ANA Discussion Forum
Treatment Options => Microsurgical Options => Topic started by: alicia on April 17, 2009, 07:36:20 pm
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I know you probably have done this a ton of times, but I can not seem to locate it on the forum...but would everyone please put the type of surgery and the extent of facial paralysis. I think I read (from Jan maybe) that it does not seem to make a difference and I do realize eveyone is different with their own tumor, but I have 2 docs telling me 2 different procedures and I need to go the the next appt. with good questions. Thanks, A
Please play
retro vs translab?
damage to facial nerve (more than a month)?
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HI Alicia!
I had a large AN removed in January, retrosigmoid procedure and absolutely no facial issues at all after surgery! (they did leave a small portion behind to preserve the facial nerve - sounds like this is becoming pretty typical)
I know you must be very concerned - wishing you all the best. I was too - spent a whole lot of energy worrying about something I had absolutely no control over and ended up just fine. Try to stay positive and learn from everyone here - the journeys are different, but we're all here to help!
Kathy
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Hi Alicia,
I didn't even have surgery, but I wanna play anyway. :)
I would ask each doctor which procedure they perform most often, how often their patients have had more than a month of facial paralysis, and how they think you would fare, based on the size and location of your particular tumor. It does often become a case of picking the doctor and procedure as a set, so to speak. You may end up finding that you feel more confident about one of them, and just go with that.
Where are you having surgery?
Steve
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I had a 2.5CM AN and it was removed using the retrosigmoid surgical procedure. Absolutely no facial paralysis.
Neal
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Retrosig for a 1.5cm AN. No facial paralysis. Do have additional hearing loss from the surgery. Also got the bonus headaches.
Syl
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Retrosigmoid, no facial paralysis. Had weakness one night. Doing great!
Ernie
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I am having retro May 14 in Omaha, NE at Methodist Hospital.
(unless I go crazy and decide to live in LA with my brother-in-law and have translab at House!!)
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Nothing crazy about contacting House to see what they say. The consultation is free. :)
http://www.houseearclinic.com/acousticneuromaconsultation.htm
Steve
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I did send my info to House. Brackman called today and said he recommends Translab. He says because my tumor is large - my hearing can not be saved with either procedure (local doc said same thing). He says he finds better results with Translab for preserving facial nerve, reduced spinal leaks, post headache, and complete tumor removal as compared to Retro. He even said he has regretted doing retro lately because of facial damage. He is sending me info on the 2 procedures and calling me back Wed. I see my local Neurosurgeon for a final time Tues and just want to ask him further details...is he doing retro b/c it's right for me, or because that's the procedure he does most?
After writing all this, I just want to be at peace and stop over thinking. I am so much a go with the flow girl - this is really making me think waaaayyyy too much :D
My kids said a few days ago that I have missed 3 nights of tucking them into bed...That has helped set me straight!
Have a great brunch - you guys all deserve a get-away!
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Alas, I am in Portland, Oregon, and will not be making the brunch in Boston. :(
Alicia, can you go to House? They come highly recommended around here. Plus, there is an LA welcoming committee of forum members, who often are able to meet incoming House patients for a stroll in the park, a bite to eat, and a chat about brain surgery.
All of us went through the intense period of over thinking and mulling it over. The decision about treatment is often the hardest thing. It is great that your kids reminded you about tucking them in; it is nice to get grounded now and then.
Steve
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some weakness for a few months, but nothing to wine about
I had translab ten days ago. The surgeons at MassGeneral/MassEyeandEar chose this approach when I was found to have no hearing remaining in my AN ear. I was relieved, as I was concerned about facial paralysis more than hearing preservation after seven years of decline. They removed the entire 1.8 cm tumor and saw full function of facial nerve immediately post-op. Next morning, not so much. They believe it will be temporary. I can only hope, but I am whining about it! ;D
Nancy
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Hi, Alicia - I had translab in Nov, facial nerve was preserved, but I had delayed facial weakness that lasted roughly 7ish weeks - was never worried as the docs assured me it was temporary from the get go, and it was!
Best wishes to you,
Cindy
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Hi Alicia,
I had translab almost 5 weeks ago for a 2.7cm tumour. All good! The whole thing was removed, no damage to facial nerve, no facial issues apart from my eye stopped closing properly on day 12 after surgery, lasted about 5 or 6 days. All fixed now!
Feeling great!
Best wishes with your decision
JB
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Hi Alicia: I had retrosigmoid for a 2.2cm AN. Ended up with total right sided facial paralysis. My facial nerve never responded on the monitor from the beginning to end of surgery. The AN had been there for approx. 20 years (I figure that's when the tinnitus & decreased hearing started). My facial nerve was severely damaged.
You really can't go by the type of procedure - it all depends on the extent of damage to the facial nerve & if it is able to 'come back.'
Always good thoughts, Nancy
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Alicia~
I TOTALLY agree with Nancy - I think it all depends on how big your tumor is (however Jim Scott had a biggie and no paralysis) and where it is located - the main thing being WHAT it has been pressing on & for how long (to what extent) - I realize that doesn't help you much!
I had a translab but it was a LONG time ago - I think I would probably have different results now (but I'm not going to sit around & mourn that - at least I am still here!). Also, my tumor was "HUGE" (size of a man's fist - don't have exact measurements).
My 2 cents, if anything ever happens again with my AN, I'm heading straight to House...& not just because I want to meet LADavid (even though that is a big motivating factor!)...
K ;D
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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
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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
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Retrosigmoid/Sub-occipital , Grade VI facial paralysis. improved to Grade V at 3 month (firmer looking face). No movement yet at 3 months.
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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
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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
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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
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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 ;D
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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
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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.
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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.
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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
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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
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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
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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
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... and i had translab and didn't expect any facial issues at all. but i had them / have them, but it's getting better.
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Alicia,
I had translab knowing there would be total hearing loss on that side and a good chance the facial nerve would be unrecoverable also. I would go with whichever procedure gives you a chance (no matter how small) of it turning out the way you desire. You can't go back afterwards so don't play the odds and accept something undesirable - go ahead and roll the dice on the option with the best possible outcome. If you hit the jackpot - good for you, if not its probably the end result you would have had anyway. Basically its your choice and although this is a very helpful forum and everyone is very supportive - you have to wake up and deal with the "new" you everyday, so give yourself the best chance at what you think will make you happy and then deal with whatever happens. It helps having friends here who can help you through any residual issues but we all made our surgery decisions for our own reasons based on our own expectations. You need to ask yourself what do you want (and "just make it go away" doesn't count) and what are you willing to risk to get it. Explain to the doctors your desires and then let them restate your options. If I could go back in time (ahh, the eternal quest) I would have tried to find a way to get the tumor cut down and then radiated like some other have had (mine was big) even if it meant waiting or travelling a long way to make it happen. And I'm about 50/50 on whether I would have let them do the VII/XII transfer again (not one of your concerns).
I've read a few of your recent posts and you really seem hung up on the facial paralysis. As others have said, there is life after AN removal. I have total paralysis and the VII/XII nerve transfer just makes my face twitch every time I swallow (annoying as heck). But you just deal with it and move on - its really not that bad. My two oldest were about the same age as yours and they had no problems after the surgery - they were actually interested in the changes. We don't even talk about it anymore.
Sorry for rambling - I hope you make the right choice for you. But no matter the outcome you have plenty of friends here to help you through afterwards.
Rick