Thank you, Colleen,
It is nice to have a connection with people on the same road. This journey can be very lonely, frustrating, confusing, and frightening.
I was correctly diagnosed, after I informed my family GP in Zimbabwe of the possibility, that the swelling on my neck was not mumps or lymph nodes. He had not heard of Carotid body tumors. Not unusual, I have come to learn. The dentist I worked with liked to say that most GP's knew nothing about the body from the neck up. 😉
My father had huge swellings bi-laterally from untreated CBT's, misdiagnosed, and an attempt had been made, years earlier to unsuccessfully, to remove one!
I had to travel to South Africa to have mine which was then 5cm removed. I later learned that this surgeon pioneered the procedure, removing the branch of the Carotid artery it was clinging to.
I had another on the other side removed when I was living in South Africa.
There were no follow-up treatments, observations, or checkups.
When I was living in Atlanta I felt the beginnings of another in my neck and, the ENT referred me to her professor as she felt it was not a CBT.
It was a Paraganglion encapsulating my vagus. They decided to remove it along with part of my vagus, paralyzing my vocal cords and leaving me with many troublesome side effects.
They did inform me that I had another growing on the other side of my neck, but rather than surgery, they advised targeted radiation, or I would end up with many disadvantages.
The Radiologist they referred me to had treated 5 patients in his 25 years.
It was the way to go and I think, how I will proceed with the new one I have growing on my vocal cords, or not treat it. This tumor is so slow-growing. Unless it is life-threatening, I could bide my time.
It is traumatic though, and I do understand this is common with rare diseases, that it is so difficult to find anyone to advise and treat patients. We have to spend so much time and energy trying to find someone to treat us. I have become the initial source of information for my family living in South Africa, who all have this, as well as our cousins on my father's side. We share information, war stories, symptoms, and, "Do you have this, did this happen to you after surgery, tell your doctor this," conversations.
My geneticist gave me a letter to pass on to my family about screening their children for this gene mutation. The Pheo Para alliance has a lot of information, but they can also only do so much.
Sorry for the long rant.