Translab vs. Retrosig...House.

[mellowrama]

Hi everyone,

It looks like I'll be having surgery within the next few months after CK failed and the ugly thang is growing 

So, I assumed I'd be having retrosigmoid, debulk & radiate as advised in the past by Dr. Spetzler at Barrow.  I don't plan on going back to Barrow, as I'm very interested in going to House. 

My tentative decision is to go with Dr. Friedman at House  He claimed that although my hearing is perfect, it will go away and that I should have Translab (sacrifice the hearing) to avoid headaches and ensure total tumor removal and not have more radiation.   Main emphasis of the surgery now being on avoiding facial paralysis....he also considered the radiation that I already had a factor for Translab approach.  Tumor now 2.5cm and to big for middle fossa.  He did say that they would do the Retrosigmoid surgery if I wanted it....

Of course, I'd like to preserve my hearing, and I'm wondering if anyone else can chime if they've had similar considerations.
Thanks for your feedback.
Melinda

[cecile k]

Hi Melinda:

My situation was a bit different in that I did not have radiation. Prior to retrosigmoid surgery, I had 60% hearing left - they took the retro approach to try save the hearing but I lost it all on that one side and was left with whopping headaches like no tomorrow for a long time, as well as hissing (tinnitus).  It's been over seven years now and I still have headache issues, although not nearly as extreme. Tinnitus remains the same and constant.  I did read after my surgery that there is more of a chance of headaches with the retrosigmoid than the translab approach.  Everyone's situation is different - if I had to do this all over again, knowing what I know now :-), I would take the translab knowing that the BAHA is available for SSD. 

I should add that in no way do I criticize my surgeon - I was blessed to have one of the best. He was able to save my from facial paralysis even though the tumor was very much entwine around my facial nerve as well. All the best!

Cecile

[mellowrama]

Hi Cecile,
Thanks for sharing.  I'm so sorry that you had the headaches, and glad to hear the facial nerve was spared!
I've been researching the BAHA thing a bit now too....I didn't know if it really helped or not, I guess depending on each persons situation e.g. if they have tinnitus?  Or does the tinnitus go away if SSD?  The more I learn the more I don't know 

[Lilan]

I don't envy you having to perhaps choose to sacrifice perfect hearing.

But my opinion is that you should be very skeptical until you feel sure you have a solid diagnosis and an excellent surgeon -- but then at some point you have to sort of "shift" mentally and start trusting the expertise of whomever you've chosen.

In other words, I am saying I would take what Dr. Friedman advises very seriously. I can think of no "self-serving" reason he'd have to push one approach over another -- he does retro as well. You have special circumstances in that you are post-radiation and have a pretty good-sized tumor, so it makes sense that he might suggest a conservative approach, especially when considering that retro has fairly low success with saving hearing anyway -- isn't it just about 30%?

I am guessing that most patients would say that saving your facial nerve, avoiding headaches and limiting further radiation to your brain are more important than being SSD, which is a pretty likely outcome of an AN sooner or later anyway. A choice I wish none of us ever had to make, but here we are.

(So far, personally, I'm not finding SSD so bad. My tinnitus is minimal, but it does not go away just because you lose your hearing.)

HTH

[HeadCase2]

  Or does the tinnitus go away if SSD?

Hi mellowrama,
  Unfortunately, tinitus is all to common for AN patients.  And AN patients who have SSD are just as likely to have tinitus, if not more likely.
  Best of luck with the treatment you choose.
Regards,
  Rob

[wcrimi]

"especially when considering that retro has fairly low success with saving hearing anyway -- isn't it just about 30%?"

I think it really depends on size of tumor, location, and other issues.

When I went for my initial consultations all three surgeons gave me 50%. Then after a test that showed my hearing nerve in very good shape, Dr. Post gave me a 70%-80% chance. He did retain my hearing. I think I tested at 92% hearing discrimination in March. The volume level is probably around 85%. I have no trouble using a phone on the bad side, but it's not as good. I really don't notice much difference at all except when I try to use earphones. One side is clearly superior.

I think you sort of have to ask for the probabilities in your specific case.

I think (empasize "think") that if you have a very good chance of hearing retention surgeons are more likely to want to do retro, but if the probabilities are not so high or there are other higher than average risks, then they will go translab.

I haven't had much of a problem with headaches. I clearly get more now that I used to, but so far they tend to be mild and usually only occur when I am really tired from a hard days work or didn't get much sleep.

[Lilan]

I think you sort of have to ask for the probabilities in your specific case.

I totally agree -- she did that, and Dr. Friedman answered her. He did not think her hearing could be saved.

(OP: He had seen your films, right? Or was this a preliminary conversation prior to that? I do agree you need to hear what they say after size and location are taken into account.)

[mellowrama]

Thanks for the detailed information Lilan and others.  Its good to knowo that SSD is not so bad for you Lilan...I've never really had tinnitus so I didn't know if this is something that would come with SSD.

Yes, I'm taking Freidman seriously, as I've always felt grateful that I still have the hearing and expected to lose it...
He mentioned I might have 10% chance saving it with translab, maybe I heard him wrong , but I thought you automatically lose hearing with translab.

Which surgery did you have wcrimi? 

[wcrimi]

Melinda,

I had retrosig.

It was the only option that Dr Post suggested. I believe his specialty is hearing preservation using retosig. When I saw Dr Galfinos, he also suggested retrosig for me but did offer mid fossa with it's pluses and minuses as an alternative. I believe he said that Mid Fossa would increase the probability of hearing retention but also increase the probability of facial issues. I decided on retrosig and went to Post because he seemed to be a lot more confident he could save at least useful hearing. He exceeded my expectations. 

All that said, I was fully prepared for SSD.   I can also offer this.  When I first came out of surgery, I had hearing but it was quite distorted and much worse than it eventually became a few months later as I healed. I could not really use a phone on the bad side and when I walked with someone, I always kept them on my good side. So even though I was never SDD, I think I got a glimpse of what it might be like.  It was not as bad as my "fears".




 


 

[Jim Scott]

Melinda ~

Hearing retention is always a major concern when considering AN removal surgery so your focus on it is quite understandable.  However, I have to offer the caveat that even with Middle Fossa or Retrosigmoid approach surgery, hearing retention cannot be guaranteed. We have some members (Jan comes to mind) who underwent retro surgery in hopes of retaining hearing in the affected ear but woke up from the surgery to find their hearing in that ear gone   Still, it's certainly worth giving yourself the best odds for retaining hearing when choosing a doctor and surgical approach.  To the best of my knowledge, the translabyrinthine surgical approach does sacrifice hearing.  Retrosigmoid and Middle Fossa approaches can 'save' some hearing but the odds are not great.  In my case, my hearing in the affected ear was long gone, I had adjusted to it and so, although my neurosurgeon employed the retrosigmoid approach to (partially) remove my tumor, I never regained hearing in that ear.  I've pretty well adjusted to being SSD, although it certainly can be an impediment at times.  Fortunately, BAHA (Bone Anchored Hearing Aids) are available and do help - as many of our members will attest.  I haven't felt the need for one but that could change at some point in the future.  They are pricey (thousands, plus doctor fees) but medical insurance usually will cover them, as they are not really a hearing aid in the conventional sense.  That's a separate issue.  As Rob mentioned, tinnitus is very common to AN patients.  I have it but find it tolerable (I ignore it most of the time).  While unwelcome, it is not life-altering, just annoying - maddening, if you allow it to be.

I always advise folks deciding on a procedure/doctor/facility that when considering a surgeon, look at his (or her) personal statistics for good surgical outcomes, not simply what the national average may be.  You want a surgeon with years of experience in AN removals.  While choosing the procedure is important, I submit that the skill of the surgeon is of the essence.   I firmly believe my good surgical outcome (followed by successful radiation treatment - FSR) was due in large part to the experience and skill of my neurosurgeon (a longstanding member of the ANA).

I wish you much success in your research and your surgery.     

Jim

[Adrienne]

Melinda,

My opinion is that once you've decided on the surgeon (which is sounds like you have), you should go with what his recommendation is for your particular scenario.  Without knowing much about the 'type' of surgery my surgeon was experienced in, I went into our first meeting with a request for Translab.  My fears were that if I was going to lose my hearing anyway (which everywhere I had read it seemed like the probabilities were extremely high), I wanted to avoid headaches at any cost.

I was floored when my surgeon said he didn't want to do Translab and wanted to do Retrosigmoid.  He outright said that his patients do not get headaches long term (I was skeptical, but he was so confident and bold with this statement, even when pressed) and that since I had such good hearing, he may as well *try* to preserve it (he was quick to add that I should pretty much kiss it goodbye b/c the likelihood was slim).  He also had a few more reasons for preferring Retrosigmoid, including the visibility he would get, and his experience and success doing that kind.

In the end, even though it wasn't what I *thought* I wanted, I just trusted that this person was doing what was in my best interest.  Like someone else said above, he does both-so he has nothing to gain by doing one over the other.

Good luck!

Adrienne

[mimoore]

My hearing was perfect (just a full feeling) and my nostril was numb and it was hard to detect I thought I could not breath through it so articulating myself clearly was a problem but looking back it is crystal clear. Then about 60% of my face went numb and it was clearer to diagnose.
Anyway I had Retrosigmond to try and save the hearing and after surgery I was completely deaf and suffered facial paralysis. Hard to predict what may happen. I am sure you will be fine whatever you choose- remember knowledge is power.
Michelle 

[Sonja]

Melinda:

Not certain if you have had your surgery or made your decision yet. Just wanted to let you know I had translab at House in February 2009. I had no servicable hearing in my right ear and was very concerned with facial issues. It turned out very good. I have no facial issues or other for that matter.
Of course I am now SSD. However, I believe my left ear hearing has compensated. My husband says I hear better now.

I did get the BAHA operation at the same time. However, I just started wearing the BAHA this week. I find it will more than likely only be needed in meetings (for the person on my right) and in settings where there is alot of background noise. Other then that I have been doing very well as SSD and without the BAHA.

Go with your gut and I wish you the best. If you have any specific questions please feel free to ask.

[leapyrtwins]

I did get the BAHA operation at the same time. However, I just started wearing the BAHA this week. I find it will more than likely only be needed in meetings (for the person on my right) and in settings where there is alot of background noise. Other then that I have been doing very well as SSD and without the BAHA.

Sonja -

which BAHA processor do you have?  If it's a Divino or an Intenso, it won't help you at all in settings where there is a lot of background noise.  The new BP100 (and the Ponto by Ociton that will be released in October) will eliminate this problem. 

As far as only wearing your BAHA on occasion, IMO you'll get to the point where you'll want to wear it all the time once you realize what you're missing when you don't wear it.

I found that although I didn't wear my BAHA a lot when I first got it, now I wear it all the time except when I sleep, shower, and mow the lawn.

You'll also find as time goes on that it becomes a part of your life - you won't even be conscious that you are wearing it.

Jan

[JerseyGirl2]

Sonja,

I agree with Jan --  you really should consider wearing your BAHA all the time ... not just for "special occasions." Your brain needs to adapt to this new method of processing sounds, so give it as much opportunity as possible!

As Jan says, background noise won't be eliminated with the current BAHAs -- hopefully the newer versions will improve on this problem.

Putting it on and taking it off has become totally second nature -- I think of it as my "third contact lens."

Catherine (JerseyGirl 2)