Author Topic: AN growing and now what? CONFUSED  (Read 7547 times)

Nancy Drew

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AN growing and now what? CONFUSED
« on: May 31, 2008, 02:56:11 pm »
AN diagnosed 2005.  Small 4mm x 5mm.  Recent MRI showed 1mm in growth this past year.  Also some slight hearing loss, and I think there are balance issues (I  just thought I am clumsy).  Dr. suggested gamma knife.  He said he would take my case to his next conference in two weeks and get an opinion which has some of the best AN doctors in the Denver area.  Happy that he suggested this so I know that he is not rushing or pushing anything on me.  I have pretty much decided that I do not want to do the surgery.  I have been reading about GK, and I have heard that the docs here are good at it.  I just started to read about CK, and I think Denver just recently opened up a center here.  I am more confused than ever.  When do you know what is RIGHT FOR YOU?  I know I have time on my side, but I am also driving myself crazy.  There are so many pros and cons to every type of treatment.  I just find myself in tears and wanting to scream.  I didn't think I would ever have to make a decision like this since my AN was found by accident.  Just thought it would never grow.  But, the hearing issue is really beginning to bother me, and I want to save what hearing I have if at all possible.  I am 49 years old, and the doctor seems to think it will continue to grow and issues will arise as it grows.  Freaking out . . . . . .  Any thoughts from you on where to go from here.  Thanks in advance for any replies. 

Nancy Drew
12/05 AN diagnosed left ear 4.5mm
06/08 6mm
Gamma Knife 10/21/08
1 year MRI  6.8mm x 5.5mm
2 year MRI  5.9mm x 4.9mm
3 year MRI  6.5mm x 6.0mm 
Slight Hearing Loss Post GK

Swedish Gamma Knife Center
Englewood, CO
Dr. Robert Feehs

Kaybo

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Re: AN growing and now what? CONFUSED
« Reply #1 on: May 31, 2008, 03:09:58 pm »
Nancy Drew~
I know that it is hard when things don't go as you have planned, but this is something that may change things a bit but is VERY treatable.  You WILL get thru this!!  I can't tell you anything about GK or CK (even though I am a "K"  :D)...but I know that you will get some good advice from the others!

K
Translab 12/95@Houston Methodist(Baylor College of Medicine)for "HUGE" tumor-no size specified
25 yrs then-14 hour surgery-stroke
12/7 Graft 1/97
Gold Weight x 5
SSD
Facial Paralysis-R(no movement or feelings in face,mouth,eye)
T3-3/08
Great life!

er

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Re: AN growing and now what? CONFUSED
« Reply #2 on: May 31, 2008, 03:51:40 pm »
Nancy Drew,
 
I really hope that things turn out ok. Keep asking questions. There are some people here that have gone through different types of solutions. and maybe they can help you in your dilemma. My self I know I am still healing. It has been slow but with good outcomes. I wish I wouldn't have had any side effects but I did. I do know mine was growing and it wasn't the balance or the lose of hearing that was bothering me but that there was a lot of pressure in my ear that I wanted it out and I would do it again. 
I think it really freaked us all out, you wouldn’t be human if there wasn’t any feeling.
eve

sgerrard

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Re: AN growing and now what? CONFUSED
« Reply #3 on: May 31, 2008, 06:12:00 pm »
Hi Nancy,

For all I know, I am helping to confuse you. Sorry about that if I am.  ???

4 x 5 (now 5 x 6?) is a small AN, so watch and wait is one option. Gammaknife or Cyberknife now, to save the hearing before it goes too far, is another option. GK and CK are almost the same for treating an AN; CK is slightly better for preserving hearing, and easier on the head.

I finally laid out my whole story in another topic (http://anausa.org/forum/index.php?topic=3929.msg64193#msg64193). You can read that to see how I decided while doodling during a boring meeting at work. I think you just gather some info, get some opinions - more than one is good, but don't get too many - and then one day it all kind of settles in your mind and you know what you are going to do.

I know it is frustrating, but it is a big enough decision that it is worth taking some time to make it, even if that means being anxious about it in the meantime. It seems strange that we patients, who start out knowing almost nothing about ANs, end up having to make a major medical decision for ourselves, but that's the way it works. In the end that is a good thing, since we are the ones who will be living with the outcome.

Don't pressure yourself to decide. If it isn't clear in your mind, wait some more and read some more. Bit by bit it will become clear to you what is right for you and your case. And don't forget to continue living your life every day; this is just a bump in the road, which you will get past when the time comes.

Take care and be patient,

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.

Jackie

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Re: AN growing and now what? CONFUSED
« Reply #4 on: May 31, 2008, 07:47:24 pm »
Hello Nancy Drew,

Like you I was diagnosed with an AN but mine is 9x11. I have done alot of research and have had the emotional ups and downs with trying to come to a decision! Yours is quite small, so you do have time to continue to evaluate what you feel is right for you. Steve gave you excellent advice! Don't be in a hurry! You will know when it "feels right for you". As time passes more and more research is being done to improve the quality of the procedures. I have been monitoring for almost a year and a half. I have my next MRI in July to see if there has been any change in hearing or size. It's hard to be patient, but I don't ever want to have regrets, of being hasty and living with consequences that are less desireable than with what I have now, ie, 60% loss of hearing, and tinnitis.  I wish you luck in your decision making process!
Jackie
9mm x 11mm Right Side AN mild Tinnitis, and 60% hearing loss
Diagnosed 02/04/2007
Nov.13th, diagnosed with 5mm Meningioma
9/24/08 diagnosed with Aneurysm
Wait and watch per ENT's advice and researching my options!!! What's next???

leapyrtwins

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Re: AN growing and now what? CONFUSED
« Reply #5 on: June 01, 2008, 03:13:16 pm »
When do you know what is RIGHT FOR YOU? 

Nancy -

IMO you will know what is right for you when you make a decision and you are comfortable with it.  Making the decision is definitely the hard part, but once you investigate your options and talk to the doctor(s) who will possibly be treating you, it gets a little easier.

As others have said, your AN is small, you don't need to rush into a decision.

Relax and take your time.  Try not to be freaked out - lots of things in life are far worse than acoustic neuromas.  As K said "you WILL get through this" - and we will help  :)

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: AN growing and now what? CONFUSED
« Reply #6 on: June 02, 2008, 12:34:19 pm »
Hi, Nancy:

I'm sorry to learn of your confusion and anxiety over the growth of your AN.  It's obvious that you thought it was going to be dormant and so you could live with it...unless it started to grow and produce symptoms that you couldn't live with.  Now it has and you are caught a bit off-guard and so, confused and upset.  No wonder.  I would be too.

All the good advice has already been given so I'll just echo Steve's comment that the growth could be so small as to be insignificant and so, you can still take whatever time you need to analyze your options and make a decision as to how you'll address this medical challenge.  Right now, radiation is likely a viable option and so, one you should look into.  I hope doing so will give you some peace of mind.  Tears may be cathartic but when the crying is over, you have to face this dilemma and make a decision.  I think you're well on the way to doing so, based on your opening post.  I certainly hope that this site and the forums can be of some help to you as you move toward a resolution of this problem.  In light of that, please stay connected because we can't help if we don't know you're 'there' and could use some advice, etc. We want to help in whatever way we can, Nancy.  Please know that.

By the way: how are things in River Heights?  :)

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.

Nancy Drew

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Re: AN growing and now what? CONFUSED
« Reply #7 on: June 03, 2008, 08:36:42 pm »
Gosh you guys sure are nice for replying and expressing your concern and giving support and encouragement.  I have had some time to reflect since seeing my doctor last week.  I do have time on my side so that is a good thing.  My primary care physician said I am in good hands with the AN doctor and after researching him it looks as if he is good at what he does. My gut feeling is going toward the GK, but I will wait for the panel to give their opinion in the meantime.  About three months ago I started volunteering on the oncology unit at The Children's Hospital.  Just came from there today, and it helped me put my life in perspective.  My tumor is benign, and it is not going to kill me.  I am an adult and not a scared and confused little kid who spends a lot of time in the hospital getting chemo and other scary procedures.  But, fortunately a lot of those kids do make it with the advancements that have been made in treating cancer.  We, too, are also benefiting from advancements made in treating ANs.  As for River Heights, Jim,  I hear it is a flourishing town, and they just got a new gamma knife machine at the new hospital! Take care all.  Nancy Drew 
12/05 AN diagnosed left ear 4.5mm
06/08 6mm
Gamma Knife 10/21/08
1 year MRI  6.8mm x 5.5mm
2 year MRI  5.9mm x 4.9mm
3 year MRI  6.5mm x 6.0mm 
Slight Hearing Loss Post GK

Swedish Gamma Knife Center
Englewood, CO
Dr. Robert Feehs

leapyrtwins

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Re: AN growing and now what? CONFUSED
« Reply #8 on: June 03, 2008, 09:34:16 pm »
I am an adult and not a scared and confused little kid who spends a lot of time in the hospital getting chemo and other scary procedures. 

True, but I just wanted to say that it's okay and perfectly understandable to be scared and confused about having an AN even though you are an adult.

I was scared, confused, and frightened when I was diagnosed; I think most patients are.

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

Tamara

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Re: AN growing and now what? CONFUSED
« Reply #9 on: June 04, 2008, 07:29:51 am »
My doctor told me that AN growth is generally 1 mm/year, so I guess you're pretty much on track.  From my perspective (7mm AN, surgery next week), I figured the AN wasn't going to get any smaller and I wasn't going to get any younger, so I may as well deal with it.  Also, the smaller the AN, the less likely you are to have side effects.  This isn't a recommendation to do something as soon as possible, but just the thought that you'll likely have to do something about it at some point.

best wishes
Tamara
7 mm AN left side
translab 6-12-08
postop issues including CSF leak, eye issues, and facial palsy.  All issues resolved at 9 mos. except slight facial palsy & weakness.  Continuing to improve...

sabuck

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Re: AN growing and now what? CONFUSED
« Reply #10 on: June 04, 2008, 07:43:34 am »
Nancy,

There are so many wonderful people as you can tell that provide advice that can only be obtained from folks like us that have been through it. I understand your anxiety and confusion all too well. As everyone has said you have time on your side. Yours is small and you are young enough to recover from any possible treatment. Each person is unique as is their case. Just keep researching and the right thing for you will present itself. I do find the CK interesting and worth researching for someone like you with a small AN. No one mentioned that option to me. Probably because I don't believe that there are any CK facilities in Ohio. Best wishes!
« Last Edit: June 04, 2008, 12:41:21 pm by sabuck »
Approx. AN 2.5 cm prior to surgery on 10/7/07)
(Cerebellopontine Angle Tumor)
The Ohio State University Medical Clinic (Drs. Brad Welling & John McGregor)
SSD post op - left side
BAHA surgery 4/25/08 Dr. Brad Welling 7/3/08 for Baha use!

cmp

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Re: AN growing and now what? CONFUSED
« Reply #11 on: June 04, 2008, 10:13:42 am »
Nancy--

It sounds as though you are right on track, gathering information and starting to incline towards a particular approach. It's great that your doctor has been gathering info himself, that you feel confident in your AN doctor, and that you'll have the benefit of multiple doctors' opinions (without multiple consults!) after the panel reviews your case.

Lots of great advice above; all I have to add is that it's inexplicable but true: After a confusing mix of researching, advice-seeking, agonizing, venting, tossing and turning at night, etc etc etc, the decision that's right for you somehow falls into place and you're ready for the next chapter in the adventure.

How wonderful that you're volunteering in the kids' oncology unit--bet the perspective you gain from the experience makes you an especially caring volunteer... I remember how, in the pre-op room before my '89 surgery, there was a baby sucking on an anesthesia lollipop. That really put my feeling of "aloneness" in perspective!

Please do post again after the panel meets, and good luck...
5 cm AN surgery, Shands Hospital, FL, Dr Albert Rhoton, 1988; VII-XII anastamosis for right-sided facial palsy 1989; diagnosed Feb 2008 w/ 1.8 cm recurrence; drs McKenna & Martuza; surgery rescheduled for 6/24/08!

Nancy Drew

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Re: AN growing and now what? CONFUSED
« Reply #12 on: June 04, 2008, 07:52:15 pm »
Oh, thanks everyone for your support.  You all are inspiring to me.  I will definitely post once I hear from the panel.  I am going to call the doc's office tomorrow to get the specific date his panel meets as I forgot to ask when I was at my appointment.  I was sort of in a state of shock.  Knowing the date of the panel meeting and how and when I will get their feedback should be helpful in easing some of my anxiety.  In the meantime, I am just trying to be as positive as I can.  Nancy
12/05 AN diagnosed left ear 4.5mm
06/08 6mm
Gamma Knife 10/21/08
1 year MRI  6.8mm x 5.5mm
2 year MRI  5.9mm x 4.9mm
3 year MRI  6.5mm x 6.0mm 
Slight Hearing Loss Post GK

Swedish Gamma Knife Center
Englewood, CO
Dr. Robert Feehs

goinbatty

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Re: AN growing and now what? CONFUSED
« Reply #13 on: June 05, 2008, 09:37:26 am »
Hi Nancy,
Sorry to hear you're having a tough time.  I completely understand what you're going through as well as everyone else on the forum.  In my case, the tumor was fairly small but increased in size fairly quickly.  Even though I had minimal symptoms, it got to where I had to take care of it for my sanity.  I can tell you that with the non-stop research adn multiple consults, it did finally get to a point where the treatment option I was leaning toward just felt right.  At that point, I can't tell you what a relief it was just to have the decision over with.  So take your time, research all treatment options, and when it feels right you'll know it. 
Take care,
Sandra
1/2007 - 6 x 4.5 mm AN
8/2007 - 9 x 6 mm
CK at Georgetown 1/7/08-1/11/08; Dr. Gagnon
3/2008 - 10 x 7 mm
7/2008 - 9 x 10 x 6 mm (NECROTIC CENTER!!!!!)
5/2009 - no change/stable
4/2010 - 10 x 7 x 6 mm; stable/no change
5/2011 - 10 x 7; stable/no change
6/2012 - 8.1 x 7 mm
4/2014 - stable/no change

hruss

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Re: AN growing and now what? CONFUSED
« Reply #14 on: June 09, 2008, 03:14:56 pm »
Hi Nancy,

it is awful to hear that you joined this group because of being diagnosed AN, but still I think you can find a lot of suggestions and reach to your own answer.

That was the case with me, too. Actually, I was not scared at all at the beginning (probably because everything happened in an overnight (for the 1st operation)) but after the second one I understood how serious things were and still are for me. I don't want to scare you at all, my situation was totally different from yours.

Just wanted to share that you have time in front of you to take the best decision. And the people in this forum are helpful and supportive. Finding this site is a good step forward for making up you mind! At least it was like that with me!

Good luck and please ask any questions you have!

hrissy
4.5cm right AN pressing on the brain stem, dn Sept 2007
2 Retrosigm surgeries in Oct 2007 and Jan 2008 by the Bulgarian prof. Kyrkeselian partially removed.
3rd retro surgery in Hannover,Germany by prof Samii, Oct 2008. SSD
Got rid of my bugger, temp facial paresis
hrissysexperiences.blogspot.co

 


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