Author Topic: Denial?  (Read 13897 times)

Cheryl R

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Re: Denial?
« Reply #15 on: September 05, 2009, 07:47:47 am »
Marla,     This is a very hard time for you.         There are many,many people that have been to this forum,have treatment and then leave as they recover and life is pretty much back to normal, maybe with some adjustment.           You do learn to live with the loss of the hearing on one side.               For most people, the balance issues do improve.               The facial paralysis is an adjustment and if one has it,it does improve and go away for many.     Some with severe issues have had surgery to help.              My first AN was in 2001.        There was no word of anyone on the internet of a normal life again.             I was a basket case with fear.  
I had surgery and in time was back to very close to normal.       I am now a retired RN but was back to work in 2 mos.          I had facial paralysis for 3 1/2 mos.        No one ever made me feel bad for it.     Of coure I was not happy over having it.           In 2003 there was a small AN found on my other side which makes me have NF2.   I  had a facial neuroma develop on thesame side as my first surgery.      I had surgery in 2006 and even a CSF leak 2 weeks later and more surgery.          A nerve graft from by my ear was done and this took longer but I got back to some face movement and the face is ok at rest.       Back to work again in 2 mos.   In time the tumor on the other side started growing and I was becoming close to all deaf.    Very scary time!           I did retire from nursing and had surgery again and unusually lucky that the hearing improved. No cochlear imnplant needed.     I have stayed retireed as am now 57 and do have some balance issues which bother the most outside.        I do have a  normal life and you have to really pay atention to me under the circumstances which bother me to know I have some issues.     I have no balances nerves now.    Haven't done too bad even with that.                    Everyone so varies with this.      I have been lucky and never had any dizziness,headaches, facial numbness.            You do need some recovery time from the surgery.  Part of how you do depends on tumor location,size and the surgeons experience.                 I am not the typical AN patient but feel very grateful that I have been able to enjoy life and my 2 little grandaughters as I do.  
        How one adjusts to this depends on ones personality as we are all different in how we view all that goes on in life.    To see the 200 or so of us at the recent symposium, you could hardly tell who has had treatment and those who hadn't yet among most of us.               The people with the most long term issues are on the forum as it helps to know others with the same issues.
             Good luck with your AN journey.  We understand it is not easy but there is hope,                        Cheryl R
Right mid fossa 11-01-01
  left tumor found 5-03,so have NF2
  trans lab for right facial nerve tumor
  with nerve graft 3-23-06
   CSF leak revision surgery 4-07-06
   left mid fossa 4-17-08
   near deaf on left before surgery
   with hearing much improved .
    Univ of Iowa for all care

leapyrtwins

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Re: Denial?
« Reply #16 on: September 05, 2009, 12:04:37 pm »
Very well written, Cheryl R and some wonderful points  :)

Marla, keep in mind that you are truly stronger than you think you are.  And you WILL get through this.

Fear, shock, denial, and anxiety are generally the first stages most of us experienced.  None of us relished the idea of an acoustic neuroma or having to make a treatment choice, but in the end we did what we had to do. 

You will find that educating yourself goes a long way - so read everything you can (the ANA has some wonderful brochures you can request), ask all the questions you can think of, consult with as many doctors as you need to in order to find one you are confident in and feel comfortable with, and then take that big step (aka treatment).

As Phyl mentioned, going with your gut is often a great way to make your decision - after all the educating.  It's how I ultimately made my choice.  In the end you'll know what's right for you.

Best,

Jan
Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

Jim Scott

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Re: Denial?
« Reply #17 on: September 05, 2009, 12:26:13 pm »
Thank you all for your comments...I don't know if you looked but I have been skulking around this site for about two months, so many of you have posted many times, I feel honored that you took the time to write to me...

It's our pleasure, Marla.

Quote
Sometimes I feel like that is me wimping out, and then I feel like I can suck it up and deal with whatever the outcome is...then I talk to people on this site who are literally disabled from their surgery, either physically or emotionally, and I wonder how I would survive that way, and what quality would my life be.

I don't mean to sound melodramatic, but I haven't seen this conversation anywhere, and I don't know what the answer is.

Neither does anyone else.  

Opting to undergo necessary brain surgery is certainly a momentous decision but one that only the affected individual can make....and of course, none of us can predict the future or know in advance how we would handle facial paralysis, excruciating headaches or other post-op complications.  I sure didn't.  I was fortunate in one respect because my neurosurgeon was alarmed at the size of my tumor (4.5 cm, closer to 5 cm when exposed during the surgery) and I underwent surgery within a few short weeks of my diagnosis.  Had a complication not arose, I would have had the surgery within 10 days of my diagnosis.  Still, I didn't have a lot of time to fret and ponder the possible negative consequences of the operation, although my internet research showed me that facial immobility, headaches and other issues could be something I would have to deal with, post-op.  Naturally, this concerned me, just as it concerns you.  I expressed these concerns to my neurosurgeon and he assured me that "his AN surgery patients didn't get post-op headaches".  The doctor explained that he used a procedure that avoided bone dust - the usual cause of post-op headaches - getting near the nerves that would be exposed.  He also opted to perform a partial resection of the AN (he called it 'debulking') intended to cut off it's blood supply and reduce it enough to be radiated and "finish it off".  This approach would reduce the likelihood of facial nerves being excessively disturbed, which can lead to facial paralysis.  The surgery went splendidly and my recovery was fairly rapid.  I underwent 26 FSR treatments 3 months later (under the joint supervision of my neurosurgeon and a very talented radiation oncologist he worked with).  The radiation treatments (about 40 minutes each) were uneventful - I drove to and from the sessions, a 60-mile round trip, every day.  No facial paralysis or headaches and now, over three years later, I'm fine.  Oh, I'm still SSD, my balance isn't exactly 100% but basically, I'm good - and very grateful  for my successful recovery.  I sincerely wish the same outcome for every AN patient.

For me, reading the messages from post-op AN patients struggling with facial issues and/or headaches, vertigo, etc is a daily reminder that not every AN surgery comes out well and some AN patients have a long, hard road back to normalcy or something that approximates normalcy for them.   While my heart goes out to these good people and I try to offer encouragement to them, I sometimes wonder how well I would have dealt with these problems.  I believe that I would have been O.K. (but not especially happy) because I would have gone into surgery knowing they were a possibility and I would have done everything in my (albeit, limited) power to avoid them, as I did.  Most folks with post-op issues surmount them, eventually, and time really does heal, as some of our member's photos demonstrate quite clearly.   AN surgery has progressed quite a bit and I believe there are fewer cases of post-op complications than was once the norm.  

Still, it is a risk - but one that thousands have taken - with successful outcomes.  How you would deal with these is an unknown, as much to you as it is to me.  I believe that adversity brings out our character and that's obvious by the kinds of triumphant attitudes we see in the messages from post-op AN patients struggling with their facial immobility or other vexing issues but savoring small victories and looking ahead to better days.  I love these folks and remain an active, working member of the ANA site and it's forums to help and encourage anyone who is facing AN surgery with foreboding or struggling with post-op (or post-radiation) issues.  

Frankly, because AN surgery has a lot of 'unknowns' (regarding outcome and possible complications) it's relatively easy to convince yourself that it's too scary to even contemplate and that ignoring the AN is the easy way out.  I submit that is a fallacy.  The tumor will very likely continue to grow causing you more and more problems and definitely affecting your quality of life in very adverse ways.  As any doctor can attest, left completely unchecked, an acoustic neuroma has the potential to be fatal, as it can intrude on the brainstem to the point where life-critical functions, such as breathing, can be stopped.  At the time of my diagnosis, my large AN had pushed hard against my brainstem and was , in my doctor's words, becoming "life-threatening" - if not addressed, soon.  He wasn't making idle conversation.  This was the reason he was very anxious to remove (reduce) the tumor.  Once he did, my symptoms, (SSD, extreme lethargy, loss of taste sensation, dizziness, stabbing pains at the AN site), disappeared.  The SSD remained because the hearing nerve had been severely compromised for so long (years) that it had been rendered inoperative and beyond saving.

Of course you're scared of the serious surgery AN removal entails and the specter of post-op facial paralysis and other issues can be daunting.  I think everyone reading this thread can relate to that.  However, I know that we all hope that fear will not be allowed to control you to the point where you are unable to move forward and have the tumor addressed.  Courage is not the absence of fear but having the fear and going ahead, anyway.  We can only encourage you to find that courage and we can admit that doing so is a real challenge.  I believe you can meet the challenge and do what has to be done to deal with this unwelcome intruder called an acoustic neuroma.  Some of our members have excellent outcomes and are driving, working and even doing pretty strenuous physical activities within a few months or even weeks of their surgery.  I'm retirement age and did quite well after both surgery and radiation.  I think the odds of you doing well, too, are good but the decision to act remains in your hands.  You'll have many supporters here as you move ahead with surgery and we'll be sending up prayers and offering you good vibes all the way.  Still, the next step is up to you.  We can only encourage and support - and we guarantee to do that.  Please try to surmount your fears and take control of the situation, knowing we're with you.  :)

Jim  
« Last Edit: September 06, 2009, 03:53:06 pm by Jim Scott »
4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

qoatip

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Re: Denial?
« Reply #18 on: September 05, 2009, 02:02:16 pm »
Thank you Jim, for your kindness and support...I really appreciate your words (of wisdom) and experience....thank you for not judging me...

Marla B.
2.5 cm AN diagnosed 6/09
Surgery at Virginia Mason, Seattle 2/10/10

sgerrard

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Re: Denial?
« Reply #19 on: September 05, 2009, 10:02:45 pm »
Hi Marla,

I could add another comment, but I think Jim has said most of it quite eloquently. So I will post a picture instead, to cheer you up.  :)



Many more photos from the Chicago Symposium can be seen in this topic:

http://anausa.org/forum/index.php?topic=10294.0

As Dr. John Tew said as he made his way up to the podium for his speech, "you all look great!" He may have been tempted to quote Billy Crystal and say "you look marvelous." The fact is, despite the risks, life after AN treatment can be good, and sometimes it is just plain great. Several of the people pictured above had big tumors and serious side effects, but it sure hasn't stopped them from enjoying life.

So do the best you can to get a good outcome, and then make the best of it. You will always be able to enjoy friendship, fun, and the things that really matter. Welcome to the forum.

Steve
8 mm left AN June 2007,  CK at Stanford Sept 2007.
Hearing lasted a while, but left side is deaf now.
Right side is weak too. Life is quiet.

Patti UT

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Re: Denial?
« Reply #20 on: September 10, 2009, 08:08:05 pm »
HI Marla,
  I am so sorry to see you wrestling with the decision of what to do.  I have been doing the same dance for the last 2 months.  My problem is, I've been through it once already and know somewhat of what to expect.  I'm telling myself it won't be as bad the second time.  But know this,  every on, and wevery outcome is different.  And certainly, the "alternative" is not an option.  When I got my first diagnosis I never once thought about doing nothing, because I had 2 small kids to finish raising.  so the "alternative" was not an option.  Now that I know first hand what some of the post op stuff can be, I still know that I have much to hang around here for, so leetting the darned thing grow and wait for it to take it's toll jsut isn't an option.  One can watch and wait, but when it is actively growing (mine is) you can't be in denial.  Trust me, I have gone into that mode off & on oer the last couple months wishing it was not so.  You sound like a strong person for others, you are selling yourself short if you think you cannot be strong for yourself.  If not for yourself, be strong for thoes who are close to you and love you and need you to be here, even if it is with a crooked or even without a smile. I was fortunate the first time and my facial paralysis was only for about 4 months and mostly came back. Now,  I am facing the same possibility as you,  but liike so many on this fourm, if I wake up without a smile, life will go on. I will get to watch my daughters get married, and have my grandkids etc. Maybe the family pictures will look differently, but at least I will be in them. ;D   So as you put it,  we both need to "suck it up" and do what we need to do.  I post again when I have quite my procrastinating and pick a date ;)

patti ut.
2cm Rt side  middle fossa  at University of Utah 9/29/04.
rt side deafness, dry eye, no taste, balance & congintive issues, headaches galore
7/9/09 diganosed with recurrent AN. Translab Jan 13 2010  Happy New Year

sreda

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Re: Denial?
« Reply #21 on: September 20, 2009, 12:18:46 pm »
There are some good, practical, and empathetic replies here. I would agree with the comments that everyone's outcome can vary from everyone else's; that you have to look at all the options possible for you; and then ultimately make decisions about how to deal with AN. I took three months to do my own research, talk to other patients, and decide what was right for me. I ended up traveling from SC to LosAngeles and had my surgery/AN removal at House. I just wanted the most and best experience with this specific problem possible, and House seemed to fit the bill. I know there are other centers that are said to be equally as experienced. I would do it all over again, and I did have to overcome the very real fears I had prior to surgery about risks, how they would be cutting into my skull, and how I may be afterwrard, etc. And those fears are valid. But they were not as strong as the fears I had about what the long-term problems might be if I did not get rid of the tumor.

Everything that led up to the surgery was empowering for me: weighing 2 doctors' opinions and forming my own, doing the research on my own behalf, and ultimately making the decision with only MY best interests in mind.   

This was a very "BIG DEAL" surgery to me. And it seems to be so for most of you who post here. I considered it brain surgery (and the neurosurgeon called it that) even tho technically the only direct brain involvement was that they had to retract the brain a bit so they could keep it out of the way during sugery. But some members of my family roll their eyes or smile a bit when I have used the term: they think I am exaggerating the seriousness of it all.  Anyone want to give me a good reasonable comeback for that?


Sis
Left side 4mm AN removed middle fossa 8/2004 at House by Drs. Brackmann and Hitselberger. 48 yrs. old

Jim Scott

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Re: Denial?
« Reply #22 on: September 20, 2009, 02:24:12 pm »
This was a very "BIG DEAL" surgery to me. And it seems to be so for most of you who post here. I considered it brain surgery (and the neurosurgeon called it that) even tho technically the only direct brain involvement was that they had to retract the brain a bit so they could keep it out of the way during surgery. But some members of my family roll their eyes or smile a bit when I have used the term: they think I am exaggerating the seriousness of it all.  Anyone want to give me a good reasonable comeback for that?

Sreda ~

Unfortunately, it's easy to make light of something you haven't had to deal with.  Frankly, I think your family members are being insensitive but since you can't just exchange them for more sensitive types, I would make it clear - succinctly or with a detailed explanation - that to address your tumor, the surgeon had to cut open your skull and expose your brain, then move it - which is an extremely delicate undertaking.  Any doctor will attest that AN removal surgery is considered very serious and can take as long as 12 to 16 hours (although the average is closer to eight).  The area the surgeon works on is very sensitive (lots of crucial nerves are involved) and a mistake on his part can have devastating long-term consequences.   If all else fails, I believe there are photos, perhaps even video, online, that follow AN surgery.  Not for the squeamish but good for those who want to pretend that AN surgery is 'no big deal' - and need to face reality.   

I'm pleased to learn that your 'AN experience' was empowering.  You give the distinct impression of having enjoyed a good recovery.  If so, that may be why your family doesn't look upon your AN surgery as 'serious'.  They are as wrong as wrong can be. 

Jim
4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

sreda

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Re: Denial?
« Reply #23 on: September 20, 2009, 03:17:55 pm »
Hey, Jim -
thanks for the "ammo."  :) The subject rarely comes up any more (the surgery) b/cause it's been 5 years and also, as you suggested, because I don't dwell on it too much with myself or in the family. (and because i had worse things happen in the interim and survived those just fine, too). I do count myself extremely fortunate to have had a good outcome, to have had access to great doctors/surgeons, to have had help dealing with the relatively minor negatives that did remain after the surgery; and to be able to be able to put those negatives into perspective (much decline in hearing, continual tinnitus in ear). But next time my sisters and I are comparing "the scars of life" I will use some of your suggestions. :)

So - for anyone contemplating surgery of this type, keep doing your 'homework' and talking to others who had the experience. There is recovery, there is health, there is happiness, and there is understanding to be had from many people. And it can shape your ioutlook n ways that are actually better for you in the long term, as have been described here.
Sis
Left side 4mm AN removed middle fossa 8/2004 at House by Drs. Brackmann and Hitselberger. 48 yrs. old

leapyrtwins

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Re: Denial?
« Reply #24 on: September 20, 2009, 05:19:00 pm »
sreda -

AN surgery is a BIG DEAL - I've been there and done that, so I speak from experience  ;D

AN surgery is also brain surgery - those who say it isn't are mistaken.

Jan
Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

4cm in Pacific Northwest

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Re: Denial?
« Reply #25 on: September 20, 2009, 05:32:01 pm »
Marla,

We had support group meeting, yesterday, for Oregon & Washington States combined- in Portland OR. All the newbies were from Washington State - and they have been without a group for sometime. There is a new leader who has stepped-up-to-the plate and they hope to be up-and-running in the Tacoma area soon. That leader came to our meeting. She is 2 years out from surgery... and to look at her you would never guess she had been through AN surgery.

I wish I had gone to a support group before I made my choice... nevertheless I find these beneficial to go to now. We have seen so many people heal and move forward.

It is important that you not go through this alone. Know that many people in our group had treatment and still have symmetrical faces ... others who don't have facial symmetry-find much support and information for resources of help available.

I suggest you get multiple opinions from experienced doctors and find out what you options are.

I think the worst part was trying to decide "where and who to go with?" .... and figuring out "who is going to look after my kids while I am out-of-comission for awhile?"

2 years out now & it is water under the bridge now ... and my life does go on. I survived... the kids survived (and came out stronger and more mature for it) and I am back doing what I did before my diagnoses.

It is OK to watch and wait providing the tumor is not too big and the brainstem is not involved- as typically these are slow growing. Take the time to gather information and do not let anyone pressure you into a rush decision.

There are many people here to support you on the forum... and from what I concluded yesterday the Washington State ANA people, that attended yesterday, are as great and supportive too.

You are going to get through this. I know I too went through the denial stage... as many of us did. It is frightening to learn you have a "brain booger"... many of us have been there and it is ok to talk to us about that.

HUG

DHM
« Last Edit: September 20, 2009, 08:01:13 pm by 4cm in Pacific Northwest »
4cm Left, 08/22/07 R/S 11+ hr surgery Stanford U, Dr. Robert Jackler, Dr. Griffith Harsh, Canadian fellow Assist. Dr. Sumit Agrawal. SSD, 3/6 on HB facial scale, stick-on-eyeweight worked, 95% eye function@ 6 months. In neuromuscular facial retraining. Balance regained! Recent MRI -tumor receded!

ghenier27

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Re: Denial?
« Reply #26 on: November 16, 2009, 10:46:13 am »
Hi Newbie, I was alot like you. I found about my an in May and was supposed to have surgery August 17th but ran into a problem on the or table and couldn't continue. After, figuring out that I was ok'd by the doctors at Shands Teaching Hosptial in Gainesville,Florida. I had my surgery October the 19th and I am begining my 4th week of recovery. I had a miracle, my tumor was left side 1.6 cm by .07 cm . I was in the hosptial only 4 days. I was walking my dogs 4 days after going home. Driving my car at the end of the second week to the store and using those electic carts to do my shopping. In the begining of my 3rd week, I was walking 4 blocks twice a day with my dogs. I don't have facial weakness nor headaches. I still have a little swelling but no hair shaved and my scar is about 12 inches and isn't noticeable. I don 't  have thick hair either. I should really be the poster person for the surgery.

There are others on this site who have had their own miracles. Every surgery is different, everyone heals differently. Don't make a decision solely based on reading peoples recovery stories. Do the reseach and meet with the doctor who do the surgery and radation. Then weight out your choices and then make a decision that would be right for you. I met with the doctors, did a tons of reseach online and made the decision for myself. I am very happy with my decision. Good luck and may God Bless You, Debi

patdel

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Re: Denial?
« Reply #27 on: November 16, 2009, 11:21:37 am »
I also was diagnosed in June and am in the W&W mode. I often think I am in denial too because I keep thinking it will be gone when I have another MRI or at least is shirinking! Guess that is denial but I am doing research, research, research.  I am also scared to death of surgery and am looking into radiation.  Either way we go, there are risks involved.  Right now, I am sitting tight untiil January and hope I will have a plan when I get the results of the next MRI. It actually seems surreal sometimes, doesn't it? Me, who have never been sick in her life, has a brain tumor!! Hang in there!!

Pat D.
Pat