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

[TR4guy]

So . . . .

I had a neurosurgeon . . . a fairly experienced one . . . tell me "No.  We can't do the translab approach because your tumor is too large."

That doesn't jive too well with what I've read here.

Anyone care to comment on such a claim, or share your success story?

Thanks in Advance,

Scott

[KarenE]

Hi Scott!
Wow, you do have a big one.  I had a big one too and they told me the same thing, that a translab wasn't possible since mine was 3.1cm.....although I'm sure people have had it done.
Good Luck
Karen

[TR4guy]

Hi Scott!
Wow, you do have a big one.  I had a big one too and they told me the same thing, that a translab wasn't possible since mine was 3.1cm.....although I'm sure people have had it done.
Good Luck
Karen

Thanks for the response Karen,

So, did you do the retrosig approach, or, seeing as how you went to Skull Base Institue, did you go with laproscopic surgery?

[kiwi]

Hi Scott

I had translab for a large tumour. Size was the reason I had no other option and the fact I had lost most of my hearing anyway.  I have mild Facial weakness - currently 3/6 on the HB scale and showing signs of improvement, but I would consider my surgery a success even though I had a CSF leak as well.  They say translab is a better approach to preserve your facial nerve but I have to say that I think it depends on your tumour and where it is situated in your head.  I still have a sliver of tumour left on my facial nerve and my surgeon has made sure this won't grow again by cutting off its blood supply.  I'm happy with my recovery and found it relatively easy after the first couple of weeks....but everyone on here is different.

Good Luck

jacqui

[TR4guy]

I've got my ANA infomation packet here in the mail today.

I'm going to quote something from one of the booklets:

"Translabyrinthine Approach:  may be preferred by the surgical team when the patient has no useful hearing, or when an attempt to preserve hearing would be impractical."

[later, in the same paragraph, it says]

"Any size tumor can be removed with this approach"

[moe]

Then there's your answer!
I always thought the bigger ones WERE done with the Trans Lab approach.
Good thing you sent for the info,
Welcome,
Maureen

[TR4guy]

So does it seem like a fair conclusion that the aforementioned surgeon was incorrect with his statement that mine is "too large?"

I suppose he could have been oversimplifying things for me . . . and the details about its location or something else were the reason he didn't want to do translab.

Even if that were the case though . . . I'm not really thrilled with the idea of a doctor who wants to over simplify things for me.


Kind of frustrating ...

Scott

[Kaybo]

My first thought was with Moe - I thought that the bigger ones were always done Translab.  I had a very large tumor & had the translab - of course, that was almost 15 years ago so things might have changed...


K   

[Funnydream]

TR4guy,

Why would you want Translab to begin with? Worried about facial nerve?

Retrosigmoid is for larger tumors is what I read on the web. I thought the only real draw back to Retrosigmoid is the head nerves and musles that have to be cut accross that add a 10% chance for cronic headaches.

I don't like the Translab cuz its a total wipe out to your hearing bones. And 20-30 years could see gene or nerve reconstuction. May get my hearing back when I'm 60-70.

Can always hope. lol

[TR4guy]

TR4guy,

Why would you want Translab to begin with? Worried about facial nerve?

Retrosigmoid is for larger tumors is what I read on the web. I thought the only real draw back to Retrosigmoid is the head nerves and musles that have to be cut accross that add a 10% chance for cronic headaches.

I don't like the Translab cuz its a total wipe out to your hearing bones. And 20-30 years could see gene or nerve reconstuction. May get my hearing back when I'm 60-70.

Can always hope. lol

Interesting view point you have there.
Maybe some other folks will answer your questions.

I can't not answer some of your questions though:

Worried about facial nerve?   Heck yeah.  Are you not worried about it?
Judging by your signature . . .2.8cm isn'' exactly little, and you've already got some facial numbness going on.

I don't know . . . but one of us is obviously in the minority here.
SSD vs facial paralysis and headaches.

I know the chances aren't high for facial paralysis and headaches. . . but the consequences are very high.
Man . . I feel so bad for all those folks who have the chronic dibilitating headaches.
That just sounds terrible.

Me . . . heck . . I'm already a good way toward SSD.  going all the way there would suck, but I think I can deal with it a whole lot better than I can those headaches.

Scott

[leapyrtwins]

Scott -

honestly I don't know the answer to your question, although I should.

My AN was approximately 3 cms at the time of my surgery and I had the retrosigmoid approach.  No headaches for me; slight facial nerve paralysis for 1-2 days post op; ended up SSD, now sport a BAHA on my head.

Your doc may be oversimplifying things for you like you suspect, but I'm not sure.  IMO, you should push him for a more definitive answer.  You need to have complete faith and trust in someone who will be operating on your brain, and if you aren't comfortable with asking him to clarify his position, do you really want him inside your head?

My neurotologist was utterly upfront and completely honest with me - and answered every question I had (in hindsight, even the "dumb" ones) with patience and in terms that I could understand.  I made sure I grasped everything he told me and that I was comfortable with his explanation of everything.  He was accessible by phone, as well as in person, and believe me I took advantage of that.  You don't want to go into something like this without having satisfactory answers to your questions.

Just my thoughts,

Jan

[kiwi]

Scott

I panicked about facial paralysis went I had surgery, Im only 38 and was just in a new relationship when I was diagnosed.   After the initial reaction people just get use to it and so do you.  I would love my face back but if I don't get it back I won't be upset.  Being SSD isn't the end of the world either...you get use to it and in the USA you are lucky to get Baha's and things...I have been told I can't have anything like that.

I don't think is any point in worrying about what you don't want to go wrong because you really get no choice with surgery. The surgeons do their best, hence the reason people on here always say do your research and go with whats best for you.

Jacqui

[KarenE]

Since I'm new here, what is a BAHA?

[leapyrtwins]

A BAHA is a bone-anchored hearing aid.

Check this out http://www.umm.edu/otolaryngology/baha.htm

You'll find more info @ www.cochlearamericas.com - and here on the Forum.  Just search BAHA.

Jan

[Tod]

Scott,

My team was actually planning to do different routes on on me, translab and retro sigmoid. The neurosurgeon felt that in my case, based on the tumor position, that this would give him more room to work. I would try following up with him for clarification via email. I engaged my docs in semi-regular email pre- and post-surgery in order to establish a stronger relationship and to address questions. Now six months post I provide them significant updates between appointments if it seems warranted. I think this helps them establish a more robust case history.

You do want to be confident in your surgeons. Don't be hesitant to push for meaningful explanations.

-Tod