Waypoint,
Welcome to the first day of your AN journey and resulting flood of information, both depressing, uplifting and contradictory. I don't know if you've had an opportunity to read my story, but I think my experience is pretty representative the path you've started on, as well as of everyone here, regardless of what treatment decision they ultimately made. The information you got today is something for you to consider, but also to challenge and seek out additional consults from experienced practioners. By the way, good for you to take your wife along. Mine went everywhere with me and having the second set of ears to write down information is invaluable. It is so easy to go into semi shock when you hear some things that it's easy to miss some critical stuff in the consult.
I have heard some other folks discuss Dr. joseph Chang in Houston in the past and I'm willing to venture a guess that he is a otolaryngologist, which means his bread and butter way of treating AN patients is surgery. If that's not the case, I'm confused because his information on radiosurgery is so poor it would be hard to believe he actually practices it. One suggestion I would make is to go to the "ask the doctors" section of the CK patient support web site and paste your post for Dr. Medbery and Spunberg to comment on.
Now, I'm not a doctor , but I did stay in a Marriott Courtyard last night ( which I think is better than a holiday Inn express
), so I'll offer my perspective on some of what you were told.
He said that radiation wasn't really an option, because of its size and my age, but it was my choice. Wrong - my AN was around 2.0x1.9x1.7 so it wasn't that significantly different from yours. The rule of thumb is that the ceiling for AN's being treated by radiosurgery is around 3 cm. I was 44 when I was treated and while 36 is younger, I don't think you would find any radiosurgeon that would see you being at any increased risk for anything becuase of your age.
The long term successfulness of radiation isn't yet known an regrowth is possible Not buying that one either. GK has been used on AN's since 1969 worldwide and since the late 80's in the US. That's about 40 and 20 years respectively and the studies continue to show a failure to control or regrowth rate of 2-3%. Most peer reviewed studies on surgery display figures between 5-10%. That covers a wide range of surgeon abilities and the extremely experienced ones like HEI are certainly closer to the 5 or better figure, but that puts them in the same ball park as the radiosurgery studies.
The first decision is usually your best chance at eliminating AN. If they have to go back 10yrs from now it will be more dicey I think I understand this one, but based on the stats above, going back could happen in either case by some percentage odds and assuming the AN can't be zapped again, then surgery will have complications with scar tissue either way.
So my options are TransLab or Retrosigmoid. Both approaches carry the same equivalent risk. With Translab I'm sure to lose my hearing. With Retro, his said that the chances of hearing preservation is in the single digit %. He said i had a 70%-90% chance of no damage to the facial nerve. The risk was the same either way I go. yes, given the size of your AN and if you choose surgery, then those would be the two approaches used. Yes, translab would sacrifice hearing, but typically allows better access to the facial nerve than the retro approach, which also has a higher incidence of headaches following surgery. I don't remember you saying what your current hearing level is but I was given a 10-20% probability of saving mine with retro so his single digit number is pretty good. AN hearing preservation decreases with size in surgery, but size is less of a factor with radiosurgery. In terms of the facial nerve, I think the better description is "function", i.e. how does it work. Many surgeons grade their performance according to observable damage, most patients I know grade it by how it works after treatment. 70-90% is quite a range to almost be meaningless to me, but based on what I remember being quoted for a 2 cm, I would say the 70-75% range would be about right. The comparative figure for radiosurgery is around 98-99%, so even if hearing is not an issue and the facial nerve , as it should be, is the priority, that is something else to consider.
The long and short of the above is that you have gotten the first pieces of information to solve your personal puzzle, but I think you need to seek out some more to make sure your comfortable with your decision. Both options in the hands of expereinced people can have good outcomes and everybody I know on this site will be very supportive of whatever decision you make. I do think it is imperative to have doctors provide good, honest , accurate information to patients on both options and I get "miffed" when I see just flat out erroneous or biased info as this doctor gave you.
Good luck
Mark
