Newly Diagnosed 30 years old, 3 cm meatball

[Kaybo]

Jan~
My thoughts exactly...it is kind of like the old saying when talking about people that won't hire anyone that doesn't have experience - how are they going to get experience if no one will hire them?

K

[Mark]

Jan,

I'm not sure you are a rebel or not, but you are certainly an excellent risk taker 

I'm sure you had an excellent doctor and I know you're happy with the care you received and outcome. Certainly, surgeons have to start on someone first, second and work their way up the experience ladder. Maybe some are exceptional enough to have a shorter learning curve than others, but not every surgeon is equal. There are those who are top of their class in demanding medical schools and there are also those practicing who finished at the bottom as well. The indisputable reality is that an AN surgery is extremely technical that touches on an individual's quality of life when you consider hearing and facial function. The overwhelming consensus is that it takes a developed expertise to have a good chance of delivering a great outcome. There are no guarantees that an experienced surgeon , such as at HEI, won't have a bad day either , but the odds are better than someone doing their 5th one ever. Yes, someone has to be the doctor's first, and yes, that person can have a good outcome, but I'd bet the odds are significantly less than going with a doc who has done it a 1000 times. It's not a risk that I would choose to take given the consequences, but like everything else it's a personal choice and wise people can disagree.

Mark

[oHIo]

Swift:

Yes, it is true the new residents start on July 1st.  Many hospitals do not let residents do AN surgery, and if they did, I doubt any attending would let them touch a patient in July.  Now the team that comes by and sees you in the hospital is another story.  It will be filled with new residents and medical students who are going to be really excited to see a patient who had an AN.

Having a rare tumor makes us celebrities of sorts.  Instead of being asked for our autographs, we are asked for our MRIs. 

[leapyrtwins]

Mark -

thanks for the response; it's very insightful, but it doesn't really answer my question 

Maybe K said it better than I did.   How are surgeons supposed to become experienced if no one "hires" them because they don't have experience?  Obviously the "best of class" surgeons had to get their start somewhere.  And if all patients go with the "big guns", what happens when the "big guns" retire or die?  At that point do patients start to give "the other guys" a fighting chance so that they might someday become "big guns"?

Certainly if you look at the odds, docs who perform more surgeries and are more experienced should  have better outcomes, but that isn't always the case.  I could take a handful of surgery patients from this forum who had the same surgeon and they would all have different outcomes - ranging from perfect to "lots of issues".   IMO the best doctor in the world can't guarantee anything as far as results go.   

I also want to stress that while my doc certainly doesn't have the reputation of say a Dr. Brackmann, he isn't fresh out of medical school nor is he inexperienced by any means.  He's definitely done his share of AN surgeries, but given the number of ANs that are out there, it would have been totally unrealistic for me to have expected him to have done hundreds of surgeries each year.

As you say, I had an excellent doctor (two, actually) and I am ecstatic with my outcome.  Am I an excellent risk taker?  I don't think so.  I think I am just someone who believes in herself and her decision.  I am also someone who is passionate about doing what I feel is best for me - regardless of what others may think.  I want to encourage pswift - and everyone here - to do what's best for them and to be passionate about it.  You are right, personal choice is what it's all about.

Jan

 


 

[Mark]

Jan,

thanks for the response; it's very insightful, but it doesn't really answer my question

Well, it was the best answer I had for the price offered 

How are surgeons supposed to become experienced if no one "hires" them because they don't have experience?  Obviously the "best of class" surgeons had to get their start somewhere.  And if all patients go with the "big guns", what happens when the "big guns" retire or die?  At that point do patients start to give "the other guys" a fighting chance so that they might someday become "big guns"?

It's a fair question and sort of rings of that old military ad that used to be on TV, "I'm right out of school and where do I get the experience employers want - answer- Army Air force, Navy, Marines".  The answer to your question is beyond my pay grade or interest level to some degree. Maybe prisoners, maybe practice in an HMO where no one has a choice for awhile, most likely a steady stream of patients who blindly follow the recommendation of their ENT to the first surgeon their sent to. I really don't know, but I'm pretty sure I wouldn't feel morally obligated to "take one for the team" and put my quality of life at risk just so I could give a surgeon inexperienced with AN surgery a "fighting chance".

I could take a handful of surgery patients from this forum who had the same surgeon and they would all have different outcomes - ranging from perfect to "lots of issues".

Absolutely agree with you, as I do on the vast majority of your posts. Open surgery is extremely "human" and subject to variability ranging to the surgeon having a good or bad day, fight with their spouse, problems with supplies, anesthesia, etc. One of the reasons I ultimately felt more comfortable with radiosurgery was the computerization and team oversight to minimize the variability in outcome.

Am I an excellent risk taker?  I don't think so.  I think I am just someone who believes in herself and her decision.  I am also someone who is passionate about doing what I feel is best for me - regardless of what others may think

And I see myself in the same way , but chose a different path. In my view, you took a bigger risk with a "less" experienced surgeon than  I would have been comfortable with ,but I respect the fact that in your considered perspective and personal criteria it was comfortable for you. Conversely, you could fairly say that I took a bigger risk than you would have being the 4th patient on the second generation of a machine just approved by the FDA in 2001. But I was comfortable with my doctors and my understanding of the odds associated with each option. Fair enough 

At the end of the day, I think my comments merely echoed the position of the ANA web site which urges patients to seek out clinicians who are very experienced in AN treatment.

Mark

[Kaybo]

I just have to throw in that I PERSONALLY think that ole GUT thing is still a good indicator (of course, I believe that the "gut" is inspired, but that is another topic) -- I would rather have a Dr. who is semi-experience and has a WONDERFUL bedside manner and really listens to me and cares about me than the supposedly BEST DR. IN THE WORLD who doesn't give a fig about me or even really know anything about me or my case - just that I am AN#1892...just my opinion...

K

[pswift00]

I think there's something to be said for being close to home.  For me, Georgetown is 10 minutes from my home, which means that my wife can at least go home every night and be with the dog & cat after the long, stressful day of surgery, and all those post-op days, and though my brothers, sisters, and parents live 60-90 minutes away, they too can be close to home and not have the added stress of traveling to visit, staying in some strange hotel room, etc.  Just something else I was considering.

[Melissa778]

So sorry to hear aboutr your situation.  I am approaching the big 3-0 next month, I had a 2.2cm AN, rasiosurgery was an option for me, but my docs pushed for surgery because of my age and location (pushing into brainstem), so I had mine removed via translab May 15th, they did have to leave a bit behind on my facial nerve as my AN has grown into my facial nerve.  I had a wonderful outcome.  Yes, my hearing on the AN side is gone, but I have found SSD not to be that bad.  Of course that's jsut my personal experience with it.  I have had no facial paralysis or trouble.  My recovery was fairly smooth and I had wonderful docs.  Because they left a bit behind I will be opting most likely for GK later this fall to "zap" the rest of the tumor.  Best of luck to you in your decision.  I saw many docs before I made my decision.  I am from Ohio (toledo) and AN's aren't something they see here very often.  But I did end up with a wonderful doc who I absolutley love, that's what was most important to me.  I was confident in my doc and went into surgery actually feeling very calm.  Best of luck to you in your decision.

Melissa

[leapyrtwins]

Mark -

I totally forgot that old military ad, but now that you mention it, I remember it vividly 

And as far as your pay grade, are you making more than the moderators?  Just wondering . . .

Thanks for the thoughtful response, as always.  While we don't always agree, we don't always disagree either and I really enjoy reading things from your perspective.  You are more into the "medical" stuff and "whys" of things than I am, and it's nice to see your "take" on things    I sometimes fly by the seat of my pants, but it works for me 

K -

I agree with your last post 100%    While I wouldn't call my doc "semi-experienced", I don't think he eats, sleeps, and breathes ANs either.  He was the "guy" for me and many others and at the end of the day that's what's important to me.  I'm confident he'll be the "guy" for many other AN patients and it's kind of irrelevant to me whether he gains "best of class" status or not 

pswift -

IMO, and I have a lot of those as you can tell  , being close to home is something to consider when choosing surgery.  The hospital where I was treated was roughly 40 minutes from my home which helped a lot since my parents & sister were in charge of my children, but also wanted to be at the hospital for me.  I think it's also nice to be close in case for some reason you have to return there after being released - which is something none of us want, but does happen.

I know that others have traveled to other states for their surgery and say it's a non-issue, but it wouldn't have worked for me.

Jan

[hruss]

Hi,
I am sorry to hear about your diagnose.
I know I am writing with some delay - sorry for that - I just read the message and wanted to share with you my experience.
I have already had two retrosigmoid surgeries but these were only partially removals. My AN was huge and here in my county - Bulgaria, Europe- they just took as much as they could and recommended me have radiotherapy. Now I have an AN as big as yours left.
I want to get rid of this as you say "meatball" andI am looking for really good and experienced in ANs doctors. I talked to Drs in House Ear Institute, LA, USA and with ones in Hannover, Germany. They both recommended to me have another microsurgery because the tumor is big and presses the brainstem. It will be likely to have some healthy cells get irradiated. And since i am young and radiosurgery does not take the tumor out of my head, they all consider having a third microsurgery a better chioice.
It scares me a lot, I know what the most plausible outcomes are and I am trying to get used to the idea. I am afraid of the facial paralysis but I must be strong enough to face it!!!

You must be strong enough to face any choice you make and be absolutely sure about it.

My suggestion is ask for a number of opinions and just decide what you feel most comfortable with. You have already found a very good place to start your research.

Good luck and post updates!

Best wishes,
Hrissy