× Tell us about your journey

Hello! Diane from Indiana here......

  • jimolson
  • jimolson's Avatar Topic Author
  • Offline
  • Fresh Boarder
  • Fresh Boarder
  • Posts 1
  • Thank you received: 0

Hello! Diane from Indiana here...... was created by jimolson


Hello from another non-functioning adenoma patient in Indianapolis, albeit 2 years behind you!

I'm a 66 y/o male whose adenoma was discovered in 2015 exactly like yours: by way of a neck MRI looking for spinal stenosis. Dr. Carl Sartorius at Goodman Campbell Brain and Spine announced that I was a candidate for disk fusion but that surgery to correct it might need to take a back seat to studying a peculiar 3.5cm blob growing behind my eyes. "I'm a spine doctor, but my partner, Dr. Troy Payner (skull base neurosurgeon), will know what that blob is and how to deal with it...".

Dr. Payner guided me through 2 years of watchful waiting, an interval that included developing a relationship with Indiana's best endocrinologist, Catherine Bain, MD. Bain prescribed a series of blood tests that "typed" my tumor and assessed the extent of my hypopituitarism. She put me on meds that within days had me feeling 100% better. The skeletal aches and pains and malaise that made it hard to get out of bed disappeared quickly after the meds began.

I was never enthusiastic about Payner's watchful waiting game plan. I knew that I was facing (eventually) serious skull base surgery to remove the adenoma, and I wasn't getting any younger. To some extent I was putting my life on hold waiting for this surgery. Would I recover post-surgery to resume my job as an electrical engineer? Would medical expenses deplete my retirement savings? All of these things prompted me to want the tumor out immediately.

However, Payner counseled me to wait patiently and monitor the progress of the tumor with MRIs. He pointed out that the mostly affordable hormone supplements I took daily put me back into normal health. "Jim, you're on hormone supplements for life. MRIs show that the adenoma squashed your pituitary so much that it is unlikely to recover after surgery. "

He reminded me that adenomas grow back over time and that having a second surgery within 5-10 years of the first one was not unthinkable. His game plan for me to was stretch out the time between my surgeries so that I might possibly die of old age before a second or third surgery was necessary. In support of this watchful waiting plan I had MRIs at 6 month intervals and tests of my peripheral vision annually.

In November 2017 the vision tests showed that I had measurable loss of peripheral vision resulting from the adenoma pushing the optic chiasm upward, so I had the surgery. Payner was assisted by ENT surgeon Jonathan Y. Ting, MD at Indianapolis' IU Methodist Hospital.

I won't tell you that transsphenoidal surgery is a piece of cake, because it wasn't. I exited surgery thinking my head was as large as a beach ball and ready to explode, but pain meds administered during recovery made the pain manageable. The non-stop projectile vomiting during the first night was quite a trip (my apologies to the orderlies in ICU!).

I dreamed in full-color HD video for about 4 days. People thought I slept a lot during recovery, but I was enjoying vivid dreams that I haven't had since. The experience was similar to my first time in a 3D movie theater.

We had a problem with electrolyte imbalance on day #3 that kept me in the hospital for a full week while they got my numbers back in line, but I was lucid and conversational during most of that week. Please remind your attending physicians to keep an eye on your electrolytes post-surgery!

I was back home by day 7 after surgery and returned to my desk job (albeit under low steam) by day 14. For 6 weeks afterward I blew impressive chunky debris from my nose that made me wonder if my brain was falling out in pieces. But it was not painful, just a bit alarming.

I was fortunate not to suffer any loss of spinal fluid post-surgery. Now a year later I have the clearest breathing passages I've ever had. I sleep with my mouth closed for the first time in decades.

My peripheral vision returned within 6 months post-surgery. My neuro-dude was correct: the pituitary gland did not resume normal functioning nor relieve me of the need to take hormone supplements. I am still on prednisone, Synthroid, desmopressin, and testosterone gel. But my health is quite normal at one year post-surgery.

For those of you facing surgery, look first for a pituitary center of excellence. Getting surgeons who do transsphenoidal surgery every day is important. While IU Methodist in Indianapolis is not a formal pituitary center of excellence, I was reassured by several skilled people that Dr. Payner and Dr. Ting of Goodman Campbell constitute a surgical dream team for pituitary adenomas.

My interactions with both doctors were 100% positive at all times. Very accessible, extremely knowledgeable and confidence inspiring. Same goes for Dr. Bain, the St. Vincent endocrinologist. She keeps me between the lines, and I will be forever grateful for her support.

Jim Olson
Indianapolis, IN
October 2018
9 months 3 weeks ago #10540

Please Log in or Create an account to join the conversation.

Moderators: [email protected]