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Jaque's Story...

Jaque at 35

Hi, I’m Jaque Bookwalter. I am a fifty year old mother of four and a Learning Specialist at a bilingual school in Bogotá, Colombia. One year ago, in October of 2001, my cardiologist sent me to an endocrinologist to see if she conferred with the prescription for thyroid medicine he had given me. The endocrinologist was very thorough and asked lots of questions, taking detailed notes after observing my red face, thin skin, acne, facial hair, truncal obesity, and other Cushing’s-like symptoms. She said, “You’re about to turn fifty, so now’s a good time to check all your hormone levels.”

The first thing that showed up was too much cortisol and ACTH. My blood sugar, bone density, and other tests were normal. The 24 hr. UFC test followed, then the Dex Suppression test. Then, five months after I had first visited the endocrinologist, she ordered an MRI of the sella turcica. After she saw the 5mm adenoma revealed by the MRI, she finally told me I had Cushing’s disease and would have to undergo pituitary surgery.

At 35
Click on pictures to enlarge

At 50

I started reading everything I could find on the internet about Cushing’s disease. As I learned about the long-term aspects of Cushing’s, I realized I had been developing the symptoms over a period of at least 15 years. I say 15 years because that was when ( much to my chagrin) people first started asking me if I was pregnant, and I noticed fatty cushions over my collarbone. Up to the age of 35 I had always been thin. Later, in 1996, I had a hysterectomy due to uterine myomas and ovarian cysts. Then I started having hypertension and hypothyroid. I lost all ability to control my weight, blaming it on the estrogen replacement therapy. I would diet until I almost starved, but still continued to gain weight. I tried to exercise, but was so fatigued all the time and had so many aches and pains, that I gave up. By the summer of 2000, I had gained 85 pounds and had two herniated spinal discs causing pains shooting through my arms and legs, tendonitis in my hands and elbows, plantar fasciitis in my feet, and I felt like an 80 year old woman. I guess because my Cushing’s was cyclical it developed more slowly than some cases, and the symptoms were milder. I never had striae, moon face, or a buffalo hump, and my arms and legs weren’t especially thin. Lacking these common symptoms and having inconsistent cortisol levels didn’t make my diagnosis easy.

At 50

When my endo did give me the diagnosis, I decided to schedule the surgery during my summer vacation and set the date with a highly-recommended neurosurgeon and ENT for June 22. After reading all the case histories on these boards, I felt really grateful that my endo had discovered my Cushing’s relatively soon, and that I hadn’t had to fight for a diagnosis. At the end of May, however, a colleague who insisted I should have a second opinion called and made an appointment for me with another neurosurgeon. The new neuro looked very doubtfully at the MRI and said he’d like to show it to his colleagues to get their opinions. The other neurosurgeons were doubtful , so he sent me to another endo for a second opinion too. The new endo was not convinced either, so he sent me to repeat the 24 hr. UFC, Dex Suppression, and another MRI. I canceled the surgery set for June, and it took me most of my summer vacation to repeat all the tests. The doctors were still not convinced. The new endo insisted that I did not have Cushing’s disease, and therefore the neuro was reluctant to operate.

At 50

So I went back to my first endo and she talked to the two new doctors explaining that what I had was cyclical Cushing’s, so the lab results were not always consistent, and my symptoms were not pronounced. Then she ordered a CRH stimulation test, which definitely indicated I had an ACTH producing adenoma. The neuro finally agreed to operate, but reminded me in no uncertain terms that there was no guarantee the lesion seen in the MRI was actually causing my hypertension, hypothyroidism or intermittent hypercortisolism, and therefore there was no guarantee the surgery would be effective.

Finally on October 8th, 2002 I had transsphenoidal pit surgery. The surgeons were able to remove the adenoma without any damage to the pituitary gland. The endo put me on Prednisone and doubled my thyroid medicine. After one week, the surgeon informed me that the tissue removed was a half-centimeter pituitary adenoma that was producing ACTH, confirming the endocrinologist’s original diagnosis of Cushing’s Disease. So there’s hope I may overcome my hypertension and hypothyroidism and may be able to loose weight more easily. The main concern for the moment is the “Prednisone blues”, but so far, I’ve been spared the worst symptoms on the list of possible effects, and only have a little bit of insomnia, headache and fatigue. The biggest bother until now has been my nose, but it's healing little by little. I have a constant sinus-like headache, and can't read for very long, as my glasses put pressure right on the most sensitive part of my nose. It's still kinda numb and swollen, and I can't smell much of anything. I’m not supposed to blow my nose for two months. Yesterday while my husband was blowing his nose, I said, “Man, you don’t know how much I envy you! I never imagined I’d envy somebody blowing their nose!” Overall, my recuperation has been quite rapid, and I am looking forward to the day I’ll be able to return to school. I am a firm believer in the power of prayer, visualization, and positive thoughts, so every day I imagine myself 80 pounds thinner, in great health, climbing the mountain that’s just behind my house. When that day comes, I’ll send an “after” picture!

14 months after surgery
60 lbs. lighter and on the mountain top!

Update June 10 2004

Just 6 weeks after my surgery I returned to work and have continued to work full time ever since. I'm still on hydrocortisone - 20 mgs. one day, 25 the next - but I've lost 65 pounds and my blood pressure and thyroid have improved, so even though I tire easily, and need to loose another 20 pounds, I really can't complain.

One year and two months after my surgery, I made it to the top of the mountain!

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