Okay... on with my blog.
I know, especially for the newbie, how at a loss one feels when the task of finding a physician to treat your AN becomes necessary. It’s like the search never leaves your psyche, day or night. The research is stressful, I think, because you are hyper focused on your AN the whole time, and that is many, many MANY hours.
Every day, for many years, I’ve said a prayer that God will surround me with incredible people that will make me better spiritually, professionally, physiologically, emotionally. Now I add “make me better physically” , and I mean it literally. I search and search for the right doctors and visualize them surrounding me and saying “I think you will breeze right through radiation” and/or “your surgery was a slam dunk.”
I am blogging my perusal in hopes of easing anyone else’s stress in any way. A name, an address, a tidbit that might resonate.
From the start:
I had a very good ENT, Dr. Douglas Leipert in South Bend, IN. I say he’s good because I went to him thinking I just needed some wax build up taken out of my ear (hearing loss) and he nailed it as an AN that very visit. He gave me a hearing test, looked at the results ( I still had 88% and could hear okay ) and said he suspected an AN, sent me straight to an MRI. No messing around; so many people take years to get diagnosed properly. Dr. L sent me to Dr. Michael Disher, a board-certified neurotologist at Indiana Ear in Fort Wayne, IN.
Dr. Disher and Dr. Chang, Fort Wayne Indiana
I find Dr. Disher extremely easy to talk to, very calming and caring. Dr. Disher told me my three options. (you know what they are) and I decided to watch and wait. He agreed. Dr. Disher’s advise to me, now that I have seen him three times during watch and wait, is to continue to wait. He said my tumor is still “small” and my symptoms are not severe. He suggested that rushing in to a choice of radiation or surgery isn’t necessary at this point, and he told me that he has a colleague at Ohio State that is working on a medication that would shrink ANs. He suggested that I try to relax and stop stressing so much, that my stress was probably my worst symptom. I agree with that! Thus, I find Dr. Disher to be “conservative”. I like him very much. But.... I think I need to explore treatment. He told me in that case, he thought I would do well with cyber knife. His office made an appointment for me with Dr. Brian Chang
at a graduate of Johns Hopkins University and Tufts University School of Medicine. Dr. Chang has been at Radiation Oncology Associates at Parkview Hospital in Fort Wayne since 2007. Dr. Chang must be very busy, I couldn’t get an appointment until February. I’ll let you know.... In the meantime, here is Dr. Chang talking about Cyber Knife
http://www.youtube.com/watch?v=xw1qqN5hR34Dr. Brown and Dr. Hass, Winthrop Hospital, Long Island NY
My first “interview” with a doctor and radiologist was in Long Island, NY. I heard of a doc through a friend that is a brilliant neurosurgeon and director of cyber knife at Winthrop Hospital in Long Island. Here is a link:
http://www.winthrop.org/departments/clinical/cyberknife/physician.cfm?jeffrey-brownI found Dr. Brown to be as brilliant as his reputation (in the short 20 minute meeting I had with him at his Long Island office). Dr. Brown told me that he recommends cyber knife, and he does BOTH GK and CK, and preferred CK for me. When I asked about surgery is said “no, I do not recommend surgery for you!”
I asked if I should watch and wait and he said “why? why have this hanging over your head? Get it over with!” He said he wanted me to meet his “team” and sent me over to Winthrop Hospital where I met Dr. Hass, the radiologist that works with Dr. Brown. Loved Dr. Hass. He once again went over my options, and told me that “you can still watch and wait, your tumor is small”. And he added “ but if you decide on cyber knife, we will take very good care of you.”
I liked the team of Dr. Hass and Dr. Brown at Winthrop University Hospital. My hesitation in choosing this team is:
My insurance covers Dr. Hass but not Dr. Brown
Long Island and Winthrop Hospital are not easy to travel to from Michigan. The travel involves planes, subways, trains, hotels that are not close to the hospital.
Most importantly, Dr. Brown is a brilliant, wonderful doctor and specializes in brain tumors, facial pain, Neurosurgery and Cyber Knife. But his specialty is not the treatment of ANs. When I asked him how many he had treated, he said “about a dozen”. I was hoping he would say “about a thousand”. Still, if my insurance covered Dr. Brown, I might choose to go to Winthrop. I immediately trusted him and Dr. Hass, too.
This is my doc search up until July. Lots more to come, but I’ll post this to get started. Next up... I sent out 8 packets (My MRI and all hearing tests) to the most well respected, AN experienced docs I could find, many of them supposedly review for free. Hmmmm... I’ll tell you how all that is going next!
Have a wonderful weekend and here is something funny..... my cell phone was ringing a few minutes ago, but I thought it was my ear ringing so I didn’t answer it.
But yep, there is a message saying “missed call”.
