And It's About Time There Was Some Support For Cushing's!
My Medical Journal
DOB 6/14/58
Born and raised in Oak Ridge, TN. Note: Very high rate of cancer, reproductive and endocrine problems among Oak Ridge workers and residents.
Prior to 1990
| Surgeries | Appendectomy, Wisdom Teeth, Tonsils, Ovarian cyst (huge – size of tennis ball) removed from left ovary, Hernia, Endometriosis (3 laparoscopies) |
| Skeletal | Scoliosis – wore back brace 1971-1972. Broken arm, 2 broken legs |
| Hospitalizations | 1973 - Severe E-Coli, almost died. |
| 1981- pneumonia | |
| 1982 - gastroenteritis | |
| 1986 - gastroenteritis | |
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| Age 10 | Age 30 | Age 32, Wedding Day |
1990 – Present
| 1990 | Migraine headaches begin. Weight 140. | |
| 1991-1992 | High prolactin interferes w/conception. Started on Parlodel and conceive immediately. Gestational diabetes. Healthy 9 lb. baby after 3 day induction on 7/6/92. After delivery, MRI showed 3 x 7 mm pituitary tumor on right inferior aspect of gland. Placed back on Parlodel but made headaches worse. Switched to Permax, headaches not as bad but made me very nauseous. |
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| 1993-1995 | Migraines, often with blindness twice monthly. Dr. #1, Endocrinologist, tries a variety of prophylactics. Nothing works. See 2 different neurologists who tell me there is nothing they can do. New drug, Imitrex works some of the time. MRI- tumor down to 3 x 2 mm. Discontinued Permax. |
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Laura's first Birthday |
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| 1/96 | Severe migraines w/vision problems continue. Constant “buzzing” in head. Very fatigued. Continued insomnia. Problems with menstrual periods, very painful and heavy. | |
| 2/96 | Hospitalized w/bacterial pneumonia w/complications of cardio-pulmonary edema. | |
| 1997 | Continued migraines. Weight gain. Feet keep growing. Hair on face. Lots of bruising. Hundreds of skin tags. Insomnia - wake every morning about 4:00 am. Very fatigued. Constantly sick with viral infections. Prolactin normal. |
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1998 |
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| June | Very high cholesterol. Prolactin normal. Started on Pravachol. Complain to Dr. 2 about heaviness in chest and swollen ankles. Profuse sweating. Treadmill and stress test negative. He diagnoses depression but I disagree. | |
| August | Large ruptured ovarian cyst. Hospitalized. Tests determine both ovaries are totally polycystic. Diagnosed severe PCOS. | |
| September | Total hysterectomy. Ob-Gyn says it was the worst endometriosis and PCOS she’d ever seen. Day after release, rushed back to hospital via ambulance w/breathing problems and severe headache. Cardio-pulmonary edema is found. Hospitalized again. Severe pain in lower back starts. Heart catheter next day is negative. | |
| October | Back pain continues to be severe. MRI reveals herniated lumbar disk. Back surgery. No headaches this month! | |
| November | Start supervised work-out program at YMCA. Every other day: 30 minutes on treadmill, free weights and nautilus. Continue hard exercise for 90 days; no weight loss but much stronger. Migraines resume every 2 weeks. | |
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1999 |
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| March | Bacterial pneumonia/cardio-pulmonary edema with excruciating headache. (3rd time in 3 years. Hospitalized. Dr. #2, PCP is leaving the practice for research. | |
| June | New PCP – Dr. #3. Continued problems w/migraines, bruising, insomnia, night sweats and fatigue. Buffalo hump is noticable. Weight up to 210. Severe pain and grinding in neck and shoulder area. Discontinue exercise. MRI shows nothing. Receive 3 cervical epidurals and physical therapy. | |
| December |
MRI of brain shows no significant change in tumor. Prolactin normal. High cholesterol. Started on 10mg. Lipitor. |
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2000 |
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| July | Problems w/joints. Pain in hands and fingers, especially in morning. Test for arthritis is negative. Migraines every week. |
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| October | Reoccurrence of neck pain. Another MRI shows nothing. Neurosurgeon starts me on dexamethasone for inflammation. Profound improvement in state of heath! Neurosurgeon suggests that I get tested for Cushings. No migraines! | |
| November 1 | Discontinue dexamethasone. Start feeling terrible again. Migraines start again. | |
| November 13 | 24 hour urine free cortisol test is 190. Dexamethasone Suppression Test: No suppression at low dose; suppression at high dose. Dr. #3 wants me to see endocrinologist. Preliminary diagnosis: Cushing’s Disease. Trying to find pituitary specialist. | |
| December 8 | Get ill at work. Bad headache. Very dizzy w/blurred vision. Taken to ER. Blood pressure 176/90 and fasting blood sugar 180. Hospitalized overnight. Diagnosed with diabetes and started on Glucovance. Another 24 hour UFC is 90. | |
| December | Visit to Pituitary Clinic at UAB. Evaluated by team. Agrees with preliminary Cushings diagnosis. Referred to Dr. #4, a pituitary neurosurgeon at Emory. | |
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2001 |
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| January | New Insurance Carrier. Current PCP, Dr. #3 is leaving Atlanta. Continued problems with blurry vision, dizziness and balance. Buzzing sensation in head. Insomnia. Still waking every morning @ 3:30 am. SEVERE fatigue. (Cannot go up and down stairs.) Burning sensation in fingers. Pain in feet w/numb toes. Waking up most mornings with bad headaches.. Continued problems w/diarrhea, nausea and stomach problems from Glucovance. Problem with right elbow and arm: swelling and discoloration w/severe pain shooting up and down arm. X-ray negative for fracture. Possibly bursitis. Monitoring blood sugars – still high. Notice small amount of milky discharge from nipples. Increased facial hair, hair on head falling out. | |
| January-February | Evaluation by Dr. #4, neurosurgeon at Emory. MRI shows 9x5x4 pituitary tumor. Wants me to see Dr. #5. Glucovance stopped. Started on Actos, Starlix, Humulin at night. Very high cholesterol - swtiched to 20 mg. Lipitor. Blood sugar improves. Extreme fatigue and dizziness. UFC’s and serum cortisol tests negative. ACTH test is high. Very unhappy with Dr. #5. He only is concerned with diabetes, not other symptoms. Decide to seek another opinion. Daily headaches are worsening. Weirdswelling in right foot with numb toes. | |
| March |
Initial consultation with Dr. #6, Endocrinologist at Center for Medicine, Endocrinology, and Diabetes. (CMED). Initial consultation with Dr. #7, Psychiatrist. Diagnosed with major depression. Start Effexor 150 mg. per day. Start Trazadone for sleep deprivation. Inititial visit to Dr. #8, new PCP. |
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| March-May | Increased lactation and daily migraines. Difficulty walking because feet are numb, especially right foot. Lots of pain in right calf. 1600 calorie diet but no weight loss. Horrible bruising. Fatigue is serious. Medical leave from work | |
| June | Depression much improved. Sleeping better with Trazadone. Still feel bad medically. Return to work. Dr. #6 diagnoses intermittant Cushings and confers with Dr. #4. Petrosal Sinus Sampling is recommended by both doctors. Referred to new endocrinologist at Emory from NIH – a Cushings specialist -. Dr. #9. | |
| June 27 | On vacation in Hilton Head. Horrible migraine sends me to E.R. | |
| July 2 | Flu-like symptoms w/very sore throat. Dr. #8 prescribes Biaxin for 10 days. | |
| July 10 | Throat and ears worse. Glands under jaw very painful. Go back to Dr. #8. Prescribes Augmentin and does blood test for mono and throat culture. (Came back negative; symptoms eventually cleared up.) |
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| July 12 | Initial visit w/Dr. #9. No Petrosal Sampling yet. Wants to perform more tests for Cushings. | |
| July 15 | Severe cramping in right lower leg. Lots of muscle twitching. | |
| July 16 | Afternoon bloodsugar is high. (289) | |
| July 24 | Bloodsugar remains high! Feet and toes numb. | |
| July 29 | Horrible migraine. At N. Fulton Hospital for 6 hours. CT scan shows nothing. | |
| August 1 | Pain in right calf and the muscle keeps “jumping” around. 2nd and 3rd toes on right foot are numb. Blood sugar still high at 300+. | |
| August 3 | BIG IMPROVEMENT IN BLOOD SUGARS! | |
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Diabetes daily meds changed:
Meds for Headaches
Other daily meds: |
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| August 3-4 | PM Salivary Cortisol samples taken; another 24 hour UFC | |
| August 6 | Appointment with Dr. #10, Neurologist is moved to 8/16. | |
| August 7 | Today – Weight 220. I have no neck and I cannot see my feet. It has been almost 9 months since I first heard the term “Cushing’s Disease.” I am trying so hard to get well but sometimes I wonder if I’d be better off dead. | |
| August 10 | Become ill at work. Vomit, pass out. Wake w/severe headache (WHOL) and stiff neck. Rushed by ambulance to Emory University Hospital. Give them Neurosurgeon’s name. Tested for a number of things including pituitary apoplexy: CT, MRI, Lumbar puncture, MRA, blood work – all normal. Cancel 8/14 Dex/CRH test. | |
| August 15 |
Released from
hospital. Head still hurts – dull throb at base of skull., neck still
stiff.. Told to give neurologist all the above info. Follow up with Neurosurgeon in 4 weeks. Need to reschedule Dex/CRH test. Have test but it is performed incorrectly and they tell me I must repeat it but they cannot get me in anytime soon. |
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| August 16 | Initial visit to new neurologist –. Diagnosis: Migraines DUH! He won’t prescribe anything for pain though. | |
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2002 |
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| February 14 | Go back to the neurologist who helped me when I had the ruptured disk. He is convinced that I have Cushing’s and insists that I continue to pursue a diagnosis. | |
| February-March | Still trying to find out what’s wrong with me. Diabetes worsening. Read about a new endocrinologist, Dr. Scott Isaacs, in the Northside Women’s Newsletter. He is giving a talk about cortisol and insulin! I attend this seminar and am thrilled that he knows a lot about this disease. I see him after the presentation and show him my journal and photos. He agrees to see me immediately in his office. | |
| March | See Dr. Scott Isaacs. He believes me! He definitely thinks I have Cushings. He promises that he will help me. More tests. Both 24 hour UFC’s come in high, over 250+. CRH-Dex test is positive. Salivary cortisol is positive. | |
| March | Petrosal Sinus Sampling at Northside is positive. Officially diagnosed with Cushing’s Disease. Dr. Oyesiku at Emory agrees to perform surgery right away. | |
| May 3 | Surgery at Emory. We drive through a horrible thunderstorm at 6:00 am. I am very nervous and scared. I make it through the surgery but experience a bad CSF leak and am in tremendous pain. I’m on a lumbar drain for days. My blood sugar has dropped tremendously but my post-surgery cortisol is still too high. Dr. Oyesiku tells me that he’s afraid the surgery was not successful. He wants to go back in and remove the entire gland. My other option is radiation. I decide to wait and see what happens. | |
| May 9 | Released. I’m an emotional wreck. | |
| May 16 | Bad news. I am running a fever and have fluid leaking from my nose. Readmitted to Emory with CSF leak. Placed back on the lumbar drain for another 5 days. | |
| June-July | Recuperating at home. Feeling pretty good. No headaches. Hump and weight going down. Cortisol is 55. I am optimistic! | |
| August | Back to work at BellSouth but it soon becomes apparent that I cannot get through the day. Headaches start up and I am so tired. Dr. Isaacs wants to give it another few months. I am still losing weight. | |
| September 30 | Last day at BellSouth. Have accepted voluntary management severance package. | |
| October-December | Headaches worsen. My cortisol levels, blood sugar and blood pressure are rising. Have a bad nosebleed for the first time. I experience an episode of breathing difficulty and chest pressure. | |
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2003 |
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| January 6 | Cortisol is 195. Not good. Other blood work shows that growth hormone is deficient. An MRI is scheduled. Started on Ketoconazole to reduce cortisol levels. | |
| January 8 | On my way to MRI when I develop chest pain and have trouble breathing. Tremendous head pain. Dr. Isaacs sees abnormality on EKG and I am rushed to St. Josephs. They rule out a heart attack. I have every test possible; nothing is certain except that I still have Cushings. It is recommended that I have stereotactic radiation therapy asap. | |
| January 29 | Dr. Isaacs refers me to oncologist. | |
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Fractionated Stereotactic Radiation |
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| Mugshot | Mugshot side view |
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| Preparing to calibrate measurements | Locked down on the table |
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| Beam me up, Scotty | Melinda on a really bad hair day |
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