Still Riding the Watch and Wait Train

[ANER]

Had my 6 month MRI last Month with Dr. Mckenna from MEEI in Boston.  He reported no detectable growth!  This was my first scan since being diagnosed and he set me up for another scan in 12 months.  Anyone else think waiting 12 months for you second post diagnosis scan is a long time?  I mean had, I had a couple no growth scans i'd be at ease but just one, I figured they throw me in that little submarine in the fall.  Thoughts?

[mac84]

Good news! Glad you're still on the W/W.

When I went to 12 mos between scans I was nervous too. I guess that's my question as well...I'm around 1.3 or 1.4 cm so if I wait 12 months then is there a possibility that it grows so much that I miss the chance to do GK and am forced into surgery? I'm firmly in the GK camp for now (if I ever have to get it done) but if it grows rapidly after you're already at a medium size I might be out of luck.

Will let others weigh in.....

[ANGuy]

I had 3 or 4 scans at 6 mos intervals with no growth before being changed to annual.  I think these Drs base their decisions on research, personal experience, and some "seat of the pants" flying.  I don't think your Dr or my Dr is wrong even though they chose a different MRI schedule.  In the grand scheme of things, they aren't that much different.

I know there is a lot of talk on here about tumors doubling in size over night, but you could get struck by lightening too.  In me experience, based on this forum and other environments, when there is a 1 in a million scenario and somebody reports that they have it, suddenly so many people report having it that the odds drop to 1 in 10!  You can take that any way you want it.  Personally, I take a lot of the self-reporting about things on the internet with a large grain of salt.

If it bothers you, you could probably get your Dr to write an order for an MRI in 6 months.  But, you have to draw the line somewhere.  Why not every 3 months?  Why not every week?  So, there has to be some science based decision making going on and the scientist you have hired to decide these things says 12 months is appropriate.  You can question him about it, and if you don't like his answers I would find another Dr.

[operarose]

Hi ANER,

I'm in the exact same boat as you. I was diagnosed last November with a 11mm. At that time my local doctor (Neurotologist) told me I could wait a year for the next MRI. Drs. Freidman and Schwartz both recommended 6 months for me so I went with their recommendation. In May, my second MRI was more or less the same and there was no change in my hearing. So, my local doctor said one year for the next MRI and I am comfortable with that because it appears at this time it is a slow grower. If I have change in frequency, kind or intensity of my symptoms in months 7-11, I feel I can ask for another MRI then. I'm not wild about the use of the contrast and the possible affect it may have on my kidneys and it also makes me feel tingly several hours afterwards.

Figuring out what to do is hard, but I've learned on this forum 'to go with your gut feeling,' and that's what I am going to do after weighing medical advice.

[Echo]

Having an MRI done 6 months after diagnosis and then followed up at the 1 year point with another one is quite common.  In my case I had the initial MRI which found the 1.8cm AN in May 2012.  My follow up MRI in December 2012 showed little change.   Six months later, June 2013, I was experiencing a noticeable increase in symptoms that were worrisome.  I contacted my Neurosurgeon and we moved up my MRI.  I'm glad we did because my AN had grown to 2.4cm.  I decided at that point to proceed with Gamma Knife. 

Best advice I can offer is to pay attention to your symptoms and follow your gut instinct.  Remember - a change in your symptoms doesn't always mean your AN is growing. In my case the changes were significant enough that I wasn't comfortable waiting for my next regularly scheduled MRI and thankfully I had a neurosurgeon who was willing to move my MRI up. 

Cathie

 

[Lynxfan]

I also have had my first 6 month follow up MRI and am now to get yearly MRI's. I really forget about my AN unless I am having tinnitus or some balance issues. I try not to worry. My neurosurgeon said that up to 60% of all AN's don't grow at all. The research I found did not have those wonderful odds but that is what I am counting on!

[WhatnotGems]

I just met with the surgeon for the first time yesterday. I was in with the doctor for 40 minutes. I am perhaps calmer going into the office as I have been living with a benign Pituitary Adenoma for the last eleven years. I brought several of my prior MRI's with me. Reviewing all the MRIs showed the Acoustic Neuroma was there 4 years ago just not reported by the radiologist, and the quality of the MRI were not as good as this years MRI with the VA. Since this is also a slow growing tumor and no treatment will bring back any of my hearing loss we are going to repeat the MRI w/wo contrast next year. The MRI will cover the Pituitary Adenoma and the Acoustic Neuroma. It is extremely rare to have both brain tumors.

[ANGuy]

Note:  I just posted this and it didn't show up.  If this subsequently results on a double post, moderators please remove one.


Just to update a bit.  A couple of weeks ago I had a "change in symptoms" and called my nurse.  My hearing dropped off dramatically, my tinnitus increased, and my balance was a little off.  The only symptom I would characterize as "bad" would be the hearing loss as it was pretty significant.  But, this ear aint going to work forever anyway.

I was put on a 12 day course of prednisone, 8 at full dose and 4 to taper off and scheduled for an MRI in a couple of weeks.  The prednisone worked.  My hearing rebounded dramatically and the balance has not been an issue.  The tinnitus is still more noticeable, but it doesn't bother me.

This is the first time in a little over 2 years of observation that I had to make that call.  I just wanted to report that my 12 month MRI interval has now been modified to 8 months due to the change in symptoms.

I'll report on the MRI results and which track the train will travel on upon leaving the switching yard.

[mac84]

AN Guy, that's the development that I am afraid of....that I'll have another episode of hearing dropping out and then have to get on the Prednisone like I did when we first found the AN. I hate that stuff! 

Hope all goes well with the MRI....

[ANGuy]

AN Guy, that's the development that I am afraid of....that I'll have another episode of hearing dropping out and then have to get on the Prednisone like I did when we first found the AN. I hate that stuff! 

Hope all goes well with the MRI....

Thanks for the kind thoughts.  I took prednisone years ago for an allergic reaction and it made me miserable.  I was super irritable and no matter how much I ate, I never felt satisfied.  Sleeping was real hard too.

I dreaded having to take it, but it really wasn't bad.  Maybe the does was lower? 60mg once a day for 8 days and then taper off, 60 is about the max AFAIK, so I doubt it was higher last time.  I was "up" a bit, my workouts were much more intense.  My appetite was normal, and a benedryl or a shot of nyquil worked for sleeping, although napping in the afternoon just didn't happen for the whole time.

Anyway, for whatever reason, the prednisone was no big deal this time.

[ANGuy]

I just had my MRI, hearing test and consult with my Dr.  No growth and my hearing has returned to the level it was prior to this recent episode.  I am the same as I was for the last two years. 

He did schedule me for a 6 month MRI, not one year due to the fact that the difference between my first and most recent MRI's shows a total of about 2mm growth over the 2+ years.  He said this was withing the margin of error for all of this, but that his gut was telling him that it might be growing.  I think if he was going to make a bet on all of this, he would bet on my next MRI confirming growth.

His position is that since my hearing is pretty good, and he is certain enough that it won't survive surgery that he would recommend translab, that I might as well keep the hearing as long as I can.  BUT, if it is growing, there is no point in increasing the risk of damage to the facial nerve by letting it continue to grow.

So, his advice is that if it is in fact growing, then I need to get treatment.  I'll worry about it in 6 months.

BTW, he said that changes in symptoms are almost never the result of growth.  But, that it could be and the growth could be rapid from a cyst forming.  So, the reason to take changes in symptoms seriously is due to the rare, but serious possibility that rapid growth is occurring.

Now I am off to update my signature line to reflect the latest MRI...