Sunday, May 17, 2009

FAQ's




Q: What is Cushing’s?

A: In simple terms, people with Cushing’s have a problem with their bodies not being able to control the level of hormones being released. This hormone is called cortisol. If the body releases too much of this hormone then the body goes haywire and begins to do strange things such as gaining weight and being more susceptive to infections.

Q: What causes Cushing’s?

A: The most common cause of Cushing’s is tumors either in the pituitary gland (brain) or on the adrenal glands (just above the kidneys). The tumors do either of two things. They either produce too much of the hormone ACTH, which triggers the cortisol, or the tumors produce too much of the cortisol. Another way someone can inherit Cushing’s is from steroids hospitals give to patients to treat certain problems.

Q: How is the diagnosis of Cushing’s done?

A: The diagnosis of Cushing’s is one heck of a journey. There are so many tests people have to go through to be sure that what you have is Cushing’s. Some tests include measuring cortisol levels in the urine, blood, saliva, etc. Other tests include head MRI’s, dexamethasone suppression testing and CRH stimulation. The worst test of them all is the petrosal sampling. This is normally only done if the tumor is too small to be seen by an MRI. This procedure involves measuring the amount of ACTH that is in the blood draining from the pituitary gland. They take small catheters and slide them through the veins on the inside of the legs all the way up to the small veins around the pituitary gland.

Q: How is Cushing’s treated?

A: The best way to treat Cushing’s is through surgery. It is a brain surgery so it would require the doctor to be specialized in Cushing’s so they know what they are looking for.

Q: How is the surgery done?

A: The surgery is most commonly done transsphenoidally, which is going up through the nasal passages.

Q: How can I choose a surgeon to remove a tumor on the pituitary?

A: Experience, experience, experience!! The best surgeon’s are those that have performed these types of surgeries before. Not to say that if a doctor doesn’t have experience that they’re not good but the more experience the better.

Q: What is risky about these surgeries?

A: The most common risk is damaging the pituitary gland. Since the surgeon might have to dissect the pituitary gland it could cause hormone insufficiency which means that the patient would have to take pills to regulate their hormones for the rest of the patient’s life.

Q: How will patients feel after surgery?

A: There will be sinus headaches and nasal congestion. After surgery Cushing’s patients are normally fatigued for the first couple of weeks then gradually gain their strength back. Once the tumor is removed the patients usually then suffer from hypoadrenalism, which is the opposite of Cushing’s, lack of cortisol in the body. The lack of cortisol may cause symptoms such as poor appetite, weight loss, headache, nausea, low energy, and weakness. To compensate for this problem patients take cortisol replacement pills a few times a day until their pituitary gland can recover and control the output of cortisol.

Q: How will the patients know if the tumor is fully removed?

A: The endocrinologist will run tests and check cortisol level to see if the body has control over itself.

Q: What are the chances of being cured?

A: There is an 80-90% chance that a patient will be cured if the operation was performed by an expert.

Q: What if the patient isn’t cured?

A: If the patient isn’t cured after the first operation the patient can receive another operation but there is a greater chance of damaging the pituitary gland even more and having a higher likelihood of needing to take the cortisol pills for a longer period of time. If there is no tumor remaining the patient is referred for radiation therapy. This could take up to 2 years to be cured. In some cases both adrenals glands can be removed.

Q: What are the chances that Cushing’s will come back?

A: The chance of getting Cushing’s again is between 5-10%.

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