2.5 yr post treatment MRI

[clarmst]

Hello - It's been quite some time since I've participated, but I've been reading quite a bit on the various forums lately.

I am currently a 53 yr old female first diagnosed 5-06 with a left side 13 x 16 mm AN.  I underwent CyberKnife treatment 7-06 at Menorah Medical Center in Kansas City with Dr. Michael Hughes - FSR - 5 treatments.  After treatment I continued to follow up with my neurotologist, Dr. Bradley Thedinger.

In Jan. 08 the mass measured  2 x 2 x 2.1 cm and the report indicated "although the enhancement pattern now shows greater peripheral enhancement than central when compared with the homogeneous enhancement on the previous study, this is not always a reliable indicator of necrosis".

My recent 2-09 MRI indicates it now measures 2.4 x 2.1 x 2.4.  Impression:  measures minimally larger although there is now a slightly lesser degree of internal enhancement.

I have tinnitis, no other symptoms, but my hearing has decreased to 55%.  Dr. Thedinger is not sure whether the increase in size is still a result of the treatment, or is growth of the tumor.  He indicates he is not ready to declare treatment a failure.  I am to have another MRI in 6 months.

Just wondering if anyone has experienced or heard of similiar circumstances.  Thank you so much!

Connie Armstrong
K.C.

[sgerrard]

Hi Connie,

I think this calls for one of my favorite posts from JB, posted a while ago now. It is a graph showing the range of swelling reactions after radiation, from shrinking right away, to staying the same for several years, to swelling way up and down again in a year (JB's category), to swelling slowly and going back down slowly (your category).

http://anausa.org/forum/index.php?topic=6493.msg63049#msg63049

You have picked up a couple of millimeters in a year, hardly a fast pace. I think Dr. Thedinger is right not to call treatment a failure just yet. You may have just now peaked, and will begin a gradual shrinkage over the next year or two. It sure seems worth it at this point to keep watching it. It is quite possible that the necrosis will be confirmed on the next MRI.

Was your hearing 100% at the time of treatment? If it is declining, you may not be able to stop that, but I doubt surgery would either. If it stabilizes around 50%, you can still get some good out of it.

Welcome back to the forum.

Steve

[clarmst]

Steve - Thanks so much for your comments.  I had been searching the forums for info regarding swelling, but I had missed the one you mentioned.  Very helpful!

I guess the part that is worrisome to me is I would expect the swelling to have subsided by the 2.5 year mark, but I've shown an increase with each MRI.   

My hearing was at about 84% prior to surgery - that's what led to my diagnosis - had a crazy ringing in my ears and people started talking muffled!  I've adjusted to the hearing loss and tinnitis...I just really wouldn't want to have surgery.

Thanks again for your comments...I'm going to stay on board!

[moe]

Welcome, Connie
I'm new to the forum, had my left sided AN totally excised June 06. Mine was found and measured about 2x2.5 cm. Cyber knife was not recommended- good thing because it was a vascular(bloody) acoustic neuroma, which they didn't know until they were in there. I had tinnitus prior to surgery so I can definitely relate to that. Unfortunately the tinnitus is perceived as LOUDER after my surgery. Had to have the hearing nerve completely cut to get the tumor.
I like Steve's advice. I met him yesterday when I joined! Hold off on surgery if you can.
And tinnitus treatment is possible with the hearing nerve intact. I live near Seattle and had a different surgery at University of WA (don't want to go in to too much detail, or it'll scare ya). They actually had grant money to do studies on tinnitus patients, but I wouldn't qualify because the nerve was shot.
Is your tinnitus mild/severe/what does it sound like?
I grew up in Overland Park, KS and have my family there. Went to KU Nursing school.
Glad to meet a midwest girl. What parts do you live in?
Maureen

[sgerrard]

I guess the part that is worrisome to me is I would expect the swelling to have subsided by the 2.5 year mark, but I've shown an increase with each MRI.   

That would bother me too.  The last year was a pretty small increase though, so there is a reasonable chance it has run its course now. Hang in there.

Steve

[clarmst]

Hi Maureen -

It sounds like you really had a rough go of it.  I was very happy with my CyberKnife treatment.  I think I'm just getting a little antsy because I read all of these great reports that show shrinkage and I'm still waiting.  Like Steve said, I'm going to hang in there and see if the swelling has run it's course.

My tinnitis is loud but bearable.  Most of the time it's the white noise sound.  I've gotten used to it for the most part but there are times it makes me sad to realize I'll never have "silence" again. 

I lived in Overland Park for a time too - in fact I'm heading there tomorrow.  We're still close by in the Piper area.  Not sure if you've been back lately, but it's very close to The Legends - lots of shopping and restaurants.  I love your area of the country - lots of beautiful places there!

[Jim Scott]

Connie ~

I concur with your doctor.  Although it's been awhile, post-radiation tumor shrinkage is a notoriously slow process.  I've been fortunate in that my debulked AN responded well to radiation (FSR) and showed necrosis and some minor shrinkage relatively quickly.  However, the surgery that cut off it's blood supply and effectively 'gutted' the tumor, prior to the FSR treatments, very likely had a lot to do with it's rapid demise.

I would venture that not only is your experience not really unusual but that when you undergo your next MRI, your doctor may very well see some necrosis and/or shrinkage. 

Jim

[macintosh]

Here's some info from an abstract from an article in Neurosurgery: February 2006. The primary author is BE Pollock:

<Tumor expansion after VS radiosurgery rarely denotes a failed procedure, and the majority of patients only require further imaging. Approximately one third of tumors that enlarge will remain increased in size compared with the time of radiosurgery but will not show sequential growth. Additional tumor treatment should be reserved only for patients who demonstrate progressive tumor enlargement on serial imaging (2% in this series). >

Mac

[clarmst]

I can't express how glad I am that I decided to check back in with all of you here after being absent for a couple of years.  I have received much encouragement, and feel better equipped than I did just a few days ago.

There certainly are some very courageous people in this group who have undergone some very difficult circumstances.  God bless you all, and thank you so much!

Connie Armstrong

[moe]

Don't go away now. We want to know how you are doing, and I'm from Kansas City!
Brad Thedinger- that name sounds so familiar. I went to St Teresa's Academy for high school, in K.C., MO, and that name sounds like one of the guys from Rockhurst High School for boys..... Ask him where he went to high school!
Maureen

[clarmst]

I decided to have a consultation with my radiation oncologist to have him look at my MRI's.  Even though my neurotologist (Dr. Thedinger) was not ready to call my CyberKnife treatment a failure, the RO (Hughes) was.  He indicated he had seen and measured enough MRI's to call it a failure.  Apparently the center is dying off, but there's enough of it left that is continuing to grow.  Hughes feels surgery is inevitible, but feels Thedinger's recommendation to do another MRI in 6 mos reasonable.

Moe - you're right about Thedinger being from Rockhurst.  You have a good memory!

However, Thedinger has only done one surgery on a failed treatment.  I'm thinking I'd like a little more experience than that and am seriously considering House.  I'm going to wait and have another MRI in July and if it shows additional growth, I'll be pretty much resolved for surgery.

In the meantime, does anyone have advice as to what kind of timeframe I should be looking at for contacting House and what steps to take?

Thank you so much.  Your comments and recommendations are most welcome!

Connie

[kathylittlejohncobb]

Hi Connie, I had my 2 cm AN taken out at House almost three years ago.  They do phone consults, and after the initial call, we fedexed my MRI to them from Louisiana.  Dr. Rick Friedman called me the day it was received, & we had an excellent conversation.  Within a very few short weeks, I was on the operating table; Dr. Marc Schwartz was the neurosurgeon.  I can not say enough good about both of them, the other doctors and all of the House Institute/Clinic staff with whom I came into contact.  Ditto for the staff at St. Vincent Hospital, which is across the street from House.  The followup care is great, and the guesthouse next door to the hospital, Seton Hall, is very comfortable for the days following your release from the hospital. 

I felt well taken care of the entire time I was under the House physicians' care, and would encourage you to consult them.  If I had everything to do over again, I would not change anything about my decision to have the surgery and to have it under the House physicians' care. 

God bless you, Kathy