Gamma Knife or another surgery for re-growth?

[Gloriann]

I would like some opinions on whether or not you believe the best thing to do about a recurrent acoustic neuroma would be to have it treated with Gamma Knife or have another surgery?

I had a 4 cm AN removed 7 years ago and a tiny piece was left, which has started to grow. It is just under 2 cm at the present time.

The neurosurgeon I am seeing now has recommended Gamma Knife now or later, but after a talk I had with the ear surgeon who removed my timor in 2001, he told me that another surgery would not be a big deal because my facial nerve would not be a factor now (having been re-routed in the 7/12 nerve graft in 2002) and the bone behind my ear (translab) would not have to be removed.

I had not even considered having a second surgery, but had been thinkig of preventing that by having either Gamnma Knife or Cyberknife done.

The neurosurgeon that removed my tumor 7 years ago released me, saying he only saw scar tissue on the MRI's. I just happened to get a copy of the MRI report two years ago and found out there was a recurrent tumor. I tried to make sure by calling my surgeon on the phone, but he insisted he knew more than the radiologist since he was the one who operated on me.

I saw another doctor to get another opinion and he agrees with the radiologist, that this is not scar tissue, but a regrowth of the tumor.

Now I have to make up my mind as to what to do. Right now I am waiting to have another MRI in another year, but I know there will come a time when I am going to have to deceide what to do about this.

Surgery or radiation?

[er]

Hello Gloiann,
First I wanted to say I am sorry you have regroth.
That is one of my fears. My husband says no I am not and don't worry.
I am confused myself with your question?
 People seem to have better results to  the radiation  then the surgery with all the post I have read. Or am I wrong.
Maybe there should be a poll on the outcome on all.
eve

[Gloriann]

I was surprized when the doctor told me another surgery would not be a big deal this time, because of the 2 reason I mentioned. I had been thinking of having Gamma Knife instead of surgery, since we know for sure this is the tumnor growning and not scar tissue.
 But after reading all the possible risks with Gamma Knife (given to me when I took a tour of the facility) I am afraid to have it done. A person can wind up having surgery after Gamma Knife if good cells are damaged and since Gamma Knife produces so much scar tissue it would make any surgery following it risky.

[leapyrtwins]

Gloriann -

I have no personal experience with regrowth or gamma knife.  All I know is that my doc usually recommends surgery if there is regrowth after radiation - I don't know what he'd recommend if it was the other way around.  I know that other forumites will have opinions on your question and I believe it was debated on another subject not too long ago.  If you get a chance, you should try to search for it.  As I recall, it contained some very interesting discussion.

Eve -

as far as regrowth after surgery goes, my AN was completely removed and I have been told that the chances of regrowth are very small; typically 1-2%.  It's not a large enough chance to keep me awake at night, but then again I'll never say never.  My personal advice, for what it's worth - life's short, don't spend time worrying about something that may never happen 

Jan

[sgerrard]

Surgery or radiation?

What do yall think?

Radiation. 

I could go into the discussions about "all the possible risks," but the bottom line is that they are small risks - 1% or 2%. Guess what? All treatments have risk, and radiation is no worse than others. Some surgeons are reluctant to do a second surgery, because a first surgery also leaves scar tissue that makes a second surgery more difficult. But that is not a reason to avoid surgery in the first place. Those kind of concerns can't be the basis for deciding on treatment, in my opinion; they are bridges you cross if you get to them.

The one thing I would add, though, is that radiation is better on smaller tumors. 2 cm is fine; 3 cm is already a little on the big side. If you think you want to do radiation, I wouldn't wait too long. If you are looking into it, you might also consider Cyberknife, which you can check out here: http://www.cyberknifesupport.org/

Best wishes,

Steve

[Jim Scott]

Gloriann:

I'm sorry you're experiencing a regrowth.  Unfortunately, with Acoustic Neuroma tumors, this is always a possibility. 

I hesitate to offer specific advice because I'm not a doctor and don't know every detail of your situation.  That being the case, as a general suggestion, I would go for radiation.  It's non-invasive and if performed correctly can shrink and kill the AN or at least stop it from growing.  I had surgery, then radiation (FSR) for my large AN.  So far, so good.  However, should I experience a re-growth (which I doubt will happen) I would opt for radiation over surgery, if it were feasible in my case.  Surgery was a hassle and I wouldn't want to go through it again if I could do something easier and likely just as effective.  However, this is - ultimately - your decision to make. Do as much research as you can, weigh your options, consider doctor's opinions and the ones you'll receive here as well but remember that it's your head and you'll have to live with any negative consequences that may arise, no matter what treatment you choose.   Steve's admonition that all AN treatments carry some risk, albeit small, is a salient point worth remembering.  Nothing you do to address this AN will be entirely risk-free.  That shouldn't stop you from moving forward, just have realistic expectations.  Be cautious but don't waste time as the AN probably won't stop growing and the sooner it's addressed, the better.

I wish you all the best and pray that you'll make a decision on treatment that serves you well.

Jim

[leapyrtwins]

Surgery or radiation?

What do yall think?

I think it's a personal choice, best decided by you - with the input of your doctors.

[Gloriann]

I think all of my confusion for the past 2 years could have been avoided if the surgeon I had would not have told me I did not have to come back. I was very surprized after I got home and obtained the copy of that MRI report and read about the re-growth.
I wrote him a letter asking to see him again, because the ear doctor talked to me recently and suggested that I have a second surgery instead of the Gamma Knife since my facial nerve would no longer be a factor and the bone has already been removed from behind my ear (translab). I was really surprized that we were taliking about another surgery.
When he began to recommend new doctors to me that I could see, I said I would just as soon go back to a doctor who had already operated on me, since he knew what he did.
 So I wrote a letter and told him I would like his opinion on this. That was 3 weeks ago.

[claire1]

Hi

FYI, I'm not a dr. and can only relate from many post here re/large AN's and when a portion has been left behind or regrowth.  Many have posted that they have had debulking of large AN's and then had either GK or CK to get rid of the rest.  That might be an option to consider prior to another surgery. There is less room for risk of infection from radiation and other risk that is inherently seen with open surgery. It's ony my opinion but maybe worth looking into.

Take Care
Claire
Finally Sunny in Pa again

[Gloriann]

Thank you for your opinion.
I made an appointment to see the neurosurgeon who removed my tumor 7 years ago. I will be seeing him in two weeks. I am curious to see what he will say.

[claire1]

Glorianne,
 I know whatever you choose will be the right way to go. Best wishes with your appointment.
Claire

[oregon]

Dear jim,
            I have residual tumor after microsurgery for a 3.8x2.3x3 cm tumor. IN your opinion do I get a baseline MRI to determine size of remainder and then monitor or should I get radiosurgery? Am unsure about what form of radiosurgery. Why did you pick FSR? Thanks

[Mark]

Oregon,

I'll be interested in seeing Jim's responses to your questions on the residual tumor, but I'll offer my perspective.

I guess I would expect your next step would be determined by the original plan the surgeon had for your treatment. If he/she was going into the procedure with the expectation that it was a debulking effort , then I think the residual would need to be radiated by design and they would have discussed the where and when of that follow up process with you. If the surgeon went in with the goal of totally removing the AN, but chose during the procedure to leave some to protect the cranial nerves, then typically they would attempt to leave very little and "devasularize" it which should essentially kill it. In the latter scenario then I would think you would be in a follow up , wait and watch mode and do nothing unless an MRI showed regrowth at some point.

In terms of how to choose a radiation machine / protocol, there are a myriad of posts in the archives around the various issues and prespectives that people. In my view there are some factors to consider, but at some level all are basically effective so I won't go into a discussion here.

Mark

[Gloriann]

I wanted to get back to all of you since I saw the doctor in Memphis. He said he does NOT recommend a second surgery to treat this recurrent tumor. His recommendation is to have Gamma Knife done if it continues to grow.

[leapyrtwins]

Gloriann -

did your doctor say why he doesn't recommend a second surgery? 

I'm just curious since this seems to be a topic of great debate on the forum.

Thanks,

Jan