Newbie struggling: translab vs. retrosigmoid ? ? ?

[Jody V]

Hello all,
I am 41 years old and newly diagnosed (2 cm) on my left side.  I still have 70% of my hearing in my left ear.  I am trying to decide between Selesnick (in the NYC area near me) who recommended retrosigmoid or traveling to the House Institute in CA with Dr. Brackmann, who recommended translab.  Both doctors are highly rated and esteemed by ENT's that I know.

While I would love to preserve my hearing (I'm addicted to stereo sound!), I don't feel like I am getting an accurate picture of the additional risks of retrosigmoid, such as facial nerve damage, headaches, and leaving a piece of the tumor, with the risk of needing future radiation.  Brackmann feels my chance of preserving hearing, due to deep penetration in the IAC is only 10-20%. 

Did anyone use Selesnick for retrosigmoid and would like to share their experience?  I would appreciate any information or thoughts you could share, too.  Thanks so much!

Jody
 

[kenneth_k]

Hi Jody.

Both surgeries are safe but carries different risks. If you want a chance at preserving hearing, retrosigmoid is the only possible solution. I would be a bit concerned that 100% tumor removal is not always guaranteed. If chances of hearing preservation is only 10-20% due to deep penetration in the IAC, complete removal would most likely be difficult, but of course not impossible. If a piece of tumor is left behind, you have to be monitored for the rest of your life. If you feel ok about that, why not try to preserve hearing. Otherwise, go for translab which almost always ensures complete removal.

Best regards, Kenneth

[Jim Scott]

Hello Jody - and welcome ~

I'm sorry to learn of your AN diagnosis and that you have to deal with the dilemma of choosing which surgical procedure to opt for.  This is always a tough one.  Of course you want to try and preserve your hearing but your concerns about the risks of retrosigmoid approach surgery have to be taken into consideration.  I underwent retrosigmoid surgery to debulk my large AN and had no facial or headache issues.  However, my hearing nerve had already been severely compromised and my hearing permanently lost in the affected ear, so hearing preservation was not an issue. I underwent 26 FSR treatments 90 days later as a preemptive measure to kill the remaining tumor's DNA.  Four years later, all is well.

For you, travel to the west coast could be a bit problematic but hardly a barrier to choosing House Ear Institute in Los Angeles.  The reality of the Translab procedure permanently taking your hearing in the affected ear is daunting but has to be balanced with the risks of employing the retrosigmoid approach for your surgery.  Unfortunately, every AN case(patient) is somewhat unique and what works for one does not necessarily work for all.  Besides that, the experience and skill of the surgeon is a major factor in reaching a successful surgical outcome.  Obviously, no one can make this decision but you.  I trust you'll receive more information from our members and I hope you'll be able to make a decision that you're comfortable with , soon. 

Jim   

[leapyrtwins]

Hi, Jody.  Welcome to the Forum.

I had retrosigmoid surgery, but not with either of these doctors (who by the way, both have stellar reputations).

I had my surgery locally, because I found very experienced, well-qualified doctors right in my own backyard.  Although some travel for surgery, it's really more of a personal choice than a necessity unless you have no "good" local choices.

I had decent word recognition going into the surgery - although my hearing was "diminished" - so I chose retrosigmoid over translab.  It was my personal feeling that I wanted my docs to at least try to save the level of hearing I had and if they couldn't "oh well".  My attitude was "nothing ventured, nothing gained; let's give it a shot".

During the surgery they discovered that my AN was wrapped around my hearing nerve (something that isn't evident on an MRI) and they made the decision to sacrifice my hearing nerve in order to remove the entire tumor.  Although I was sleeping at the time and couldn't give my docs my two cents worth, I whole-heartedly supported their decision. 

Everyone's AN Journey is unique, but I have had no headaches from retrosigmoid and only had slight facial paralysis for 1-2 days post op; a dose of steroids cleared it up. 

IMO translab vs retrosigmoid doesn't mean your docs can or can't remove the entire tumor.  My tumor was removed "100%", however, it's important to note that I still have a 1-2% chance of regrowth.  Even when docs say they removed 100% (and strongly believe that) they can be wrong.  Even one cell left behind is enough for regrowth; and cells can be small and not easily seen. 

If I had to do it all over again, I still would opt for the chance (as slight as it is) of saving my hearing through retrosigmoid, but that's just me.  You should do what is best for you (what you are comfortable with).

Nine months after my AN surgery I had a BAHA implant for my SSD and it's ended up being one of the best things I've ever done.  If you ever find yourself considering one, please don't hesitate to ask me about it.  I'd be happy to answer any questions you might have.

Best,

Jan

 

[nanramone]

Have you considered radiation?

[Syl]

Jody:

I had my surgery 2 hrs from home with excellent doctors. I had retrosig to try and preserve my 60% word recognition. It's now at 20%. It's too much hearing for a BAHA, but not enough for a hearing aid to help with conversations.

Facial nerve is fine although I had very slight facial weakness 2 wks post-surgery. Prednisone took care of that.

I do get post-surgical headaches, but I don't know that any other approach would've resulted in a different outcome. However, the headaches are diminishing in intensity and frequency. A tiny bit of the tumor was left behind. My 2-year MRI showed it's stable. I'm not due for my next MRI for another 5 years.

It's not an easy decision to make so get as many drs' opinions as you need to make you comfortable with making a decision.

Syl

[CHD63]

Jody .....

I went into retrosigmoid surgery with 80% hearing, came out with 20% and still good speech discrimination in the ear.  I had no facial issues and no headaches following surgery.  I use a hearing aid in my AN ear.  After about a year with a MicroTech brand, I switched to a Widex and for me, at least, it was a huge difference.  I can now hear very well and have my directionality back (the thing I missed the most).  I still have tinnitus (in fact it seemed to be getting worse) but now that I am wearing my hearing aid 12-15 hours a day, it greatly helps to mask it.

I would make the exact same decision I did before surgery.  My doctor said he had totally removed my tumor but like Jan said, no surgery can guarantee absolutely 100% tumor removal ..... even translab.  It's just that translab has the optimum view.

Best thoughts and prayers for answers to the right decision for you.

Clarice

[jaylogs]

Jody, welcome to our little club!!! I know this part of your journey will probably be the worse for you...it was for me!! I had middle fossa surgery done with Dr. Brackmann at House in December, so I am a relative newbie myself!  But just know that for those undergoing either retro or middle fossa, the possibility or retaining your hearing afterwards is probably about 60%, which is a little better than an even chance.  I was fortunate in that I kept my hearing.  As Jim said, every person is unique and so the outcome will vary.  I saw several doctors in my local area, who all recommended Translab, and Dr. Brackmann was the only one who thought I could do middle fossa so based on his experience AND the possibility of saving my hearing, I went to LA for it.  I went in with the mindset that if it didn't work, that was ok and that I gave it a shot. I just wanted the best surgeons for the job and I really did get it with Dr. Brackmann and Dr. Schwartz.  Once you do make your mind and if it feels right to you, then THAT's the best decision you made and it'll be all good!  Good luck and let us know how it goes. Also, this board is pretty good for venting, and there is a WTT (Willing To Talk) list somewhere on here with phone numbers of people who you can call and get whatever information or just some encouragement!  Good luck!
Jay

[leapyrtwins]

there is a WTT (Willing To Talk) list somewhere on here with phone numbers of people who you can call and get whatever information or just some encouragement! 

The WTT list isn't actually posted on the Forum.

But the ANA does send it to you when you request information.

It's a great resource,

Jan

[Mickey]

Being from the NYC area you may want to try Drs. Roland and Golfinos. I`ve been with them over 3 years W+W and known their history for so many other patients who I get to see at AN meetings with all good outcomes. What I like about them is their diverse ideas in treating every patient along with their many years of experience. Best wishes, Mickey

[jaylogs]

The WTT list isn't actually posted on the Forum.

Ahhhh, that'd be why I have never seen it...makes sense now!
Jay

[opp2]

Hi Jody,

I am just 5 days post op from retro sigmoid. I chose retro because of the surgeon and the technique. I just couldn't bring myself to have the translab. Of course I was fortunate to find a surgeon who was willing to do the retro for me. I had 90% speech recognition one week prior to surgery. Today I got crickets.  seriously. I have only some lasting cricket tinnitus or left over sounds from the settling in my skull. I knew this was a possibility, and I was prepared for it. And it really wasn't/isn't all that bad. (check back with me in a month when I don't still feel like I've been run over, backed up and run over again by a monster truck). Both of my surgeons were very frustrated by the loss of my hearing, but they and we just don't know where the tumour will press on the or grow on the nerve, and how it will stretch. It appears my tumour grew very much on the vestibular nerve causing all of my pre surgery balance loss, but when they got in there the hearing nerve was stretched like cellophane over the top of the AN. They told me they lost the response from the hearing nerve very early on in the surgery.  Now it may be the drugs, and it may be the manipulation on the brain, but I am waaaaaay happy. I'm alive, going to be well soon, going to go home and see my babies on Friday and life will go on. On ward and upward, onward and upward....