Risks of Gamma Knife versus Surgery

[oksandra]

Hi all,

I am trying to decide between Gamma Knife treatment and surgery.  I was diagnosed in April with an acoustic neuroma 2.7 x 2.2 x 2.4.  I have brain stem compression and have gotten differing opinions as everyone does.

I've talked to 4 surgeons so far, 3 neurosurgeons and one neurotologist alll of whom also have access to Gamma Knife or Cyberknife.  Two of the neurosurgeons recommend radiation (one prefers Gamma Knife, the other said Cyberknife or Gamma Knife).  One surgeon and the neurotologist recommend debulking with surgery.  I was really leaning toward the Gamma Knife with the idea that if it didn't work I could always do surgery later since studies seem to show that it was no more difficult to do after radiation.  However, the neurotologist raised the issue of brain swelling and tissue damage that he said could lead to death or at least the need for an "emergency craniotomy".  I called the surgeon who recommended Gamma Knife back and he said that he thought that debulking surgery with Gamma Knife after was a reasonable option, but he felt that the risk of swelling leading to death was so minimal as to not be a real concern and that he would personally choose Gamma Knife hands down.  On the other hand, when I did ask him about the worst case scenarios for Gamma Knife versus surgery, they were death (Gamma Knife) and total paralysis (surgery).  Clearly the risk of death is extremely small, but the neurotologist used the analogy that your risk of getting hit by a semi is very small, but if you do get hit by a semi, you get hit by 100% of it.

Since I have two small children (3 and 6), then I would say that total paralysis would be less horrible than death (though I know others might say the reverse), however, if the risk of death were so low as to be non-existent, then it does seem that maybe the risks of surgery might be greater.  Then there is the lurking risk, with Gamma Knife, of a malignancy later on.

I am hoping that some of you may have a good source for information on the various risks and also what risk factors you considered.  I understand that there is not a risk free option, but I would like to understand what choices I am making.  Also, since the surgeons recommending surgery do a combination of debulking surgery followed by Gamma Knife, I don't know if the standard comparisons apply.

[Jim Scott]

Sandra ~

As you correctly stated at the end of your post, there simply is no risk-free treatment option for ANs .  Although the doctors seem to be giving you worst-case scenarios, they are being honest.  Frankly, I believe a person could drive themselves crazy trying to precisely weigh the risks because there is simply no way to know what, if any, complications may or may not arise during or after surgery or post-radiation.  

I underwent debulking surgery (4.5 cm AN) with no post-op complications.  My 26-session FSR treatment was uneventful with absolutely no ill effects.  Later MRI scans showed the tumor exhibiting necrosis and some slight shrinkage.  

I wish I could offer you a more concise reading on the risks of various approaches to AN removal, but the reality is that every AN patient is unique and has a slightly different experience.  In my case, debulking and radiation were eminently successful but whether they would be as efficacious for you is a question no one can answer to a medical certainty.  I know I can't.  

Some of the stress involved with ANs is not only with a specific treatment approach but in choosing a treatment.  I wish you all success in making that crucial decision.    

Jim

[oksandra]

Jim - you are so right about a person driving themselves crazy trying to weigh the precise risks.  I have also been driving my surgeons crazy, as you can imagine. 

Still, everyone please feel free to burden me with any information that you can right now.  I need to make a decision and I've been wavering for a couple of months so it is time to go into information overload mode.

Thanks!

Sandra

[Tod]

Sandra,

It might be helpful to think about how the risks of either are unpackaged as well as all the other issues.

There is lots of information on this site about the various radiation options. Certainly, swelling is a risk, especially around the brains stem. That is scary enough. On the other hand, the recovery can be minimal compared to that of any of the surgical options.

On the other hand, any surgery under general anesthesia has its own risks. The docs are pretty good about understanding and cataloging all the possible risks with micro-surgical options. In my case, and others that I have read, the neurosurgeon got in and found the tumor to be stickier and with much better blood supply than he expected. Fortunately for me he stayed in there for 23 hours to get as much as he could. Now we are looking at rad options for the remaining 10%.

I think you need to continue talking with docs. If you haven't sent your MRIs to the House Ear Institute already  that might be helpful since you will get their advice as well - for free. I do believe that the decision gets easier when most of the experts you talk to are saying the same thing.

To be blunt, you know the outcome of not treating this tumor, especially with brain stem compression. Thus it follows that either option is probably an improvement in your odds of survival.

It seems to me that if radiation is a doable option, that would be the easy place to start. I would worry less about the risks and more about the docs feel will give you the best long-term outlook.

Good luck with this decision! I remain convinced that I was lucky not to have a choice.

Tod

[oksandra]

Thanks, Tod.  Although I am grateful to have a tumor that is not overly big, I do agree about the benefits of not having to make a choice.  If my tumor were a couple of millimeters smaller, all the surgeons I saw would recommend radiation and if it were 3 or 4 millimeters bigger, they seems like they would all recommend surgery.  Sigh.  I do keep trying to remind myself that the risks are very low with either option.

[leapyrtwins]

I had the choice of radiation and surgery, and ultimately chose surgery.  It's a very personal choice though and you should do what you feel is best for you.

I'm a little curous though about the idea of debulking your AN since it's not considered to be large.  3 cms is usually the threshold for doing radiation and at 2.7 cms you haven't yet met that threshold.

My AN was almost 3 cms at the time of my surgery and my surgeons (neurotologist and neurosurgeon) chose to just surgically remove it - not debulk. 

Jan

[oksandra]

Hi Jan,

I was surprised too, since all the research I had done getting the MRI results from my neurologist also said that under 3 cm was a good candidate for Gamma Knife.  The two docs suggesting surgery said they typically only do Gamma Knife on 2.5 or less and since I had one dimension that was 2.7, they wouldn't recommend it.  I'm not sure how much had to do with the brain stem compression.  On the other hand, two neurosurgeons with good reputations among other doctors including one that initially recommended surgery said that radiation was the best choice for me.  The one that recommended surgery initially actually reread some research before calling to recommend radiation treatment.  I was pretty comfortable with that option until the specter of death due to brain swelling came up.  Of course, if the initial surgeon had recommended GK, I probably would have done it without hesitation.

[Lizard]

Most of us agree that this can be the hardest part of the process, but once you decide its like a big weight lifted off your shoulders.  I do worry about swelling if you have GK or CK, but what about fractionated radiation? As Jim said he did have this, but after a debulking surgery, however this is him and your tumor could be in a totally different place.  If you are really adverse to surgery, and the threat of swelling is high in my nonmedical opinion this seems like a good option for you.  I just want you to know that you just have to go with your gut, there is really no right or wrong.  Nobody will tell you what to do, so the gut is the best judge.

Good luck and please keep us posted with your decision.
Take care,
Liz

   Ask anything we are a wealth of knowledge!

[Larry]

Sandra,

This is a little hobby horse of mine. When talking to surgeons or radiologists or anyone else, ask them what their statsistics are. Not the industry stats.

Last i was tolde was that mortality of surgery is 1 in 500 and 1 in 10,000 for radiation treatment. But those stats are generic and not specific tio AN surgery.

I had surgery 10 years ago and it grew back and i had radiation treatment about a year ago. the purpose of radiation treatment is to stop it growing not to necessarily remove it from your head. My suggested questions you ask your medicos are:

Surgery
1. What is your mortality rate.
2. What is the % of regrowth following your surgery (get qty of ops as well)
3. What is your % of facial (any) paralysis following your surgery
4. What is your % of CSF leaks following your surgery

Radiation
1. What is your mortality rate
2. What is the % of the AN still growing (not killed) following your treatment
3. What is the % of facial paralysis following your treatment.
4. How old is your equipment
5. Whan was the software last updated
6. What is the skill and experience level of your tecnicians - this is a vital question and watch his body language when he responds. At the end of the day if the technicians are no good - forget it.

It is vital you don't get industry averages or %'s - ask for your medico's numbers.

I had so much confidence in my radiaologist because he quoted a 100% success rate with radiation treatment and offered me to randomly select a list of his patients as referrals. I actually new a few so i contacted them and they were rapt with the treatment - anyway, that was a personal choice.

I think you'll be able to make an informed decision once you ask and get answers from tyhe above questions.


laz

[mk]

Hi Sandra,

it is indeed a very difficult dilemma with an AN that is close to the cut-off for radiation, and it seems that you are already well educated on the pros and cons.

I think that for an AN of your size the "risk of dying due to swelling" is a bit overestimated. I have read tons of research papers, and based on all reports this risk is very minimal, and applies to much larger ANs that have been treated with radiation. Certainly the risk of dying during surgery, is much more significant (although still very small). In some studies the worse case scenario in patients with larger ANs (usually over 3.5 cm) that swelled is that they developed hydrocephalus, resulting in the need for a shunt. This is why most centres won't do radiation for ANs larger than 3 cm.
Nowadays experienced centres will either use smaller doses of radiation, or more fractionated treatment, to minimize swelling.

It seems to me that since many of the doctors you have seen recommend radiation, the existing compression is not too bad. Usually these doctors are very conservative, and they won't recommend radiation if they think that you are at risk.

you are doing the right thing of researching and consulting as much as you can, and eventually you will settle into your own decision, that you feel most comfortable with. It is certainly not an easy journey.

Marianna

[oksandra]

Thanks all for the support and practical advice.  Marianna, that summary of the research that you've read was very helpful as that is the kind of information I've been trying to gather.  Honestly, I think many AN patients are more well read on the topic of radiation than neurosurgeons.  I've been trying to find time to read more research, but it is very hard with the small kids.

The two surgeons who recommended radiation came very highly recommended by doctors.  One in Oklahoma City (Emery Reynolds) who was my neurologists first choice, and whom a doctor neighbor said was the "big cheese" in neurosurgery at the University of Oklahoma before he left for another hospital.  The other neurosurgeon (David Fell in Tulsa) was recommended through a friend network (a doctor who called a neurosurgeon he respected to ask for his recommendation).  It does help me feel more confident in their responses.

I'm leaning heavily toward radiation at this stage.  Dr. Reynolds recommended a radiation oncologist who I am trying to get into see.  I can ask her about her stats.

[mk]

Sandra,

since the highly recommended surgeons you talked about said that you are a candidate for radiation, this means that probably you don't have yet any serious compression in the brainstem or the fourth ventricle.
Here is a word of caution - just from my very informal stats, reading this forum. Even though everyone says that ANs grow by an average of 1-2mm a year, it is my (again I need to stress that it is only my observation), that larger ANs *may* grow faster, or in growth spurts. It may be a question of percentage of growth ie. 1-2 mm is a different percentage when you have a 10 mm AN, instead of a 30 mm AN.

I don't want to confuse you more, all I want to say is that IF you decide on radiation it may be better to do it sooner rather than later, because there is a possibility of more rapid growth than anticipated. This is from my own experience, when upon diagnosis my AN was 2.4-2.5 cm, with no major compression, but in the 6 month interval between diagnosis and treatment it had grown to almost 3 cm.

Marianna

[nanramone]

hi Sandra - I'll repeat info I wrote earlier today, which is similar to the post just before mine: my AN grew 4mm in 3 months, so don't wait too long if you're considering radiation...I was a bit surprised. I feel happy that for now, the worst of this seems to be over with.

Also, as so many people have noted, no two of these things is alike. Neither are there any predictable outcomes. I was told to return to normal activity. Normal for me is quite active, so after GK, I briefly napped, then went swimming, had a light workout in the gym and went to bed. The next day I walked for miles, swam and worked out again, and by night had a massive headache, went totally (temporally) deaf in my left ear and was very imbalanced. I was told to take steroids right away. Most acute symptoms have now subsided....but who knows what's next? It's quite interesting.


I hope all of our info serves to inform rather than confuse you further. I was guilty of overthinking this thing before making a treatment decision. I guess it's stressful for us all.

Good luck to you....

Nancy

[oksandra]

Thank you Marianna and Nancy.  This is helpful information.  It has been two months since my diagnosis, so I need to get on the stick.  Actually, if I had not had this HMO, things could have moved a lot faster because I would not have had to wait for referrals, or search around for doctors on my plan (since the ones on my plan advocate surgery and the ones off my plan advocate GK or CK).  HMOs are not good for your health!

I think I am pretty well decided on doing radiation treatment, so I hope I haven't had a growth spurt that precludes it!

Sandra