Piedmont Hospital in Atlanta

[BeJoi]

After speaking with Drs. Mattox and Crocker at Emory, Kaiser informed me that, unless there was a specific thing that Emory offers that no one else does, I would need to go to a hospital in their network.  Piedmont Hospital has the same Trilogy System, so I have found a neurosurgeon affiliated with Piedmont and plan to go there.  I have a few questions:

1) Every time I mention that I want to do a longer-term FSR treatment, the doctors scoff at me and say that the one-dose GK would be the best way to go.  I have real reservations of doing the one-shot GK for my tumor and want the longer-term stereotactic radiotherapy.  Does anyone know of good reasons why FSR would be better than GK?  I'm going by my gut, but I would love to know what other people think about this.

2) A neuro-ontologist in Atlanta, who I saw for one appointment, told me that I would probably lose my hearing in the AN ear over time after radiation treatment .  He also said that my AN was only .9 cm (as opposed to 1.9 cm told to me by my ENT) and said that he measured it according to different parameters.  He also said that my AN had some kind of cyst on it that usually indicates it will be the sort of tumor that will continue to grow.   Has anybody else heard about this?  And what is the current thinking on hearing loss in the AN ear after radiation treatment?  Is it a done deal?  Has anyone maintained their hearing over the long term after radiation?

3)  Does anyone have experience with Piedmont Hospital in Atlanta?  They offer the Gamma Knife and Trilogy System, and I can only assume that if they do, they must know what they're doing.  I would really appreciate knowing anyone else's experience with this hospital and their radiation oncology department.

4) Lastly, what are the odds that the other ear would develop an AN? 

I'm not meeting with the neurosurgen (Dr. James Robinson) until May 15.  I welcome anyone's comments and answers, especially if someone has worked with him before.  His staff says that he has quite a bit of experience with ANs.  It's so hard to know what to do when you're working within the constraints of an HMO company. 

Thank you.

Beverly

[macintosh]

You're getting into questions that are being researched and debated by the top AN specialists in the country. If I were in your position, I would ask Mattox and Crocker's office to provide you with the most up to date info they have to justify FSR.

It is not automatic that you lose your hearing after radiosurgery, either one-shot or FSR. Different treatment centers claim different rates of hearing preservation, and Hopkins, for example, claims a very high rate with FSR.

Don't rush into anything. You have time to research your options. You could, for example, ask Piedmont and Emory to provide you with their longterm stats (in writing) on tumor control and hearing preservation, and use those numbers to bargain with your HMO.

Good luck,

Mac

[BeJoi]

Thanks, Mac, for your advice.  Stats would be good, and I'll see if they will supply them.  The problem I've noticed is that every doctor has a different opinion about everything having to do with ANs--how to measure them, how to treat them, hearing loss, recurrence.  It seems like such a crap shoot.

Thanks again,

Beverly

[Mark]

Beverly,

Here are my thoughts on your questions:

1) Every time I mention that I want to do a longer-term FSR treatment, the doctors scoff at me and say that the one-dose GK would be the best way to go.  I have real reservations of doing the one-shot GK for my tumor and want the longer-term stereotactic radiotherapy.  Does anyone know of good reasons why FSR would be better than GK?  I'm going by my gut, but I would love to know what other people think about this.

This is really an excellent questions to pose to the Doctors over on the CPSG board. However, based on having seen their answers to others in the past, they would probably say that there is preliminary data showing that staged treatments do increase the probablility of maintaining pre-treatment levels of hearing better than 1 dose. Based on the clinical studies that have been done on FSR which are usually around 3-5 years at this point, GK is about 65% for one dose and CK is around 75% for a three day treatment. However, it is certainly very reasonable to have one dose with GK and have a good probability of maintaining hearing

2) A neuro-ontologist in Atlanta, who I saw for one appointment, told me that I would probably lose my hearing in the AN ear over time after radiation treatment .  He also said that my AN was only .9 cm (as opposed to 1.9 cm told to me by my ENT) and said that he measured it according to different parameters.  He also said that my AN had some kind of cyst on it that usually indicates it will be the sort of tumor that will continue to grow.   Has anybody else heard about this?  And what is the current thinking on hearing loss in the AN ear after radiation treatment?  Is it a done deal?  Has anyone maintained their hearing over the long term after radiation?

Simple answer is the neuro-ontologist you saw is wrong, either woefully misinformed or a proponent of surgery and using a scare tactic I would guess. I'm almost 6 years out from my treatment and my hearing remains unchanged. GK has been treating AN's for 30 plus years and there are absolutely no studies that I have seen that indicate hearing is lost over the long term after radiation. Certainly the odds are much better than what surgery generally offers. I can't speak to the measurement variance between the two doctors and what parameters they are using. An AN with a cyst simply means there is a fluid pocket but I'm not sure that is any kind of indicator towards future growth. I do know that it doesn't dictate or preclude either surgery or radiosurgery for you.


3)  Does anyone have experience with Piedmont Hospital in Atlanta?  They offer the Gamma Knife and Trilogy System, and I can only assume that if they do, they must know what they're doing.  I would really appreciate knowing anyone else's experience with this hospital and their radiation oncology department.

I am not familiar with Piedmont, so can't offer an opinion there. Trilogy is a new and improved version of the radiotherapy machines and while it can be used adequately in radiosurgery applications it is not as accurate as the GK or CK. The reason machines like trilogy or Novalis typically use a longer ( 25-30 days) protocol is to adapt for lower doses due to the lower accuracy. CK will typically be either 3 or 5 day depending on the facility. It would be incorrect to assume more days is less radiation and "safer". It is compensation for machine accuracy, nothing more.

4) Lastly, what are the odds that the other ear would develop an AN?

95% of AN's are unilateral and the odds of having one occur in the other ear are very small. The exception would be if you have a genetic condition called NF2 which more commonly has a high risk of having AN's occur in both ears.

Hope that is helpful

Mark

[BeJoi]

It's very helpful Mark, thank you.