for the new folks

[cherrypiper]

5 years ago on Dec 3rd i had AN surgery: i told myself I'd always put the details here on the site, so even though i been not here for a while, this is for the new folks.

1. if i had to do it all over again even with what you will read the answer is YES i would.

2. my AN was a longer one. Take a large almond. That's what mine looked like.It was also due to its length entwined around my facial nerve which is right next door to your acoustic  nerve.

3. The surgery was here in Houston Tx at a hospital who even had a surgery center JUST for AN's. My ear surgeons name was Dr Chang. The "bone cracker " surgeon to make the hole in the skull is now at Mayo Clinic so rep was very good.

4. surgery took about 8 hours.

why so long? i started waking up during surgery and they had to stop it and re put me under. Surgeon said for every hour under, it takes about a month for brain functions to get back to normal. I'd tend to agree .

5. They used an orbital device to hold head in one place while they sawed into skull. this put 3 good sized creases in my head that hurt like hell for a few weeks.

6. They say they got as much as they could. after 6 month , 1 year and 2 year visits to MRI's there was no return of anything.

7. after effects?

well when you go into surgery , the lawyers have the Dr.s give you a list of ALL that can happen to you including death. what happened to me was on the list for sure but trying to figure out what all the after effects could be would mean I'd never have surgery.

Immediately post op, i had a hard time walking down halls with out listing to the opposite direction from my AN. Had a post op blood clot in leg. Had head aches from Hell. was very glad i had 4 weeks before i went back to work. I'm a college prof. Most folks looked at me and asked if i had had a stroke.

Now, i have slight facial paralysis. my rt side , the AN side, doesn't move even 5 yrs post surgery. Regular Dr said my facial nerves and links are now completely done and withdrawn they never will move again.

I can't suck on a straw on rt side.

My eyebrow is higher on face then left one cause scalp is just tighter over there.

I cant "smile" on right side. smirk yes smile no.

The BIG deal is my rt eye. i cant wink. or blink with out a conscious effort.

Your eyes blink all by themselves all the time. my rt one doesn't. which means eye drops, a very real affliction to sunlight even on cloudy days i wear sunglasses. and if i nap in afternoon i have to wear a patch on eye cause it does not close all the way .

Ever TRY to close your eye and go to sleep?  LOL not easy at all.

Great Big Deal ? nope i suppose not cause i am more or less used to it now.

BUT i always say on this forum if you are a young women between oh 29 and 49 ? maybe you don't want to do this unless it is life threatening. Just from the facial paralysis viewpoint of one 61 yr old male .

I cant have facial surgery like a lift to correct it because the "effects" of my surgery couldn't be found until way after the AN issue . Besides my insurance calls that "cosmetic" and thus not funded.

The botox might work but its an every 6 months deal and once again it would be out of my pocket which isn't doable.

I always bring this up cause from what i can see in Houston at ANA type functions maybe 10 to 20% of folks have this issue. is that statistically proven over the whole USA? of course not.

BUT once again it is why Dr.s don't much endorse AN recovery groups. would you want to see 10 to 20 folks out of every 100 with facial issues if you were the Dr? probably not.

so that's it. it is what it is.

and like always there will be plenty of folks who will pooh pooh what happened to me  and say i am not being supportive. Baloney . it's what CAN happen . so just consider it...... thanks

[PamJ]

I had similar troubles to you but don't harp on about it and scare the life out of people who are trying to decide what path to follow.  How unfair are you.  I say to anyone waiting to have an AN removed everyone is different, you get people who can't move on with life and whinge all the time and others who are just grateful their 'lodger' has been removed. 

[robinb]

As a newbie, I appreciate all the comments, skip through whats not of interest and would like to believe I am intelligent enough to take away whats most useful to me personally. If people are bitter or stuck on self pity and/or regret, we should all see this so we know what may happen to our own attitudes. Even with all the personal clutter and commentary, I found this site immensely helpful. Also, thanks to the willing to talk people, being diagnosed the week before Thanksgiving, I was able to quickly make the best treatment decsion for me. (Gamma knife scheduled w/Dr. Lunsford at UPMC on January 24th.)

[Jim Scott]

Steve ~

Thank you for posting your observations regarding your AN experience, which apparently, was not without a few deficits.  That being the case, your somewhat pessimistic comments are understandable - but so are a few of the initial responses.

I would emphasize that your post reflects your experience and, as we often caution (and I think you would agree) one AN patient's experience does not constitute a template for every AN patient.

AN surgery is fraught with possible complications and the ANA does not pretend it isn't.  That is why this website's home page strongly urges newly diagnosed AN patients to seek a doctor with extensive experience treating acoustic neuroma patients, whether with surgery or radiation.

Our membership is comprised of of AN patients with myriad outcomes; some good, some not-so-good.  We do not censor those who experience sometimes maddening post-op issues - we support and encourage them - but we caution that these issues are certainly not to be seen as guaranteed for every AN patient that undergoes surgery or radiation.  I had both surgery and radiation (as a planned 2-step procedure for a 4.5 cm AN) and had few negative experiences or lingering problems.  However, I'm one person and do not pretend my experience is the absolute norm.  It isn't.  I know it and I believe anyone reading these posts would quickly grasp that reality.  Those of us with 'good' outcomes are eager to let newly diagnosed AN patients know that they are not automatically doomed to facial paralysis, intractable headaches or other AN-related issues but that the surgery and/or radiation can produce some of these problems.   

Your post shows us that post-op issues do arise and that some folks can handle them better than others.  That is human nature.  Your conclusion that you would do it all over again, even with the issues you've had to deal with, is, in it's own way, encouraging - and I thank you for that. 

Jim

[Kaybo]

As always, well said Jim Scott!!

I've always said that medical technology is making HUGE advances EVERY day and we all benefit from them in one way or another!  It is all how you CHOOSE to look at things...I would say that I probably had everything that is listed that "could" happen, did - except death! But you know what?  I have a GREAT life - it is a little (OK - kind of a LOT) different than I thought...but really, how many people's life follows the path that they have laid out when they are 25? I guess I am one of those poor, pitiful people that have a crazy face...nor can I do most of those things that you mentioned, but I don't let it stop me - I find a new way and go on. AND guess what?  After 17 years, I have a small, OPEN-MOUTHED smile...I couldn't be happier!!  You go without something for a while & it becomes even more precious when you get a little glimmer of hope...of something that the Dr's said would NEVER HAPPEN!!!  YIPEEEE!!

K   

[jaylogs]

Thank you very much for posting your experience for everyone to read!!  In my opinion, I think it's good to get both the good and the bad and everything in between so when someone is going through this the first time they'll get a good feel on what things are like.  As Jim said, everyone's experience is unique.  Again, thanks and take care!
Jay

[PaulW]

I think it is important that people make an informed decision.
An informed decision means knowing the risks, and the life long deficits that may occur for your treatment decision whether that be watch and wait, microsurgery or radiation. Cherrypiper has given us his experience and I think we should be appreciative in hearing his story. I think we can all do our bit to reduce these sorts of stories too. How? have a good look at the front page of the ANA Website

Its probably a good time to reflect on the most important sentence on the front page of the ANA Website..
It is in the biggest font. Yep its larger than anything else on the front page of the ANA website and for very good reason.

"ANA recommends treatment from a medical team
with substantial acoustic neuroma experience."

Death rates in the US for Acoustic Neuroma Surgery is around 0.5%
Death rates are far higher for the inexperienced doctors.. around 2%
Death rates are far lower for experienced teams.

Its not just the death rate, facial palsy, meningitis, stroke, life long debilitating headaches, brain injury from retraction, bleeding, CSF leaks, people needing permanant care.
The statistics in all of these areas are many times higher, sometimes a magnitude higher than the best teams.

A good place to start selecting an expert is also on the ANA Website
http://www.anausa.org/index.php/medical-resources/physicians-directory

Serious complications and poor outcomes happen often.

The best thing that we can do is guide people to do the research so they fully understand the risks and possible consequences of their treatment choice. If something adverse does happen they will also be more accepting of their choice.

Maybe people should be scared of the potential consequences.
Maybe that will help them make a better decision.

I was introduced to the world of Acoustic Neuromas not through my diagnosis, but through a friend.
She was a fit and healthy 32 year old lady who underwent surgery in 2004 for a 2cm tumour.
Surgery was 12.5 hours, her facial nerve was damaged she had complete palsy 
10 Days after her surgery she was about to be released to go home, but her son had chicken pox, and as she had never had chicken pox. They kept her in hospital for another 3 days. She then started to go yellow, and they suspected hepatitis. After 2 days they realised it was not hepatitis and her liver was destroying itself. The long surgery and sensitivity to the anaesthetic was causing a serious complication. Two weeks later she was dead from Acute Liver Failure triggered by the large amount of anaesthetic used for the long surgery.

Who knows, maybe if she was operated on by someone else the surgery would have taken 6 hours, she would have had less anaesthetic and she would still be here.
If she chose radiation, she would almost certainly still be around and her facial nerve would be in one piece.

Was I scared by what had happenned to my friend. Absolutely.
Did it help me make a good treatment decision. I certainly think so.

One in 200 pay the ultimate price.

http://www.ncbi.nlm.nih.gov/pubmed/21856684

Full text here
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3199160/

"Perhaps the most striking and correctable finding is the persistence of the impact of surgeon caseload in independently predicting outcome following acoustic neuroma excision. Whether the outcome measure was mortality, morbidity, or adverse discharge disposition, surgeons performing fewer than 3 acoustic neuroma excisions per year yielded significantly inferior patient outcomes than surgeons performing 3 or more acoustic neuroma excisions per year"

There is so much terrific information on the ANA website especially in the members section.
People need to be aware of the significant problems that can occur and the risk involved.
I think at times we gloss over these things a little lightly.

The best advice really is on the front page of the ANA website.

"ANA recommends treatment from a medical team
with substantial acoustic neuroma experience."

[Jim Scott]

Thanks for your thoughtful input, Paul. 

However, I have to disagree with the statement: I think at times we gloss over these things a little lightly. 

Let us keep in mind that these forums are a support resource for AN patients, especially the newly diagnosed who are often confused and fearful.  We are not a 'medical' site and none of our posters are doctors.  We share experiences and of course we try to encourage each other.  That does not constitute 'glossing over' the possible negative outcomes of AN surgery but attempting to keep them in prospective. Of course we try to accentuate the positive but we do so with the caveat that bad things can occur with AN surgery and my posts to newly diagnosed AN patients bear that out.  I see little benefit in telling a nervous, newly diagnosed AN patient that they may die or be permanently affected by the surgery and could spend weeks in the hospital or go home with intractable problems that will plague them for the rest of their life. We mention the possibility of negative outcomes but always with the hope that they'll do well.  Gloom and doom serve no real purpose on a website discussion forum that was established to support AN patients.   If not pounding a frightened, newly diagnosed AN patient with 'horror stories' is 'glossing over' then the term means something different than I believe it does.  I doubt that is what you really meant but the issue is, admittedly, subjective and as a moderator I strive to walk the line that supports AN patients without misleading them.  Being positive is part of that.  However, one look at some of the forum titles, many with the word 'issues' in them, speak to the reality that AN surgery (and sometime, radiation) present to the AN patient, who, in the final analysis, is the person for whom these forums exist.

Jim

[Tod]

Jim's comments are on target, but that is not to suggest that I think either Paul or Cherrypiper are necessarily wrong. I do think Jim is a bit more right though.

The ability to share, in a positive and supportive way, that sometimes bad things happen or that the unexpected happens, is a very powerful tool to help people make a decision. When someone first comes to this site, they are often, at the very least, somewhat shaken. I know I was. While I tend to be a big fan of bluntness (and recent editorial described one of my reports as being "admirably blunt about its limitations" - I was thrilled), most patients will get that from their doctors.

I don't think we should ever hide the risks. We should be honest about what we know, and we should perhaps tell our own stories often enough that the newly diagnosed will have a better understanding of what all this is about. We also must recognize that there is a certain amount of self-selection going on in terms of not only who joins the site, but who continues to post.

I've always hesitated about posting my experiences because they are so out of the ordinary that it could be very scary. on the other hand, I am such a stunning example of success, that perhaps I should rethink that. 

-Tod

[james e]

I had a 10 hour translab. It was a piece of cake. I would do that all over again rather than get dental work. Had it done in Houston by Vrabec at Methodist.

[PamJ]

Hi everyone I hope I haven't opened a can of worms here by posting my feelings on cherrypipers posting but at the time of reading it  I felt that if I'd just been diagnosed with an AN and read that it would have scared the life out of me.  Admittedly I had probs but I'm bouncing back and now have a BAHA fitted so I can even hear on my deaf side again and am so happy with life.  Hey James e I'm with you on the 'dental' thing. x

[Chances3]

The posts here are amazing, and not what I normally read on this site.  It's my belief that sooner or later a AN has to be dealt with.  Treatment is in the cards for all AN suffers, however its always a question about the type of treatment.  Many people are frightened of surgery, let alone brain surgery and chose a non surgical treatment.  Other people are frightened of having something growing in their heads, and they just want it out.  I think this site is incredible valuable in giving people as much information as possible so they can make the decision that they are most comfortable with.  This site gives people an opportunity to connect with others to learn about their experiences, and the results of the doctors they have used.  I'm sure it's very comforting to talk with someone who has been treated by the doctors you are considering using. 

For my personal journey, I chose surgery and I have no regrets.  Yes I did make sure that the doctors that were going to operate on me had years and years of experience. 

[leapyrtwins]

As always, well said Jim Scott!

I agree.

Jan

[cherrypiper]

i absolutely agree with Jim..........it's the same response every year.........

look folks.........i'm NOT anti AN surgery , heck i had it. were there a few issues? oh yes there were.

am i trying to make anyone scared? no far from it...........just aware is all.

i expect a few how dare yous , but i also know most of the long timers here too.

If my way of telling what happened to me bothers you , move along  lol...........