Debating on translab or retrosigmoid.....any thoughts?

[spgreenfield]

Since translab basically trashes hearing in THAT ear, and retrosigmoid is more invasive than translab - I feel like I'm giving up on hearing by choosing translab..... heard from HEI and spoke to both surgeon and neurotologist who oddly recommended the translab contrary to the other 2 opinions.....what they said made sense!  I've seen too many posts that had unsuccessful preservation of hearing.  Curious to see if anyone out there has an opinion....

Pam

[LisaM]

Hi Pam, I responding here as I am very interested in what feedback you get.  It is a real dilemma to choose surgery that you know will take your hearing when you have good hearing in the AN ear.  In my case, even with retrosigmoid HEI only give me a 50/50 chance of saving the hearing.  For this reason I am waiting and watching for the moment.  Next MRI is in January.  Fingers crossed for no growth!

What size is the AN in your head?

[CHD63]

Hi Pam .....

As a musician, initially (pre my 2008 surgery) I had the same concerns you have ..... I wanted to save my hearing, if at all possible.  Before that surgery I still had 80% of my hearing with 100% speech discrimination.  The first surgeon I had (in Feb. 2008) recommended retrosigmoid to attempt hearing preservation, which I had.  After that surgery, I retained just 20%, but still with 100% speech discrimination so a hearing aid was very helpful.

However, in a tiny percentage of cases, tumors can regrow if even one bad cell is left behind.  Unfortunately that turned out to be my case.  When the 3-year MRI revealed significant regrowth, all of the doctors I contacted said that no matter what I did ..... wait and watch, radiation, or surgery by any approach ..... I would lose my hearing.  Thus, my decision was made easier to accept the translab approach.

The decision has to be yours, and yours alone, based on the excellent information you are receiving from medical professionals.  However, since you already have some facial symptoms ..... the translab approach does give the best view of the facial nerve ..... and I presume the HEI docs may have mentioned this to you.

Many thoughts and prayers during this decision-making struggle.

Clarice

[spgreenfield]

Oddly enough I've queried both surgeons - Cincy (Dr. Tew) and HEI (Dr. Schwartz) and Dr. Tew reports that retro doesn't give any less chance of facial nerve preservation.  The one thing that the translab does is give them the ability to remove AS MUCH AS POSSIBLE from what seems to be a better angle.  I have investigated both locations, and HEI seems to be top notch experts in the field... on a practical note - the weather out there this time of year is much better than what I'll find back east - and flight costs in and out of both places is equal!  The best part is that I can get a non-stop flight to LAX as well.  So no need to deal with an airport and changing planes!  Or the worry of bad weather delaying a flight and causing me to miss any connections.  My only thought is that my husband could possibly have company from family friends during my long surgery if I choose Cincy - and I'm not sure who's close to LA for him if I choose HEI.......am I worrying too much about his needs at this point?

Pam

[New girl]

I had retrosigmoid for a 1.4 cm tumor.  I had a significant amount of hearing in my right ear which I did retain post surgery.  I was also told it was a 50/50 chance that I would retain some of my hearing.  I am not sure what the stats are for larger tumors.  The surgery type is a tough decision to make as well as where to have it done.  Sounds like you have found some great doctors.  Best wishes.

[LisaM]

My only thought is that my husband could possibly have company from family friends during my long surgery if I choose Cincy - and I'm not sure who's close to LA for him if I choose HEI.......am I worrying too much about his needs at this point?

Yes.  You are number one in this scenario.  This is one time in life when being selfish is absolutely necessary.

[opp2]

I had retrosigmoid approach for two reasons. 1) because that was the surgery of choice for the surgeon I chose. He uses retro because he likes the angle, and he uses gravity to move the brain out of the way. When they open the skull in this surgery, depending I suppose on the surgeon, the csf fluid is drained and the brain stops float in and falls back out of the way. This was the un scientific explanation I got. Made sense to me too.

2) because I really did want to save my nearly perfect hearing. Selfish I know but that's what we all want.

And I suppose the real reason, and one that does not get numbered is I researched many physicians here in Ontario Canada, and at House and in BC where I finally went. The doctors here in Ontario gave me very poor odds to avoid facial paralysis. Dr. Friedman at House was spectacular. I booked with him and was ready to pay $$ for the surgery, flights, hotels meds etc. Then I was turned on to Dr. Akagami and Westerberg in BC and was able after weeks of waiting, book surgery with them.

For me it turned out great and I did lose my hearing. But I was told up front, the possibility of saving my hearing with Dr Akagami was somewhere between slim and nil. Basically I might have been able to save 30% of my usable hearing (so I might be able to have some direction locating ability, but nothing really useful from a listening to music, speeches, movies etc)

All the best to you as you research and decide.

Nikki

[Mei Mei]

Back in Nov 2009 Dr. Friedman at HEI offered me Middle Fossa for the AN tumor while Johns Hopkins offered Retrosigmoid offered only and that's with all their patients Retrosigmoid.   I opted for Johns Hopkins because it was near my home and I had my 96 year old father living with me plus a dog.   I had to stay there 6 days.   Had i known then what I know now, I would have jumped to go to HEI, but why not the Middle Fossa for you.
This is one of my regrets in life;;;not going to HEI because of my family commitments here.   Back in 1989 I went to UC Irvine hospital to have vocal cords surgery and didn't have as many problems back then in family responsibilities that I have now.  I should have listened to my gut and gone out there for the 10 days they require for follow up.

Mei Mei

[Tod]

My surgery was a combination of both approaches, which to all accounts (or lack thereof), is very unusual. However, the surgical team felt it necessary in order to  get at the tumor as best as possible. However, despite the effort and access over 32 hours, they could only remove about 90% of it because it has such an excellent blood supply.

As other have said, this decision is yours. If you can't decide, I suggest talking to more doctors. When enough of them say the same thing, you know you are zeroing in on the right solution.

Best of luck,

Tod

[spgreenfield]

My goodness!  What wonderful feedback from everyone!!!!  My tumor is too large for the middle fossia approach...hence the retro or the translab.  I'm beginning to feel a little more swayed towards the translab - because I would like to see the best outcome!  I worry about the blood supply for the tumor, Tod, but hoping that since it's cystic, maybe the blood supply isn't reflected by its size - as cysts don't grow based on blood supply....at least I don't THINK so!

Will continue to ask many more questions - but will shortly be making a decision....

Many thanks to all who replied!

Pam

[mk]

My perspective regarding the choice of translab or retrosigmoid is a bit different.
First of all, unfortunately hearing preservation is very difficult for medium-large tumors. Even with retrosigmoid, most people I know ended up loosing their hearing. So hearing preservation should not be the only factor when choosing retro, you should consider all possible risks.

The approach that I chose was to go with the best surgeon that I could find/have access to, and let him suggest the approach that he prefers. I had no useful hearing left, so hearing preservation was not a factor for me. Most of the surgeons I saw, suggested translab, two of them suggested a combination like Tod mentioned (which I had never heard of before). They also gave me terrible stats for facial nerve preservation. I ran away.
I ended up with Dr. Akagami, same as Nikki. I chose him, because of his stellar record, not because of the surgical approach he uses. In addition to what Nikki has already mentioned, Dr. A. explained to me that in his point of view, translab exposes the facial nerve too early, making it prone to damage. He prefers retrosigmoid, because it gives better access to larger tumors. Most surgeons will say that translab offers the best chance for facial nerve preservation. It all depends on the individual surgeon preference.

Bottom line, the surgical approach will not guarantee the best outcome, the skill of your surgeon will. So instead of agonizing over the choice of approach, I would try to identify the team with the best record, in terms of what is more important to you.

Marianna

[james e]

My doc picked translab because my hearing was pretty bad, and he said even if we used another approach, it would fail in the near future. The translab gave a more direct approach and made it easier to save my face. SSD is not bad...I was about half way there anyway. My face works just like it was new, food tastes great ,and I have a BAHA...life is great.

James

[JAndrews]

I had the translab and have no side effects except the ssd. With the retrosigmoid approach there is a higher chance of life long headaches. Also, the translab gives a better view and better chance to remove the whole tumor. This is what I was told by the consults I had and I had alot of them. Mayo Clinic thought my hearing was worth a try at saving. House said I didn't have enough functional hearing to save. My gut told me to go with House along with the research I did on my own. Good luck to you. My recent MRI is clear.

[Jim Scott]

Pam ~

This is always a tough choice.  My neurosurgeon opted to use the Retrosigmoid approach to de-bulk my large (4.5 cm) AN and I saw no reason to argue with him.  My hearing was kaput in the affected ear anyway so hearing preservation wasn't a consideration but the surgeon's ability to see enough of the tumor to de-bulk it (a 9-hour operation) was critical.  Having purused these forums, I was well aware of the possibility of headaches resulting from the Retrosigmoid approach surgery and made my (very experienced and respected) neurosurgeon aware of my concern (superseded only by my concern about post-op facial paralysis.)  He took my concern seriously and reassured me that he takes precautions and that: "my AN patients don't have post-op headaches".   I accepted his word on this issue - and his word proved to be true.  I never suffered any headaches following the AN debulking surgery.  Unfortunately, both Retrosigmoid and Translab surgical approaches do carry some inherent risks.  A doctor with much experience in AN surgery and a real concern for his patient's post-op quality of life will do everything he can to minimize these risks, of course, but they cannot be eliminated and so, no doctor can credibly guarantee the surgical outcome.  That being the case, I wouldn't obsess over this issue of what surgical approach the doctor chooses to employ but, as Marianna correctly stated, focus on the medical team's experience, success rate and attentiveness to your concerns.  That's what I did and it worked out very well, as I hope your surgery - whatever the actual method used - will be for you, when the time comes.

Jim