The events leading up to the "H-hour," the recovery process, and life after surgery...

January 24, 2023 – Jorvi Hospital, Endocrine Surgery

Patient history / Preoperative notes

The patient is a 56-year-old woman with years of chronic and episodic symptoms: strong palpitations, intense headaches, severe tremors, shortness of breath, chest pain, burning sensation in the upper abdomen, nausea/vomiting, and pallor. Her blood pressure has reached levels as high as 290/180. Diagnoses: Hypertension and type 2 diabetes. No blood-thinning medications in use.

CT scan of the adrenal glands – January 16, 2023
A 6 x 5.5 x 8.5 cm mass was found in the right adrenal gland. The appearance was clinically suspicious for pheochromocytoma. The tumor was in contact with surrounding structures but showed no clear invasion or signs of metastasis in the upper abdomen.

Treatment plan
Laparoscopic right adrenalectomy scheduled for February 7. Preoperative alpha-blocker (Dibenzyran) initiated on January 19 and continued until the night before surgery. Patient to receive at least 1000 ml IV NaCl infusion the night before surgery.

The surgical procedure, its risks, and recovery process were discussed with the patient, who agreed to the plan.

Diagnosis and Treatment Assessment

Diagnosis: C74.1 – Malignant neoplasm of adrenal medulla
Urgency level: Class 8 (within 30 days)

February 7, 2023 – 09:31 AM – Surgery Report

Right adrenalectomy

Indication for surgery: Based on operating surgeon's assessment.

The patient had suffered for years from severe episodic symptoms: elevated blood pressure, palpitations, headaches, and tremors. Imaging (ultrasound and CT) revealed a tumor in the right adrenal region, consistent with pheochromocytoma, confirmed by blood tests. Surgical and anesthetic risks were discussed, including the possibility of conversion from laparoscopic to open surgery.

Procedure:
BCA31 – Laparoscopic right adrenalectomy

A tumor along with the adrenal gland was removed during the surgery. The detailed intraoperative report has been omitted for brevity.

The resected tissue showed a cystic, violet-grey mass. Samples were sent for pathological analysis.

Diagnosis: Pheochromocytoma
Post-op plan: Discontinue Dibenzyran. Monitor pulse and blood pressure three times a day. Endocrinology consultation scheduled for the next day.

February 9, 2023 – Post-Operative Evaluation

Endocrinology consultation (outpatient clinic)

The large pheochromocytoma and adrenal gland were successfully removed from the right side. All blood pressure medications were discontinued post-surgery.

Preoperative medications included:

• Cozaar Comp 100/12.5 mg (for hypertension)

• Zanidip 20 mg (for hypertension)

• Bisoprolol 5 mg (beta-blocker for elevated pulse and blood pressure)

Current vitals: BP 133/79 mmHg, pulse approx. 60 bpm
Suggested treatment: Lerkanidipine 10 mg once daily only. Home blood pressure monitoring recommended. If BP falls below 110/70, the medication can be discontinued. Referral made for continued follow-up at Meilahti endocrine clinic.

Pheochromocytoma's Grip

Eight months after surgery

My surgery took place on February 7, 2023. This post was originally published on October 17, 2023. I updated parts of the text on June 21, 2025, because time has confirmed which symptoms and conditions have remained with me after the pheochromocytoma removal.

Many readers reached out after my last blog post to ask how I've been doing. I apologize for the long silence—I had promised to share my recovery sooner.

Recovery After Surgery

Given the circumstances, I've recovered well. Adjusting my blood pressure medication took time—your body needs to adapt to functioning with only one adrenal gland. Today, I only take one mild blood pressure medication. Previously, I needed multiple medications in high doses. My blood pressure is now ideal. I hope to stop medication altogether, though that may be just a dream...

In 2017, I was diagnosed with type 2 diabetes and had strong medication for it. Now, my blood sugar levels are within normal range, and I no longer need medication.

The intense headaches disappeared completely after surgery. I rarely need pain relief anymore, and when I do, a half-dose of anti-inflammatory medication is enough. The severe, chronic tremor is also gone.

What the Surgery Changed

All of the extreme symptoms I described in my previous post were literally left on the operating table. Today, pheochromocytoma is just an unpleasant memory.

I continue regular follow-ups to monitor my general health and kidney function. I hope my remaining left adrenal gland stays healthy.

Gratitude to the Right People

I am deeply grateful to the general practitioner who took my symptoms seriously and referred me for further testing in 2022. The surgeon who operated on me even told me he had saved my life—my last episodes were life-threatening, with my blood pressure reaching 202/300.

Heartfelt thanks to all the doctors who treated me at Meilahti Endocrinology and to the surgical team and nursing staff at Jorvi Hospital. Your work matters!

What's Left After Pheochromocytoma?

Vision problems and damage
Over two years post-surgery, some issues remain. I've had multiple laser treatments for retinal damage. My ophthalmologist suspects early signs of glaucoma and cataracts. He said the tumor had "aged" my eyes—they now resemble those of a 75-year-old.

Joint pain and muscle stiffness
Despite being physically active and doing strength training, I still experience joint pain and stiffness. In 2024, I underwent carpal tunnel surgery in my right hand. I'm currently awaiting surgery on both thumb joints, which may involve removing the trapezium bone.

What Pheochromocytoma Can Leave Behind

Heart and vascular system

• Arterial stiffness

• Myocardial hypertrophy

• Arrhythmias

• Damage to the aorta and blood vessels

Kidneys

• Impaired kidney function

• Protein leakage in urine

Brain, nervous system, and immunity

• Risk of TIA and stroke

• Autonomic nervous system dysfunction

• Weakening of the immune system

Eyes

• Retinal damage (hypertensive retinopathy)

Muscles and metabolism

• Insulin resistance

• Chronic inflammation and poor recovery

Mental and cognitive effects

• Anxiety, sleep disturbances, depression

• Concentration issues and fatigue

Can the Body Heal?

Some damage may be permanent, but much depends on individual factors—how long blood pressure was elevated, coexisting illnesses, and self-care. Since my pheochromocytoma went undetected for nearly 30 years, I actively monitor my heart and kidneys.

Feeling Abandoned

Between 2000 and 2022, and especially after Finland's healthcare reform (SOTE), I felt abandoned in the system. My condition was life-threatening, yet I often felt alone. "It's a rare disease" is not a valid reason to leave a patient without proper care.

Considering a Patient Injury Report

One of my doctors recommended filing a patient injury report. The delayed diagnosis and lack of treatment caused me considerable harm. I deserved proper investigations years earlier. Now, 2 years and 4 months after surgery, I am seriously considering submitting the report.

Final Thoughts

Rarity must never be a reason for negligence. Patients must be listened to—especially when symptoms are severe and unusual. In my case, it was never hypochondria. It was a life-threatening tumor that should have been identified long ago. It was pheochromocytoma all along.

I hope my story helps others dealing with similar symptoms.

💬 If you've had similar experiences or want to share your thoughts, please leave a comment or reach out. Together, we can make rare diseases more visible.

Book in Progress

I've started writing a book about my personal experience with pheochromocytoma. I believe it's important to share and give this disease a face. It dominated my life for far too long and deeply affected not only my physical health but also my mental well-being. Those who knew me well can surely attest to that.

Closing Words

A warm thank-you to everyone who reached out after reading my posts about pheochromocytoma. It's been moving to hear your stories—about long-standing, unexplained symptoms that never got proper attention. I truly hope you receive the investigations and treatment you need.

Remember: if all you get from an appointment is a prescription and a quick goodbye, you have every right to demand further tests. Don't settle for explanations that don't feel right.

If I can offer even a small amount of peer support, I will. Together, we can move forward—even just one step at a time.

I wish each of you strength, wellness, and as much health as possible—even if it's the relative kind many of us must live with. 💛

With heartfelt warmth,
Roya