Monday, November 12, 2012

Pheochromocytoma- Monday Zebra

Condition- Pheochromocytoma

Pronunciation- fee-oh-crow-moe-sigh-tow-mah

Rarity- Very Rare

Difficulty in Diagnosis- mixed, while there is a test to diagnose this condition, finding a doctor that will know to test for it can be difficult.


     Pheochromocytoma is a rare endocrine tumor that is usually located on the adrenal gland (the adrenal glands are located on the kidneys) and are often referred to as "micro tumors" because they tend to be very small, though their impact can be startling because they release adrenal hormones and can cause dramatic symptoms.

     The symptoms of Pheochromocytoma can mimic many other conditions and for that reason can be very difficult to get a diagnoses because, as the saying goes, when looking for horses no one ever looks for a zebra.  Basically, this means that Physicians will often test for and treat the symptoms of the disease because often the most common cause is the correct one.

     It is only when symptoms intensify and do not respond to conventional treatment that a Physician might consider looking at the more rare conditions... but even then there are so many conditions that cause the same symptoms that it is like trying to find a needle in a haystack of possible ailments.

     The symptoms of Pheochromocytoma are-
  • Excessive Sweating
  • High blood pressure- uncontrollable high blood pressure and hypertensive crisis
  • Rapid heart rate- also known as tachycardia
  • Forceful heartbeat
  • Profound sweating
  • Abdominal pain
  • Sudden-onset headaches - usually severe and of varying duration
  • Anxiety
  • Sudden uncontrollable rage
  • Feeling of extreme fright
  • Pale skin
  • Weight loss
     If a pheochromocytoma tumor is suspected the first test that will be given is a 24 hour urine test which will check for certain hormones released by the adrenal glands.   If this test comes back elevated the next test to be done would be a specialized scan to locate the tumors.  The most common place for them is on the adrenal glands, but they are not ALWAYS located there and because of the size of them (as stated before, they are micro-tumors for the most part) they can be very hard to find.

     The only 100% reliable treatment for a pheochromocytoma tumor is to remove it, because it will constantly release hormones and the symptoms can be very hard to manage with traditional medications or can be impossible to manage.

     Surgery to remove these tumors must be done with great care by a specialist because anesthesia issues can be common and blood pressure can go into hypertensive crisis even under anesthesia.

     There are many good websites for more information about this condition such as the one by the Mayo Clinic where you can find out more... but here are some interesting facts about this disease.

  • Most people are diagnosed with a pheochromocytoma between the ages of 30 and 50.  Though it can happen at any age it is even more rare in those younger than 30 years of age.
  • Most pheochromocytoma tumors are actually found in autopsy!
  • Eating foods or drinking beverages with vanilla in them can affect the 24 hour urine test!
  • Most pheochromocytoma are benign
  • It can be hereditary 
  • There could be a single tumor on one adrenal gland, one on both or they could actually be anywhere in the body but will still release adrenal hormones no matter where they are.
     Thus ends the first of what I hope to be many "Monday Zebra" posts about Rare and/or Incurable Conditions.  Keep an eye out every Monday as I highlight another condition to help spread the word about the world of rare conditions out there.

     If you have or know someone that has a Rare and/or Incurable Condition that you would like to see featured, please contact me and I will add it to the list of conditions that will be brought forth into the Snarky light every Monday.

Instigating for a Cause

     I enjoy a good bout of instigating... the act of getting an idea out there and watching as others take the idea and run with it.  Usually then things are instigated it is a bad thing, but this will definitely be for a good cause... or causes as the case may be.

     I have decided that every Monday there would be a post about Rare and/or Incurable Conditions that have little awareness... my way of not only offering a little education about some very fascinating conditions but also giving voice to those that suffer.

     Many of the posts will be done by me, but every once in a while I will invite a guest blogger to give their first hand experience about their life with the condition to which I will add links on medical information, testing procedures and more.

     This will also give any readers that wish to chime in a chance to share their own story and life experience because I will ask from time to time for volunteers to step forward and put a face to the conditions and will welcome suggestions.

      The first "Zebra Monday" post will be coming later today... so keep an eye out because this one will be a dozy... hard to pronounce and harder to find this condition will amaze you and hopefully the post educate you.