My mother is a 76 year old woman who, up until recently was very active and lived independently. She was an administrative secretary and retired in October. She was able to drive and get anywhere she wanted to go.

In 2006 she underwent transsphenoidal surgery to remove the tumor. Her doctor said he got most of the tumor and the chances of it recurring in her lifetime were slim.

In December, 2010 she began having nose bleeds that were recurring. Her ENT sent her for a CAT to rule out anything that he was not able to get to without surgery. The CAT indicated that the tumor had returned and was larger than before. An MRI confirmed this. They also did lab work and discovered that her prolactin levels were highly elevated. The neurosurgeon that performed her first surgery, said that the tumor had not grown downward, but upward, making it impossible to remove transsphenoidally. We asked about other options, chemotherapy or medication. He said they were not options. On Feb. 9th, this year, she underwent a craniotomy to remove the tumor. The surgery lasted 6 hours. When he came out to talk to us afterward, he said the tumor was larger than he thought. He said he believes he got 98% of the tumor. The only symptom she had been experiencing from the tumor was loss of vision. Her peripheral vision was not as affected as her acuity. He said the tumor was pressing on the area where the optic nerves cross. He said he could not see any damage to the optic nerve.

Since the surgery, Mom has had other problems with her vision, including loss of vision in specific fields of her vision. It is more blurred. She seems to be able to see better sometimes, and worse at other times. After almost 2 weeks in the hospital she was released to rehab., at a skilled nursing facility.

After her surgery when she started eating a regular diet, her appetite was incredible. Then after going to rehab, she was becoming lethargic and when we tried getting her to eat, she said she felt “stuffed” when she hadn’t had but two bites of food!

About 3 days after the original surgery she had what they called a seizure. She went rigid, her face became distorted and her eyes were wide open and fixated straight ahead. She was unresponsive and her blood pressure dropped very low. Within a few minutes, her blood pressure came back up and she was able to respond to questions. Tests showed a blood pool or clot between the front of her skull and forehead, but not under the skull. She was taken to surgery immediately to remove it. They increased her Keppra from 500 mg to 1000 mg twice daily. She had 2 more of those episodes since.

When the lethargy got really severe and she stopped eating, she was hospitalized. When they admitted her, her GP reduced her Keppra back to 500 mg twice daily. Her sodium level was 125. I researched online and asked her doctor (GP) about SIADH. He said her case didn’t fit the textbook version, although from what I had read, I thought it did. But, hey, I’m not a doctor. The next day he came back and said he thought it might be SIADH anyway. Knowing this involved the pituitary, I asked him if we shouldn’t consult an endocrinologist? He said, “That would be very nice if we had one.” He consulted with a nephrologist. They began administering Vaprisol. Her sodium rose to 130. The Vaprisol was discontinued. Her next lab work showed her blood sodium was 130. They restarted the Vaprisol. From there her sodium level jumped to 148, 153 and 168. PT started coming in to have her sit on the side of her bed. She had another episode where her BP dropped to 85/31 and her heart rate went up to 162. Her BP came back up slowly and it took over 2 hours for her heart rate to return to normal.

She has been very confused and hallucinating. Her sodium is starting to come back down slowly and that is improving. Unfortunately her appetite is nonexistent and we are back to her feeling “stuffed” when she hasn’t eaten anything. It occurred to me that when she was eating so well after the surgery, she was on a steroid to reduce the swelling from the craniotomy. After they took her off the steroid, her appetite waned away. Tonight we asked her neurosurgeon’s PA if this might be another problem associated with the removal of the pituitary adenoma. He said he “didn’t think so.”

Knowing all of the things the pituitary controls through release of hormones, I am very concerned that we are not consulting an endocrinologist because there is not one associated with the hospital she is in. We are at a loss what to do for our Mom now. She was making such progress in rehab, even though it was slow. She was acting more and more her intelligent and witty self.

Can you offer any advice? My sister and I have given up the last 6 weeks of our lives to be with her and see that she is taken care of. Because I was there and knew what as going on, we realized that one of the aides administering her Keppra was giving her 500 mg instead of the 1000 mg in the doctors orders. Other aides were giving it correctly. At first we thought maybe she was having seizures that were going undetected if she were alone in her room, or asleep in her bed. We thought that was causing the loss of appetite and increased lethargy. Her neurologist now says he doesn’t think they were seizures and he doesn’t know what they are. I wondered if something off in the pituitary could cause these episodes as well.