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Posts Tagged ‘Cushings syndrome’

If you have followed my blog you know that I have been married over 30 years. You know that my wife Dianna has Cushing”s Disease and has suffered for well over 25 years. She has had 3 brain surgeries including having Her pituitary gland removed. You know that I have been involved in ministry about the same amount of time and the last 10 years in world missions including taking teams to Africa to help build an orphanage.None of which Dianna has been able to be directly involved.

Dianna under Her endocrinologist absolute warning, has never been across the big pond with me. BUT this year because Her health is so improved She received Her Dr’s blessing to go. It would end up being a short term mission trip with me to the Dominican Republic, yes the other side of the island from Haiti.

So what does that have to do with teaching old dogs new tricks. Well at almost 50 years old you get in a rut, in fact so deep in a rut you have a hard time seeing out. I am that old dog. I am a  bit, no extremely adventurous. I am used to curbing my crazy zeal, only when I have students with me, and act more parental. I can not tell you how  my emotions were rocking trying to balance being safe for Dianna, yet wanting Her to actually experience adventure.

Getting married so young “17 and 16″ ” you fill in the blanks” we did not have the opportunity to have a Honeymoon. We would tie in a couple of days at the end of our Mission adventure, to Marital Bliss in Susua, on the North side of the Island. We had a great time, I was nervous. The life most normal people live meaning, Husbands and Wives just doing what they want, when they want, has never been an option for us. We have always had the restraint of the disease dictating how we live. For the 1st time I felt we, and mostly Dianna was free from its grip. I will share a few pictures with you, of both our mission and Honeymoon. Unless you have lived under the restraints of extreme sickness, you might find this post odd. But for me, I learned a few tricks, and we enjoyed each other in a world we had never shared before.

I am so proud of Dianna for taking a risk and thankful to the Lord for opening a door of Liberty. enjoy the pictures.

jarabacoa falls

jarabacoa falls Dominican Republic

Dianna Gross rides a horse in Jarabacoa

Dianna Gross rides a horse in Jarabacoa

John and Dianna in La Vega

John and Dianna in La Vega

John and Dianna Gross

John and Dianna Gross

Susua Bay , Dominican Republic

Susua Bay , Dominican Republic

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Sub-title : longsuffering the fruit of the Spirit growing in my Wife

Dianna and I were married in 1979 in the mid 1980’s She became very sick. No one could diagnose the Problem but after breaking several bones in Her foot by simply walking up the stairs we went to Dr. Travis in Harrisonville Missouri. He said something very serious was wrong and sent Dianna to a specialist at Research hospital in Kansas City. He diagnosed Dianna with Cushings Syndrome. For Dianna it was basically a small tumor on the pituitary glad. Dianna has now had 3 brain surgeries and a gamma knife surgery. She has had Her pituitary gland removed and now takes more medicine than I can keep track of. Dianna has suffered so much yet keeps trusting God. She truly is inspiring when you have seen Her suffer like I have over the many years.

Below you will see a progression of the effects of Cushings Syndrome in the photographs of my wife Dianna. The first picture was taken in 1978 the year before we were married the next photo was taken about the time of Her first brain surgery. On the far right is how She appears today at 45 years old and a very hard life. Looking great after all that WOW.

Dianna Gross a progressive picture of the effects of Cushings Disease aka Cushings Syndrome

Progression of Cushing’s Syndrome

Update : Dianna soon to turn 50 and going strong

Below is a picture of Dianna about to receive Gamma Knife radiation. She had already had two brain surgeries one entry point through the nose and the second cutting under the upper lip going to the pituitary gland to remove a pea size tumor that coming back. After the gamma knife in 2000 She had Her pituitary removed. Thank God for giving Dianna grace to suffer long “longsuffering” She is amazing.

Dianna Gross just before Gamma Knife procedure

Dianna Gross having Gamma Knife

UPDATE: Dianna has continued to have problems related to Cushings and after years of Her Endocrinologist advising to have Her Adrenal glands removed it has happened. She is 2 weeks recovered from Surgery and though very sore feels more normal than She has been for 30 years. OF course it is now a life of hormone replacements BUT, She is now in control not the unknown circumstances.  Once She recovers a bit I will have her add Her thoughts to this. What led to this was several very close calls to the emergency room after ATCH crash’s.  Praise The Lord for keeping Her going all these years.

The followings facts I got from this web site much more can be found there plus great support.

http://www.csrf.net/index.htm

  • Cushing’s syndrome is a hormonal disorder caused by prolonged exposure of the body’s tissues to high levels of the hormone cortisol. Sometimes called “hypercortisolism,” it is relatively rare and most commonly affects adults aged 20 to 50. An estimated 10 to 15 of every million people are affected each year.
  • Cushing’s syndrome occurs when the body’s tissues are exposed to excessive levels of cortisol for long periods of time. Many people suffer the symptoms of Cushing’s syndrome because they take glucocorticoid hormones such as prednisone for asthma, rheumatoid arthritis, lupus and other inflammatory diseases, or for immunosuppression after transplantation.
    Others develop Cushing’s syndrome because of overproduction of cortisol by the body. Normally, the production of cortisol follows a precise chain of events. First, the hypothalamus, a part of the brain which is about the size of a small sugar cube, sends corticotropin releasing hormone (CRH) to the pituitary gland. CRH causes the pituitary to secrete ACTH (adrenocorticotropin), a hormone that stimulates the adrenal glands. When the adrenals, which are located just above the kidneys, receive the ACTH, they respond by releasing cortisol into the bloodstream.
    Cortisol performs vital tasks in the body. It helps maintain blood pressure and cardiovascular function, reduces the immune system’s inflammatory response, balances the effects of insulin in breaking down sugar for energy, and regulates the metabolism of proteins, carbohydrates, and fats. One of cortisol’s most important jobs is to help the body respond to stress. For this reason, women in their last 3 months of pregnancy and highly trained athletes normally have high levels of the hormone. People suffering from depression, alcoholism, malnutrition and panic disorders also have increased cortisol levels.When the amount of cortisol in the blood is adequate, the hypothalamus and pituitary release less CRH and ACTH. This ensures that the amount of cortisol released by the adrenal glands is precisely balanced to meet the body’s daily needs. However, if something goes wrong with the adrenals or their regulating switches in the pituitary gland or the hypothalamus, cortisol production can go awry.
  • Diagnosis is based on a review of the patient’s medical history, physical examination and laboratory tests. Often x-ray exams of the adrenal or pituitary glands are useful for locating tumors. These tests help to determine if excess levels of cortisol are present and why.

    24-Hour UrinaryFree Cortisol Level
    This is the most specific diagnostic test. The patient’s urine is collected over a 24-hour period and tested for the amount of cortisol. Levels higher than 50-100 micrograms a day for an adult suggest Cushing’s syndrome. The normal upper limit varies in different laboratories, depending on which measurement technique is used.

    Once Cushing’s syndrome has been diagnosed, other tests are used to find the exact location of the abnormality that leads to excess cortisol production. The choice of test depends, in part, on the preference of the endocrinologist or the center where the test is performed.

    Treatment depends on the specific reason for cortisol excess and may include surgery, radiation, chemotherapy or the use of cortisol-inhibiting drugs. If the cause is long-term use of glucocorticoid hormones to treat another disorder, the doctor will gradually reduce the dosage to the lowest dose adequate for control of that disorder. Once control is established, the daily dose of glucocorticoid hormones may be doubled and given on alternate days to lessen side effects.

    Pituitary Adenomas
    Several therapies are available to treat the ACTH-secreting pituitary adenomas of Cushing’s disease. The most widely used treatment is surgical removal of the tumor, known as transsphenoidal adenomectomy. Using a special microscope and very fine instruments, the surgeon approaches the pituitary gland through a nostril or an opening made below the upper lip. Because this is an extremely delicate procedure, patients are often referred to centers specializing in this type of surgery. The success, or cure, rate of this procedure is over 80 percent when performed by a surgeon with extensive experience. If surgery fails, or only produces a temporary cure, surgery can be repeated, often with good results. After curative pituitary surgery, the production of ACTH drops two levels below normal. This is a natural, but temporary, drop in ACTH production, and patients are given a synthetic form of cortisol (such as hydrocortisone or prednisone). Most patients can stop this replacement therapy in less than a year.

    For patients in whom transsphenoidal surgery has failed or who are not suitable candidates for surgery, radiotherapy is another possible treatment. Radiation to the pituitary gland is given over a 6-week period, with improvement occurring in 40 to 50 percent of adults and up to 80 percent of children. It may take several months or years before patients feel better from radiation treatment alone. However, the combination of radiation and the drug mitotane (Lysodren®) can help speed recovery. Mitotane suppresses cortisol production and lowers plasma and urine hormone levels. Treatment with mitotane alone can be successful in 30 to 40 percent of patients. Other drugs used alone or in combination to control the production of excess cortisol are aminoglutethimide, metyrapone, trilostane and ketoconazole. Each has its own side effects that doctors consider when prescribing therapy for individual patients.

    Ectopic ACTH Syndrome
    To cure the overproduction of cortisol caused by ectopic ACTH syndrome, it is necessary to eliminate all of the cancerous tissue that is secreting ACTH. The choice of cancer treatment–surgery, radiotherapy, chemotherapy, immunotherapy, or a combination of these treatments–depends on the type of cancer and how far it has spread. Since ACTH-secreting tumors (for example, small cell lung cancer) may be very small or widespread at the time of diagnosis, cortisol-inhibiting drugs, like mitotane, are an important part of treatment. In some cases, if pituitary surgery is not successful, surgical removal of the adrenal glands (bilateral adrenalectomy) may take the place of drug therapy.

    Adrenal Tumors
    Surgery is the mainstay of treatment for benign as well as cancerous tumors of the adrenal glands. In Primary Pigmented Micronodular Adrenal Disease and the familial Carney’s complex, surgical removal of the adrenal glands is required.

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