Gamma Knife or Retrosygmoid Surgery?

[Mauri]

Greetings,
       My name is Mauri and I am perplexed. I had resigned myself to dealing with my AN (which is about 1 cm in size) by having surgery, as recommended by my specialist. But I needed to meet with the other doctor, a neurosurgeon, who would be on the surgery team. I just had an appointment with him today. He indicated that if I went ahead with the scheduled surgery, I would most likely lose all of my hearing in that ear. He then went on to mention the Gamma Knife treatment, which he indicated would have a much better success rate of saving what hearing I do have on that side. So it sounds like he really prefers that method, compared to my specialist who tends to go with the retrosygmoid approach. Any thoughts or recommendations? I could really use some help from any of you who faced the same decision.

[Sue]

Hi Mauri,

Your specialist is a surgeon, no doubt, and that's what he/she is trained to do and that's how he/she feels is the best way to deal with your AN because that is what they were taught in school.  Unless they also do radiosurgery, surgeons are not likely to send you somewhere else. This is, after all, their business.  Your AN, unless it is dangerously located close to your brainstem, or is a super large one (which at 1 cm, it isn't) does not necessarily have to be surgically removed, unless that is what you so desire.  You have the viable option of Gamma Knife or Cyber Knife or any of several other machines that do basically the same thing...make that AN die via a pinpoint burst of radiation that will kill the darn thing. You can visit the cyberknife support and information site and find lots of great information there and even ask real doctors questions and they will actually answer your questions in pretty short order! 

http://www.cyberknifesupport.org/

Good luck with your decision, eventual treatment and recovery.

Sue in Vancouver USA
PS - You might even want to watch and wait...getting another MRI in 6 mos or a year to see what the growth rate is.  Many people are on "hold" so to speak, giving them more time to decide what to do.

[linnilue]

Hi Mauri,

Your specialist is a surgeon, no doubt, and that's what he/she is trained to do and that's how he/she feels is the best way to deal with your AN because that is what they were taught in school.  Unless they also do radiosurgery, surgeons are not likely to send you somewhere else. This is, after all, their business.  Your AN, unless it is dangerously located close to your brainstem, or is a super large one (which at 1 cm, it isn't) does not necessarily have to be surgically removed, unless that is what you so desire.  You have the viable option of Gamma Knife or Cyber Knife or any of several other machines that do basically the same thing...make that AN die via a pinpoint burst of radiation that will kill the darn thing. You can visit the cyberknife support and information site and find lots of great information there and even as real doctors questions and they will actually answer your questions in pretty short order! 

http://www.cyberknifesupport.org/

Good luck with your decision, eventual treatment and recovery.

Sue in Vancouver USA
PS - You might even want to watch and wait...getting another MRI in 6 mos or a year to see what the growth rate is.  Many people are on "hold" so to speak, giving them more time to decide what to do.

  DITTO...I am in full agreement with Sue.  Your tumor is small and radiation is a viable and most likely first option or "Watch and Wait". 

[Mark]

Mauri,

What Sue and Nikynu said  . They're both right on target and I couldn't add anything more

Mark

[sgerrard]

What Mark said about what Nikynu said about what Sue said. 
Check it out.
I'm certainly glad I did. I will be doing the zaps next week.

Steve

[pearchica]

Hey Mauri-sorry to meet you under these circumstances! 

I'll give you my brief history with surgeons/consultations.  My situation is different than yours in that I have a 2.5 CM tumor and needed to deal with it in about a 6 month time frame. 

First Guy told me he would debulk the tumor and then treat the remaining amount with Gamma Knife to preserve my facial nerve. Complete hearing loss on left side (where tumor is).

Second Guy told me to do only surgery- he also was recommending translab. Complete Hearing Loss for left ear.

Third Guy told me retrosigmoid in that I had a 5-10 percent chance of preserving my hearing and that's what he wanted to go for.

Fourth Guy told me to do cyber knife (radiation completely) as I had no balance issues, and that I still had good speech discrimination despite my hearing loss. But I could preserve what hearing I had.

I chose cyberknife- less invasive, and I can tell you 7 months out, my hearing is almost the same.

My understanding is retrosigmoid is used to preserve hearing- if the neurosurgeon is stating that you are going to lose your hearing, why go through the hassle of surgery?

I was always biased towards radiation, but I found that the ENT industry as a whole is biased towards surgery and after three times being told surgery, I also was resigned to the fact.  If you want radiation, you need to fight for it and find the right doctor who you feel comfortable with. I really liked the treatment with Chang @ Stanford (4th guy) in that he was unbiased toward either surgery or radiation.  He was very specific in that if I had balance issues, he also would have opted for surgery versus radiation.  I was lucky in that I had no balance issues so I opted for cyberknife treatment and have been happy. I was not looking forward to recovering from surgery.

I will always be grateful to Mark, Bruce and Phyl for giving me the extra push to seek out radiation.  And you have to go to the "radiation people directly"- rather than going through the ENT- that is unless they have been trained in the 90's.  Dr. Chang explained that students in the 90's were taught to use both radiation and surgery- while older students (80's and 70's were only taught surgery)- hence the bias.

Hope this is helpful- (not so brief huh )- take care, good luck- Annie

[SPDC77]

Mauri,
I was just treated for my AN--it's about 1cm too. I met with a bunch of doctors who said I should do the surgery because of my young age (I'm in my 30's) and did a TON of research before I made my final decision. I received Gamma Knife treatment at UPMC on August 1st. So far I can say that it was, without question, the best decision that I could have made!!!!

I've had very few problems since the treatment.  I have some minor dizziness and occassional ringing in my ear (for up to 3 weeks after the procedure, but now I am feeling fine. I'm back to work, back to the gym, back to flying, back to my normal life. My hearing was not damaged by the procedure whatsoever. And when I consider the alternative and the recovery from surgery, it was a breeze.

UPMC is an incredible facility --they do more Gamma Knife procedures there than any where else in the U.S. and the technology was brought to UPMC from Sweden in the 1980's. It is a true center of excellence when it comes to Gamma Knife. UPMC has very impressive numbers and an extremely high success rate for all types of brain tumors.  My doctor was Dr. Kondziolka. He's an exceptional physican. I come from a family of doctors and we were all very pleased with his care.  Here is a link to UPMC's Gamma Knife web site so you can check it out: http://www.neurosurgery.pitt.edu/imageguided/gammaknife/

Good luck with your decision...I found the decision-making process to be the most difficult part of this whole situation. You will get through it and I trust you'll emerge stronger for having gone through it all.  I like to think it as a character-building experience...it somehow makes it so much easier to confront! 
I will be thinking of you and praying for you as you consider your options and seek treatment! 

Best wishes,
Susan

[Betsy]

Hi Mauri,

It seems like yesterday I was in the same position; trying to make sense out of everything and struggling to make a decision.  It's overwhelming, but the more you learn the more comfortable you'll be with your decision.  My AN is a little bigger than yours, and I still have good hearing.  After meeting with 6 different doctors, I chose radiation and was treated a little over two weeks ago.  So far my hearing is exactly where it was last May and I hope it stays that way!

You've gotten a lot of good advice so far and there's not much I can add.  It helped me a lot to go through some of the older posts on this forum and read everyone's story.  Every AN is different, but it helps to know other folks have gone through the same thing.

Best wishes to you,

Betsy

[Sheryl]

Mauri - I don't envy your position (deciding) at all as, after nine months of only thinking about my husband's brain tumor, he finally made a decision.  We'd wake up thinking about it; we'd go to bed thinking about it - meanwhile life went on and we couldn't think of anything else.  Even though different (he has a benign tumor called a meningioma), he needed to decide on another surgery (this was a regrowth) or radiosurgery (gamma knife, CyberKnife, etc). He will be undergoing CyberKnife treatment at the end of September.  Ironically, I am in the same situation with a benign tumor on the 9th cranial nerve (acoustic is on the 8th) which I've waited and watched for six years.  If and when the time comes for action, I have already decided on CyberKnife - geez maybe I should do something now and ask for a "two for one" special with my hubby!!! 

Keep us posted - as one of the tons of doctors we saw mentioned - do your research and homework so there won't be any "should have's, would have's, or could have's". 
Sheryl

[Mauri]

Thanks to all of you who replied. I am meeting with a well respected doctor in St. Louis on Tuesday for a consultation. I am hopeful that he will consider me a good candidate for the gamma knife treatment. If so, I am going to go this route.
I appreciate your thoughts and prayers.

                                       Mauri

[leapyrtwins]

Mauri -

just got around to reading this post, so I'm not sure if you've made a decision yet or not.  My neurotologist gave me the choice of surgery or gamma knife.  I chose surgery (retrosigmoid) and am very happy with my choice and the results of it.  The decision you make should be a decision you are comfortable with - some choose surgery, some choose radiation - it's basically a personal choice.   Just make sure you weigh all your options, consider the possible side effects of each treatment, and find the very best doctor you can.

Good luck to you,

Jan