Looks like I'll be a member of the Retrosigmoid club

[Adrienne]

I finally met my neurosurgeon after an 8 week wait (Dr. Akagami at Vancouver General in B.C.).  You should have seen my list of questions!  I was glad he never made me feel rushed, and took the time to answer everything.  I was in there for 1 hr 10 minutes!  Talk about a confident (cocky?) guy!  He assured me with confidence that he is the top surgeon for AN's in all of Canada, and one of the top for North America (gotta love that modesty.....LOL).  I was concerned about statistics to do with how often he has done this surgery so I called down to the House Ear institute in California and spoke to a doctor there.  They told me that they would *hope* that a surgeon has done at least 60 of these in his/her career, and does 2-3 every 2 months at a minimum. (he was trying to help me put some parameters around what a decent amount would be).  With that in mind, I asked Dr. Akagami the questions, and was happy to find out he does between 30-50 per year, and has done so since 2001.  Even at the lowest calculations, that means about 210 of these.  He guestimates one every 1-2 weeks.  So overall, those sound like pretty good rates.

More important than that, were his personal statistics on things like facial paralysis.  He told me that for a tumor of my size and placement (3.1 x 3.0 x 2.5....you'll note this is higher than my signature stats.  Lucky me, it's bigger than they thought!) has about a 50% chance of paralysis nationally, but that his statistic is up around 90% (success rate).  He did caution me that it is likely I will experience facial weakness, and it could last anywhere from 6 wks to 6 months.  Please understand, I know everyone is different....I am just repeating what he said).

The bad news is that he has the longest wait times of any surgeon in North America for this type of surgery (so I'm told, who knows?)  We're talking months instead of weeks.  :-(  The worst part about that is that they won't give me a date.  They say they don't give dates until 2-3 weeks before the surgery b/c it changes too much due to critical cases being put ahead.  :-(  Best guess is end of June, beginning of July.

He told me that 3cm is the maximum size they would do radiation on this type of tumor, and that they strongly recommend against it in this case b/c of the fear of slight swelling increasing the size and causing me even more difficulties (I have balance, dizziness, facial shocks and hearing loss).

He highly recommending the Retrosigmoid approach, because A) he is extremely experienced in it, B) he likes the angle that it allows him to view the tumor from, C) he has had high success rates with it, with less than average complications.  So even though I went in there thinking I was going to get Translab (for fear that Retro would be more likely to have facial nerve complications and headaches), he assured me that neither of those were more likely.  I trust him, and will go ahead as he wishes.

Guess I don't need to tell you how scary going over all of the potential complications was!!!???!  Yikes!

They estimate the surgery taking 8 hrs, and after listing off a team of 15 people in the room I stopped counting.  Unbelievable!  He mentioned me being 'braced' on the head during the surgery (can anyone give more details about what this is about?  I understand it's to keep me still.....).  If all goes well, he guesses 3-4 days in hospital.

Lots of information to process!  Thanks for listening, and for all of your input to date.

Adrienne

P.S.  I'm sure all of you know this, but Donnalynn is absolutely amazing.  Even though she's going through her own personal hell with her hubby not even 1 year after her surgery, she took time out of her day to call and reassure me (a complete stranger!) a few weeks ago and spent over an hour talking me through it and giving me tips.  Absolutely amazing.........

[EJTampa]

Hi Adrienne!
 
My tumor was only half the size of yours, but I had retrosigmoid and have none of the "big 3" issues.  I consider the big 3 to be facial weakness/palsy, eye issues, and headaches.  I suppose others may have a different big 3 list .
 
I just want to welcome you to the club, although it may be a few months before you officially become inaugurated .  I hope that time doesn't weigh on you too much.  I know you've read this before, but the waiting was the hardest part!
 
Feel free to ask questions as you think of them.  We love answering questions .
 
Ernie

[nteeman]

Adrienne,

I had a 2.5CM tumor and had retosig surgery in January '09 and no facial issues, minimal balance issues (I am as good as I was before surgery--about 95%) and the only issue is that I am SSD. The docs told me before that I would have a 50/50 chance of preserving my hearing and I already had considerable loss in that ear prior to surgery. 

I started out very anxious to have a radiation therapy but after I researched it I felt that for the size tumor I had surgery made more sense.

The brace keeps your head still during surgery. It left me with 3 little skin holes (one on my forehead, one on the side just above my good ear, and one on the back of my head) and they healed quickly. I don't think they are really of any concern.

Good luck to you and keep us posted.

[Kathy M]

Hi Adrienne!

I just typed a really great response, but it disappeared after I hit "post."  So, in an abbreviated fashion - welcome to the retro club!  You're in great comapny with lots of people who have great results.

My AN was just about your size (rather large, as one of my surgeons told me!) - and I was so comfortable with my surgeons - they just exuded confidence without "promising" me anything.  I knew their track record and they knew my concerns.  After surgery, I had no facial issues, no eye issues, no headaches long-term - I was so relieved.   Now, I'm getting myself ready to go back to work and all is good.

I hate it that you have to wait so long!  That's a shame, but thankfully, these ANs are known to be fast growing.  If I had it to do over and I had to wait several months for surgery, I would have used the time to get in the best physical shape as I could to prepare my body for surgery and healing.  I had become quite sedentary and it took me a while to get my strength back after surgery - I think that would have been a much shorter time had I been more fit.  I would also try to surround myself by positive people and good energy - and I would try my best not to research myself to a frenzy to play out all the worst possible scenarios and scare myself to death.  It is my nature but I tend to read more than I should!!  Looking back now after surgery, although I knew a LOT of information before the big day, I spent a huge amount of time dwelling in the negative which really was a waste of energy.

Anyway, welcome to the club and use this group to ask anything your heart desires.  DonnaLynn was an angel to me too, by the way...she called me after my first few posts and I clung to them while I was figuring out how I was going to proceed down this path!!!  There are lots of angels here, and they'll wrap around you like a warm blanket.

Best wishes to you, Adrienne!

Kathy

[alicia]

Adrienne - I am glad you got some questions answered.  I am still scheduled for May Retro surgery in NE, but am currently talking with House.  Of course, they are recommending Translab.  My doc here says he sees no benefit to translab.  Same 3 reasons your surgeon explained to you.  His view is just as good, no more headaches with retro as compared to translab and can completely reomve tumor.  What are we to believe?  I completely like my doctor here, but it is had to ignore the numbers that House has.

Here are my remaining questions...
1. with translab they can do immediate repair (graft) to the facial nerve if worst case senerio happens in surgery
2. less headaches w/ TL than with RS (something about bone dust) (my doctor says that's not accurate)
3. better tumor removal (view)

by the way, Brackmann told me to completely forget the 42% loss of my facial nerve.  He no longer uses that test/results.  He says that only says my nerve is not currently firing at the same rate as the other side. 

[leapyrtwins]

You're in good company; I had retrosigmoid too.

My outcome is pretty much the same as Ernie's - no facial or eye issues, no headaches.

My tumor size was very close to yours and my surgery was 7 1/2 hours.

Good luck,

Jan

[HeadCase2]

Adrienne,
  Congratulations, if that is the right term, on making "the decision" on treatment for your AN.  That's a big hurdle in the AN process.  It's good to know that you've done your research on AN and treatment options, and have found a good surgeon that you're confident in.  Now you get to do "the wait".  The time will go more guickly than you think.  And we know that it is difficult at this stage to not think about AN on a daily basis.  Know that that changes with time and a sucessful treatment.
  As I remember it, "the wait" included getting my affairs in order.  And as surgery approached, exhibiting signs of nesting-- cleaning up things around the house, etc.  It's not uncommon for your surgery date to be bumped when one of your treatment team gets pulled into a critical case.  My surgery was bumped a week.  The last week seemed to go by in a flash.
  Here's sending you good vibs for a great outcome.
Regards,
  Rob

[moe]

Hi Adrienne and Alicia too,
Due to my size and location of AN I had translab. I didn't even hear the word retrosigmoid.

My face nerve DID have to be cut (very rare-don't freak out- this AIN"T gonna happen to you!) and he was able to connect the face nerve with the translab approach.

Anyway, every doc has their own bias, and depending on what they do the most, of course they will recommend one approach over the other.

Alicia- House has a good reputation but they are not God, so I say go with your doc in NE if he as good credentials and you have done your research. But whatever FEELS right- go for it. (I like your photo BTW. Very nice mid western look- I'm a Kansan)

And yep, I used that pre op waiting period to get in shape, more exercise and such because that will help how you recover. Maybe start balancing games now!  And relax and play and just try not to worry too much.

Also donate some of your own blood, "just in case."
I know Alyssa did. She was tres organized, and came out  of surgery perfecto!

Good luck to you both, will stay posted.
Maureen
Any questions, want to vent- you can PM me- I've sort of been through many interesting scenarios and can probably relate, except I did not have retrosigmoid.

[Seal]

You're in good company; I had retrosigmoid too.

My outcome is pretty much the same as Ernie's - no facial or eye issues, no headaches.

My tumor size was very close to yours and my surgery was 7 1/2 hours.

Good luck,
Jan

I just thought I would chime in and echo Jan's results here too.    The operation is mostly retrosigmoid at MGH because that's what they do best.   I my case, the also needed the angle due to the cystic nature of the tumor and the removal of the tumor shell from the various nerves and brain stem.     And i stll claim high honors over Ernie for the earliest discharge ever after AN surgery!!!!        They checked me out at noon on Wednesday after a 8.5 hour operation on Monday!!!!  

If you go to House, you most likely will get translab; they like translab, unless hearing preservation is part of the mission.

[leapyrtwins]

If you go to House, you most likely will get translab; they like translab, unless hearing preservation is part of the mission.

Just wanted to note for anyone interested in hearing preservation, mid fossa seems to be the best approach for that.

It's not always an option though - based on AN size and location.

[Jim Scott]

Hi, Adrienne ~

Congratulations on your successful, rewarding consultation with a neurosurgeon that exuded confidence that he seems to have been able to transfer to you.  That is a critical factor in undergoing AN surgery - to have total confidence in your doctor.  I was fortunate to have a neurosurgeon recommended by another very reputable neurosurgeon (who didn't perform AN surgery) and he recommended retrosigmoid approach surgery for my large AN.  This highly experienced neurosurgeon had decades of AN removal experience and has been a member of the ANA since it's inception.  This doctor, who has a thriving practice, saw me within 24 hours of my calling for an appointment (my wife's neurosurgeon helped me get the VIP treatment) and after reviewing my case and answering my questions for close to an (uninterrupted) hour, scheduled my AN surgery for about a week later, using his influence at the hospital to secure an operating room and to put together a hand-picked team, including an out-of-town technician to monitor my facial nerves.  My retro surgery lasted just short of 9 hours - with no real complications - so your doctors estimate is quite accurate.  I recall the operating room looking pretty crowded but I wasn't conscious long enough to count heads.  The negative stuff has to be told to the patient (you) but it sure is scary. 

I hope you'll have a firm surgery date, soon...and yes, Donnalynn really is 'absolutely amazing' - and very special to all of us. 

Jim

[Keri]

Hi Adrienne,
I too am glad that you've made a decision you're comfortable with. I hope the waiting part isn't too long.
Maybe you can get another 10K or so in!
Keri

[MAlegant]

Welcome to the club? 

I had retro and still have my hearing, balance and a symmetrical smile.  I have very slight facial weakness, noticeable only to me.  I also rarely have headaches which is miraculous because I used to have them daily. 

The head brace is kind of like a halo and it's a good thing, though the little holes in my head bothered me more after surgery than my incision did!

Jan, does our club have, like, a special handshake or something?

Marci

[leapyrtwins]

Welcome to the club?   

Jan, does our club have, like, a special handshake or something?

Marci -

I don't think I said welcome to the club.  Looks like it was Kathy M.  But I'm all for a club - not a bad idea at all

And yes, we could have a special handshake or something if you'd like.

I was going to say that we all got knit hats, but Steve had radiation and I'm pretty sure some other hat wearers had translab, so there goes that idea 

Jan