Undergoing surgery to remove a pituitary tumor was one of the most challenging experiences of my life, both physically and emotionally. When I first received my diagnosis, I had so many questions and searched endlessly for personal stories to help me understand what to expect. Unfortunately, I found very little information from a patient’s perspective. That’s why I decided to share my journey—not just the medical details, but the real, lived experience of preparing for surgery, navigating recovery, and finding moments of hope along the way. My goal is to provide comfort, guidance, and reassurance to anyone who may be facing this surgery. If even one person feels a little more prepared or less alone because of my story, then writing this will have been worth it.

Diagnosis:

When I think back to how my diagnosis came about, it feels surreal—like the start of a journey I never expected to take. It all began one afternoon in early September when I wasn’t feeling quite right. I had a pounding headache, flashes of light flickering in my vision, and when I tried to speak, the words coming out were gibberish—not at all what I was trying to say. In that moment, I thought, Am I having a stroke?

My wonderful husband Gary, sensing something was seriously wrong, insisted we head to the ER which is minutes away. Thankfully, the hospital staff acted swiftly, treating my symptoms as a potential stroke, since the symptoms started less than 30 minutes before, they moved me to the front of the line for evaluation. What followed was a whirlwind: I was examined, given a CT scan, and had bloodwork drawn. I’ll always be grateful for the proactive ER doctor who didn’t stop at ruling out a stroke but looked deeper.

It turned out that my symptoms—headache, gibberish speech, and flashing lights—were due to a migraine. However, the CT scan revealed something unexpected: a mass on my pituitary gland. This led to a follow-up MRI with and without contrast, which confirmed the finding—a tumor on my pituitary gland. Strangely enough, the tumor was shaped like a snowman. As the creator and Admin of the popular Vintage Kitschy Christmas Facebook group, I couldn’t help but marvel at the irony.

But this “snowman” was no whimsical figure. It was pressing on my optic nerve, causing it to bend. If left untreated, it could have led to blindness. Thankfully, most pituitary tumors aren’t cancerous, and surgery offered a good chance of recovery. Still, my husband and I were stunned. I remember thinking, How could this be happening? I feel fine except for a random headache! If I feel this okay, then surgery should be a piece of cake, right?

The ER doctor also explained the critical role of the pituitary gland. It controls numerous hormones that regulate essential body functions, and my bloodwork showed it was already struggling under the tumor’s pressure. My sodium levels were alarmingly low, a sign of how the tumor was affecting my body’s delicate balance. I learned that the pituitary gland manages sodium levels through antidiuretic hormone (ADH), and any disruption—like a tumor—can lead to serious issues such as low sodium (SIADH) or other hormonal imbalances.

The ER doctor referred me to a neurosurgeon at UCSF, and I left the hospital carrying a mix of fear, hope, and determination.

Pre-Surgery Testing: Preparing for the Big Day

My surgery was scheduled for November 4, 2024, and the weeks leading up to it were filled with appointments and tests. I had Zoom calls with my neurosurgeon, who took the time to answer every question my husband and I had. He explained the complexity of the surgery and mentioned I’d also need an ENT surgeon to assist. At the time, I didn’t fully understand why, but it became clearer as we got closer to the date.

In preparation, I underwent extensive bloodwork to assess my hormone levels, along with hospital-required tests. Just the day before surgery, I had another MRI with and without contrast. Each step brought me closer to understanding the incredible teamwork and precision this surgery would require.

Emotional Preparation: Finding Strength in Faith and Family

Emotionally, I wish I could say I felt fearless—but that wouldn’t be true. In the days leading up to surgery, I felt waves of nervousness and fear, mixed with moments of calm acceptance. I searched online for patient stories to help prepare myself, but I was disheartened by how little I found. That’s part of why I’m sharing my story now—I don’t want others to feel as unprepared as I did.

I feel so incredibly lucky and deeply blessed to have had the unwavering support of my amazing husband Gary and my wonderful twin sister throughout this journey. My husband was by my side every single day in the hospital, offering comfort, care, and strength when I needed it most. His love and presence made such a difference, and I truly don’t know how I would have gotten through those long, challenging days without him. Equally, my twin sister was my rock—talking and texting with me every day, lifting my spirits, and filling me with encouragement when I felt overwhelmed. Their love, positivity, and support didn’t stop once I came home, either. They continued to be my pillars of strength, helping me stay focused on healing and moving forward in my recovery. I truly couldn’t have done this without them both, and I am forever grateful for their care, their love, and the light they brought into a very difficult time

This is the beginning of my journey, and I hope it offers you some comfort and clarity if you’re facing a similar path. You’re not alone, and while it’s natural to feel scared, I want you to know that there is hope—and healing—on the other side. Stay tuned for more about the surgery itself and what recovery looks like from a patient’s perspective.

About the Surgery: A Journey Through the Unknown

Surgical Approach

Pituitary gland surgery is truly a marvel of modern medicine. The procedure, known as transsphenoidal or endoscopic pituitary surgery, involves neurosurgeons accessing the gland through the nasal passage to reach the base of the skull where the pituitary gland is located. In my case, an ENT surgeon was also needed because my septum wasn’t just deviated—it had a curly-que twist that completely blocked the neurosurgeon’s path. Imagine my surprise when, just five minutes before surgery, the ENT surgeon introduced himself, showed us my MRI scans, and explained that he would need to reshape my septum to create a clear path to the gland. It was a lot to take in so quickly, but in hindsight, I’m grateful I didn’t have time to dwell on it. Moments later, the anesthesiologist put me to sleep, and before I knew it, the surgery was complete.

Another unexpected part of my surgery involved a fat graft. The surgeons took a small amount of fat from my abdomen to seal a hole in my skull that was created to access the pituitary gland. This graft also helped stop a minor brain fluid leak that occurred during the procedure. Thankfully, the incision on my abdomen was small, and recovery from it was relatively easy—just a patch and some suture tape to protect it.

Duration and Complexity

The surgery took about three to four hours. Knowing that my optic nerve was being compressed and my vision was at risk made the decision to proceed feel inevitable, despite the complexity and risks. My husband and I trusted the surgeons and their expertise, and I’m grateful every day for their skill.

Hospital Experience

Recovery Room

Waking up after surgery was disorienting. I remember feeling intense nausea, a bad headache, and a painful throat. At first, I had no idea what was causing the throat pain, but the nurse explained it was from the breathing tube used during surgery. She reassured me and brought me ice chips, which soothed my throat and helped calm me.

The headaches were sharp, but the nurse quickly administered medication through my IV, which worked almost immediately. However, breathing was a challenge. My nose was completely packed due to the septum surgery, and I had to breathe through my mouth. When my nose started bleeding, the nurse called an ENT doctor and he came running in and examined me and placed a “mustache dressing”—a sling-like bandage to catch the drainage. It was both practical and surreal, but I was grateful for their attentiveness.

I was eventually moved to the neuro ICU, where I spent the next few days being closely monitored.

Post-Operative Care

The neuro ICU was a constant hub of activity. Having a private room was a blessing, but there was always something happening. Every four hours, nurses would check my vitals, draw blood, and administer medication. The ENT and neurology teams made their daily rounds—often before dawn—conducting vision tests, facial sensitivity checks, and other neurological assessments. In addition to these routine checks, I was also started on sinus rinses three times a day. A critical detail I learned is that the water for these rinses must always be sterile or boiled to ensure it’s safe for use and free from contaminants. This step is essential for preventing infections and promoting proper healing.

I was also instructed to avoid using a straw during recovery and was not given any straws, as the sucking action creates negative pressure in the nasal cavity. This could potentially disrupt the healing process and, more importantly, increase the risk of a cerebrospinal fluid (CSF) leak (brain fluid leak)—a serious complication that needed to be avoided at all costs. These precautions, though sometimes tedious, were vital to ensuring a safe and steady recovery.

The nausea lasted for the first couple of days, the doctors explained it wasn’t just from the anesthesia. My sodium levels were fluctuating wildly, causing symptoms like nausea, headaches, and confusion. At one point, I was given medication to stimulate and kick-restart my pituitary gland to regulate sodium, which helped, but it also meant frequent trips to the bathroom as my body shed excess fluid. The gland having been partially covered for a while needed to learn how to regulate my body again. The sodium levels being tested has nothing to do with salt intake, rather how the gland is telling the body how to manage fluids due to what it feels needs to be done to stabilize the body’s sodium. During this time, I was told to drink Gatorades instead of just water, as Gatorade contains more nutrients and electrolytes that my body desperately needed. Water alone didn’t provide the extra nutrients required to help stabilize my levels. To this day, I still drink some Gatorade regularly to ensure I’m getting those vital nutrients and keeping my body balanced.

Pain management was surprisingly manageable. Within 48 hours, I was able to rely on Tylenol instead of stronger medications. The pain was more of a dull, pounding pressure that came and went with sudden movements. Strangely enough, the most uncomfortable part was my nose, which had splints and stitches.

Sinus Management

Recovering from septum surgery was far tougher than I expected. My nasal passages were completely packed, and I couldn’t breathe through my nose at all. The packing and stitches caused drainage that soaked my mustache dressing frequently, making eating and drinking a messy ordeal. My supportive husband helped me change the gauze frequently and the Nurses encouraged me to use saline rinses, which helped keep things clean but were unpleasant at first.

On the fourth day, the ENT team removed one of the plugs from my nose, and it was an experience I’ll never forget. They first flushed my nasal passage with saline before the surgeon carefully extracted the plug. The sensation was intense—an unusual mix of pressure, burning, and strange sounds—but the immediate relief that followed was undeniable. It was then that I learned I also had splints and stitches in my nose, which would need to stay in place for another two weeks. During that time, I couldn’t breath through my nose and needed to sneeze through my mouth. The thought of living that way for a couple more weeks was daunting, but I reminded myself to trust the process, focus on healing, and take it one day at a time.

Recovery at Home

Physical Recovery

After a week in the hospital, my sodium levels finally stabilized enough for me to go home—a milestone I’ll never forget. The first few days at home were challenging but manageable. I diligently kept up with my saline rinses three times a day using sterile water, which helped clear out the blood clots and mucus from my nose as well keeps the packing soft and moist. While the process wasn’t pleasant, it was oddly satisfying to see progress and know my body was healing.

Most of my time was spent resting on the couch with my head elevated, managing sinus headaches and congestion. I slowly eased back into working from home, answering emails for a few hours each day, with plenty of breaks to rest in between. Ice packs became my constant companion, offering relief from the sinus pressure.

Two weeks post-op, I had a follow-up appointment with my neurosurgeon, who confirmed that I’m healing well and, most importantly, that my tumor is not cancerous. Hearing those words filled me with an overwhelming sense of relief and joy—I was absolutely ecstatic!

I was incredibly fortunate to have my husband caring for me so attentively, preparing delicious, nutritious meals and making sure I had everything I needed. I’m endlessly grateful for his love and support. My twin sister was also a constant source of encouragement, staying in touch every day to keep my spirits up and cheering me on through each step of recovery. Having their support made all the difference in navigating my healing.

Pain Management

I relied on Tylenol for the headaches, but within days, I didn’t need any pain medication. Most of the discomfort came from sinus pressure and the inability to fully breathe through my nose. I used ice packs for relief, which worked wonders and diligently kept up with the sinus rinses.

Sleep and Breathing Challenges

Sleeping was my main struggle. I had to keep my head elevated, which made it hard to get comfortable, and the constant drainage from my nose meant I woke up frequently coughing. I had to learn how to breath only through my mouth while sleeping, my husband swears I didn’t snore. I kept water and juice nearby to stay hydrated and help clear my throat and over time, sheer exhaustion helped me get a little rest.

Longer-Term Recovery

Follow-Up Care

After being discharged, I had frequent weekly blood tests at a local lab to monitor my sodium and hormone levels. The results were a constant rollercoaster—some days my levels were stable, while on others they swung dangerously low (I almost had to be checked back into the hospital) or high. It was both frustrating and, at times, deeply discouraging. On top of that, my doctor placed me on a strict fluid restriction of just one quart of liquid a day, which added another layer of difficulty to an already challenging recovery.

Thankfully, Gary stepped in to make things a little easier by creating an app for me to track my fluid intake. All I had to do was open the app, log what I drank, and it automatically calculated everything for me. The app made a world of difference and helped me stay on track, easing some of the stress during this difficult time.

There were moments when I felt truly down, wondering if my body would ever stabilize. But through it all, I leaned on my incredible support system—my husband Gary and my twin sister. They kept me positive and reminded me that healing takes time, especially after my pituitary gland had been under pressure from the tumor for who knows how many years. Their encouragement gave me hope and strength to stay patient and trust that my body was working its way back to balance. I’m so grateful for their unwavering love and support during such a difficult time.

Two weeks after surgery, I finally had my nasal splints and stitches removed—a moment I had been eagerly anticipating. The ENT surgeon started by using Afrin and numbing spray and carefully suctioning out my sinuses before removing the splints. He made small talk, asking questions as he worked to try and keep my mind off the discomfort as well to he knew how iI was holding up through the process. I chose not to look, but my husband could see the process via the large monitor the doctor used via a camera on the tool. While the process wasn’t entirely painless, it was absolutely worth it. For the first time in weeks, I could breathe through my nose, and the relief was incredible.

Even more exciting, I could smell again—just a little, but enough to catch the faint scent of perfume lingering on my sweater I’d worn weeks earlier. To celebrate, my husband and I stopped at a nice restaurant for dinner on the way home, and I could even begin to taste the food. It felt like such a victory after everything I’d been through.

I’ll need to return to the ENT in a month to finish the process of clearing out the rest of my sinus packing, but I’m already feeling so much better. I’ve been sleeping well, breathing more easily, and taking real steps toward normalcy. I am a little congested and sound a bit nasally like I have cold but every day things are improving. The ENT surgeon also gave me exercises to re-train my sense of smell and taste, as these can take a few months to fully recover after septum surgery. Knowing I’m on the right track is such a great feeling.

As part of my ongoing recovery, I will need to have an MRI about 6–8 weeks after surgery. This scan will allow my medical team to evaluate the surgical site and ensure that everything is healing as expected. It’s also an important step to monitor for any signs of the tumor potentially regrowing, which is a possibility with pituitary tumors.

In addition, I’ll be following up with a hormone endocrinologist around 8 weeks post-surgery. This specialist will assess my hormone levels and determine how well my pituitary gland is functioning now that the tumor has been removed. These follow-ups are critical for ensuring my long-term health and stability.

As these appointments happen, I’ll update this post with the results and any insights they bring. My hope is that sharing these details will continue to help those on a similar journey better understand what to expect during recovery. Stay tuned!

Summary

I wanted to summarize the challenges I faced during and after my pituitary gland surgery to help others who may be preparing for a similar journey. Recovery looks different for everyone, and not every patient will experience the same challenges or require additional procedures like septum surgery. These bullet points reflect my personal experience, and while the process was difficult at times, it was also a journey of healing and resilience. My hope is that by sharing my story, I can provide insight and reassurance to others navigating this path.

• Breathing Difficulties: Complete nasal blockage from the septum surgery made it impossible to breathe through my nose, causing discomfort and difficulty sleeping.
• Sinus Pressure and Drainage: Persistent sinus pressure, headaches and heavy drainage required frequent dressing changes and saline rinses, which were uncomfortable but necessary.
• Nausea and Headaches: Severe nausea and headaches, exacerbated by fluctuating sodium levels and the aftereffects of surgery, were challenging to manage initially.
• Hormonal Imbalances: Fluctuating sodium levels caused symptoms like extreme thirst, frequent urination, headaches and confusion, requiring constant monitoring and blood tests.
• Sleep Challenges: Difficulty sleeping due to drainage, nasal packing, and the need to keep my head elevated made rest hard to come by. And, that only being able to breath through the mouth.
• Frequent Blood Draws and Monitoring: Frequent bloodwork at the hospital and continued testing once I was home, along with constant monitoring by the medical staff, were essential but undeniably taxing—both physically and emotionally.
• Energy Levels and Fatigue: Post-surgery fatigue made even small tasks feel challenging, requiring careful pacing and lots of rest. I pushed through it initially in the hospital by taking walk as soon as they would let me. My usual morning walks were put on hold when I got home for a couple weeks.
• Emotional Strain: The stress of recovery, coupled with concerns about hormone levels and the potential for complications, took a toll at times but my supportive family helped me and encouraged me and that was what I needed most.

Words of Encouragement

If you’re preparing for pituitary gland surgery, know this: the journey isn’t easy, but it’s worth it. Give yourself time to heal and lean on your support system—they’ll be your strength when you need it most. Celebrate small victories, like being able to breathe again or tasting your favorite food. Remember that recovery looks different for everyone, so be patient with yourself. While not common, pituitary gland surgery does impact 1 in 1,000 people.

Most of all, take comfort in knowing you’re not alone. If you have questions about my experience, I’m here to help.

Thanksgiving 2024:

As I post this guide today, it’s Thanksgiving, and I’m almost one-month post-op. More than anything, I dreamed of being able to smell the warm, homey deliciousness of Thanksgiving cooking in our house again. My fabulous husband took on the task of preparing our meal, and I’m absolutely over the moon to share that I could smell it—I could actually smell the turkey roasting and all the other wonderful Thanksgiving aromas filling our home.

While my sense of taste and smell are still improving day by day, I was able to fully savor Thanksgiving dinner and let me tell you—I gobbled until I wobbled! This year’s celebration felt extra special, and I couldn’t be more grateful. Wishing you all a warm, joyful, and delicious Thanksgiving too!