Saturday, November 23, 2013

Finding out I have Cushing's Disease & a brain tumor...



I have debated back & forth whether I wanted to share 

this news with  everyone. I decided sharing = more prayers

So join me on my journey: Cushing's Disease/Pituitary Tumor

For the past 2 1/2 months I have been undergoing many, many test. As some of you reading this know that I stay sick all the time & have for years, but it has been getting progressively worse. After many, many test I found out I have Cushing's. Then they had to determine the cause. Well last week I got a call from the nurse. I have Cushing's Disease, due to a tumor in my brain on my pituitary. Thankfully most of them are usually benign, & that is what we are praying. Now I will get a MRI on Tuesday, November 26,2013, to find out the size. My doctor told me he will be sending me to a specialist at  UAB in Birmingham for surgery, if surgery is possible. I to ask each of you to pray for  my family & I during this time. My family, especially my mom, is having a hard time with this since finding out I have the kind cause by a brain tumor. I'm handling it better than my family, since I was preparing myself for this news due to the symptoms I have been having with my memory problems  & trouble functioning with even everyday things. So I've been preparing myself with lots of prayer & Bible study. I know God is in control. We just have to trust him, pray & leave it to him. Not to say I don't have my moments, I am human,but mostly I'm handling it pretty well.  My family I would appreciate your prayers for us  & the doctors. Thank you so much!

You may be asking, "What exactly is Cushing's Disease?"

Cushing’s disease is a condition in which the pituitary gland releases too much adrenocorticotropic hormone (ACTH). The pituitary gland is an organ of the endocrine system.
Cushing's disease is a form of Cushing syndrome.

Causes:

Cushing's disease is caused by a tumor of the pituitary gland. This gland is located at the base of the brain. People with Cushing's disease have too much ACTH. ACTH stimulates the production and release of cortisol, a stress hormone. Too much ACTH means too much cortisol. Cortisol is normally released during stressful situations. It controls the body's use of carbohydrates, fats, and proteins and also helps reduce the immune system's response to swelling (inflammation).

Symptoms:


  • Headaches, Migraines 
  • Vision/Eye problems
  • Increased thirst and urination
  • Hypertension,
  • Diabetes
  • Heart problems 
  • Infections, increased risk due to impaired immune defense mechanisms
  • Kidney stones
  • Impaired Cognitive Abilities (problems with memory, trouble remembering things that happened, trouble recalling and saying words, trouble describing things)
  • Mental changes, such as depression, anxiety, and/or changes in behavior
  • Psychosis
  • Fatigue/Insomnia
  • Backache, which occurs with even routine activities
  • joint pain and/or tenderness
  • Bone pain and/or tenderness
  • Muscle pain, muscle weakness and/or tenderness
  • Bone wasting leading to osteoporosis (possibly leading to fractures)
  •  Compression fractures
  • Collection of fat between the shoulders (buffalo hump)
  • Thinning of the bones, which can lead to rib and spine fractures
  • Upper body obesity (above the waist) and thin arms and legs
  • Round, red, full face (moon face)
  • Acne or skin infections
  • Purple marks, striae, on parts of the skin
  • Thin skin with easy bruising, drying
  • Excessive sweating
  • Excess hair growth on the face, neck, chest, abdomen, and thighs
  • Thinning hair (like male pattern baldness)
  • Menstrual cycle that becomes irregular or stops 

Exams and Tests:

Tests are done to confirm there is too much cortisol in the body, then to determine the cause.

These tests confirm too much cortisol:
  • 24-hour urine cortisol (done)
  • Dexamethasone suppression test (low dose) (done)
These tests determine cause:
  • Blood ACTH level  (done)
  • Brain MRI (scheduled for 11/26/13) - to determine size & exact location on the pituitary
  • Corticotropin-releasing hormone test, which acts on the pituitary gland to cause the release of ACTH  (done)
  • Dexamethasone suppression test (high dose)  (done)
  • Petrosal sinus sampling - measures ACTH levels in the veins that drain the pituitary gland (really praying we don't have to do this test... ouch!)

Treatment:

Treatment involves surgery to remove the pituitary tumor, if possible. After surgery, the pituitary may slowly start to work again and return to normal. During the recovery process, you may need cortisol replacement treatments. Radiation treatment of the pituitary gland may also be used. If the tumor does not respond to surgery or radiation, you may get medications to stop your body from making cortisol. If these treatments are not successful, the adrenal glands may need to be removed to stop the high levels of cortisol from being produced.
 
Transsphenoidal surgery is the first line treatment of Cushing’s disease. It allows remission in 60-90% of microadenomas, and 50-70% of macroadenomas, depending on local invasion and the experience of the neurosurgeon. Remission should be defined by normal ACTH and cortisol circadian rhythms, and suppressed cortisol value after overnight/low dose dexamethasone suppression test.
The risk of late recurrence after presumably curative surgery is estimated to be close to 25%. Several criteria have been reported as predictive factors for long-term remission: low immediate post-surgical early morning cortisol/ACTH levels, cortisol suppression after 1 mg overnight dexamethasone suppression test, lack of cortisol/ACTH response to desmopressin or coupled dexamethasone desmopressin test. However, it is still difficult to predict which patients are at greater risk of recurrence, as some patients uncured immediately after surgery, might however present delayed remission. As a consequence, and due to the high risk of recurrence, it seems difficult to talk about “cure” in patients with surgically treated Cushing’s disease; the term “remission” seems more appropriate. In other words, even long-term remission after surgery should lead to at least a prolonged clinical close follow-up. In case of immediate surgical failure or late recurrence, several therapeutic modalities are available: second pituitary surgery, medical treatments, radiation techniques, or bilateral adrenalectomy. Only some of these treatments (surgery, and radiation techniques after a prolonged period) can lead to long-term remission.

Outlook (Prognosis):

If untreated, Cushing's disease can cause severe illness, even death. Removal of the tumor may lead to full remission, but the tumor can grow back.




2 comments:

  1. We will be praying for all of you! God is faithful and He will be with you every step of this journey as you lean and cling to Him!

    ReplyDelete
    Replies
    1. Thank you, Amy so much! I appreciate your prayers

      Delete