type of surgery/result

[leapyrtwins]

I'll play

Retrosigmoid approach; no facial nerve damage after 1st day or 2 post op - and it was very slight.  Never a problem after that.  I don't have - nor did I ever have - headaches.

But as others have said, a lot depends on location and size.

My neurotologist gave me the choice of retrosigmoid or translab (or GK which I decided against).  I picked retrosigmoid because while I had diminished hearing in my AN ear I had good word recognition.  I felt it was important - at least to me - to have my doctors try to save my hearing.  I knew it was a gamble, but it was a gamble I was willing to take.  As I told my neurotologist if I lose my hearing, I lose my hearing - but I can't just let it go without at least saying we tried.  When I ended up SSD, he felt a lot worse about it than I did.  I think he saw it as a form of failure.  I saw it as "Hey, you did your best.  At least we tried.  We knew it was a possibility; sh*t happens".

I have to say, that if I wouldn't have had decent word recognition I would have chosen translab.  In fact, if I could have seen into the future and known I'd be SSD either way I would have chosen it.  I absolutely don't regret choosing retrosigmoid though.  Given what I knew back then, I would make the same choice today.

At the time of my surgery I had never heard of House - but, even if I had, I can say with absolute certainty that I would not have gone there.  If Ear Institute of Chicago didn't exist, I would have gone to Michigan Ear, to NYC to Roland & Golfinos, or a number of other places.

While House has a very good reputation - some would say excellent - it's just not practical for everyone to go to Los Angeles for surgery.  Plus IMO it's not necessary.  There are numerous places just as good - and sometimes the best solution is in your own backyard - or a state or two away.  I am living proof of that - so are many others like Jim Scott, Ernie, Nancy Mc, etc. 

I also want to point out that there are numerous doctors who originally trained at House who have moved on to other places.  So if the "House factor" is important to you - you might want to look for doctors who trained there who are closer to home.  There a lot of forumites who didn't go to House, but had doctors who trained there.   

No offense to all of those who had surgery at House, but we have to recognize - for the sake of everyone here - that there are other options out there.  And we have to recognize that they are very good options.

Jan

[Jim Scott]

Alica ~

Your question - and concern - is perfectly logical.  Everyone who receives an AN diagnosis, does some research and has to choose how to address the tumor has some apprehension about facial paralysis or facial impairment issues following the elected procedure.  I did - and I made them very clear to my neurosurgeon, who shared those same concerns and decided to approach my case with both surgery and radiation.  A somewhat longer road but one that was worth traveling.

I underwent retrosigmoid approach surgery (the technical name).  The surgeon performed a partial resection of my 4.5 cm AN, basically hollowing it out and leaving only a 'rind'' (in his words).  Within 48 hours following the surgery, my pre-op symptoms effectively disappeared.  I had suffered - for months - with intermittent stabbing pains at the AN site, loss of the sense of taste (and a subsequent loss of over 30 pounds), dizziness and extreme fatigue (the large AN was pressing hard on my brainstem).  I was fortunate and didn't experience any vertigo, facial deficits, infections, hydrocephalus or other post-operative complications and was discharged from the hospital with 5 days.  I recovered fairly rapidly and 3 months later, underwent a series of 26 'low-dose' FSR sessions over a 5 week period.  These 30 minute sessions were pre-planned by my neurosurgeon and a bright, young radiation oncologist he teamed with.  They were tedious but painless and were intended to destroy the remaining tumor's DNA, effectively killing it.  I've had many follow-up MRI scans and the last (August, 2008) showed definite necrosis and some minor shrinkage of the remaining tumor. 

My post-op/post-radiation life has been one of slowly but surely regaining what I refer to as 'normalcy'.  That is, I have my life back, with only a few alterations.  I was SSD in the AN-affected ear long before my AN diagnosis so that wasn't an issue.  My balance is quite satisfactory.  I've been driving since two weeks after my surgery, back in June, 2006.  In short: I'm good.    However, although my retro surgery did not produce any facial paralysis, the neurosurgeon didn't attempt to remove all of the tumor, which very likely made a difference. Of course, only you and the doctor that will perform your surgery can make an informed decision on what approach is best.  A poll is interesting but, unfortunately, not really a valid indicator of what's best for you.

Jim 

[salamander]

Retrosigmoid/Sub-occipital , Grade VI facial paralysis. improved to Grade V at 3 month (firmer looking face).  No movement yet at 3 months.

[NL]

Hi Alicia,

It looks like you've made your decision to have the retro in Omaha, so I don't know if you still want more input, but since you asked...

I had a retro at House with Dr. Friedman and Dr. Schwartz, and had no post-op facial issues, balance issues, or dizziness. Everyone is different, and in my case I had a "slippery" tumor (as opposed to "sticky") and had a relatively short surgery of 4 1/2 hours.

I just want to add that I initially consulted with 2 other doctors at House who both wanted to do a translab. I wasn't comfortable sacrificing my near-perfect AN side hearing, and was disappointed that I'd have to find another doctor elsewhere who would try to save it. After reading quite a few others' experiences with Dr. Friedman on the forum, I called House and asked if I could have one more consultation with another doctor. The person I spoke to said I could talk to whoever I wanted - Friedman thought I'd be a good candidate and for the retro and wanted to try to save my hearing.

Though the hearing wasn't saved, I'm very happy with my decision and outcome. I've spoken to other patients of his whose hearing was saved with the retro, so for me it was worth taking the chance.

Congratulations on having your treatment decision behind you - and know that we'll be here to answer whatever questions you may have both before and after your surgery.

All the best,

Nancy L

[Seal]

Good luck with the decision Alicia.     You'll know in your self what the right decision will be.     For me, I'm just a little disappointed not to go to House and meet Dr. Brackman.     He fishes alot with his sons in Cabo St. Luca, and one of his sons just set the world record for the most marlins caught in on day:  91 fish caught and released!        I was thinking that even if he didn't save my hearing, at least I could pick up some good rigging techniques for this summer!!!

Best wishes,
Steve

[Keri]

Hi Alicia,
I went with translab to get it out of there and also because they thought that with any other surgical approach my hearing would be shot anyway. I never worried about the facial paralysis issues because I thought that with translab the chances of that were reduced. So I was shocked when facial paralysis was my biggest problem post op. They said that my facial nerve was preserved and not damaged and that my face will get back to normal, but that nerves take a while. So I'm living with that. The biggest pain is the eye not closing correctly, but I'm living with that as well. I am improving and am thankful, and I feel great otherwise.
I wish you all the best in your surgery and recovery!
Keri

[tenai98]

transllab 2 weeks ago...some taste issues...some stuff taste like soap..no facial paralysis, no eye issuies..but some left side (AN) weakness and numbness.  Feels like I have an ice block attached to my head...now wearing scarf and hat to feel warm.....MY tongue at times fells burnt..but I know it isnt...also doc said nightmares are results from steroids
JO

[CHD63]

The responses on this thread are all over the ballpark.  I guess this illustrates that none of us can say this is what will happen following any particular type of surgery.

When I was first diagnosed, like many others, I panicked and started researching everywhere I could think.  I spent much time on the Internet exploring many sources of information.  I contacted every medical friend and relative I had for their opinion, etc. etc.  But, in the final analysis and after gathering whatever input you can tolerate (it can get overwhelming!) .... you just have to go with what feels right for you.

By the time of surgery, I was totally at peace with the decision to have retrosigmoid at Duke for my 2+cm AN.  I have no facial paralysis and no headaches.  I do have 80% hearing loss on the AN side and some surmountable balance issues ..... and of course, the probably inevitable tinnitus (which I can push to the background much of the time).

Clarice

[stoneaxe]

I have this exact same question so I'm glad you asked it. I see McKenna the 6th but spoke with my neurologist yesterday and he suggested and said he'd be surprised if McKenna doesn't do the same, to get it taken out. My hearing is gone as well so my only concern now is facial nerve and headaches.

[Rick Everingham]

Prior to my surgery I was having facial spasms, it would start in my cheek and tense up like a fist, pulling my eyelid down and the side of my mouth up.  I also had a lot of twitching in my eye lids (upper/lower), nose, and mouth.  After the surgery (trans lab), the doctor said my tumor was wrapping around the facial nerve.   I still have a very mild numbness and occasional twitching after 5 1/2 years.

[kathylittlejohncobb]

Hi Alicia,
I had retrosigmoid at House 3 years ago with no facial problems, and the hearing was saved on the AN side.  I highly recommend the House surgeons, as they are professional and caring.
Wishing you the best as you make your decisions,
Kathy

[catlover]

Hi Alicia,
I have also asked a lot on the forum about facial paralysis. I'm so glad you've already got a date of surgery. I'm still waiting and I've been waiting since NOVEMBER 2008!!! I'm so tired of it all, right now  I've called the hospital and the surgery coordinator several times, but I only get the information that the monitor that is going to control the hearing nerve is more delayed and they don't know when it's coming, maybe surgery in week 21 or 22 or otherwise I have to wait until autumn 

I've been recommended retrosig, because I have full hearing in my AN ear, but right now I'm thinking about to change the approach to translab because the time of waiting and I'm also very concerned about the facial nerve. Maybe, there are some on the forum that know if their hearing nerve has been monitored during surgery. I'm wondering if that is something "new" or if that is common. Here in Sweden they've told me that it is something "new".

Hugs to you all from Helene

[heyct]

Correct me if I'm wrong....since I'm still a "newbie".

I thought Translab actually gives them a better view of the facial nerve during surgery.? That's what I'm scheduled for, but my hearing is also shot. I'm also having facial spasms & twitching prior.

Carolyn

[leapyrtwins]

Carolyn -

you are not wrong.

I think you just read Helene's post incorrectly.

Retrosigmoid is said to have a bigger risk of facial nerve damage than Translab.  But that doesn't always hold true.

I had retrosig and had very slight facial nerve damage post op; it disappeared within the first 24 hours.

I was a perfect example of that old forum motto "Everyone is different".

Jan

[Keri]

... and i had translab and didn't expect any facial issues at all. but i had them / have them, but it's getting better.