Author Topic: Interesting Tidbit from my Vanderbilt visit this week  (Read 1677 times)

mac84

  • Full Member
  • ***
  • Posts: 103
Interesting Tidbit from my Vanderbilt visit this week
« on: April 21, 2017, 09:45:17 am »
Dr. Rivas indicated to me that the Acoustic Neuroma Center there at Vandy is now monitoring over 600 patients on the WATCH/WAIT list.  He said they are in a position of really being able to dig deep into all of the data they are collecting on these 600+ patients and come up with some things over time that may help in the treatment (and/or prevention) of these AN's.

He said the biggest body of patients being followed currently is in the Netherlands because all go to the same center there: over 2500 being monitored.

Diagnosed 10/13/14 with 1.4cm AN L side
1st Consult with Vanderbilt 11//14
W/W.  Next MRI in April 2015 at Vanderbilt.
April 2015 MRI no growth -
April 2016 MRI no growth - still 1.46cm.
4/17: No growth!
4/18: No growth but hearing deteriorating - MRI 2 yrs
Fitted with Resound Linx 3D 5/18

alabamajane

  • Hero Member
  • *****
  • Posts: 587
Re: Interesting Tidbit from my Vanderbilt visit this week
« Reply #1 on: April 21, 2017, 04:08:36 pm »
That is interesting.  Thanks for posting it. That's quite a large population they are watching,,

Hope your visit went well.

Let us know if you find out more while visiting ,,
Jane
translab Oct 27, 2011
facial nerve graft Oct 31,2011, eyelid weight removed Oct 2013, eye closes well

BAHA surgery Oct. 2014, activated Dec. 26

ANSydney

  • Hero Member
  • *****
  • Posts: 625
Re: Interesting Tidbit from my Vanderbilt visit this week
« Reply #2 on: April 21, 2017, 06:34:53 pm »
It would be great if the growth profiles of those 3100 patients were clearly measured and communicated to the medical community and the general community.

Cityview

  • Full Member
  • ***
  • Posts: 117
Re: Interesting Tidbit from my Vanderbilt visit this week
« Reply #3 on: April 21, 2017, 06:41:38 pm »
Mass General / Mass Eye and Ear sees 300 New AN patients per year with two to three thousand on watch and wait receiving MRI scans. They operate on about 75 per year and radiate around 75.
That info is on the talk given by Dr. McKenna.
5 years ww
small AN

Abetpds

  • Jr. Member
  • **
  • Posts: 51
Re: Interesting Tidbit from my Vanderbilt visit this week
« Reply #4 on: April 22, 2017, 06:33:21 am »
Hi This iis Regina - a newbie with a 2.7cm AN.  I spoke to Dr Friedman at Keck Hospital USC and uploaded my images to him. He recommended that I would need surgery and the translab process.  Since I heard that his center is the best I decided to schedule surgery.
However, yesterday I met with a neurosurgeon here in Augusta, GA where I live and asked him what type of surgery he would do. His comment was that looking at the MRI - the tumor is large and beckons him as a surgeon to operate and get it out.  However looking at me as a patient, he had a few questions for me.
The ONLY symptom I have is complete hearing loss on the left side. No numbness, or paralysis or imbalance or ringing or dizziness.
So he asked me why I was leaning towards surgery since surgery would not bring my hearing back?  His comment was "why would I go thro something where the post-operative symptoms would be worse that my present condition!!
Well -- that stopped me in my tracks.  He said that he does not treat a picture -but a patient!  the other comment he made is that since I am 69 yrs old (in July) the cells do not regenerate as in a younger person - and it could be a possibility that the growth has stopped.  This is the first MRI i've ever had and so we do not have a previous one to compare to. He said that I've had it for possibly 20 years  and that the slow growth allows for surrounding tissues to expand to accomodate the tumor. 
I asked what he would do and he said to get another MRI in 3 months (last was in March 2017) --so July and let's monitor to see if growth increases. Then monitor every 6 mos.  This would change if I developed any symptoms associated with the AN - in which case, we would have to decide surgery or gamma knife.
I would really appreciate your comments.
Thanks  Regina

ANSydney

  • Hero Member
  • *****
  • Posts: 625
Re: Interesting Tidbit from my Vanderbilt visit this week
« Reply #5 on: April 22, 2017, 04:50:40 pm »
Regina,

I'm glad that you got multiple opinions. As you've found, the opinions vary.

Serial MRI's is a good start to determine growth. You may want to talk to a gamma knife unit in the mean time to increase your options knowledge.

"it could be a possibility that the growth has stopped" is better worded as "it is likely that the growth has stopped". The clear majority of tumors do not grow at time of diagnosis. This meta-analysis has growth at 30% or 13% depending on study http://www.elsevier.es/en-revista-acta-otorrinolaringologica-espanola-402-articulo-conservative-management-vestibular-schwannoma-S2173573514000957

« Last Edit: April 22, 2017, 07:03:15 pm by ANSydney »