Cushing's Info

My name is Rashelle and here is my success story.

I grew up as a tall, skinny, athletic and active girl. I was one of those girls you envied who could eat what she wanted, when she wanted without having to worry about gaining weight. Infact most my highschool life I maintained a steady weight of 118 pounds. That all changed in the blink of eye during my senior year of highschool. At 18 yrs old my once long and skinny face, turned round and moon-like. My stomach, once flat as a board, now looked like the belly of a pregnant woman. I once stood tall but found it difficult to keep my shoulders back with the "buffalou hump" now pertruding behind my neck. My nice long legs now were now covered in stretch marks and I started getting unwanted hair in places where hair should not grow on a girl. I stopped getting my period, felt tired all the time and started to get really bad migraines. I suffered insomnia and depression.I knew there was something wrong but didnt know what. The worse part was the embarrasment of gaining so much weight, over 50 pounds in a matter of 4 months.  I would run into old classmate and I could tell by the look on their faces what they were thinking. Some would do double takes, not even recognizing me at first glance. One friend, whom I hadnt seen in years, was so confused by my appearance and swollen face that he asked if I had just gotten my wisdom teeth out? I hadnt even gotten my wisdom teeth yet!

After testings of all kinds in 1999 my family doctor (whom Im sure thought I was a hypocondriac by now) referred me to a Endocronologist. Finally I would be getting some answers! Much to my disappointment the specialist found nothing wrong with me except said I had a case of PCOS. I was prescribed some medication to help with my facial hair on my chin and upper lip. But that was the least of my worries, the hair was hardly noticable, it was my weight that I was concerned about . From then on I was going to Curves and working out at the YMCA and I tried every diet imaginable from Weight Watchers to Jenny Craig, Atkins to Body For Life. But no matter what I did nothing seemed to work. I was so frustrated! My last resort was to lay out the money to see Dr Lefebre, a weight maintenance control specialist, where after a few months  I was questioned about how much was I really eating as to inadvertedly accuse me of being a closet eater.

During this time I was in College getting my Degree in Journalism and working lots of hours and trying to balance school and work and a social life was hard because I was exhausted all the time and had zero energy. Fast Forward to November 2002, age 23. My mom had been with me through this whole rollercoaster ride and was just as frustrated as I was. One night she was suring the net for what could possibly be wrong with me when she came across Cushings Disease. She called me over and I was amazed to find that I had almost every single symptom listed! So the next day I asked my doctor for if I could get a second opinion from a different Endocronogist.

This time my new specailist said it was unlikely I had Cushings yet sent my to get a 24 hr urine test, something the previous Endo had neglected to do. She said it was the "golden test" that would confirm if I did infact have it. I remember when the test results came in and I got the news. My cortisol was unequivocally eleveated at 1061.3 nmol/day indicating that I most certainly had cushings syndrome.I was so scared, yet even more so I was relieved that I had finally been diagnosed . The next step was an MRI to determine whether or not I had a tumor on my pituitary or my adrenal gland. As it turned out the tumor lesion was on my pituitary and  measured 0.9 x 0.9 x 1.6 cm in height . It was explained to me that pituitary tumors have a 65% cure rate, but there is a lack of cure with pituitary surgery when the tumor is over 1 cm . So my cure rate goes was only 35%. Even so I was anxious to proceed with the surgery despite these statistics.

On Feb 7, 2003  I had the surgery and was discharged from the hospital 5 days later. The road to recovery was a long one but I had high hopes when I notice that my headaches had disappeared and I got my period again for the first time in 4 years. However I still appeared quite cushingoid. Doctors believed that I had been cured but warned me that results (losing the weight ) could take a while so I went on with my life waiting and watching patiently for any changes.

October 2003 I was rushed to that hospital for what appeared to be a really really horrific migraine. But it was alot different then any other headache I had ever had. The pain was so intense and almost intollerable I wanted someone to take a gun a shoot me. I spent 36 hours in Emergency being treated for a migraine and while waiting for a CAT scan only to find out that it wasnt a migraine after all. My tumor was still there and had hemorrhaged and bled into my optic nerve. I had right sixth nerver palsy with decreased visaly acuity in my right eye. I spent 2 weeks in the hospital and could not see properly out of my one eye for over 5 months. Luckily my vision came back 100%. The hemmorrhaging was said to have been a blessing in discuise. Doctors said it could mean that the tumor could be all gone after the episode but it would be too soon to tell, especially with all the scar tissue present.

Then, March 2004 I awoke in the back of the ambulance to be told that I had had a grand mal seizure. Doctors found this to be a mystery since I had no history of seizures or epilesy. Tests concluded that the cushings was still present and I had another MRI which showed risidual tumor to still extend into the cavernous sinus which is not approachable surgically. The tumor was now only a dangerous 4 mm from my optic nerve.  So next I was refered to a Radiation Oncologist to discuss the option of radiation. On Oct 20,2004 I had sterotactic radiosurgery. The following week I felt great until it all teh sudden hit me. I thing my pituitary gland just completely shut down.It was by far the sickest I have ever been. Eventually I regained my strength and things got back to normal. I still had not lost any weight and showed most of the signs of cushings. It is believed that by doing the radiation, it impacted my pituitary function casing it to shut down. As a result my adrenal glands started to over react to compensate which was not halping my Cushings at all.

So, the next step-  Bilateral adrenalectomy. In June 2006 what was suppose to be a simple, not so risky surgery turned out the opposite. The procedure should only consist of 4 very small incisions l done aparoscopy .However during my surgery they discovered that my liver was to big and had to do a complete incision across my whole stomach in order to proceed. Post surgery my blood pressure was so high I was was monitored and not let out of the post opt room for 14 hours. My recovery was a long and painful but I kept hoping and praying that thsi would be the cure. Espeially after my long history of unsuccesful attempts. First the pituitary surgery, the tumor hemerraging, the grand mal seizure, radiation, and then the bilateral adrenalectomy. I couldnt imagine what I was going to do if this did not wark as I knew  I was running out of options. My fear of never finding a cure  led me to seek further answers .

In January 2007 at the age of 26  and a few months post op my parents took my to the Mayo Clinic in Arizona. With all my medical records in hand we met with top of the line doctors and dicussed my condition and prior attempts to get cure my cushings. The doctors said it was unfortunate and just plain bad luck that I had encountered so many problems on my quest for the cure. As for as he was concerned everything that could be done, had been done. *On a side note while going through my medical records I deiscovered that at my last surgery after they had stiched me up I had to have an Xray while still under the anesthetic . Apparently the operation room was missing a pair of scissors and they were thought to have been left inside me! Luckily they were found elsewhere*  6 months after I got my adrenal glands out I finally noticed that I had started losing weight. At this point i had given up on exercise and eating healthy so found it to be a small miracle. Day by day and month by month the pounds started melting away. I was losing weight as fast as I had put it on and the best part was I wasnt even putting in any effort to do so. Before I knew it I was down to a healthy 130 pounds and back to myself.

At teh age of 27, I have been cured of Cushings! I can not describe what a relief it is and how happy I am to have overcome this horrible disease. It had overtaken my life and now I have my life back. I still have to see the doctor regulary to monitor my meds and will be on medication for the rest of my life. I have developed hypoglycemia and Nelsons Syndrome which only affects my skin pigmentation and gives me a year round tan. All of that is nothing compared to what I was dealing with when I had cushings. Having the disease strangely somehow  has made me a better person. I am not quick to judge a book by its cover and really truly care for people.

Infact, after having completed my Degree in journalism I am now going back to school to become a nurse. After my experience I want nothing more than to help people who are sick. Just remember that what ever your facing, whether you have been diagnosed or are trying to get diagnosed, never give up. Stay strong, keep praying and believe you will be cured.

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