Looking for doctor to manage my neuroma 4 years after GK

[Agate]

I am from MN but had my GK 4 years ago with Dr. K in Pittsburgh.  They have been ordering my MRI's and I have been having them done here in MN.  They are sent to Piitsburgh to be read and then I get a written report.  I have always found it a little difficult to doctor from a distance.  Since Dr. K has left Pittsburgh, this seemed to be a good time to find a doctor closer to home.  The problem is that neurosurgeons (Mayo and another GKcenter) don't want to manage my MRI's.  in my research on line - I have not found a neurologist that has experience with acoustic neuromas.  Has anyone experienced this kind of issue.   It would be nice to actually have a doctor to talk to after my MRI's or if I have any concerns.

[arizonajack]

There's a support group in MN. You might contact their leaders for some help finding a local AN specialist:

Leader: Yvette Adele Spratt
952-843-3370
asonginmyheart@spratt.us
 
Co-Leader: Terrill James
612-423-2422
twjames67@yahoo.com

They are having a group meeting in the Minneapolis/St Paul area on July 13.

If you are close enough to attend, you'll have plenty of people to talk to.


 

[nftwoed]

Hello;

   I would call the Mayo OTO appt. desk anyhow, tell them you had an AN radiated and would like to schedule an appt. with Dr. Link as you are well out of your service area. You didn't go to Mayo before GK, did you?

[Agate]

I did go for a consult at Mayo and decided to have my GK in Pittsburgh.  When I talked to Mayo a couple of weeks ago, they would not manage my MRI's - they did check with Gamma department and they would not either.

[arizonajack]

I did go for a consult at Mayo and decided to have my GK in Pittsburgh.  When I talked to Mayo a couple of weeks ago, they would not manage my MRI's - they did check with Gamma department and they would not either.

Simple explanation for that. Greed. They didn't get the big bucks for your GK so they don't want to know you now.

Truth be told, there isn't likely much to manage after all this time.

You've been monitoring your tumor for 4 years. What's happened to it? Has it shrunk? Hope so?

If it has, I wouldn't be too concerned about MRI management. Just keep getting them at appropriate intervals and get the reports. As long as it's good news, that's all you need.

[robinb]

Have to agree w/AJ-

The way I figure it, if I had a local doc, they would make me come to office rather than the phone/emails I have weekly w/Dr. Lunsford's office. My copay is $60, that would add up fast. It costs 0 for the phone/emails. I don't see what benefit face time would get me to counter the financial drain.

If you want a good contact at UPMC, just PM me. I don't communicate directly w/Dr. Lunsford, but we have emailed and I am very comfortable with dealing with the PA there. I know that when I send my weekly updates via email, he is seeing them before the PA responds back to me. I get a response the same day 95% of the time, and always by the next day. Most of the time by phone.