First neurosurgeon appointment was today!

[alibauer]

Hi Guys,

My ENT was clueless about my tumor (as I mentioned in other posts). The whole thing made me feel really freaked out. Today I visited a Columbia University trained, NYU neurosurgeon, and it was like a different world. He seemed really knowledgable. He gave us all the time we needed to ask all the questions that we wanted. It was amazing! He even admitted that he is not the one to do the surgery, considering that most neurosurgeons, including him, don't have a lot of experience with neurofibromas that are so far off of the spinal chord.

He recommended a colleague that is well trained in my condition and may be the one to remove the sucker. I'm still set on the surgery, although watching it is an option. It doesn't feel like an option to me though. There is an outside chance that this thing will be significantly larger in 6 months. I would never forgive myself if it caused more nerve damage than it would have if I'd gotten it out right away.

Final confirmation that it is not an AN. What a relief. The nerve damage will be in my left arm with no loss of hearing or facial function  . Yes!

Feeling so much better lately.

Ali

[stein78]

Good to hear Ali, glad you are getting some clarity.  Best of luck!

[becknell]

Ali, we had a similar experience with an ENT when my husband was diagnosed. The guy had to have known what an AN was, but all he told my husband at the initial diagnosis was that he had some kind of benign tumor in his head and would have to talk to a neurosurgeon. When my husband tried to ask questions, the ENT basically said, "I don't know. You'll have to talk to a neurosurgeon." My husband said the ENT seemed very nervous, too. Evidently he had no idea how to talk to someone about bad news. He didn't even tell my husband the name of the tumor, so we had to go to the neurosurgeon to find that out. It made me really angry, because I'm sure he had some idea what an AN is (the name of the tumor and the size was on the MRI report, after all) and he just didn't want to give my husband the time to sit down and talk to him about it. Needless to say, he won't ever be going back to THAT ENT!!!

[matti]

Hi Ali - Glad it went so well with the neurosurgeon and that now you are finally getting all your questions answered. I have been worried about you! I am with you, when I was diagnosed, I  wanted the sucker out ASAP, before it did anymore damage. How is your Salivary gland? Did you get the stone out yet?

Take it easy and have a great day!

Matti

[alibauer]

Thanks for your comments everyone!

Beck - I can completely relate to the frustration. I was going to stick with my ENT for the salivary duct stone I have, but I now realize he is completely negligent. Specifically, he did not even read the CT Scan that he sent me for as a follow up to the MRI that first spotted the tumor! I'm not even going to get in to how we figured that one out.

Matti - Nope, still haven't "milked" out the little trouble maker. I don't think it's budged a bit, as a matter of fact. Oh well. No real salivary symptoms. Just the occaisional minor shooting pain. I'll take care of this stone once the tumor is out of my neck!

Went to another neurosurgeon. More about that in another post.

Ali