Hello Teresa and thank you for having me!
I have had symptoms, but, as many people, had no idea what Neuroendocrine tumors are.
About a year and half ago my blood pressure started to sky rocket. Highest we recorded was 247 over 185. I could feel my own hair grow. Started loosing body hair about the same time. Life long migraine sufferer, I got a new type of migraine/headache. Something new, different pain altogether. This one starts at the top of the head (crown) and feels like the neck or the muscles that move the head are locked up. Not an immense pain like ocular/nasal type migraines (sparkles in peripheral vision) or the terrible back of the head ones that shift in the spine and explode with any movement. I have had a history of concussions from playing hockey and being hit by drunk drivers.
My primary has retired and my new guy (counting my blessings) is a classic hands on diagnostician. Old school. I have noticed a small lump in my neck on the left side around Christmas holidays, thought it was just some scar tissue from being hit with a puck.
My new primary felt this thing and ordered an ultrasound. After the ultrasound, immediately he ordered a CT of the neck. After that in a matter of days he had me visit an ENT. All here in Houston, TX. ENT (two of them) inserted a camera up my nose and confirmed carotid body paraganglioma. Absolutely no biopsies.
Blood, urine, and 24hr urine cathecolamines tests produced different results. At one point I am through the roof, other test I am in 80 -90% normal.
Great friend of mine is a geneticist and said that from his understanding, carotid paragangliomas do not secrete much, if they do is norepinephrine. If you have elevated epinephrine, dopamine, and norepinephrine all together, one must have some extreme odd ball neck para, or most likely answer is that there is another one somewhere, most likely an adrenal gland resident. During the very initial exam, my red blood cell count was very high, urine even more than blood. I was referred to the urologist, during the exam he found a spot on the left kidney that when pressed literally made me scream. Again, this was before any of the Ultrasound, CT, ENT, etc.
Urologist has me scheduled for a scan next Friday, also a camera "through the front" to look at gold bladder and kidneys.
My endocrinologist has ordered a ganglioma specific PET scan, there is a nuclear formula that supposed to make this things light up like lasers. To see if there is a second one. He was the third person to tell me that secreting carotid pargangliomas are rare, ones that secrete anything other then norepinephrine, you get to name :-).
I have a PET scan tomorrow as well as geneticist and another blood/urine drive.
From the genes question, if anybody has mutations, have we heard of SDHAF2? Also, has anybody had both paraganglioma and pheochromocytoma develop? What typically comes first, chicken or an egg?
My surgical consult is Monday at MD Anderson. Just out of curiosity, if you have both, what is a typical process? Take one out first?
Sorry if its too much information.
Thank you for welcoming me to the forum.

Coach V

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