Posted 28 February 2008 - 11:50 PM
Jen's outline of what she plans to talk about:
Bilateral Adrenalectomy
- option after pituitary surgery has failed but has been a treatment in place of pituitary surgery.
- option in place of pituitary surgery
- Can be unilateral in case of adrenal tumor.
- risk of Nelson’s Syndrome
- (Nelson’s Syndrome is characterized by high ACTH , usually over 1000, dark skin and growth of pituitary lesion)
- Generally two types of adrenalectomies
- OPEN 10-12 inch incison on each side
- Laprascopic – number of incisions varies by surgeon – can be 6, 8 12, abdominal area is inflated with inert gas so surgeon has room to move, and adrenals are removed via small instruments.
- Walking after the surgery will help alleviate the pain and dissapate the gas.
- During surgery, patient is given 100mg of solu-cortef or solu-medrol.
- Post-op, one has adrenal insuffiency.
- Adrenals controls salt regulation so increasing that in the diet helps
- The following information is general information – please follow your doctor’s instructions. Doctors have different preferences on replacement hormones.
- After surgery one must take replacement cortisol, usually, hydrocortisone
- A normal body would have its highest cortisol levels in the morning, about half that in the late afternoon, with little to nothing in middle of the night. Dosages are usually divided to mimic the body’s rhythm as closely as possible.
- Of course, post op, the patent is recovering and dosages are higher for a time to aid healing. This is called stress dosing.
- Stress dosing is done when you have surgery, have a fever, are sick, feel nauseous, or at the direction of your doctor. Caution should be applied. Too little cortisol is harmful and as well, too much is harmful as that defeats the purpose of having the adrenals out. This was the hardest part of having the adrenals out – figuring this out. It still is.
- In case you run into trouble, it is a good idea to carry an “emergency kit”. A typical emergency kit contains an injectable form of hydrocortisone, a needle and syringe, alcohol pads, emergency letter from the doctor giving instructions to the emergency room, and a list of phone numbers to call. I also added to my kit a few anti-nausea pills and some hydrocortisone pills.
- Another good idea is to wear a bracelet that identifies you emergency personnel that you have an urgent medical issue. It is best to list if as adrenal insuffiency – steroid dependent – or even that you have had adrenalectomies so that it is clear to them that you need medical attention immediately. Unfortunately, paramedics are not allowed to administer steroids so it would help to train a spouse or friend to give you a shot. This will allow you the time to safely get to the hospital.
- In general, you may also need to take a mineralcorticosteroid called Florinef (although the brand has been discontinued). Salt tablets are also very helpful to keep up energy and hydration.
- I did not begin to lose weight until 4 months afterwards. Post op, I lost my appetite completely.
- Weaning, which is the changing of doses after surgery or illness, is now easy for me but for other BLA patients, has remained difficult.
- Doctors in general target a dose of hydrocortisone between 15-30mg. as being optimal.
- ACTH levels post adrenalectomies will sometimes be higher that normal – sometimes averaging around 400 (6-27). This will darken the skin.
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