When we think we know.....we don't.....
Last week I was diagnosed with an acoustic neuroma as per MRI which was read by a radiologist and then confirmed by an ENT. Today I went for my first consult with a well known ENT and Neurosurgeon in New York. After looking at it over and over again, and based upon my symptoms (some facial paralysis which is dissipating, and no hearing loss) they both said..."its not an acoustic neuroma". Then, what is it? Well, it could be a facial schwanoma, it could be nothing, or it could be an adenoid cystic carcinoma (the c word). They immediately set me up (today) for a PET scan which would rule out the Cancer. If turns out not to be the carcinoma, they may do nothing since they have no idea how long its been there, what it is doing, and if it is growing at all (if you remember, my symptoms started with an Ear infection, followed by fluid in my ear and then some facial paralysis). This means I could have simply had Bells Palsy and this is just an incidental finding, or it could be much worse.
My point in all of this is: No matter how much we discuss these things, no matter how much we read studies upon studies, we are not doctors. Both Dr. Costantino and Sen were wonderful. They did not alarm me, were deifinitely caring and did not talk down to me. I was part of the discussion on an equal level with them.
In addition, all of my preconceived notions of how they would react to radiation vs. surgery were just that. Neither does the radiation, but said, without hesitation that if it were not a carcinoma and if it had to be treated, that they would have absolutely no problem with radiation. They did suggest that if I were to receive radiation I should do it at U of Pitt under Lundsford (who did the huge GK 10 year study). They also said that if either one of them needed microsurgery, they would go to Brackman at House. They said that while many other doctorrs are good, there is no reason to go to Hopkins, Stanford, etc...... That may reflect some personal feelings on their part, but I felt they were simply stating facts as they "knew them".
So, in conclusion, if there is one at this time, all I want to impart to all of you (and I know I am new here and probably do not have any right to do so) is that while we should use each other as wonderful resources, while we should use our brains as wonderful resources, we should ultimately let the doctoring up to the doctors, and to try to remain calm, cool, and as objective as we can, until a professional gives us the final word. Medicine is certainly not an exact science especiallly when it comes to tumors of the head and neck, but no matter how much we know, we still do not know as much as those to whom we are placing our health and lives.
I will continue to fill you in as I continue to find out more information.