Retrosig or translab?

[joanna_an]

Hi all,

I met with my surgeon yesterday.. He is very good and knows what he is talking about so I don't question his experience..
He said that my tumor is typical in shape and location and both methods can be done with same rate of success.. So I need to pick one... I don't have much hearing left in the an ear but at least it helps me to know where sounds come from although word recognition is poor... 47% at 50dB..
I wonder if it's worth doing the retrosig because I heard it can give persistent headaches... And I wonder, if they preserve my hearing would a hearing aid help a lot? I didn't think to ask this yesterday as I didn't expect that I'll need to choose What is everyone's experience?
He also said that my temporal bone favors translab but they can still do the retrosig.

Joanna.

[leapyrtwins]

My neurotologist gave me the choice of translab or retrosig and I chose retrosig.  My reasoning was that I still had hearing with decent word recognition (although it was diminished hearing) in my AN ear and I wanted to at least try to save it.  I was told the odds of that weren't good, but I couldn't see just doing translab and automatically ending up SSD.  I would have always wondered if my hearing could have been saved. 

The odds weren't with me, my AN was wrapped around my hearing nerve which had to be sacrificed in order to remove the entire tumor.  So, basically I took a gamble and I lost - but I've never regretted it.

Despite what some experience, I've never had headaches that can be attributed to my AN surgery nor did I end up with facial paralysis (had slight paralysis a day or two post op that a single dose of steroids cleared up). 

Everyone is different and docs can't guarantee you anything, so you need to pick the approach that gives you the most peace; that you won't find yourself second-guessing post op.

As for a hearing aid potentially helping you, I'm not sure if it would or not.  That would be something to ask your doc or audiologist.  I can tell you that I have a BAHA and I couldn't live without it.  And, you don't have to be entirely SSD to use a BAHA.  Candidates are evaluated on a case by case basis, so it might be possible you could have a BAHA with diminished hearing if a hearing aid was out of the question.

Best,

Jan

[arizonajack]

I wonder, if they preserve my hearing would a hearing aid help a lot?

Can't help you on the surgery choice but for the hearing aid question all I can suggest is that you go to a hearing aid place and try one. You probably don't need the free trial routine (which isn't really free), you'll know if it helps the first time you put it in.

If it does enhance your hearing that'll help you choose the surgical method best designed to preserve the hearing connection.

[joanna_an]

Thanks for your input... I will go and try a hearing aid.. The idea of cutting my hearing nerve out is not appealing either.. If it's gone, you can't get it back.. Who knows? It might regenerate too with the help of some pills during my lifetime..

[kcarloy]

My word recognition was much worse than yours, one test had showed 24%, so most of the time, the words it heard were incorrect and conflicted with my good hear being correct. 2 days after translab, it actually seemed like my hearing improved, especially in noisy places after I was discharged. No distraction of hearing words incorrectly. Your surgeon can probably tell you the % chance that your hearing will be lost, worse, or stay the same with retro. So many decisions, but sounds like he is comfortable either way, which is good.
Karen

[joanna_an]

Hi Karen,

Yes, I remember you writing that your hearing improved which got me thinking.. But I understand that retrosig is more delicate than translab and it can cause persistent headaches, which scares me.. Not having hearing in one ear is fine most of the time especially that I work in a quiet office.. I am a software engineer thus we're just typing away and hardly talk..

Joanna.

[Mark]

Always a tough decision , but the size of the AN and amount of hearing to save are the primary factors in my mind. My AN was slightly larger than yours at 1.9-2 cm and I still had very high speech recognition. Despite that Dr. Jackler gave odds of saving usable hearing at less than 20%. As others have mentioned the surgical pathway for retro makes it more prone to post surgical headaches and some surgeons feel it doesn't expose the facial nerve as well as translab. I ended up going CK anyway, but to me if usable hearing is low to begin with or AN size reduces probability of preservation success, the translab seems to have a couple of advantages

[joanna_an]

Yes, translab has a few advantages... Will go with it if I decide on surgery. I have one more radiation oncologist to see.. The surgeon said I would have the same rate of success with either radiation, translab or retrosig.. It's really up to me what to choose..

[leapyrtwins]

But I understand that retrosig is more delicate than translab and it can cause persistent headaches, which scares me..

Some get headaches w/retrosig, others don't.  Depends on the person.

Some will also tell you that retrosig will give you a greater chance of facial paralysis, but once again it depends on the person.  Some get facial paralysis, others don't.

My only "disability" post op is SSD (single sided deafness) which has been helped immensely with a BAHA implant.

Lots of gambles in AN surgery (as in life).  You just have to do what you - and your docs - think will be best for you.

Unfortunately no one can tell you 100% what you'll "get" - you just have to wait and see.

Jan

[Sandrawoody]

I had retrosigmoid, no post op complication, no facial nerve damage,still have almost normal hearing in the an side, despite a tumour of 2.5cm in size. And l have not had any significant headaches over the last 4 years.
What l am beginning to realise, we are all hoping for what might be our best option, but the outcomes are so very personal to our particular tumour, how it is growing, and perhaps not what surgical option we choose.
Sandra , Melbourne. Australia

[DeeDeeR]

Hi Joanna,  I choose the translab approach.  I am very happy with my results.  Although I have lost my hearing in the AN side, I have very little facial damage. (my mouth is just a little uneven on the AN side when I smile)  My scar is totally hidden with my hair.   I have the normal AN problems, balance issues, metal taste in mouth and dry eye.   Nine weeks post-op and I feel very blessed... the first 2-3 weeks were the worst, but I see progress every day. Saying that, I do have good days and bad days... I am in vestibular physical therapy right now and it is helping tremendously with the dizziness and balance.   I know this isn't a easy journey, but it is best to just get it over with and be confident in the decisions you make.  Good luck and God Bless. 

[kcarloy]

I am very happy with translab. I stopped in to work today to send a few emails 3wks after surgery, and the staff were surprised, that I look and acted "normal". I have had a very positive recovery! With the SSD, my hearing continues to seem better, because the hearing on the AN side used to hear words wrong.