MaryO
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Status Updates posted by MaryO
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I was so very sorry to hear of Shianne’s passing last week. She was one of the reasons I continue to fight this demon of a disease.Being 100% honest here, these past 2 weeks have been the worst for me yet and I have contemplated on more than one night to just be done. But for some reason, Shianne’s death made me realize I need to honor her by fighting and hard!..
In the comments area at https://cushingsbios.com/2018/04/01/in-memory-shianne-lombard-treman-march-28-2018/
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I'm having to rebuild the Cushing's Member Map from old info and the newer bios that are coming in. Find the new MemberMap here
Add your information - or your doctor's - at https://cushingsbios.com/2018/10/28/we-have-a-new-bio-form/
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I think I'm nearly half done with the rebuild
New entries always welcome!
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I’ll never know if that hit on my head contributed to my Cushing's but I have seen several people mention on the message boards that they had a traumatic head injury of some type in their earlier lives.
Read more at https://cushieblogger.com/2018/04/25/day-25-cushings-awareness-challenge-2018/
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I’m in Indiana as well and undergoing testing now to confirm Cushing’s but I’m not impressed with the Endo my family doctor referred me to....
In the comments area of https://cushingsbios.com/2018/01/20/stacy-b-pituitary-adrenal-bio/
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I’m wondering if anyone post surgery is dealing with PTSD, specifically feeling like you are re-experiencing Cushings when you are having anxiety. I’m almost 3 years post surgery and have regular panic attacks where I feel like I am re-living having the disease
Please either respond here or in the comments at https://cushieblogger.com/2018/05/11/guest-question-ptsd-and-cushings/
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If you believe you have Cushing's (or any other rare disease), learn what you can about it, connect with other patients, make a timeline of symptoms and photographs. Read, take notes, save all your doctors notes, keep your lab findings, get second/third/ten or more opinions. Make a calendar showing which days you had what symptoms. Google calendars are great for this.
Read more at https://cushieblogger.com/2018/04/03/day-3-cushings-awareness-challenge-2018/
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Image-guided (navigation-assisted) endoscopic trans-nasal trans-sphenoidal pituitary surgery is what we are about to view being performed in the country (Sri Lanka) only since October this year. For, the 38-year-old patient lying inert on the operating table has a tumour just above her pituitary gland, between the optic nerves and the carotid arteries, making it a difficult operation-site to access. (The pea-size pituitary gland is dubbed the ‘master gland’ as it produces many hormones for the whole body, while also stimulating other glands to produce other hormones.)
Read more at https://cushieblog.com/2016/12/21/into-the-brain-through-the-nostrils-sri-lanka/
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In 1986 I was finally diagnosed with Cushing's after struggling with doctors and trying to get them to test for about 5 years. I was going to go into the NIH (National Institutes of Health) in Bethesda, MD for final testing and then-experimental pituitary surgery.
I was terrified and sure that I wouldn’t survive the surgery...Read more at https://cushieblogger.com/2018/04/22/day-22-cushings-awareness-challenge-2018/
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In 2006, I flew to Chicago, IL for a Cushing's weekend in Rockford. Someone else drove us to Lake Geneva, Wisconsin for the day. Too much travel, too Cushie, whatever, I was too tired to stay awake. I actually had put my head down on the dining room table and fallen asleep but our hostess suggested the sofa instead. Amazing that I traveled that whole distance – and missed the main event😦
Read more at https://cushieblogger.com/2019/04/05/day-5-cushings-awareness-challenge-2019/
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In 2006, I flew to Chicago, IL for a Cushing's weekend in Rockford. Someone else drove us to Lake Geneva, Wisconsin for the day. Too much travel, too Cushie, whatever, I was too tired to stay awake. I actually had put my head down on the dining room table and fallen asleep but our hostess suggested the sofa instead. Amazing that I traveled that whole distance – and missed the main event😦
Read more at https://cushieblogger.com/2018/04/05/day-5-cushings-awareness-challenge-2018/
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In addition to Addison’s disease, Emily has been diagnosed with congenital Adrenal Hyperplasia, Central Precocious Puberty, Autism Spectrum Disorder, Sensory Processing disorder and Anxiety Disorder.
The 5-year-old’s adrenal glands don’t produce enough steroid hormones.
Read more at https://cushingsbios.com/2017/10/12/addisons-disease-periods-at-4-years-menopause-at-5/
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In case you haven’t guessed it, my cause seems to be Cushing's Awareness. I never really decided to devote a good portion of my life to Cushing's, it just fell into my lap, so to speak – or my laptop..
Read more at https://cushieblogger.com/2018/04/19/day-19-cushings-awareness-challenge-2018/
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In children and adults with Cushing’s syndrome, the relationship between increased cortisol levels and higher blood pressure has also been reported. Patients with Cushing’s syndrome may remain hypertensive even after surgery to lower their cortisol levels, suggesting their hypertension is caused by changes in blood vessels.
Read more at https://cushieblog.com/2018/04/25/blood-lipid-levels-linked-to-high-blood-pressure-in-cushings-disease-patients/
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In Europe, nearly 20 percent of patients with Cushing’s syndrome receive some sort of medication for the disease before undergoing surgery, a new study shows.
Six months after surgery, these patients had remission and mortality rates similar to those who received surgery as a first-line treatment, despite having worse disease manifestations when the study began. However, preoperative medication may limit doctors’ ability to determine the immediate success of surgery, researchers said.
Read more at https://cushieblog.com/2018/02/26/benefits-of-medication-before-surgery-for-cushings-syndrome-still-unclear/
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In Memory ~ Martha, 10/14/2008
StaceyH wrote: Dr. F had wanted to give Martha an IPSS, but she had a problem with an EKG two weeks ago so the doctor would not release her for surgery. She went for a cardio stress test last week and was to get her results tomorrow. She was feeling “ok” but when I arrived home this evening, I found her in the bathroom. I tried to give her CPR but I really knew it was too late...
Read more at https://cushingsbios.com/2015/10/14/in-memory-martha-october-14-2008/
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In patients with a diagnosis of Cushing disease in whom magnetic resonance imaging (MRI) shows either no abnormalities or nonspecific abnormalities, surgery is preferable to medical treatment...There is a consensus that the first line of treatment for Cushing disease is transsphenoidal surgery to remove the pituitary adenoma causing the disease, with an 80% remission rate following the intervention. However, in the absence of clear evidence of a pituitary adenoma on imaging, there is some controversy regarding the best treatment.
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In rare cases, Cushing’s syndrome may be caused by cortisol-secreting masses in both adrenal glands, a case report shows.
Read more at https://cushieblog.com/2018/05/04/cushings-patient-exhibits-cortisol-secreting-lesions-in-both-adrenal-glands/
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In the fall of 2002 my endo refused to discuss my fatigue or anything at all with me until I lost 10 pounds. He said I wasn’t worth treating in my overweight condition and that I was setting myself up for a heart attack. He gave me 3 months to lose this weight. Those 3 months included Thanksgiving, Christmas and New Years. Needless to say, I left his office in tears, again.
Read more at https://cushieblogger.com/2018/04/10/day-10-cushings-awareness-challenge-2018/
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In the media: Sharmyn had pituitary Cushing's and is in remission. This is a compilation of some of her interviews and videos.
Read more at https://cushingsbios.com/2019/03/16/sharmyn-in-the-media/
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Increases in cortisol secretion, even if mild, induce early heart and blood vessel changes that may increase the risk for cardiovascular disease, according to Italian researchers.
The findings continue to support the role of the hormone cortisol in heart disease, and demonstrate the need for carefully monitoring cardiovascular risk in patients with high levels of the hormone, including those with Cushing’s disease...
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Interview Archive: JenS discussed Bilateral Adrenalectomy (BLA)
Jen had Pituitary surgery by Dr. Shahinian 4/28/04, removed ACTH secreting corticotroph hyperplasia and prolactinoma.
Read more at https://cushieblogger.com/2018/04/09/interview-archive-jens-discussed-bilateral-adrenalectomy-bla/
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Interview with Alicia, a Cushing’s Message Board member who is still testing. Alicia writes “Around the end of my Junior year, probably one of the worst things that could have happened during my 8 years of illness happened, I had severe psychiatric symptoms at school, including psychosis, and was put on a “students in crisis” plan and sent home for a little while. Being diagnosed as a “psych patient” would delay my diagnosis for years, most doctors just considered me “crazy.”
Read more at https://cushieblogger.com/2018/04/05/interview-archive-with-alicia-a-patient-who-is-still-testing/
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Interview with Judy, the mother of two Cushing’s patients, and her daughter, Jess, a high school student with Cushing’s. Robin (staticnrg) hosted.
Read more at https://cushieblogger.com/2018/04/03/interview-archive-with-judy-mom-to-2-cushings-patients-and-her-daughter-jess/
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It’s Harvey’s Birthday!
Harvey Cushing (1869-1939) is considered to be the father of modern neurological surgery. In the early part of the 20th century, he developed basic techniques and instruments for operating on the brain and, as a result, founded the discipline as a distinct surgical speciality. Before Cushing began his career, brain tumours were considered to be inoperable, and the mortality rate for any surgical procedure which involved opening the skull was around 90%. Early in his career, Cushing dramatically reduced the mortality rate for neurosurgery to less than 10%, and by the time of his retirement in 1937, he had successfully removed more than 2,000 tumours.
Read more at https://cushieblogger.com/2019/04/08/happy-birthday-harvey-2/ -
Jackie (samsmom) & Jordan: Cushing’s in young people, the fight to diagnose, the amazing gift of a GOOD endocrinologist. Jackie has appeared on Discovery Health discussing her fight for a cure for her younger daughter, as well. Later, the gene responsible for Sam’s illness was found. Her father carried the gene as did her two sisters. Jordan, Jackie’s oldest daughter, has recently had her adrenals removed.
Listen at http://www.blogtalkradio.com/cushingshelp/2008/05/15/interview-with-jackie-samsmon-jordan
