For the New folks

[Migoi]

There's a great big world out there & a LOT to experience & I am going to do the best I can to live it to the fullest - in whatever way I can!

K

And she does so with an amazing amount of elan and personal beauty. Absolutely an outstanding person.

I'm not sure it's actually possible to down play the possible negative outcomes from having an AN. Every informational page about AN's that I've ever run across states that facial paralysis, deafness, and vertigo are all common/highly probably outcomes. These same outcomes are listed for each of the three treatment avenues (microsurgery, radiation, and watch/wait). There doesn't seem to be a shortage of examples of those outcomes.

It is equally appropriate to make sure newly diagnosed folks understand that the probability of having severe effects is not 1...it's some fraction of one. The whole thing operates much like the Schrödinger's cat experiment... you can't possibly predict the outcome until you open the door (or they open your skull).

The only problem I have with the original post is this line: "I would NOT recommend this surgery for any young lady under about 45 years old. My surgeon , the bone variety, was clear about why but it didn't "hit" me until after. These two words are PARAMOUNT for you to understand.

FACIAL PARALYSIS..."

The difficulty I have with this line is two fold.. One, some of the most beautiful women I know are over 45 and/or fairly severely affected by facial paralysis due to an AN. Two, making a general recommendation about one treatment path over another treatment path based on personal experience and not the particulars of the person the recommendation is aimed at, seems like a fairly bad idea.

Presentation of different personal experiences does nothing to diminish the importance or validity of any of the given experiences.

..thanks for being.. migoi

[msmaggie]

I couldn't agree more, Migoi!  You spoke from the heart.  As someone "slightly" over 45, I don't think my concerns about what I might be facing were any different than those of someone younger. There are risks involved with any medical procedure, and anyone who reads what is posted on the forum carefully will get the big picture.  I know I felt I was fully prepared, and I also knew I had new friends who would help me through the bad patches.  And they did, with compassion, prayers, and a healthy dose of much needed humor!
Priscilla

[PaulW]

I am going to put this out there as a topic of debate.
As we know there are three basic treatment methods Watch and Wait, Radiation, and Microsurgery.

I think we all agree that everybody must make up there own mind as to how they wish to be treated.

The thing is, there is already significant medical material available indicating which medical treatment is best for certain AN's, and other material which is leaning towards certain treatment methods.


Example.
You are a 30 Year old with a 4cm AN, pressing on the brain stem, and you choose watch and wait
I am sure everyone on the forum will jump on and be medical experts saying the only option is surgery.

There are other examples that are also medically clear cut
You are an 85 Year old with a 10mm AN and are completely deaf.
Watch and Wait makes the most sense here because at 85 your AN will probably never show any growth.

When your AN falls outside of certain parameters the decision becomes less clear cut.

There is a significant amount of recent medical information indicating that for a growing AN 15mm or smaller, where the patient has functional hearing and wishes to retain their hearing,
that radiosurgery provides similar control rates, better long term hearing preservation, no permanant facial nerve problems and faster recovery than surgery.
The risk of facial nerve problems from radiosurgery are virtually nil using contemporary doses, on small AN's
There are no CSF leaks, meningitis, golden staph infections, or reactions to anaesthetics.

Are we at the point where traditional surgery has had its day for small AN's?

If someone wishes to have a 3mm AN treated for their symptoms, would anybody here really want to see them undergo traditional surgery?

There is a considerable weight of current medical evidence indicating that intracanalicular Acoustic Neromas (typically less than 12mm) where the patient chooses treatment and wishes to retain hearing, are best served by modern radiosurgical techniques.

We can say dont get radiation because your tumour is greater than 3cm.

When can we say don't get microsurgery if you want to avoid the risk of facial palsey for small AN's?

[texsooner]

I haven't been around all that much here lately, but feel compelled to chime in. Cherrypiper, as others have said here, all experiences are worth sharing. Thanks very much for sharing yours. I actually think there's quite a good balance here of people sharing different experiences. Yes, we all know about the possible negative outcomes of facial paralysis, hearing loss, balance issues, headaches, eye problems, etc. I don't think anyone here is minimizing the experiences here or are sugar coating anything saying everything will be alright all the time. However, I believe it is important for those who have had positive experiences to share their stories so that new folks can see that there is hope for a successful outcome in their particular situation.

I too had my surgery for my 3.5 cm AN with Dr. Joseph Chang at Memorial Hermann - Med Center in Houston and had a very successful outcome and was released from the hospital only 36 hours after my 11 hour surgery. I want to state here very clearly that this is not the normal situation, but it can and has happened.. I've been to 3 of the Houston AN support meetings in the last 2 years....don't know if I'm counted in the stats quoted above, but I had only slight facial weakness for a few months post surgery, but not any more. I sometimes feel reluctant to share much, because I feel I was very lucky to have had such a great outcome, while I know there are many folks who have issues pre and post AN surgery. I have what I consider only very minor issues that don't stop me from leading a very active life just as before my AN surgery. Heck, I just did a 20 mile training run (getting ready for the Houston Marathon) this morning and I feel very fortunate and grateful to be able to do things like that. When I was diagnosed, I was pretty much thinking gloom and doom and frankly was scared from reading so many negative stories on the internet. That's why I hang around some to tell my positive story in hopes that it will help someone to have a positive attitude going into treatment beforehand.   

Having said that, I don't think anyone is downplaying the risks and issues related to treating AN's surgically. It is very serious business.

I would keep encouraging everyone to share their experiences so that new folks can see all sides to treating AN's. I thank all folks that have done that and continue to support people here.

Patrick

[leapyrtwins]

Cherrypiper -

everyone has choices in life.  You can choose to look at things positively or you can choose to look at them negatively.

Although I've been through lots of "issues" in my life - both personal and medical and am still going through personal issues - I choose to look at things positively.

Does life suck at times?  Absolutely; it kind of sucks even as we speak - at least in my life

But that said, there is always something positive to focus on.  For example, 99.9% of acoustic neuromas are benign and despite the fact that I was initially scared sh*tless by AN surgery, that's what I chose to focus on.  I thank God on a daily basis that I wasn't diagnosed with something terminal, like a cancerous brain tumor.  SSD is a minor "disability" in light of what some people cope with every day.  And though I don't have facial paralysis, I'd venture to say there are worse things in life to deal with.  (No disrespect for those who have to deal with it). 

As we always stress on the Forum, and as I tell everyone who asks me about my AN, treatment decison is a very personal choice.  Nothing is a guarantee - just like the rest of life.  Life is a gamble.  Life is uncertain.   You have to weigh the possible outcomes and the possible risks and then you have to stand on the edge of that cliff, hope for the best, and jump off.

As Patrick said, no one here is minimizing anyone's experience.  But on the flip side (and I always love to provide the flip side) we need to present both sides of the story to those who come after us.  If we don't, it would be a great disservice to them.

Best,

Jan

[Jim Scott]

Jan, Jim and Cheryl. Your "oh its all going to be ok and come up rosie" shares do i believe a disservice to the new folks contemplating this surgery.

just for the record.......

1. i went to the Medical center here in Houston, had a wonderful surgeon who does several of these AN surgeries every week. he was highly recommended down here, named Dr. Chang.
 
2. i had a very efficient , straight forward, bone cracker surgeon, he was the head of the Memorial Hermann surgical teams for AN's. He's now at John Hopkins doing the same thing.

3. The AN teams have their own operating room JUST for this.

everything was as good as it could get here in Houston Tx.

4. Facial paralysis happens to 40 % or so someone said earlier. It happens cause until the surgeons get in there and then "scrape" the tumor off the acoustic nerve, one doesn't know what will happen to the right next door facial nerve.

To say , well we have plenty of folks who don't get it and thus lets keep putting out "touchy feely"" it will be ok shares", seems to me to be doing a disservice to those looking in for help.which is why i haven't been here for about 6 months.

My story is different then the long time powers that be folks in here, but it is i hope worth bringing up for the new folks.

 I was an Engineer once and while the 10 to 12  folks is way too small a sample of AN's in Houston, 8 to 10 of them having facial issues worse then mine is approaching 80+ %.

It is what it is for sure................somehow i had hoped that since i haven't been here for 6 months  or so, i wouldn't have what happened to me minimized again as to  not worth being told in this forum here.

Steve ~

I regret that you consider anyone adding caveats to your submission that facial paralysis is a near-automatic risk of AN surgery, no matter who does it or where it is performed is somehow 'minimizing' your experience.  I did nothing of the kind and I believe a re-reading of my initial response to you will make that clear.  I simply made the factual observation that you are disappointed in your surgery outcome, which is understandable, but that your outcome is not the absolute norm for every AN surgical patient. 

Your assertion that we foster an unrealistic attitude toward AN surgery and ignore unpleasant outcomes is mistaken.  This is a support site for AN patients and of course we all urge newbies (often frightened and confused) to 'think positive' and we don't offer up worst-case scenarios as that is hardly 'support'.  However, we don't sugar-coat the reality of the risks inherent in AN surgery.  We just don't believe a support site/discussion forum should be shoving worst-case statistics at worried people coming off an upsetting AN diagnosis.  We urge personal research, which will easily show the statistics for possible complications from AN surgery.  We have many members posting here that are struggling with far worse problems than you have described but they don't consider these forums to be 'touchy-feeley' or, more to the point, unrealistic.  They are thankful for a place to seek practical advice and support.

I asked my neurosurgeon - with 30 years of AN removal experience - what he planned to do.  He offered me a detailed plan that included nerve monitoring, of course and 'debulking' the AN (4.5 cm) to reduce the chance of facial nerve damage.  He also cut off the tumor's blood supply.   That all went well (no complications).  90 days later I underwent a 26-session series of FSR to destroy the tumor's DNA.  That went well, too.   Apparently, your doctor did something different, as doctors do.  I regret that you aren't happy with the outcome.  You're not the first AN surgical patient to feel that way.   If you want to vent about your unhappiness with your surgical outcome, that is well within the scope and purpose of these forums.  However, if you insist on using your surgery and it's outcome as the norm and claiming that we 'minimize' your disappointment because we don't accept it as the template for all AN surgeries, then you are missing the point of these forums.  I don't wish to antagonize you or engage in a drawn-out debate about the merits of your contentions so I trust you'll accept my wishes for your rapid recovery and let it go at that.  Thanks.

Jim
           

[ppearl214]

Cherrypiper

Thank you for sharing what you have shared.  I truly appreciate those that share their personal journeys in the hopes that it may help others.

In my 5+ years affiliated with the ANA and this site, I have heard the good, the bad and the ugly.  I have first-hand witnessed beautiful outcomes.... I have known of some with life-threatening AN's situations (ie: so large that the brain stems were twisted)... and we have actually lost some ANer's in their AN journey.

Reality, IMO, says that we are our own best advocates.  We are the ones that know our own personal AN journey more intimately than anyone.  It is up to us to be the best, well-informed patient we can be. It is our reality to understand all risks with AN treatment options (surgical and radio).

Nothing in life is guaranteed, except for one thing....... we share truths here and provide utmost support to all that come here seeking our knowledge, our experiences, our stories, our shoulders.....

Thank you Cherrypiper and all for sharing what you have shared. All too important for those beginning this journey, seeking out info. We have to have faith that those doing their homework, reading all of this, will be able to sit back, dissect the info accordingly for their own, unique situation and make the best, well-informed personal decision they can for themselves.


Wishing everyone a very happy and HEALTHY new year!
Phyl

[CHD63]

Jim and Phyl .....

You have so eloquently summed up the purpose of this forum that I should just leave it at that.  However, I feel compelled to add that early on in my post-surgical days, I quit logging on to this forum for a long period of time because of what I perceived as way too many horror stories from AN patients.  What I needed when I found the ANA was encouragement and hope.  The main reason I continue to post here now is to give what encouragement and hope I can to newly diagnosed people who are shocked and scared to death, as I was.  Yes, we need to know the possible side effects but we also need to know that dire results do not automatically happen.

Clarice

[moe]

The main reason I continue to post here now is to give what encouragement and hope I can to newly diagnosed people who are shocked and scared to death, as I was. 

I joined the forum AFTER my AN surgery, looking for support from those with facial paralysis issues. I think I too would have been scared away had I joined before the surgery

I continue to support those especially since I have had so many surgeries, and experiences to share if people ask questions.

 I was blissfully ignorant of the severity of the surgery. I knew I would lose my hearing, and that my balance would be "off." (Actually balance was fine after surgery, because the AN had been in there forever, and my other side had totally compensated). Surgery was the only option because of significant brain stem involvement.

I am reminded every day of the post op "treats" I've received but make the best of each day. There is NO crystal ball on how you'll be post surgery/radiation.

Anyway, you deal with what you have been dealt with when you wake up...

(I supported a young woman on the forum, who is doing just fine, and doesn't post anymore: same surgeon as I had).

Happy New Year to all, and here's to a relief to whatever ails us pre//post treatment.
Maureen