NYC Neurotology Appt.

In the interest of keeping up-to-date:

I received the results of the blood tests ordered by the Otolaryngology Surgeon in VT, they were normal with a slightly low level of PTH, which is consistent with having the blood drawn at 2pm without fasting beforehand.

On Monday, June 14th I went down to New York City to NY Ear and Eye Infirmary to meet with Dr. Christopher Linstrom, the chief of Neurotology.

Dr. Linstrom tested my cranial nerves and determined that the tumor is mostly affecting the Vagus nerve, as had been suspected by the doctors in VT. After ordering a hearing test, which came back perfect I am not ashamed to say, he went over the MRI and CT Scans with Dr. Holiday (I kid you not), a top radiologist and film reader. Together the doctors concluded that they believe the tumor was misdiagnosed as a Vagal Paraganglioma, and is in fact a Vagal Schwannoma. This finding basically means that they think the tumor is not vascular and does not need embolization before surgery. Besides taking out the risks associated with embolization, this means little to me. On the practical side, however, it does push back my surgery by a month or so as they order more tests to determine with absolute certainty which type of tumor it is. One concern was that by looking at the cross sectional views of the tumor, it looks as though it has a different density in the middle as it does on the outside, which is inconsistent with either a paraganglioma or a schwannoma.

Anyway, I have an octreotide scan scheduled in VT for Monday and Tuesday, and will be following up with Dr. Linstrom and his associate Dr. Murali, chief of nuerosurgery at Westchester Medical Center in NY, and chairman of neurosurgery at NY Medical College, in order to hopefully schedule surgery.

I have definitely found the experts! *Oh, and Dr. Linstrom said he would NOT cut my jaw in half (I like him better already!).

Thanks for your thoughts and prayers!

~HH

Hi Everyone!

Dan and I just got the internet in our apartment, so as you might have guessed, I am not that technologically savvy. That said, this is my first attempt at publishing things online.

I am hoping this will be an efficient way to help keep everyone connected with me and my current medical situation, as well as the latest news from tests and doctors, and later this summer, surgery.

As most of you know (thus, why I have this blog) I was finally diagnosed with a tumor this May after having a chronic cough for 3.5 years and seeing numerous doctors. *See tab above marked "Timeline..." if you really want the details.

Anyway, I will try to stay up-to-date and I appreciate any feedback, especially just to know that there is someone reading.

~HH