maxing out my credit card every month and getting more upset with every check written. The wait for the State’s decision was unbearable.
Finally, on April 2nd, 2008, I got the news. I opened up the big white envelope and read: “Your request for reimbursement of an endoscopic removal of a pituitary tumor was referred to the Department’s Independent Medical Review Organization. In your case, the independent provider determined that the service you requested was medically necessary. This decision overturns the original denial by (the HMO). This decision cannot be appealed. The decision of the Center for Health Dispute Resolution is final.”
This was huge. I won. I was cut a large check immediately for my surgery and all related expenses. The money went right back into my savings account, and guess what…? All those credit card payments went on my mileage card. So not only was I totally reimbursed, I got my fair share of frequent flyer miles!!!! Now that is a real encouragement to heal! Six months after surgery, I went on a 3 week trip to England, taking in a Paul McCartney concert in Liverpool. Eight months out, I have now lost 25 pounds, and have gotten off some of the meds. I can’t wait for my one-year check up. I’m a middle–aged gal with a whole new life to look forward to. Justice prevails. You CAN win if you set your mind to it and have the right advice! Perhaps I am stubborn, but sometimes you just cannot let the bad guys take advantage and walk all over you. In this day and age, you have to fight for your rights. When I was initially diagnosed with Cushing’s, I felt like a loser. Now, I feel like a winner.
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