The transsphenoidal surgery to remove my pituitary macroadenoma went well, and I am happy to be home. Dr. Florman anticipated my hospital stay to be at least three to seven days, but I was discharged after only two days.

Dr. Oppenheim, the endocrinologist following me during my hospital stay, wanted to closely monitor my urine output and my salt-water balance. I stayed in the unit for post-operative and head trauma patients. It was a long corridor of beds separated by curtains. A head trauma patient was in a separate room next to me. She had been there a month after having been in a car accident. The nurse said that being young (early 20s), this patient would recover fairly quickly. She was still confused though, and was constantly yelling out which made it difficult for me to read or sleep. The nurse was kind enough to give me earplugs. :-)

I believe I benefited from having an ENT surgeon, Dr. Makaretz, assist in the nasal portion of my surgery. I was very apprehensive about his removing the nasal packing the next day because I still remember the painful, drawn-out process it had been when my neurosurgeon had done it a couple years ago. But when Dr. Makaretz removed the packing, it was hardly worse than a sneeze! After my first operation I had a cerebrospinal fluid leak which put me flat in bed for a week. Prior to my operation this time Dr. Makaretz took a fat graft from my abdomen to block my nasal sinus in order to prevent the leak. I don’t know how significant the fat graft was, but I did not have a CSF leak this time. When Brent asked why he left such a big scar on my belly, Dr. Makaretz explained that he had to dig deeper because there wasn’t enough fat. Sure, I bet that’s what he tells all the patients. ;-) I will see him in a week so that he can remove the sutures and shunts from my nose.

It seemed strange to be a patient at the hospital where I normally work as a nursing unit secretary. Amelia, one of the CNAs who took care of me, was in a CNA training course with me last spring. This time when she took my vital signs, she wasn’t just practicing on me…at least I don’t think so. :-) I enjoyed visiting with her. She brought me a delicious strawberry milkshake. I knew the girl who brought me on the stretcher from recovery to the unit, and the man who wheeled me down to the car after being discharged. Normally I am the person calling them to transport patients! They were quite surprised to see me on the “other” side.

As a nursing unit secretary I frequently answer call bells from patients. So while I was there in the hospital this week, I had a strange urge to answer the call bell each time I heard it ring. I am aware that the nurses and CNAs sometimes get overwhelmed with excessive demands from some of the patients, and as a patient I did not want to be needy. I think I rang the call bell twice, only because the nurse wanted me to let her know when I was done washing up.

Brent has taken great care of me and spent a lot of time at the hospital. I was glad to have him there and I enjoyed his company. I had a nice visit with our friend Jason, who came by with a beautiful bouquet of flowers. He’s a great guy with an awesome wife and kids. I appreciate all the support, concern, and well wishes from family and Facebook friends. You know who you are! My sister Sara and my mom sent me an awesome care package filled with tissues, lip and face moisturizers, various Jell-O gelatin and pudding, Ghiradelli chocolates, and magazines. Skye, Jenna, and Hayley have been wonderful; understanding, responsible, helpful, and concerned. They’re such great girls!

My nurse Hannah had instructed me not to do anything that would cause any pressure or strain to my head, such as coughing, sneezing, sniffing, lifting, or drinking from a straw. Brent thought the girls should be aware of my limitations, so he gave them a briefing when I returned home from the hospital. He told them: “Don’t make mom sneeze or cough, don’t tickle her, and don’t scare her.” He added “Don’t punch her in the face.” Hayley looked genuinely offended, and replied “But I never punch Mommy in the face!” When Brent told them not to pour hot lava over my head, the girls relaxed a bit and began laughing.

Before Brent left to pick up my pain medication (hooray for Vicodin!), he told the girls to take care of me, watch me closely, and get me what I needed. He instructed them to make me stay in bed. If I got out of bed, they were to tell him and he would get me in trouble. Hayley seemed concerned and asked if he was going to spank me. :-)

I will see my regular endocrinologist, Dr. Bing-You, in a few weeks. After some testing he’ll determine whether I need to increase or add to my current medications. Dr. Florman said that with each operation the pituitary gland will become more damaged, thus requiring more hormone replacements. Sigh…I certainly hope not.

Overall, I am pleased with the outcome of this surgery. I wasn’t in bed at all today. Considering the operation was four days ago, I think I’m doing pretty well! (I may be cheating by taking Vikodin.) Brent said to the girls the other night, “Now girls, Mommy isn’t going to be as smart as she used to be, because they removed part of her brain.” Oops…I hadn’t considered that.

Related post:

One Down, Many More To Go
Kirsten Uhler, Cogitations, March 29, 2009

Sometime in early 2005 doctors discovered in me a small pituitary tumor. After a year and a half of drug therapy failed to reduce the tumor it was removed transsphenoidally in August of 2006. My neurosurgeon said it would probably not recur. It has.

A recent MRI scan revealed the tumor has grown to 2.5 cm, which is larger than it was before surgery in 2006. Due to the location of the tumor there is pressure on and deformation of the optic nerve. To check for damage an opthalmologist performed a Visual Field Test a few weeks ago. The results of this test are normal. Vision loss typically begins from each side of the field of vision and leads to tunnel vision and then blindness.

Dr. Jeffrey E. Florman, MD

I was referred by my endocrinologist to a neurosurgeon, Dr. Florman. Dr. Florman is very personable and candid. My previous neurosurgeon assured us that the portion of tumor he was unable to remove would be cauterized and, therefore, unlikely to grow. Dr. Florman said these tumors always grow back. This tumor is growing very fast: about one centimeter in diameter per year. At the current rate I will require surgery every two years. Because of scarring and a weakening of the tissues, each successive surgery is more risky than the previous operation.

Dr. Florman advised me to consider radiation therapy after surgery. Radiation can significantly reduce the tumor’s rate of growth which would mean fewer surgeries.

My tumor, according to Dr. Florman, is not a prolactinoma, as diagnosed by my endocrinologists and previous neurosurgeon. The prolactin levels in my blood would be many times higher if the tumor was secreting. This explains why the tumor has not reacted to the tumor-reduction drug Cabergoline. He believes my tumor is a pituitary macroadenoma, which is a non-secreting tumor. I will continue the same pharmaceutical regimen indefinitely, including a daily growth hormone injection. Unfortunately, I might even have to take additional medications after the surgery.

Dr. Florman is concerned because of the cerebrospinal fluid leak I developed after my previous surgery. He expects I will have one this time, too. As a preventative measure he plans to take some fat from my belly and insert it into my nose to block the spinal fluid from entering. Before surgery I’m going to request he remove any excess fat stores he finds in my tummy and to make the right and left sides look even. He might as well do a tummy tuck while he’s in there. :-)

We are scheduling the operation for mid-May so it won’t interfere with school. In the meantime Dr. Florman wants me to pay attention to my peripheral vision. I told him that I would have Brent periodically sneak up on me, just to test it out. Any vision loss, if left untreated, would be permanent.

This news, obviously, was not pleasant to hear. I certainly appreciate my neurosurgeon’s candor. He thoroughly answered all our questions until we were satisfied. I’m feeling overwhelmed that I must deal with this tumor and it’s requisite surgeries, and frustrated that I have been getting so many different opinions and diagnoses. I am also stressed about the financial burden it is on our family (thanks to our inadequate U.S. healthcare system). I have been through this before and know what to expect. I have a lot of confidence in my neurosurgeon. Mostly I’m just numb. I have been so busy and preoccupied with everything else that I haven’t thought much about it, nor do I care to. Brent has been wonderful. He is my greatest support. He reminded me to “Change and improve what you can, don’t stress about things you cannot, and appreciate the good things in your life.”