Making Plans

[B]

Hello Everyone,
 
I was diagnosed: 3/99, 2.4 cm Acoustic Neuroma at age 45. And had FSR 6/99, Dr. Jeffery Williams at Johns Hopkins University Hosp., Baltimore, MD.  Much of my story is posted at http://www.anarchive.org/byron.htm   Be sure to see that website if you haven't:  http://www.anarchive.org/
   
I've had some recent, very mild (just noticeable) light-headed dizziness and imbalance and three doctors agreed that my tumor grew a little between MRI scans done in Summer 2003 and Summer 2005. I'm scheduled for another MRI this week.
 
I'm considering what to do if there is further growth (plans A, B and C) ........whether to go for surgery at the House Institute in LA or locate surgeons closer to home and family support or to have further radiation treatments.
 
Plan A is to wait and watch and leave well enough alone.
 
For plan B, I am considering further radiation treatments, this time with Dr. Ian Crocker at Emory in Atlanta (only about 30 miles away) but he is not yet sure whether to do that. He's considering that and seeking more information from Johns Hopkins about my previous FSR. Information or opinions about him and his record will be apprecated.
 
Plan C   I don't know.    Other options?       Atlanta surgeons?         I'm especially interested in Atlanta or Birmingham options because of family support nearby but will travel, again, if necessary.     House in LA??   Dr. Jackler in SF?? 

Thank you,

Byron Jones

[Sanddollar]

Hi, B.

I am sorry to hear that your AN may be trying to grow again.  This must be very disheartening.  I am scheduled for surgery next week, so I don't have any post-treatment / recurrent AN knowledge to share, but was thinking that perhaps you may want to watch for now.  Perhaps this is just a slight fluctuation - complete with some symptoms - but only that and not a sign of continued growth. 

I understand the "I need to do something about this" feeling - I was only diagnosed just before Thanksgiving last year and am already scheduled for surgery - but since you have already treated the tumor once, waiting for another view may just make sense.

I am certain that someone who has experienced this will provide you with their experiences - there are a number of good folks posting that are willing to share.

All the best,

Sanddollar

[jamie]

Hello Byron

Sorry to hear of the possible growth, how much did they say it increased? Reading your story it looks like things went pretty well for a long time, from my understanding it's very unusual for radiation to fail after 3 years. I hope things end up working out for the best one way or the other.

[GM]

Byron,

I can relate...I too am in a similar position.  I had Gamma Knife in Nov of 2003, I am 44, but I have 2 doctors with different opinions.  I am retired military and am fortunate to be close to one of the best hospitals in military medicine (Portsmouth Naval Hospital), they feel my tumor is stable and wanted me to go on a 2 year MRI regime.  The hospital that did the Gamma Knife (University of Virginia), feels that the tumor should be retreated or have it surgically removed.  My tumor has swelled a bit after the Gamma Knife treatment and I have a slight increase in tinnitus...but other than that I feel fine.

So now I'm in a quandary of what to do.  Personally I want to wait 6 months from my last MRI and decide off of that.  University of Virginia prefers to have MRI films with scales to read and they haven't always received that...as a matter of fact I don't believe that they've had two films in a row they are usually sent CD-ROMS.  So I'd feel better knowing that they are reading true samples.  So if they feel the same after the next MRI (Film with scales), then I want to go and talk to them.

So I am facing the same scary things as you.  The stories of horrible surgery after radiation...not really wanting surgery...what if I give radiation another try...what if that doesn't work too and then I have to face a potentially longer surgery...will I have facial issues...where's my crystal ball?


So I have a lot of questions, I've researched and found a Cyber Knife Center in Washington D.C. and will also add communications to them as well.  I am making an appointment with Portsmouth to talk with ENT and Neurosurgeons about surgery if it goes that way and will ask the tough questions of my surgery choices (where/experienced docs, rates of success, etc...).  I plan to ask a lot of tough questions to all to include the Gamma Knife Center at UVA and the Cyber Knife Center (Georgetown University) in Washington D.C.   

So I pray a lot, research a bit, try not to stress and hope for the best.  I do know that for me surgery is the last option, I'm interested to hear what UVA and Georgetown have to say about each others process.  I want to know the success rates for retreatment for both..

Feel free to email me directly if you want to email off line..  email me here and I'll give you my home email address...

Gary


UVA Link:  http://www.healthsystem.virginia.edu/internet/neurosurgery/gamma-knife-new.cfm

Top Hospital Rank 2005:  http://www.usnews.com/usnews/health/best-hospitals/directory/glance_6344000.htm



Georgetown Link:  http://www.georgetownuniversityhospital.org/body.cfm?id=1221

Top Hospital Rank 2005:  http://www.usnews.com/usnews/health/best-hospitals/directory/glance_6330130.htm

[B]

Thanks for the support and the links.

I plan to wait and watch as long as possible. I'll get an MRI on Saturday and a report next week and go from there.

Good luck, "tumor buddies".

B

[B]

Hello,

I had good news from my recent MRI. No growth. So mine may be an FSR success story, afterall.

Three doctors had agreed that the tumor had grown between scans in 2003 and 2005 and that I should repeat the MRI in 6 months. So I did that last week.

Dr. Ian Crocker, Radiation Oncologist, Emory Un. in Atlanta wrote:
.....measured your tumor as 3.3 2.6 x 2.1 on the current scan. .......In my opinion it
has not significantly changed over the 6 months. My recommendation
would be to repeat the scan again in 6 months.

I'll send copies to Dr. Rigamonti at JHH where the FSR was done and get his recommendations as well.

I'm happy to stay at home in Georgia rather than fly to LA for surgery. But I realize that could change so I will still be interested in hearing your stories and advice. Any information about Atlanta doctors with AN experience will be appreciated.

Thank you for your help.


Byron Jones