Trying to decide: Gamma knife versus surgery

[jps311]

Hi everyone,

I was diagnosed with a AN in 2006 after having facial nerve damage and loss of hearing. But recovered after a week and mri showed the tumor.  Its been 2 yrs and after changing my dr. It has been suggested that we take care of the AN. Being that my age which is 42 and the time is to do something now. Now my options are surgery or GK.

I am not afraid of the surgery but  i have consulted 2 of the top drs. at tufts medical center in both there fields. I am leaning towards the GK for my own personal reason but i would like some feed back from people to help me understand the different types of treatments. I have to make a decision on the date with in the next month or so. So any help you could give me i would appreciate it. PAul

[wcrimi]

I had surgery and I don't know as much about GK, but age was a consideration for me. I think the younger you are, the more the risks favor surgery.  I am 49 and had my surgery 7 weeks ago.  However, this is clearly a personal thing because we are all different and have different cases.   

[Larry]

Paul,

There are many posts on this forum as to the different surgical and radiotherapy treatments - you can do advanced searches on those. essentially, there are 3 surgical options Translab, middle fossa and retrosgmoid. Translab is "all defining" and has the best view of the tumnor for the surgeons but you will be left with no hearing in that side. The other two methods are meant to preserve some hearing and are less invasive than Trans lab.

there are two main streams of radiotherapy being Gammaknife and Cyberknife. GK is a one off burst and CK is a fractionated approach over 4 or so sessions.

Other radiotherapy method is using a Trilogy system which is a linear accelerator.

There are loads of popsitives and negatives for all these. You need to research each one and then make the decision yourself. Look at the posts on all of these and see what outcomes tend to occur. Also, for surgery, you MUST use experienced surgeon /s and for radiotherapy, the software and technicians are vital - that is, the software must be recent and the technicians experienced.

laz

[leapyrtwins]

Paul -

treatment choice is a very personal choice and you need to do what is right for you.

Since you asked, I had the choice of GK or surgery and chose surgery.  I was 45 1/2 at the time of my diagnosis and surgery and I had the retrosigmoid approach.

My outcome was very good - my only permanent issue is SSD and I chose a BAHA implant nine months post AN surgery to help with that.

I chose surgery for a lot of reasons, but the two most important to me were 1) I wanted to have my AN removed and 2) I wanted to know what side-effects I'd have upfront, not wait to see what GK would bring. 

My surgery was 19 months ago and I've never doubted my decision, nor have I been sorry I chose surgery.  Those who chose radiation would most likely say the same thing.

Bottomline, it's up to you.

Good luck,

Jan

[macintosh]

For my money, the best site around for distilling information about this difficult choice is the University of Pittsburgh site:

http://www.acousticneuroma.neurosurgery.pitt.edu/

I don't mean to be contrary, but I do not think that the medical evidence would suggest that age should have anything to do with what choice you make. I had radiosurgery two years ago, and I'm very happy with the outcome.

Mac

[sgerrard]

Hi Paul,

How big is your AN? That is usually the first deciding in factor in considering radiation treatment. When you said you recovered after a week, do you mean you got all your hearing back? Saving hearing is often the second factor in considering radiation. If you have a smaller AN, then radiation is certainly a reasonable choice, with good outcomes most of the time.

Welcome to the forum, I hope you find it helpful.
 
Steve

[GM]

Hello from a fellow "Zapper"   

If you look in my signature script there are a few links that will take you to a couple of GK sites.  I was 42 when I had my GK at University of Virginia. They will answer any of your questions at their web site.  I normally don't comment much on my choice of treatment because my tumor is hanging out at 2.1 cm.  I'd make a lot more comments if my tumor shrank. 

For me it was important to have the treatment and return to work as I was active duty Air Force at the time and didn't want to get medically discharged.  I had the treatment and retired in 2005 with 23 years of service...so GK didn't affect me.  I still have pretty much the same level of hearing that I had post treatment.

I'd suggest that if you choose radiation be sure to follow up with an annual hearing test along with your annual MRI. 

GM

[tenai98]

Hi Paul.
It has been 4 months since I was first dx with AN. At first when I read thru some treads on this site, mainly the post op ones. I was terrified of surgery and I vowed to NOT have surgery but radiation.  Then once I took a deep breath and read thru more treads on this site, I realized I became bias on surgery.  After many hours of reading and soul searching, I have decided on surgery which I'm hoping will be done in April of '09.  Here is my reasoning why I choose surgery.  Either treatment may have post op side effects. We are all different with our recoveries.  With surgery you know right off the bat what side effects you may be dealing with whereas with radiation it becomes a guessing game. That is Reason #! why I picked surgery.  Second reason is that with surgery, the tumor is removed. Radiation the tumor growth is arrested but still remains in ur head. As it has been stated, treatment is a personal choice. Also it has been said that one day you will wake up and you will know of your decision.  Research research research and digest the info and you will come to your decision.
JO

[fbarbera]

Hello Paul,

I was 34 when diagnosed and had my AN treated with CK.  I seriously considered both GK and surgery and elected CK for a variety of reasons, but mainly to save my hearing, to avoid the risk of facial nerve damage, and to avoid the other risks associated with surgery, such as unpredictable post-operative symptoms.  I outline my decision-making process in detail in my website below (in my signature line).  The website also includes a description of my progression after treatment (I'm doing really well now, though there were rough patches in the first year) and a few other tips/resources for patients trying to decide on a treatment.  Hope it is helpful and good luck with your decision.

Sincerely,
Francesco

[Sue]

Hello,

It's terribly frustrating to have an AN and then to have to try to figure out the best treatment options on something that you've never heard of before your diagnosis, only adds to the problem.  It's too bad there isn't one cut and dried method of treating our problem, but there isn't.  This is what I know about my experience. 

I am  *ahem* older.  I have diabetes.  The doctor's that I went to highly recommended radiotherapy for me.  My doctor is young and has trained in surgery and also on the "big machines" and I was gently steered in this direction.  Not really enthusiastic about microsurgery, I gratefully accepted their recommendation and went ahead with Gamma Knife the next month.  Do I have regrets?  No, not really.  Do I wish the outcome was better? Yes, I do.  I hoped that my symptoms would disappear.  They did not.  It was too late to get back what was already lost to me.  I have little hearing in my AN ear and no word recognition, and I have constant tinnitus, which you sort of get used to over time.  I have facial numbness on the AN side which is greatly annoying. This affects the inside of the mouth and half the tongue. I have a constant salty taste in my mouth.  I was hoping that would go away, but it didn't.  My balance system was already compensating for my AN before I even knew I had one.  After reading an excellent article explaining the balance system and how it works, I realize that I did have many subtle symptoms long before the tinnitus showed up and sent me to the doctor.  I have some "wonkyness" and cognitive/memory problems, but nothing to the extreme. 

I don't have headaches.  I don't have extreme balance issues.  I don't have facial paralysis, but I might have the smallest amount of facial weakness on my AN side, but since I'm *ahem* older, it's hard to tell the difference between that and gravity.     I don't have any post surgical complications because I didn't have surgery.  Do I wish I had surgery?  I've thought about it and wondered if I'd gone that route would anything have been better.  It's not unusual to wonder about the path not taken.  Maybe I wouldn't have facial numbness.  Or maybe I'd be in a worse situation.  Or not.  Who knows? 

I'm not afraid of the risks regarding radiation.  I realize that I'm closer to the end of the road than the beginning so very long term effects won't be an issue for me, but even if I were younger, I wouldn't be terribly concerned.  All treatments are risky and you just take a leap of faith and go for it.  I mean I could have been killed in a car wreck on the way to GK. 

I personally wish that I'd never gotten this stupid thing.  But, in a world of stupid medical conditions, we all know what horrible things lurk out there, and this is certainly preferable than other stupid things.  And I'm grateful that we have the technology that we have to deal with these stupid things.  The skillful hands of a surgeon or the skillful use of a Gamma Knife machine are miracles to me.   

Best of luck to you in your decision and your eventual recovery,

Sue in Vancouver USA

[mk]

Paul,

the dilemma of surgery vs. GK (or CK) is very perplexing. Lots of us have gone through this agonizing decision making process, so I really feel for you.
I am 40 now (39 at the time of diagnosis). For my own personal reasons, which I have explained in detail in my previous posts, I chose GK, although my case was very very borderline and one could say that it was a "risky" decision. But I found that most of the risks that the radiation oncologists presented to me were equally, or much more of a risk with surgery as well.

When I mentioned to one of the doctors that I was afraid that I wouldn't be able to care for my kids if I end up with a long recovery time after surgery, she said "you are young, you should think about yourself now and have surgery". I thought to myself, whether going through a long recovery without much help (in my case), having complications that would require tons of visits to specialists (not readily available in my town), having issues of headaches, fatigue etc.  be "caring about myself". Of course this is not the case for everyone and many make it through with flying colours. There are many complications that can happen with radiosurgery as well. It is a gamble and you can only hope that you will get through it with the best possible outcome.

Now 8 months post GK my hearing is holding steady and I don't have any balance issues etc. Very surprisingly recently I have been feeling an improvement in my numbness and more importantly my taste (Sue, I never thought that this was possible, as you said I believed that this would say unchanged).

You are doing the right thing by asking around, and do your research as much as possible. Don't let anyone "push" you around - this decision is yours to make.

Take care,
Marianna

[windy]

Hi Paul,

I remember the decision making days. I think you asked a very good question!  For me, I researched for about a month or two.  I finally decided on Gamma Knife.  I think Sue put it very aptly when she said you wonder if things would have been different had you chosen a different route.  Some say, "never look back".  For me, I am one who reviews the past and the present and wonder, "what if....?".  I have had some issues post GK that I did not welcome, such as some facial scarring**, etc..., but I keep in perspective it could be worse.  I am improving in other areas, so am hopeful all will come out well in the end.

I have immune issues and was guided toward Gamma Knife on the first visit with a neurosurgeon.  I saw the Head of Neurosurgery and he did not encourage surgery, at all.  My ENT physician did not encourage surgery, at all.  They were both advocates of Gamma Knife in my case.  For me, it was just a choice between GK and CK, mainly.  Personally, I thought about having surgery, but I had little encouragement towards surgery.  They felt I would not fare as well as the average patient.  Most likely, I would not have. 

I am grateful to be as good as I am.  I think I would still choose radiation, even with the issues I have had.  I always think things could be worse....

Good luck to you in your decision.  I wish you the best!

** I think facial scarring in almost every individual would be probably unheard of in most cases.  I think my problem came in with the immune issues and extremely fair skin, combined with radiation.  At least, that is what I have been told by my local physican.  Please don't let that scare you off! 

Windy  

[DebbieL]

Hi Paul,

I was a watch and wait for about 2 years but when the AN started growing faster this past year, I was encouraged to deal with it.  The choice between radiation and surgery is definitely a personal one like others have said.  I chose CK which I had done 5 months ago.  I go in for my first MRI since having CK in a few weeks.  I did a lot of research before deciding what to do.  The people in this forum are a great source of information and help.  Once I decided, I felt much better about having it done.  I still have very loud tinnitis, some balance issues along with swallowing problems which I had before CK.  I now have horrible headaches to add to the list.  If I was able to turn back the clock, I think I would still choose CK.  Like others have said, with surgery, you know right away what your problems will be while with radiation you may not know what problems you will have until down the road.  My doctors at Standord told me the same thing.  I'm just hoping and praying that I won't have anymore issues than I have right now. 

Good luck making a decision.  Do your research and make sure your doctor has had lots of experience.

Debbie L.

[Sue]

Now 8 months post GK my hearing is holding steady and I don't have any balance issues etc. Very surprisingly recently I have been feeling an improvement in my numbness and more importantly my taste (Sue, I never thought that this was possible, as you said I believed that this would say unchanged).

Oh Marianna, I hope so!  It would be nice if mine disappeared, but I don't think it's going to happen.  I guess that means I won't be disappointed too much if it doesn't, and pleasantly surprised if it does. 

Sue in Vancouver USA

[jps311]

I appreciate all the advice i have gotten here. IT is a big help. As for how big mine is i always forget. I have had 6 mri"s in the last 2 yrs and i find out and still forget to write it down.

My new drs are really good and we ask a ton of questions. On the 29th of January me and my wife go and see the surgeon and the dr. who does the gamma knife and sit down and chat with more questions and then set a date for whatever i or i should say we deceide. I am not afraid of leaving the tumor in my head if i have radiation. I rarely thought about it till the drs told me that it was time to act on it. It is growing and this is the time to do it.

Again thank you for helping me out with this. I read all the replies and think about things. I did recover my hearing quickly after my first attack and my face numbness is ok. I do have this eye twitch and some left face problems on occasion so i guess i worry that they could become worse either way.