Follow up MRIs

[Moselle]

In April I was diagnosed with an acoustic neuroma on my left side of brain.  That’s what the MRI shows.  It’s the cause of my sudden deadness in left ear.  I had a couple consults.  I live rural and the surrounding area and closest town is 35 min away.  I originally had an ENT get the MRI ordered but they made it clear they don’t want to see me anymore cause they don’t have the expertise with this.  In fact it seems no one within 8 hours knows anything about it.  So now I want to do a follow up MRI and thought from my consult with San Diego  they would order it.  But seems a change of protocols since May.  I don’t have a primary physician since I don’t have any health issues except this tumor thing now.  I do have the VA.  Maybe they could order me an MRI.  It frustrating when trying to get an MRI and it will take me a 2 hour drive one way if I get one through the VA and another trip to pick up cds.  Should I seek another consult from another place more willing to monitor my tumor and order MRIs that I can get at the medical center  30 min away like I originally did?  I never did order an online MRI cause I would still have to drive a 4 hour drive one way.  Maybe the tumor hasn’t grown.   But guessing isn’t the best.  Anyone know of specialists that are easy to work long distance with?  Do you think it’s because I have Medicare insurance I can’t get decent help for a simple follow up?

[donjehle]

Hi Moselle!  Thanks for the update!  It is good to hear from you again.

As I recall, you had a consult with Dr. Friedman at UCSD.  Did you ask him if he could order an MRI for you in a hospital setting near where you live?  Have you seen an ENT doctor?  How were you diagnosed with the acoustic neuroma?  Whoever diagnosed it should be able to order the MRI, especially if you explain to them that Dr. Friedman at UCSD needs an updated MRI.

You clearly do not want those who do not have expertise with acoustic neuromas treating you.  So, I commend you for being cautious about that.

If you do get it at the VA, they should be able to send the DVDs directly to Dr. Friedman.  I have had hospitals where I had MRIs done mail the images to specialists on the other side of the country.  I don't know why the VA would not be willing to do that.  You should not have to make another trip.  At the very least, they could mail the images to you, and then you could mail them to Dr. Friedman.

You might want to check with Dr. Friedman's office and see what they recommend.

I wish you the best in following up on this, Moselle!
Don

[Moselle]

Hi thanks for your reply!  When I had a consult with Dr Friedman he said he could order it.  And now that the 6 months are up I called his office and asked to have him order it and I got an email back from his office secretary that said due to protocols they won’t order an MRI if I’m not a patient of theirs.  So now I’m back to square one.  The ENT that originally ordered it won’t see me and referred me to an ENT about 4 hours away and they never called back or responded.  So looks like I will have to call the VA and request it.  They seem the most helpful.  I have an appointment to get fitted with a BAHA non implanted hearing device in December.  I made an appointment for a new primary physician nearer to me that isn’t the VA.  But it’s just nuts.  I’m working now and I don’t tell anyone about my tumor or that I’m deaf in one ear due to it. I carry on like I don’t have a tumor. 
Another option is to call UCLA and inquire about that referral to a brain surgeon there and see if they can give me an order for an MRI.  I’m disappointed with San Diego  now.  Makes me want to reconsider my options.  Or do nothing. 
The good news is I am not feeling tired as I  had been for a while.  Mostly disappointed in the lack of understanding when it comes to trying to get a dang MRI and I get the run around from a distinguished and well known and recommended brain surgery center.  And other specialists too.  It’s not like I’m about to kick the bucket and a hopeless case.  I did a 4 hour pack horse ride in the mountains the other day.  And I don’t have any other medical issues.  Anyway I’m on wait but not able to watch option for now. 

[Moselle]

Okay. After a day and night of frustration and anger I got busy on the phone.   I made several calls and getting a consult with UCLA in Dec with a brain surgeon and the VA Primary dr can order me an MRI.  Hopefully the mass has not grown.

[tsaff88]

I've had VA coverage in the past. In my opinion your best bet is to get all your MRI's through the VA. The co-pays in the civilian world can get pricey. Plus you can get mileage reimbursement from the VA. Although the Neuroma is not service related (I asked) they will cover all your hearing needs including new hearing aids every three years, which will also save considerable money.