Looking for Success stories from folks with large AN's and Translab approach

[Kaybo]

From someone who has been this way for quite a while, I would take most of the other stuff over the headaches that people describe here ANY day of the week.  I had HORRIBLE headaches before my surgery and thought that surgery relieved everyone of their head pain.  It wasn't until I got on here that I found out that some people get debilitating headaches AFTER surgery - my heart goes out to them.  HANDS DOWN, I would take SSD over headaches anyday and really, my face may look a little funny, but I can still function, do my day to day stuff and be a mother to my girlies!!

K   

[TR4guy]

Here's what I've been told.  Hopefully it is correct.

Usually....the facial nerve is on the front. Side of the tumor.  (Usually).   Approaching the tumor from the rear means the facial nerve and its involvement with or attacment to the tumor is more difficult to ascertain.....since the tumor is between the surgeon and the facial nerve.

Going translab means that the approach is along the hearing and facial nerves which run parallel to each other.  So in this approch, the facial nerve vs the tumor can be viewed immediatly, regardless of their relative positions.

Scott

[lori67]

I think I'm coming late to the party, here (as usual...), but my AN was 3cm and I had Translab.

I had no hearing loss at all prior to surgery, but decided I'd be willing to sacrifice that hearing in an attempt to spare the facial nerve.  Turns out, the facial nerve was pretty well tangled up in there too, so it didn't quite work out as planned.  However, I don't have headaches, tinnitus or any of the other things that I understand can be quite debilitating.  I am SSD with a BAHA and I have facial paralysis, which I've since had a nerve graft for and am still working on a few more things.  I still consider myself a success story.  The issues I have do not keep my from doing anything I want to do.  (alright, maybe I would like to blink all the way... ).

I was also under the impression that translab was the way to go with the larger AN's

Lori

[lamplight]

One reason I heard that retrosigmoid is  sometimes preferred for larger tumours is that access to the tumour may be better. With translab, the access/vizualisation may not be as good, thus meaning surgery to remove large tumours may take longer which increases risks on the table (associated with being under anaesthetic for so long, clots, stroke, nerve damage from being prone etc).

I had done some research before seeing my surgeon and wanted the translab as had heard that was best for facial nerve preservation and didn't want the risk of headaches from retrosigmoid. So as you can imagine, was a bit upset when he said the best approach for me would be retrosigmoid. This was because it offered best access due to the location and shape of the tumour.  Wasn't because of personal preference of surgeon (does both types). I was lucky in that had good surgeons and despite 4cm size of tumour, that it was a regular shape and easy to separate from squashed facial nerve (2 months on, my face is back to normal and no headaches - and they removed the whole tumour).

If not happy with current surgeon's judgement, can you get a consult with any others and see what they say?

[TR4guy]

Hi Lamplight,

What you wrote is right on target for me.  I have the same reasoning for not wanting to go retrosig.

And I actually have gotten some other consults lately.

Both of them disagreed with the idea that my tumor was more accessible from the rear or that it was "too big" to go translab.
One of them actually laughed and said "no, that's not correct.  we can remove any size AN using the translab approach.  we did a 5cm one earlier this year."

So, now I've got conflicting opinions from different experts.

Scott

[leapyrtwins]

Biggest AN I know of belonged to Jon (user name satman).

I don't know which surgical approach he had and his profile doesn't say.

Perhaps you should send him a personal message, Scott, and ask him.

Another suggestion.  HEI (House Ear Institute) in Los Angeles has a huge reputation for doing AN surgeries - the docs there are the pioneers of AN surgery - and they will give you a free consult if you send your MRI to them.

Maybe you should get their opinion.  Afterall, it's free and you are not obligated to go there for your surgery.  You might get the answer you are seeking about the best surgical approach and then you could have your surgery locally.

Just a thought,

Jan

[Kaybo]

I was wondering what House would say also...

K   

[TR4guy]

Actually....house was one of the contradicting viewpoints.
I'm not sure if it is socially acceptable to name doctors by name...

But the surgeon I saw at hopkins said retrosig....cause mine was too big for translab.

The doctors I talked to at both House and Georgetown both disagreed.  Not only about it being too big...but also that translab is the approch they reccomend.

Scott.

[moe]

I'm not sure if it is socially acceptable to name doctors by name...

But the surgeon I saw at hopkins said retrosig....cause mine was too big for translab.

Scott,
It's okay to name drop, we do it all the time! Important to know who recommends what if other people are following (or lurking as we call it) any posts for info.

Wonder why the docs at Hopkins recommend retrosig. Big hospital, I would assume they do both approaches there. 

Translab for the most part has little side effect of long term headache, as had been mentioned before, and facial nerve preservation is good.

(Although my case was different- the facial nerve and all it's branches were totally smashed and the nerve had to be cut to get the tumor. The AN was vascular i.e. bloody.They connected it back during surgery, just didn't take.)

So I would say my case was a success in the fact that I had no headaches, no stroke,or  cognitive issues (except for the normal middle age woman thing!) The tinnitus you can't control, and my face is coming along too. (That's another thread- pre/post gracilis  flap- need to update!)

So the journey continues. This is the hardest part, figuring out how to proceed. Hang in there
Maureen

[TR4guy]

Well.... Okay.  Naming Names is okay (Seinfeld reference anyone?)
It wouldn't be to hard to figure out anyway if you just dig through my old posts.

Hopkins works this way - you send in your MRI, the associated report and other relevant info.  Then the department head (I believe it is Dr. Brem) then reviews your case and assigns it to one of the surgeons there.  They contact you and setup two appointments on the same day.  One for the neurosurgeon, and one for the ENT.
It was all very efficient and well prepared.  I give them credit for that.  Hopkins certainly does a good job with organization and preparing a patient for the appointments.


In my case - I was assigned to Tamargo for neurosurgery and Carey for ENT.

Carey is a really nice guy.  I can't say enough good things about him. (plus one of his students was ridiculously attractive . . . a nice distraction)
Back to the point.  Despite Carey's bedside manner and willingness to explain things to me and answer my questions (even via e-mail.  Impressive)
He was still in agreement that the retrosig approach that Tamargo told me he was going to do was the best one.

I actually saw Tamargo first.  Now, don't get me wrong, Tamargo doesn't have a bad bedside manner, but he's certainly not as personable as Carey. 
He's all facts and action.
"This is what we are going to do and how it is going to work"  and so on.   
Which is fine.  I can work that way. 

As I've mentioned, I questioned him about Translab and he said emphatically "No.  Your's is too big for translab."  He might also have said something about the location and needing better access than can be had via translab.  I don't remember that specifically.

I trusted him because he has a TON of experience with these things.  He's been doing them for something like 15 or 18 years and has done well over 400 AN surgeries personally. (or so he told me)  He works at Hopkins.  He's supremely confident and probably with good reason. 

No reason not to trust him right?

The first warning flag I got is when I talked to Dr. Carey and was talking about the possibility of leaving some tumor behind to preserve the facial nerve.
Dr. Carey said something like "If I know Dr. Tamargo, he will try very hard to get all of the tumor out if it is at all possible."
Hmmmm.... what if Dr. Tamargo and I don't agree on how aggressive to be in attempts to remove all the tumor?

More warning flags came along as I went.   I will spare you the details about them as I know this post is already too long. (and I'm not close to done)

Why did they recommend retrosig?  All I know is what he told me:  "its too big." 
If there were other reasons, he should have elaborated more.  (wish I had a audio recording of the visit to refer back to)   "it's too big" seems to be a minority opinion from all the other research and consults I've had.
I think he also mentioned something about it extending into the IAC . . . which meant that the ENT was going to have to go in there and drill out some bone to get to all the tumor.  (go ahead - google intradural drilling and retrosigmoid approach . . . . more flags)

From what I can tell . . . . I think Tamargo only does retrosig.  (one of my other consulting doctors said that's what he thought too)
Now . . . does that mean that the department head looked at my case and deemed a retrosig to be the right choice and so he gave it to the best man for the job?
Possibly.  I don't know. 

Whatever the case . . . for me personally, I don't want retrosig.  I want translab.  And at this point I don't want Tamargo doing the translab on me.
Georgetown recommends translab.  Maybe I'll go there.
House recommends translab.  Maybe I'll go there.  (insurance is a concern since they are so far away from me)
Who knows . . . maybe someone else at Hopkins will do the translab..  They seem to be so stocked with superstar doctors, that I have a feeling they get pigeon holed into being one trick ponies.  Maybe there's a superstar one trick surgeon there that does translab too.

Oh ... one other thing Tamargo said "we don't do Middle Fossa anymore for anyone.  That approach is no good."   
Hmmm.... House and other premier places still do Middle Fossa.... 

I doubt anyone is reading all this . . I know I type WAYY too much.
But if you are . . . please don't view my rejection of retrosig as a judgement on you if you did have or do want to have retrosig.
As everyone says . . . each case is different, and we all have to be comfortable with whatever we decide.
I've decided that for me, I don't want retrosig.

Sorry for the length folks.
Hope it doesn't drive you away.

Scott
 

[jerseygirl]

Hi, Scott,

The majority of AN neurosurgeons were trained in retrosigmoid approach. Just a handful (HEI is one of them) do translab on any tumors, especially the tumors of your size. If the tumor was small and you wanted translab, maybe a neurosurgeon would attempt it. However, large tumor would make untrained attempt difficult and risky. So, they are just being responsible.

Another thing (and that  was my problem) is location of the tumor. Most ANs grow downwards when they enlarge and involve lower cranial nerves. Loss of lower cranial nerves produce greater morbidity that even a loss of the facial nerve (fortunately, nowadays this is rare), so the retrosigmoid approach allows better access and view of the lower cranial nerves which improves the outcome. One of the neurosurgeons simply showed me on MRI film where the translab incision is and where is retrosigmoid. I could see for myself that with translab the neurosurgeon would have to work downwards to peel the tumor from the majority of the cranial nerves involved and his visibility would be obscured by the combination of the tumor plus scar tissue from the first surgery. Translab would have been inefficient at best and chances are great that the lower most end of the tumor could not be removed because it was unreachable. 

By the way, most, if not all neurosurgeons have what is called "surgical personality", that is they are not very personable. This is no indication of their skill. To make it through training, they either have to be born with it or develop it along the way.

If you really want translab, you would be wise to go to somebody  who can do it with a tumor your size SUCCESSFULLY . At this point, I know of only one place: HEI. That does not mean that nobody else can do it, just that I am aware of only them They developed translab as a method and have many success stories with a tumor your size.

 Good luck in your quest!

                          Eve

PS Retrosigmoid can indeed produce horrible chronic headaches. I was "lucky" to have them for 10 years after my first surgery. I think you are wise to avoid them in the first place, especially since your hearing cannot be saved.

[TR4guy]

Hi Eve,

Thanks for the reply.
You write very well (I wish I could write as well as you do.)
You also seem pretty knowledgeable about this stuff.

My consultation with a surgeon at House backs up some of what you have said.

He said they recommend translab for me.
He also said that when done correctly, translab will give plenty of access to even very large ANs.
Lastly -  He also said that there are doctors, including the ones he initially trained under, who did not do the translab in the proper fashion to allow access to large tumors.  (and threw in the semi-marketing addition that "everyone here at House is trained to do them correctly.")


The Hopkins doc I saw has been doing AN surgeries frequently for the better part of two decades.
Maybe this "improved" or "correct" translab technique was developed after he was already removing bunches of AN's via retrosig.
As far as he is concerned, "why fix what isn't broken?  I'm great.  What I do works. why should I change?"
I don't know....that's just me projecting on him and may be inaccurate.

The Georgetown doc obviously has done them successfully. 
He mentioned a 5cm AN they removed there at Georgetown earlier this year via a translab approach.

Your own personal story of the explanation as to why you went retrosig as opposed to translab is interesting.
What would you have done if a second expert, with just as much experience and training as the first one, had a different opinion?

As I said in one of my posts . . . I'd like to get them in a room and watch the debate.



Lastly  . . .I'm fine with "surgical personality"
What I'm not fine with is suboptimization. 
When one sub-group on a project does what is best to optimize their part of the project, without regard for the outcome of the project as a whole.

This could be shown by a neurosurgeon who has fabulously good statistical success for his surgeries . . . when measured in neurosurgery metrics.
Was all the tumor removed?
Were the other nerves preserved?
Were there any other complications during surgery?
And possibly - was there any reoccurrance or regrowth of the tumor?

Notice that only the last one has anything to do with the patient after the surgery is done.

If a neurosurgeon has a reputation for being "done" with his patients after surgery.... and any subsequent issues they have are not his problem and to be dealt with by other specialists .. . .  .that's a bad thing in my book.

It only reinforces that type of suboptimization.

I mean, if he's ignorant of the post operative condition of his patients,  how is he ever going to draw a correlation to the consequences of the surgeries he does?

And furthermore,  how is he really going to be effective at judging what is best for the patient, vs. what is what is best for neurosurgery?

Sorry . . .. started to rant or preach there....

Scott

[moe]

How frustrating what you are going through Scott!
My AN was considered med-large. They got the whole thing. My doc at Madigan Army trained at HEI and does the retro and translab approach (he doesn't use the mid-fossa).

Can you ask for a second opinion at Hopkins, will they do that? Or all they all trained to think like the doc who recommended retro?

Feel for you.....
Maureen

[TR4guy]

Can you ask for a second opinion at Hopkins, will they do that? Or all they all trained to think like the doc who recommended retro?

Feel for you.....
Maureen

I doubt they are all trained to think like the doc I saw.
However politics could possibly play a role here.   
I'd tend to think Hopkins Neurosurgeons are achievers .. . . successful achievers with ambition.
Might not be a good idea to contradict the department head or one of the most experienced surgeons there.


I guess we will find out what they say sometime here in this upcoming week.
I'm going to have to tell them that I plan to go somewhere else because I don't want the retrosig approach. 
Can't very well wait until the day before surgery to tell them.

If they counter with an offer to do the translab . . .  we will have to have a very serious meeting that could get dicey.

It sorta leads them down a path that could be sticky for those currently involved.
I suppose there is some way for them to come out of it by saying that they still recommend retrosig as the best way, but that their translab specialist is top notch and can do the job as well as anyone in the world. 

(once again . .I'm projecting possible future conversations here.... this is all imagination at this point)

Then their translab specialist . . . I'm sure he's going to have a tough time NOT contradicting the department head and the first neurosurgeon. 
For him to agree with them and take "the company line," he'd have to say that the translab surgery he is about to do is not what they believe is best for me, and that it isn't as likely to work as well as what they first prescribed.   I imagine that's a pretty tough thing for an accomplished neurosurgeon to say.


Whatever . . . .  I'm sick of going over possible scenarios.


hopefully early next week I'll get some answers from Georgetown, House, and my insurance company and will take it from there.

Since I'm spilling my guts here on this forum . . . you will of course know the outcome  soon afterwards.

I must say . . . it is very nice to have some knowledgeable people listen to what I've got to say.
My personal research into this stuff has gone 1000x farther than anyone who is close to me and there to support me.
I find myself educating them most of the time.  (which is totally understandable.  that was not a complaint.  Just a fact.)

With you folks . . . we are on equal ground.  I can talk about the details and it doesn't throw any of you for a loop.
That's very helpful . . . that you really do understand the situation and how it might affect me.

Thank you all,

Scott

[jerseygirl]

Scott,

I am afraid I will start here a mutual admiration committee!   You are so incredibly perceptive on so many issues that I cannot even believe you are a newbie!

Good follow-up care is frequently a subject here. It seems to be dying in the days of declining insurance reimbursements and decreasing hospital stays. The surgeon is paid for the surgery and 3-months follow-up care. There is a direct incentive to spend less time with the patient after surgery. Unfortunately, follow-up care is no indication of the surgical skill either, just like the surgeon's interpersonal skills. The were many cases here of people who had wonderful outcomes but shabby follow-up care and people who had shabby outcomes but wonderful follow-up care. You just never know. There is only one place - HEI- where former patients had consistently excellent follow-up care without an exception but so many more got miraculous outcomes elsewhere and so-so follow-ups.

Some people complain that anything that is not going to kill you is conveniently ignored by the surgeons. They pay attention and jump to action only if the scar fails to heal, there is a fever (meningitis?) or CSF leak. Disability seems to the worst: the surgeons say the patient is ready for work in a few weeks when that is obviously not the case. On the other hand, they love to talk to the patients who they deemed to be "successes".

In my case, the first time I did not have a choice of the surgeons. I was referred and did not investigate any further simply because there were no other options and the tumor was huge. Only miracle could save me and it happened. Second time I was in W&W for 9 years and saw things change tremendously in the treatment of ANs. Now there were options (different types of surgery, different types of radiation and a hybrid approach - surgery followed by radiation). I investigated and interviewed many specialists which all disagreed by the way! One even refused to see me! I told myself that in order to be successful in my search, I would avoid being judgmental, hear and understand each person's point of view and ask why he is recommending this particular course of action. I tried to understand rationale behind the approach as well as its pros and cons. Each doctor who saw me contributed to my understanding o and that eventually lead to the neurosurgeon who could handle my "challenging situation". I am really grateful to all of them. I also participated in this forum and that was a lifesaver!

Good luck in your search.

                Eve