How often do you visit the TOG?

[Captain Deb]

You know what I mean--the Tube O' Gloom.  I had a one-year MRI in 2004 looking for a possible cause for my daily migraines.  Another in 2006.  None since then as I have had so many other health issues to deal with I just can't bring myself to go back there.  Have had to have MRI's on 5 different body parts in the past 2 years--neck, lumbar, chest, neck, pelvis.  Each one costs me a couple hundred bucks.  I'm probably due for an IAC one this year.

How often do you MRI and what was the size of your brainbooger?

Capt Deb

[opp2]

Apparently 4 times a year!

jk...

Because this is my first year, I had one in April 09 for the diagnosis, June 2009 for the first surgeon I saw, Oct 2009 for the third surgeon I saw (that I thought was for Akagami) and just his week for Akagami at the 6 month mark from the last one.

[Kaybo]

Capt'n Deb`
I had to have one a year for 5 years...& then really didn't have to have any more.  About every 5 years or so, it seems I get a little antsy and I have headaches (never mind that has coincided with something major going on in my life - like say 2 babies under 2!) so I have another - just to kind of ease my mind!   

I don't know the exact measurements of my tumor but the medical term was "huge" and the Dr. told my family after surgery that it was the size of his fist...

K   

[lori67]

I had one at one year post op and then was told I didn't need to have another one until I was 5 years post op.  I chose to have one - just today actually - at my 3 year post op point because I am in a different state with different doctors, and because of some new information regarding my dad's AN - seems he actually had 2, not one.  My doctor and I decided that it was a good idea to just have one done, if only for my peace of mind.  If this one is okay, and I have no reason to believe it wouldn't be, I will probably have another one done in 2 years.

My AN was 3cm.  You should probably think about having one - just to make sure things are okay in there!

Lori

[yardtick]

I have one about every 9 months. 

Nice picture by the way!!

Anne Marie

[tenai98]

one every six months for now...2 in 2008 when first discovered...1 in 2009  6 months after surgery, so far 1 in 2010 and another scheduled for August...oncologist told me every six months for two yrs to make sure residual tumor is not growing then once a year from that point on
Jo

[nteeman]

Once a year for me. I don't get all this Tube Of Gloom stuff.  I think MRI is one of the easiest, least discomforting medical tests that I have ever experienced. You lay there for 45 minutes or so. No problem. Now if I had to get a spinal tap every year THAT would be glooomy!

Neal

[Cheryl R]

TOG also depends on what your outcome is or might be.      I have been anywhere from 6 mo to a year depending on what has been going on with me and my more than one tumor.     I am now back to a year again.
                                                    Cheryl R

[cindyj]

Doc Friedman requests a one year post op one and then not again for 5 years...he's probably been looking for your follow up MRI  for about a year or so now, Capt   But, I hear you about so much else going on and not wanting to do one more...I came very close to not even doing my one year follow up.  But, you know you should go ahead and get it done...let us know how it goes...

Cindy

[lori67]

So, for some it's the tube of gloom, for some it's the tube of rest and relaxation and for Neal it's the tube of sheer pleasure.

To each his own!

Lori

[Debbi]

Hey Deb-

I agree - nice picture!

I had 2 the first year (every six months) and now yearly for 5 years.  Then probably every two years.  Since they left a tiny bit behind, I think I'll always
 get periodic MRI's - and I'm okay with that!  I walk in with my valium clutched in my sweaty little fist, gulp it down when instructed, and the rest is pretty easy (well, I DO make Willie sit in the room with me and hold my foot so that he can yank me out in case of a nuclear holocost or anything...  )

You should go, though - I know you've been through the mill in the last few years, but better to face the TOG. 

And, Lori - your dad had TWO???  Please shoot me a note and let me know as soon as you get your results - keeping fingers crossed.

Debbi (the other one...)

[Syl]

Had an MRI 1 yr post-op & will be having my 2 yr MRI in two weeks.

Syl

[Lizard]

My Dr's have told me 3yrs of yearlies then 4 years of every other year and then if everything looks good we'll go to every 5 years.
Have you ever had an open MRI?  If they're not comparing the other MRI as a baseline, or even if they are you might be able to do that type instead.  Much easier to deal with in my opinion. In all seriousness you really need to keep up with the MRI's...sooooooo important as I'm sure you know!
Liz

[Captain Deb]

The TOG itself doesn't bother me at all--they have headphones and Jimmy Buffet and I get to listen to "Why don't we get drunk and sc**w" but they don't let me sing along like I like to cuz I gotta hold still!  It's just the cost that stresses me out.

Capt Deb

[Jim Scott]

It's just the cost that stresses me out.

Me, too, Deb.  

I had my last MRI in 2008.  Things were looking fabulous (necrosis/shrinkage) and I've felt great since then with no issues.   Unfortunately, that was my last eligible year on Blue Cross.  I'm now on Medicare with Blue Cross as my secondary insurer.  That means a 20% co-pay for the MRI.  Blue Cross won't pick up the remaining 20%.  My wife has a bill we're still paying off for surgery she underwent (implant of a neurostimulator to help alleviate nerve pain in her leg) last year at the same hospital where I have my MRI scans (and where I had my AN surgery).  The harsh reality is that I really cannot afford another hefty medical bill at this time.  

I figure that because I have no symptoms (and I'm very sensitive to any possible AN-related changes), my neurosurgeon - a very cautious, conservative doctor - hasn't called and asked me to have a 'fresh' MRI and it's only been 2 years since my last MRI, I'm good.  Of course, should any AN symptoms reappear, I wouldn't hesitate to call my doctor and have him schedule an MRI, even if I had to extend my payment plan to the hospital a few months longer or, gasp, put the co-payment on a credit card.  I'm not wealthy but I'm not stupid, either.

Unfortunately, at my age and with the new government health care law, in the near future I may not be able to get an MRI at any price - but that's another story - and another thread.

Jim