Newly Diagnosed but questioning surgery vs. radiation

[Dog Lover]

Hi Rose,

I had my 9mm AN removed surgically, mainly because I went to a very experienced AN surgeon and he was very against radiation. He also told me that with GK, hearing tends to dramatically decrease after 5 yrs.  I had a mid fossa approach, and have been told my hearing was saved and would be back to what it was before surgery after all the fluid was gone. Hearing has come back, but it's still a ways away from where it was pre-op. Don't know if there is still fluid, or if this is just the way it's going to be. Either way, it has improved and is perfectly liveable.

Good luck with your decision. in addition to the surgeons / hospitals-clinics that Hruss mentioned, Dr. Bruce Gantz at the University of IA Hospitals & Clinics is a very experienced AN surgeon who sees AN patients from all over the country. Another recommendation for an opinion.

Cathy

[rosewang]

Ok, I've talked to both Dr. Chang at Stanford and Dr. Brackman at HEI and am getting conflicting info. Dr Chang says my hearing preservation rate is 80% from cyberknife while Brackman says it will be 50%. Conversely, Dr. Chang says that any micro/invasive surgery leaves me little chance of hearing preservation while Dr. Brackman said his rate is 65% to 70%. They must be looking at different studies but leaves me even more confused. How can I make a good decision with opposing statistics from experts?

[Dog Lover]

That's a tough one. Maybe it just has to do with their own opinion? My dr told me that hearing preservation with the mid fossa was 70%. Maybe that's HIS rate of success? I don't know.

From what I've ever heard or read, House is the expert on ANs. My nurse told me that my doc only had to ever call them once with some very complicated case.

If you're confused, then maybe you need to get more opinions.

Cathy

[leapyrtwins]

How can I make a good decision with opposing statistics from experts?

Perhaps consulting with a doctor who performs both surgery and radiation might help.  Although no doctor can guarantee you anything 100% - I'd imagine Brackman is in favor of surgery because that's what he does and Chang is in favor of CK because that's what he does. 

Jan

[fbarbera]

Rose, Welcome to the world of Acoustic Neuromas -- it is a little shocking, isn't it?!   I had precisely the same experience with surgeons claiming they would save my hearing while other neurosurgeon who were trained in radiation (including those, like Dr. Chang, who do both) basically said I would almost certainly lose my hearing in surgery.  After seeing the surgeons, I consulted with three separate neurosurgeons trained in both surgery and radiation.  I felt I needed all of these consults to sort through all of the conflicting information out there.  I describe my own consultations and how I reached my own decision in my website below.   The best way to sort through it all is by talking to more people (doctors and patients).  And if you have the stomach for it, you could research medical abstracts on pubmed.com (I explain a little about this in my site as well).  Eventually, you will reach clarity.  Good luck and please feel free to contact me if I can help further.  Francesco    

[leapyrtwins]

(including those, like Dr. Chang, who do both)

Am I reading this correctly?  Dr. Chang does both surgery and radiation?  I obviously haven't read every post on this forum, but I don't recall anyone ever mentioning him doing surgery.

If he does do surgery, I apologize for my assumption that he only did radiation.

Jan

[sgerrard]

Hi Rose,

I think Dr. Brackman is telling you about averages from all radiation treatments, while Dr. Chang is telling you about his own results at Stanford; and conversely, Dr. Chang is telling you about all surgeries, while Dr. Brackman is telling you about his track record with middle fossa at HEI. They are not comparing experts to experts.

If you are down to middle fossa with Brackman, or CK with Chang, then you are down to the two best options available for preserving your hearing. Since no one can tell you if either procedure will work in your particular case, this is about as far as facts and figures will get you. Fortunately, if you choose one of these two, you will be making a good decision, no matter which one you pick.

Time for a gut check, I think. What does your stomach think you should do? If I said I was going to flip a coin, which way do you secretly hope it would land?

Steve

PS: Yes, Jan, Dr. Chang is a neurosurgeon. He does do some AN surgeries, but I think most of his surgery work is on other skull and spine tumors. He is partial to CK for ANs.

[leapyrtwins]

Thanks, Steve.

It wasn't my intention to mislead anyone, but I'm thankful for Francesco (and you) correcting me.

Guess you can learn something new every day 

Jan

[Tisha]

I think you hit the nail on the head, Steve.   Dr. Brackman is probably lumping ALL radiation...Gamma, CK, Novalis.   And with that, 50% is probably the correct %.  I was lying in bed last night a bit miffed and upset to think a world-renowned AN surgeon would be misleading prospective patients.  However, if Rosewang specifically said CK, then he was misleading her.   I know this is a business, and I appreciate that...and I'm sure that docs try to "pull" you over to their side by not being very upfront about all the options and statistics (I'm sure some do), but I do find it a bit unethical and immoral for them not to do so (even if it's just a little), with so much at stake for all of us...just for some greenbacks.

I think I"m going thru my "angry" stage of grieving these last few days. 

Tisha

[msmaggie]

I know it was an eye opening experience when I started dealing with drs. after being diagnosed.  I can't even get drs. to agree on my diagnosis, much less a treatment.  Most drs. give you info based on their expertise, and they do defend their own little arena.  I don't think it is malice on their part, just a bit of being overly confident in their own territory.  Trouble is, it leaves us as patients scrambling to find the middle ground in alll this.  I've never had to become such an advocate as I have in this particular stage of my life.  My advice to anyone is to do your homework!  (ignore the fact that I am a teacher!)

Priscilla

[Mark]

Hi Rose,

I think Dr. Brackman is telling you about averages from all radiation treatments, while Dr. Chang is telling you about his own results at Stanford; and conversely, Dr. Chang is telling you about all surgeries, while Dr. Brackman is telling you about his track record with middle fossa at HEI. They are not comparing experts to experts.

If you are down to middle fossa with Brackman, or CK with Chang, then you are down to the two best options available for preserving your hearing. Since no one can tell you if either procedure will work in your particular case, this is about as far as facts and figures will get you. Fortunately, if you choose one of these two, you will be making a good decision, no matter which one you pick.

Time for a gut check, I think. What does your stomach think you should do? If I said I was going to flip a coin, which way do you secretly hope it would land?

Steve

PS: Yes, Jan, Dr. Chang is a neurosurgeon. He does do some AN surgeries, but I think most of his surgery work is on other skull and spine tumors. He is partial to CK for ANs.

As usual, I would agree 100% with Steve's response. To provide a little more elaboration on the PS, last conversation I had with Dr. Chang he indicated he was about 50/50 An surgeries vs. CK, but the surgeries were pretty much limited to large ANs (> 3 cm) and mid to small size he favors CK

Mark

[Mark]

That's a tough one. Maybe it just has to do with their own opinion? My dr told me that hearing preservation with the mid fossa was 70%. Maybe that's HIS rate of success? I don't know.

From what I've ever heard or read, House is the expert on ANs. My nurse told me that my doc only had to ever call them once with some very complicated case.

If you're confused, then maybe you need to get more opinions.

Cathy

I think it's important to keep in mind that surgery results are much more size driven than radiation the small to medium range where they are both options. Mid fossa tends to be utilized only in smaller size tumors where hearing preservation is generally higher. On the flip side there was an excellent study by UCSF a while back comparing Mid Fossa to Trans lab outcomes relative to facial nerve preservation which demonstrated comparable results below 1 cm , but declining results for mid fossa from 1-2 cm.

As a general statement, I think its safe to say that in small AN's ( < 1 cm) that radiation and surgery can offer comparable facial and hearing preservation results, but beyond that size surgery outcome probabilities begin to decline while radiation stays fairly constant.

Mark

[rosewang]

I think Steve made a good remark about the coin flip. I do secretly wish for CK but that is because I am a wimp and dont like knives!

To clarify, I dont think I specifically said CK when talking to Brackman but may have said radiosurgery. I actually think both docs have a point depending on which data you reference since I dont think there are any large studies which have a 3 decade history showing the long term effects of CK or GK while the recent reports do show better results for someone with my stats.   However, the research reports are limited to a hundred or two hundred people in terms of follow up which is what makes me a bit nervous. Dr. Chang did say out of 700 patients that he treated with CK, he only had 8 or 9 patients where they had tumor growth or some other kind of failure (not sure what). And if out of his patients, his rate is 80%, that seems pretty high to me and better than the 65% that Dr. Brackman quoted me for the retrosigmoid approach he recommended for me.

At this point, I am leaning towards CK but still need to ask a few more questions before I take the plunge. Thanks for all the supportive advice guys! will keep you posted

Rose

[leapyrtwins]

I do secretly wish for CK but that is because I am a wimp and dont like knives!

Rose -

Don't sweat "the knives".  If you do decide on surgery, you'll be asleep and never feel a thing.  In addition, the guys with "the knives" have a whole of experience with them.

I can understand your concerns, though.  One of the things I found freaky about radiation was the metal frame they would have screwed in my head    Interestingly enough, that scared me a whole lot more than the "the knives" 

Just call me crazy - it's been done before 

Jan