Dr. Leonetti at Loyola and Mayo in Rochester

[suelay]

I am another newcomer and like many of you confused and scared.  I was diagnosed with an AN a couple of months ago.  My doctor discovered it with an MRI with contrast.  He suspected that was what I had given that I had significant hearing loss, but only in one ear.  My tumor is 16mm x 8 mm.  I am 44 and, other than hearing loss, have no symptoms I would attribute to my AN. 

The  medical community's lack of consensus and the passionate feelings about the various approaches/treatment is frustrating, but given what I have read and heard, understandable. 

I was referred to Dr. Leonetti in Chicago (Loyola) and he appears to be excellent; however, his assistant told me he would not consider gamma knife on someone as young (boy is that a relative term) as I am.  So, I am planning on going to Mayo in MN where both procedures are in the mix and see what they think.  Luckily, I have the means and a job that allows me to do a little looking.  I welcome any of your suggestions or  thoughts.  s.

[Mark]

Suelay,

I was 44 when I had CK five years ago and I think you can find a lot of very highly respected experts in the field who would have no problem with radiosurgery at that age. As you indicated there is not a lot of consensus amongst the clinicians out there based on their particular bias so you have to be careful about who you choose to work with.

Mark

[suelay]

Mark,
      Thanks.  How are you post-CK?

[Obita]

What does age have to do with GK? 

What am I missing here?  Thanks,  Kathy

[Mark]

Suelay,

I'm doing wonderful 5 years out from treatment. My full journey is posted over on the cyberknife support board, but essentially my AN has shrunk about 25%, facial nerve is unchanged at 100% and hearing level is unchanged post treatment at about 50% high frequency loss but 96-100% speech recognition.

Mark

[Mark]

I think the age / radiosurgery comments generally arise from surgery biased neurosurgeons who are indirectly ( or in some cases directly) promoting the malignant transformation myth. The argument generally runs along the lines of there being no long term studies and what would happen if it becomes cancerous down the road. This is predicated on the fact that GK ( and all it's descendants such as Novallis and CK) have been around the US since the Mid 80's. So with "only" 20 years of data, what "might" happen if you have a life expectancy of 40 more years. These same docs seem to forget that GK started in Sweden in 1969 , so we're coming up on almost 40 years with no statstical evidence that radiation treated AN's have a higher probability of becoming maligant that surgery cases. In general, my understanding of radiation is that the risk of cancer occurs through cell mutation which is associated with low levels such as are given to other parts of the body where radiosurgery historically has not been an option ( CK is changing that). Radiosurgery such as with GK delivers a high dose which kills tissue, thus mutation does not occur as it has been explained to me.

Mark

[stein78]

Hey Sue!  I just wanted to put my $.02 in on Dr. Leonetti.  He did my surgery in May of last year and I am doing great!  I was 27 years old at the time and he also wanted me to stay away from radiation because of my age.  Honestly, I wanted it out of my head for piece of mind anyway.  If you decide to go the surgery route, you can't go wrong with Dr. Leonetti.  Best of luck to you.

[suelay]

Thanks so much for the information.  Glad you are doing well.

[gcb]

Sue, first off welcome to the forum, this is a great place for information. Take a look at my post from last year. http://anausa.org/forum/index.php?topic=349.0 . Read the whole thing, on page 2 of this post I supplied some additionally information after I met with Dr. Lunsford @ Pitt.

FYI Dr. Chandler from Northwestern performs both surgery and GK, it’s a little closer then going to MN.

I'm currently post GK by one year and am doing great. The only issue I’ve had is some additional hearing loss post procedure.

If you need more information let me know. Bottom line is it’s your decision, do as much RESEARCH as you can so you’re comfortable with your decision.

GCB

[sirialison]

so hopefully a reply two weeks after your original post isn't too late for specific info you might be searching for. glad to hear you have the time and the means to search!

 i don't know much about gk but  i did have retro-sig  surgery at mayo with drs. link and driscoll in november 2004. i was 40 at the time. any specifc questions i can answer.

best wishes to you on your journey.