Regrowth after Gamma Knife

[Lisalb]

Hello--I'm new to the forum and this is my first posting.  In November, 2004, I had Gamma Knife for a 1.3 CM AN at Research Medical Center in Kansas City, MO.  I live in east-central Kansas.  At my one-year MRI, it showed a very slight shrinkage of the AN, so I was told to wait two years before doing another MRI.  About a month ago I had that MRI and it showed regrowth to about 1.7 CM.  The Dr. is recommending a repeat of the Gamma Knife and says my chances are 90% that it will work.  I am concerned though, and wonder if it doesn't work the second time, if the AN will be harder yet, to surgically remove.  I have lost a lot more hearing since the Gamma Knife.  I suppose because the AN is getting larger.  I had a hearing test and the AN ear can only hear at 60 decibels and greater.   I'm just wondering if any of you have had a similar situation and would be willing to share.  I am currently looking for a doctor in Kansas that is experienced with this so I can seek a second opinion before jumping right back into Gamma Knife.  I have absolutely no complaints about the Gamma Knife experience or the team that performed it...they were all great.  I'm just trying to be prudent.  Any thoughts, experiences, or feedback is welcome.  Thanks.  --Lisa

[leapyrtwins]

Lisa -

I didn't personally have GK, (I chose surgery) but my neurotologist told me that in cases where his patients chose GK and there is regrowth, he doesn't typically do GK again - he does surgery.  I don't know if this is just his practice or if this is standard procedure for regrowth.

Jan

[mindyandy]

I dont know about Gammaknife, however have you checked out the CK website? Cyberknifesupport.org  Check it out. Ask the drs. questions and they will give you their opionion and answer your questions. I hope this helps.
Mindy

[sgerrard]

First, I have to say I am sorry to hear that your radiation treatment did not control the growth of your AN. It is a sobering reminder that no treatment for AN is guaranteed to work every time.

Radiation has been used successfully a second time in some cases;  I don't know how often or what the success rates are. It is understandable to me that some doctors would rather do surgery if  the radation treatment didn't work the first time.

While many surgeons complain that radiated tumors, should they later require surgery, are more difficult to remove, there are some neurosurgeons who claim that it doesn't make that much difference. So how much harder it would be to remove surgically after two radiation treatments is difficult to say, and there will doctors with very different opinions on that question.

I agree with Mindy, asking some of the cyberknife doctors about it makes sense. Even though they tend to be pro-CK, they are also very knowledgable about ANs, and have collectively seen a wide range of cases. Their experience is worth tapping into, even if you are not interested in CK itself.

I wish you the best in your on-going AN journey.

Steve

[kat]

Hi Lisa

I am sorry to hear that the GK has failed to control the growth of your AN. I had my GK  30 months ago in Sheffield UK and my last MRI almost a year ago did show some shrinkage. I should have my next MRI soon and now as the time is getting nearer I am
getting more and more nervous about the result allthough I have no symptoms to indicate any problems .

At the time of my GK my consultant Mr Rowe said that if my GK did not work it would be possible to have another GK to fix the problem . He also said that to his knowledge surgery after GK was not a major problem allthough the texture of the AN was a bit
tougher than usual .  I  hope that you will get some inpartial professional advise as to what you should do next and I wish you luck
with any treatment you choose .

Best regards Kat

[GM]

Lisa,

Anyone who has had treatment by radiation stresses over the MRI’s.  My tumor grew slightly over a 2 year period from 1.8 cm to 2.1 cm.  I was determined not to do anything else unless I absolutely had to.  My hearing has remained the same…no new symptoms…and no facial numbness. 

Please read my posting under Treatment Options/ Radiation / Radiosurgery and my post is titled “It’s about timeâ€?   

Also, I emailed Dr. Clinton Medberry in 2006 when I was thinking about trying Cyber Knife and I sought his opinion…here is the body of his email:

Subject: Re: Cyber Knife after Gamma Knife - vs - Difference of opinion from doctors

"We do not have any experience with the use of the CK after GK. We have only had a single failure in 10 years, and she was treated surgically.  There is not a lot of information on re-treatment.  I would require absolute proof that your tumor is definitely growing.  I can't tell you how many times we have seen things that were called growing tumor that actually were not in retrospect. A couple of millimeters would not do it for me. We do not require tumors to shrink to call it a success since not all do. If a patients is 5-10 years out from treatment with no evidence of tumor growth, I think it is highly likely that the tumor is not going to grow and that is an operative definition of success. I would not be in any hurry."

I fully believe in this, I would need ABSOLUTE proof that my tumor was growing and I was having problems before I would do anything else.  Since I deal with three hospitals, everyone reads the MRI slightly different.  My suggestion would be to become thoroughly educated on this process, be actively involved, and do NOT make any rush decisions.

Gary