Wednesday, May 4, 2011

Recovery: Post Op Day 14

Hi everyone.  I felt pretty good up until yesterday.  Luckily, I had a follow up appointment with my endocrinologist who diagnosed me with Cushing's. He's a Cushing's specialist. I always feel so relieved after speaking with him.

I thought I would share my questions and his responses. It may help others figure things out post op. ~m

Complications from surgery -- diabetes insipidus. Sodium levels in the hospital were 150, so they gave me DDVAP. Sodium levels dropped to 145 before I was discharged from hospital (post op day 3).

Improvements after surgery
Buffalo hump feels less rigid, skin not pulled so tight.
Belly fat is loose and jiggly. Stomach feels deflated.  Before surgery, belly tight as a drum from excess cortisol. Doc says this is a good sign.

Lab work -- 13.6 cortisol, 24 ACTH  (post op day 5 after withholding hydrocortisone dose in day 4 pm)

Concerned that I’m feeling bad now. I am 14 days post op pituitary surgery. Felt OK before yesterday. Not cartwheels but not in pain either. Yesterday, I woke up with a mild headache and stiffness in my neck and shoulders. I went to the chiropractor but it didn't offer much relief. I took a 4 hr nap and had 9 hours of sleep, but my symptoms remain. Today, my symptoms are the same, even after a 2 hour nap.

  • Mild burning/itching in sinus
  • Headache
  • Pressure in head, upside down
  • Overall body aches
  • Stiff neck and shoulders
  • Sore back
  • Preference for dark rooms, no noise
  • No drainage in throat so probably not a cerebrospinal fluid leak (CSF leak) 
Doc said feeling bad was a great sign. He is concerned because I am showing signs of hypoatremia, or low sodium levels.  This is common after pituitary surgery, especially for those of us who experienced diabetes insipidus which leads to hyperatremia, or high blood sodium levels. He said he often sees these symptoms happen right around this time (days 7-14 post op). At 8 am on Friday, I will have blood drawn for an electrolyte panel (includes sodium) with cortisol and ACTH after withholding 1 pm dose on Thursday. He suggests that when I drink fluids, I drink Gatorade only, no water, for the next two days. This will help rebalance my electrolytes.
University of California at San Francisco's Pituitary Center mention this in their post surgical instructions:
Some patients develop disorders of salt and water metabolism following pituitary surgery. Headache, nausea, vomiting, confusion, impaired concentration, and muscle aches might be due to hyponatremia (low blood sodium levels). This disorder typically occurs 7 to 10 days after surgery and is more common in patients who have had surgery for Cushing's disease. If you develop these symptoms, contact us immediately. Excessive urination, thirst, and the need to ingest large quantities of fluids might be related to the onset of diabetes insipidus or diabetes mellitus. These disorders put you at risk for dehydration. These symptoms require urgent evaluation and determination of the underlying cause so that appropriate treatment may be given.

I’m taking 10 mg Ambien sleeping pills at night. I tried a few nights without them and I didn’t sleep.
Doc asked if I had any other Cushing’s symptoms, as perhaps too much hydrocortisone was keeping me up at night. I told him I had no other symptoms, and I had lost 6 pounds. A person doesn’t lose weight with Cushing’s!  So, Doc suggested I move dose my 2 pm dose to 1 pm. This will hopefully allow the cortisol levels to be low enough for me to sleep at night.

Dose schedule – can I reduce my hydrocortisone dose now, 14 days post op or wait a few days until the weekend?  What are the next dose levels?
  • Do not drop more than 2.5 mg of cortef at a time.
  • Currently on 20 / 5
  • Stay at 20 / 5 -- next few days, get through the next 8 am blood draw this Friday
  • 17.5 / 5  -- stay at this dose for 10-14 days
  • 15 / 5  -- stay at this dose for 10-14 days
  • Appointment with Doc before dropping dose any lower

When do I need to have an overall hormone lab panel done? How far post op?  I haven’t done my labwork scheduled for after my appointment in January 2011.
Do this 6 weeks post op, or June 1, 2011.

When do I test?  Do I need to test 17-OHS or 8 am cortisol or 24hr UFC when dropping dose of Cortef?

~Moxie Melissa