Sue had Cushings for approximately fifteen years. She diagnosed herself with the help of a nurse friend and a book. Read Sue's bio.
Sue's interview was interesting, funny, informative. She has an adrenal tumor that she hopes will be removed soon. She'll be going to the NIH on the 31st.
This interview is also available as a podcast on iTunes at http://itunes.apple.com/podcast/cushingshelp-cushie-chats/id350591438
Sue's interview was interesting, funny, informative. She has an adrenal tumor that she hopes will be removed soon. She'll be going to the NIH on the 31st.
This interview is also available as a podcast on iTunes at http://itunes.apple.com/podcast/cushingshelp-cushie-chats/id350591438
Sue writes in her bio:
Hello again.
I haven't visited this site for a long time. Two years ago a beautiful girl from the west coast of Florida found me on here. I thank God for her .Although we have never met, she is like a sister to me. We laugh and cry together every day. I plan on visiting her this month. I have had Cushings for approximatly fifteen years. I diagnosed myself with the help of a nurse friend of mine and a book. I think my predominant emotion is anger. I know it is a rare disease, but good grief even some of the endos I have seen must have fallen alseep in class that day!! I've been through "you have the fat gene" to E.R. physicians thinking I am a pain pill addict. I watch my wieght...go up!! lol and I am in pain evry day. I have severe osteoporosis, frequent PID, walking pnuemonia,chronic bronchitis,mercer staff, hair growth, you name it.Irritabvle bowek syndrome and my vision had deteriorated rapidly. I am 47 years this July and the psychological effects of Cushings have been the worst. You can put a bandade on woulnds that won't heal, but there isn't a pill that can take away all the depression and anxiety or mood swings. There isn't enough Red Bull to not fall asleep after being up over 72 hours and finally there isn't a doctor I really trust anymore.
I am headed to the National Instsitute of Health this month to undergo tests. I will be thier guinea pig for a week. I just had my hearing for Sociual Security Disability and that was hell. Life in America is so much easier when you have insurance. I hope that the NIH will recommend the surgery I need to get well again. I have a left adrenal tumor that is growing.
I am a Pastor and I pray every day and night to be healed. So far no luck!! lol Jesus will guide my surgeons hand..won't he?
Sue will be interviewed in the Cushings Help Radio Show on July 27 at 5:00 PM eastern.
The Call-In number for questions or comments is (646) 200-0162.
Master Of The Endocrines
The pituitary, which is located at the base of the brain, is considered the master gland because it controls the other endocrine glands and produces a number of hormones that stimulate growth, metabolic or sexual functions.
Much is now known about this tiny organ, but three doctors at Yale University School of Medicine broke new ground more than 60 years ago by being the first to isolate a pituitary hormone in pure form.
On this date in 1937, Drs. Abraham White, Hubert Catchpole and Cyril Long announced their findings in the journal Science. Researchers have since isolated nine hormones in three sections of the pituitary.
From http://www.intelihealth.com/IH/ihtIH/WSIHW000/333/7087/1339844.html
It's unbelievable but the idea for Cushing's Help and Support arrived 11 years ago tonight. I was talking with my dear friend Alice, who runs a wonderful menopause site called Power Surge, wondering why there weren't many support groups online (OR off!) for Cushing's and I wondered if I could start one myself and we decided that I could.
The first website (http://www.cushings-help.com) first went "live" July 21, 2000 and the message boards September 30, 2000. Hopefully, with these sites, I'm going to make some helpful differences in someone else's life!The message boards are very active and we have weekly online text chats, weekly live interviews, local meetings, email newsletters, a clothing exchange, a Cushing's Awareness Day Forum, podcasts, Wiki, phone support and much more.Whenever one of the members of the boards gets into NIH, I try to go to visit them there. Other board members participate in the "Cushie Helper" program where they support others with one-on-one support, doctor/hospital visits, transportation issues and more.
Dave deBronkart
Dave deBronkart wants to help patients help themselves -- by owning their medical data, connecting to fellow patients and making medical care better.
When Dave deBronkart learned he had a rare and terminal cancer (MaryO'Note: kidney cancer), he turned to a group of fellow patients online -- and found the medical treatment that saved his life. Now he calls on all patients to talk with one another, know their own health data, and make health care better one e-Patient at a time.
With the help of the GMA Kapuso Foundation, unusually overweight Evelyn Sambrano who is suffering from Cushing's Syndrome, has been brought from Bataan to Manila to receive hospital treatment.
GMA's Cesar Apolinario reported that Sambrano, who was too large for a stretcher, had to be carried by her neighbors using a thick blanket. Cuhsing's Syndrome is caused by exposure to high levels of cortisol, a hormone produced by the adrenal gland. Cortisol is known as the "stress hormone" because it is released in response to stress. One of its primary functions is to aid in fat, protein and carbohydrate metabolism.In Sambrano's case, a tumor in her pituitary gland causes an imbalance in her hormone levels, which results in her continuous growth even though she does not overeat."Nagpapasalamat po ako nang marami at sa lahat ng taong tumutulong po sa akin, at sa mga tutulong po sa akin nagpapasalamat na rin po ako sa inyong lahat," she said through tears.
For the latest Philippine news stories and videos, visit GMANews.TV
Multi-step treatmentKapuso Foundation executive vice president Mel Tiangco told Sambrano that the treatment would involve various steps."Kasi kahit pumayat ka, halimbawa na gamot na yung ano mo, syempre yung skin mo babagsak. Excess skin lahat yan pag natanggal yan. Cosmetic surgeon naman ang susunod diyan," said Tiangco."Kailangan matuon natin yung cost, so if she needs an MRI, at siguro mga blood tests natin for cortisol levels para ma-adress natin yung pagiging overweight. We need to do that step by step," said Manila Doctors Hospital Endocrinoligist Dr. Roberto Mirasol.GratefulSambrano's mother Iluminada also expressed her gratitude, saying they could not afford the treatment on their own."Ako ay talagang awang awa po diyan...maraming maraming salamat naman sa tulong sa aking anak. Talagang wala ho kaming pera," she said.Hermosa Vice-Mayor Cris Vitug said,"Natutuwa din ako sa GMA Foundation...sa pamamagitan ninyo yung problema ni Belen (Evelyn's nickname) masosolusyonan na kahit papano."— VVP, GMA News
Pituitary Adenoma
Located at the base of the skull, the pituitary gland serves as the body’s control center for hormones. Pituitary adenomas are slow growing, benign tumors within the gland.
Patients are diagnosed with an MRI scan and an endocrinological evaluation that determines whether hormone levels have been affected by the tumor. If the tumor is large, a visual evaluation may be needed as well.
Small tumors less than 1 centimeter are called microadenomas, while tumors larger than 1 centimeter are macroadenomas. Pituitary tumors are also divided into functioning and nonfunctioning varieties. As the terms imply, functioning tumors produce hormones, though often in large, unregulated amounts. Nonfunctioning tumors don’t produce significant amounts of hormones.
What are the symptoms?
Symptoms of pituitary adenomas depend on the type of hormone production affected by the tumor.
A tumor that produces large amounts of ACTH causes a condition known as Cushing Disease, which leads to obesity, high blood pressure, and muscle weakness, among other symptoms. A prolactinoma produces large amounts of prolactin. Symptoms include irregular menstruation, sexual dysfunction and breast discharge. A growth-hormone producing tumor leads to acromegaly, a condition that causes progressive enlargement of hands and feet as well as altered facial features.
A nonfunctioning adenoma leads to problems by compressing the pituitary gland and decreases or even cuts off normal hormone production.
Large tumors also can affect the optic nerves leading to a form of tunnel vision called bitemporal hemianopsia. In some cases, a pituitary adenoma causes headaches or a sensation of pressure or fullness behind the eyes. Rarely, bleeding into a tumor can lead to severe headaches, along with double and blurred vision.
What are the treatment options?
Surgery
Medication can help correct hormone production with pituitary adenomas, though the gold-standard treatment is surgical removal. Doctors remove, or resect, as much of the tumor as safely as possible to eliminate pressure on the optic structures and remove parts of the tumor affecting hormone production.
Most pituitary surgeries don’t involve cutting into the skull. Surgeons access the gland through the sphenoid sinus, an air-filled space behind the nose, in a procedure known as transsphenoidal surgery. An incision is made either under the patient’s lip or inside the nose. A variation of the surgery using endoscopic assistance is even less invasive.
The major risk of transsphenoidal surgery is injury to the carotid arteries, to nearby tissues that affect vision or to healthy pituitary tissues that are often indistinguishable from the tumor. If the pituitary gland doesn’t function properly after surgery, the patient may require life-long hormone replacement.
Not all pituitary tumors require treatment. Sometimes a microadenoma is found on an MRI scan performed for other reasons. In such cases, a period of observation may be recommended. Treatment may be needed only when the microadenoma enlarges over time.
Radiation therapy
If the entire tumor can’t be removed surgically, radiation treatment may be needed to prevent its growth. Radiation may be an option for patients who are medically unable to undergo surgery or who oppose surgery.
Conventional radiation therapy uses a comparatively small number of radiation beams on the entire region around the pituitary gland, which usually results in a significant amount of normal, healthy tissue being irradiated as well. To compensate, conventional radiation treatment is given in daily doses over several weeks. The technique is generally effective in preventing tumor growth and in correcting hormone-producing tumors for many years.
Radiation therapy usually results in lower hormone production. Therefore, even if a pituitary adenoma doesn’t affect the patient’s hormone production, treatment with conventional radiation therapy can cause abnormally low hormone levels. In treating adenomas, conventional radiation therapy also irradiates nearby parts of optic tissues, though the risks of impaired vision are usually low.
Stereotactic radiosurgery
A newer option for treating pituitary adenomas, radiosurgery focuses radiation on the tumor only, minimizing exposure to other tissues. Emerging data indicates radiosurgery may be more effective than conventional radiation in lowering abnormal hormone production and does so over a shorter time period.
Most radiosurgery techniques are one-time treatments, which increases the risk of some side effects, including vision loss. The risk of radiation injury is greater for patients when the tumor is close to or involves nearby optic tissues or part of the brain known as the hypothalamus. For higher-risk patients, staged, or fractionated, treatments may reduce the risk of injuring other tissues.
How effective is CyberKnife treatment?
Treating pituitary adenomas with the CyberKnife combines the advantages of conventional radiation and radiosurgery. Since CyberKnife performs radiosurgery, radiation exposure is limited to the adenoma. CyberKnife treatment can be fractionated, however, like conventional radiation therapy.
This approach lessens the radiation risk to sensitive structures around the tumor, like optic tissues and part of the brain known as the hypothalamus. CyberKnife fractionated stereotactic radiosurgery is also well suited for treating adenomas that invade the cavernous sinus, which contains nerves that control eye movement and facial sensation.
CyberKnife works best with:
From http://www.chicagock.com/conditions-treated/brain-tumors/pituitary-adenoma/
We have been getting spammers lately, so changes have had to be made. Anonymous editing is no longer possible. Even signing up for an account on the CushieWiki isn't enough to keep the spam folks at bay, so... if you want to post/edit/create, you'll need to get permission first.
To do so, send a PM to MaryO through the message boards, send a note through the Contact Us page or send a message through FaceBook.
I am sorry for all the annoyances that these spam folks make us go through.
