Update 10 years after AN diagnosis

[becknell]

I just wanted to share this update because I was very active on this board for years, but have not been for a while.

My husband, now 55, had surgery at Duke University for his 3.5 Cm An in fall 2005 and Gamma Knife at the University of Virginia in spring 2006 for the remnant of tumor that they were not able to remove in the surgery to save his facial function.

He has had MRIs ever since then, first every six months, then every year, now down to every 2 years.

Two years ago, when he had his last MRI, the doctors said it was growing slowly, had grown a a few mm over the past eight years and they thought he would need some treatment. However, after talking it over, we agreed to have another MRI in two years and see where we are.

He just had the MRI again, and the tumor has grown maybe 1 mm in the last 2.5 years, which is statistically insignificant because the margin of error is around 2 mm. Although it is growing very slowly, the growth appears to be slowing.

So he doesn't have to have another MRI for another two years. YEA!

Just wanted to share to let you know that

1. You can have growth of a tumor after Gamma Knife.

2. If you do have growth after GK, it doesn't necessarily mean you have to have treatment.

We have been advised not to do anything unless it appears necessary, and right now it's not.

Life is good. DH doesn't hear in his left ear, and had tried several hearing devices and now pretty much given up on all of them because they don't really help that much. His balance is Ok, except in the dark. He is still working, golfing and enjoying life.

Hope you all are doing well.

[ANGuy]

l am glad you guys are doing well.  Member Paul W has a lot of information on the accuracy of imaging and may be able to give you some idea of whether you have an actual indication of growth. 

Can I ask who was the surgeon at Duke?

[becknell]

Yes, it was Allan Friedman at Duke, but he did it with Dr. Fukushima, who operates at Duke and elsewhere.

[ANGuy]

Thanks!

[PaulW]

I believe MRI's are quite accurate down to 0.5mm now..
With that said a lot depends on the settings they use and the age of the machine.
So really a millimeter here or there probably still means nothing unless they did thin slices and had the scanner wound up to 11

https://www.youtube.com/watch?v=KOO5S4vxi0o

[Crazycat]

Hello Becknell,

I remember you! I just reached my ten year mark in September. I had multiple surgeries for a shunt and resection for a 5cm x 5cm tumor in August and September '05. My tumor could only be debulked due to complications with other cranial nerves. I've had MRIs every year since then with no regrowth.

I'm in good health, though from the neck up I'm a wreck i.e., constant double vision, total left-side deafness, roaring tinnitus.
facial numbness, swallowing difficulties, equilibrium problems (I have a tendency to fall down) and my nerves are shot. I used to have headaches but those diminished over time. Also, my left-side dexterity has been compromised from what is called cerebellar retraction or brain compression. As an example, I used to be an illustrator and had beautiful, flowing penmanship—not anymore! My skills as a professional musician were also greatly compromised, and not just because of hearing loss. 

Below is a link to an interesting post I made on the subject with a lively discussion thread made in 2006 on the subject of Cerebellar Retraction". 2006.......where does the time go?


http://www.anausa.org/smf/index.php?topic=2650.msg27897#msg27897