Joining you from Australia

[notnowkato]

Hi - I'm another new one to the site.

I'm 31, living in Brisbane, Australia and was diagnosed with an AN 3 weeks ago. I have no hearing loss and no balance or headache issues - my only major symptom is slight numbness in the lower left of my face and tongue where the tumour is pressing on the trigeminal nerve. I was sent to a neurologist who predicted multiple sclerosis but instead found a 2.7 x 2.9 x 2.8 cm left side AN on my MRI. Whilst I am incredibly thankful that this is benign and treatable I suspect her declaration this would all be over by Christmas was optimistic at best!!

I've only met with one neurosurgeon so far but there were a couple of questions I wanted to ask of people who have been through this process from the other side of the desk (I'm sure there will be many more to come).

First, how many surgeries using the specific surgical approach need to be performed to ensure the surgeon is well up the learning curve? I guess not all surgeons can offer the thousands some at House have performed, but is less than 100 a concern?
Second, is it important that most of these should have been performed with the same team? Sort of a joint magic number!
Third, is it important that they've treated a good number of 'larger' AN's before - or is it all the same once they're operating?

I'd like to say thanks in advance to all of you who post on this site. It's been a mine of information and taken me from feeling like I'm in a blind panic and alone, to being scared but a little bit more informed and in control.

Kate

[Nickittynic]

Hello Kate and welcome!
I'm jealous of you living in Brisbane! I spent three weeks in Australia a few years ago (traveled the coast from Sydney to Cairns) and cannot wait to one day get a chance to go back!
In answer to your questions, though, I'm not sure what the magic number might be, if there is one. My doctor over here on the east coast US said he'd done "over 400" and that he'd partnered with the ENT for "hundreds". I do think it's important they have experience working as a team but as for an exact number, I'm not sure.
Welcome again!
-Nicole

[Jim Scott]

Hello and welcome, Kate ~

Of course I regret that you were given a diagnosis of an acoustic neuroma but it beats MS, I suppose.  I want to thank you for joining the forums and I hope we'll be able to help you with your questions.  Let me try:

1.  Experience counts with AN removal surgery.  It's very 'delicate' and not that common.  Any surgeon with less tha 100 of these surgeries would definitely be a concern to me.  I rejected the first neurosurgeon I was referred to because he rather reluctantly admitted, after much prodding, that he had performed 'perhaps' 60 such operations.  The neurosurgeon I eventually selected had thousands of AN removal surgeries on his resume - and he wasn't with HEI.  There are many surgeons with respectable AN removal experience available but you may have to do some searching to find them.  We have a few members in Australia that had successful AN surgeries.  They post here often and may be able to give you some direction.     

2.  I would prefer the surgical team have worked together before.  It certainly seems logical that a team with prior experience together would be preferable.  My neurosurgeon had a longstanding 'hand-picked' team (including O.R. nurses) which gave me confidence.  He refused to perform AN surgeries at a prestigious, teaching hospital nearby (Yale Medical Center), even though he had privileges there, because he would have to use Residents and Interns and he refused to do so with his AN surgical patients.  I had to admire him for that level of concern and professionalism. 

3.  Again, this is simply one person's opinion - and I'm not a physician - but I would assume that a surgical team that had experience with larger tumors would be preferable.  The surgeon does the actual removal but his support staff (doctors, nurses, etc) are invaluable and their collective experience is crucial, in my opinion, as anything could happen and you want an experienced team of professionals that are capable of handling whatever situation may arise during the surgery.   

I hope you'll visit the forums often.  We know what you're experiencing and we want to help in whatever way we can. 

Jim

[leapyrtwins]

Hi, Kate and welcome 

While it's highly recommended you find a doctor with lots of experience treating ANs, there is no magic number.  Just as there are no guarantees when it comes to AN treatment.  Before I had my AN surgically removed, I had no idea how many ANs my neurotologist had removed and to this day I couldn't quote you a number.  I knew he had lots of experience, plus I had faith and confidence in him and his abilities, and that was good enough for me.  The same applies to my neurosurgeon.  My outcome was excellent and I'm 100% sure that they were the men to do the job 

Most doctors work in a team and it's a good idea to get a team that has worked together extensively.  My neurotologist only has one neurosurgeon he works with (won't do surgery with any other); he also only has one radiation oncologist that he will do Gamma Knife with.

In my opinion, as long as your doctor has experience in removing ANs, size shouldn't matter.  The size of your tumor isn't all that large in the scope of things; some on the forum have had tumors of 4.5, 5, and even 8 cms 

Good luck in your informational search.  It's natural to be scared when you're diagnosed with an acoustic neuroma, but you'll get through it - and we're here to help you.

Best,

Jan 

[notnowkato]

Thank you all for your replies. They have given me a lot more to think about. I realise everyones journey is different, but it is so helpful to hear of others experiences.

I think my strategy at this stage is to talk to several more specialists, even if I eventually schedule surgery with the original group I've been referred to. Hopefully that gut feeling will lead me in the right direction and I'll find someone I feel confident enough to take the next step with.

Nicole - I agree Brisbane is lovely. I moved here several years ago and still cannot shake the feeling, despite work, of being on a very extended holiday!

Thanks again,
Kate

[sgerrard]

Nicole - I agree Brisbane is lovely. I moved here several years ago and still cannot shake the feeling, despite work, of being on a very extended holiday!

Despite work? Ooh, I need to get me some of that. 

Welcome to the forum, Kate.

Steve