Pheochromocytoma Support Foundation

  Shining the light on pheochromocytoma awareness through education, early detection, and support. 

After Surgery

 

Will I be back to normal within days?

Recovery is different for everyone, and your recovery will not be 100% identical to someone else.

Am I going crazy???

Don't worry, nearly all pheo patients feel this way post-surgery. It's your body going through dopamine withdrawals.

My doctor only wants to see me once a year. Is this normal?

Yes, this is normal and is a great sign of a healthy recovery! 

I feel like I have a large hole where the tumor was, people say I shouldn't be able to feel this?

This is a common complaint of pheochromocytoma patients (and patients of other tumors or who have organs/areas of their body removed). The "hollow" sensation will fade and eventually go away over time.

I know the tumor is gone, but I feel disoriented and weird. 

We hear about many patients who feel this way after the tumor is removed. It's part of your body "coming down" from the side effects of the tumor. This feeling should pass eventually, but you should call your doctor if you are concerned. 

Immeadiately After Surgery

You will stay in the recovery room for several hours and be monitored closely as you recover from anesthesia. If you need something for pain, your nurse will give you pain medicine as needed. You should be encouraged to get out of bed and walk the night of surgery. You may also have a sore throat due to the placement of anesthesia tubes during surgery. Throat lozenges  usually help. Often, patients who have had a laparoscopic adrenalectomy are ready to go home quite soon. Patients who have had an open adrenalectomy typically stay three to five nights.


You should call your doctor if you experience any of the following:

  • Temperature greater than 100 degrees F for more than 24 hours
  • Swelling, tenderness, redness, unusual drainage from your incisions
  • Nausea, vomiting, or shaking chill

Information from John Hopkins Medicine

Recovery Time After Surgery

Recovery varies by patient, and every recovery is unique in its own way. Some people are ready to go within days of surgery, others take a few months to fully heal. Typically, patients who have  laparascopic surgery heal within 1-2 weeks, and those who have an open surgery heal within 5-6 weeks. During this time you should follow your surgeons instructions to take care of the surgery site(s), and be careful with lifting and bending.  


Patients often report pain around the incision site, a feeling that a part of them is "missing" (a hollow feeling where the tumor was located), and a slight disorientation during the weeks of recovery. These symptoms and feelings are temporary, and vary by person on how long the symptoms last. 

After Surgery Follow-up Visits & Screenings

We cannot stress enough that recovery varies by patient. One patient may only need two follow up visits with a surgeon (to check out how the patient is healing), and a yearly oncology follow-up for five years. Other patients may need several follow-up visits with the surgeon, and multiple follow-up visits with oncology and neuroendocrine doctors each year. That being said, this is a typical follow-up scenario (in order):


  • 2-4 follow-up visits with the surgeon to ensure the patient is healing correctly and address any problems that arise.
  • 1 yearly visit with an oncologist and/or primary care physician for five years to do a yearly urine screening. 
  • 1 visit with a primary care physician every five years for a urine screening (after the first five years have been completed with no re-occuring pheochromocytomas).

Common Feelings, Sensations, & Issues After Surgery

These are some feelings, sensations, and issues that are most commonly described by pheochromocytoma patients after the surgery site has healed:


  • Disorientation
  • Changes in food tastes
  • Short-term memory problems
  • Anxiety and panic attacks
  • Erratic blood pressure
  • Changes in menstrual cycles
  • Sleep problems
  • Mood swings
  • Emotional "numbness"/lack of emotion
  • Tremors/Shakiness
  • Hot flashes
  • Weight gain/loss swings, issues losing weight
  • Sensitivity to caffeine
  • Depression
  • A feeling of loss

Most of these are caused by your body going through dopamine withdrawals (see below for more information), and are temporary. Some patients have reported these feelings, sensations, and issues lasting well into two or three years while their bodies balanced back out. Patience is key here, but do not hesitate to contact your doctor if you're concerned.

Dopamine Withdrawals

Nearly all pheo patients go through a crazy time in the weeks and months (and on the rare occasion, more than a year) following the removal of the tumor (and often the area of the body it is attached to). Many of the problems such as: disorientation, anxiety and panic attacks, erratic blood pressure, sleep problems, mood swings, a feeling of emotional "numbness" or a lack of emotion, feelings of tremors and shakiness, hot flashes, issues controlling weight and weight gain, a feeling of loss, depression, and a general feeling of being mentally imbalanced or "un-level" occur in patients after surgery. 


The intensity of these feelings and symptoms varies, and appears to be linked to how long the patient carried the tumor (how long their body was in a consistent fight-or-flight mode). It's believed to be caused by dopamine withdrawal. Yes, the same kind that is linked to drug addiction and the withdrawals that a drug addict goes through. Even if the patient has never done an illegal drug in their life, they can still experience the exact same withdrawal symptoms. 


Think of it this way: the entire time the pheo is inside the patient's body, the body is in a fight or flight stage. The patient constantly lives in a dopamine-fueled state. Dopamine is linked to drug addictions, and when an addict goes cold turkey their body goes into dopamine withdrawals. When the pheo is removed from the patient, their bodies go through the same dopamine withdrawals and the same process that a recovering addict goes through.


Combine that with the hormonal emotional roller coaster the single (or in some cases, lack of both) adrenal gland is putting the patient through as it learns to function in a non-fight or flight stage.


Now add in this fact, pheos are clinically known to make patients undergo psychosis of some sort, and a lot of new emotions that had been suppressed (sometimes for years) are able to finally bubble up to the surface. Many patients describe having  forgotten what feeling "normal" felt like.


It's all combined together in a way very few can understand. It's disorienting, confusing, and very scary at times for a patient.


For patients: 

Please, remember that you are not alone in feeling this way. 

Many of us have been there. It does pass and you do feel, "level" again.

However, if you feel suicidal or like you are a danger to yourself or others, you should call 911 (in the United States) or the National Suicide Prevention Lifeline at 1-800-273-8255.

Adrenal Fatigue

Adrenal fatigue is, well, an exhausted adrenal gland. Adrenal Fatigue is considered to be a "false" or "unacceptable" medical diagnosis*, but it does appear to happen to some patients after a pheochromocytoma is removed. It is also known as adrenal insufficiency. It is diagnosed by blood tests and stimulation tests that show low levels of adrenal hormones.


Signs of adrenal insufficiency/fatigue are:

  • Tiredness/fatigue
  • Body aches and pains
  • Unexplained weight loss
  • Low blood pressure (repeatedly, not sporadically)
  • Lightheadedness and dizziness
  • Loss of body hair (large amounts)
  • Skin discolorations

One claim that is common in the "pheo world" is that the cause of adrenal fatigue/insufficiency is that the remaining adrenal "shuts down" due to the lack of an adrenal gland, or because the adrenals were so overworked in a steady fight-or-flight before the removal of the tumor. Unfortunately, there is no medical science to back this claim up, and it is largely considered false in the medical world. It is worth to note however, that adrenal fatigue/insufficiency is most commonly reported in patients with MEN2 type tumors. 

*According to the Mayo Clinic, "The term often shows up in popular health books and on alternative medicine websites, but it isn't an accepted medical diagnosis... The unproven theory behind adrenal fatigue is that your adrenal glands are unable to keep pace with the demands of perpetual fight-or-flight arousal. As a result, they can't produce quite enough of the hormones you need to feel good. Existing blood tests, according to this theory, aren't sensitive enough to detect such a small decline in adrenal function — but your body is."