Author Topic: New AN'er  (Read 4802 times)

AJ

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New AN'er
« on: March 29, 2008, 06:56:23 pm »
Hi everyone!  My name is Annette.  I was just diagnosed with a right AN.  I have to say this discussion board has already been a tremendous help for me.  I just got off the phone with another newbie, MaryBKAriz.  Quite coincidentally we were diagnosed on the same day by the same doctor and we live just minutes apart.  As I told Mary, I am doing my best to keep positive.  I gave myself some time to cry and to be angry, but now it's time to roll up my sleeves and fight this little booger.  I'm pretty sure I have ruled out open surgery.  The thought of having my skull cut open terrifies me to no end.  I'm meeting with the doc soon, probably next week to discuss CK and GK.  If you all can give me some heads up on questions I should ask I would really appreciate it.  I have a list of questions already, but I'm sure I haven't thought of everything, so that's where my fellow ANers come in!

A little about myself:  I'm 43, married with two teenagers.  My symptoms are farily mild.  I say that because they have not affected my quality of life, yet they are definitely letting me know they are there.  I have slight fullness in my right ear, a bit dizzy but the spells are very short and infrequent, my balance is really off, although I have not fallen nor run into walls, yet.  My AN is just under an inch in size (not sure the cm size, but I'm going to find out) and it has grown out of the canal and is pushing on the brain stem.  I still have very good hearing in my AN ear and I have no facial nerve problems.  I welcome ALL comments and suggestions as I am trying to educate myself as much as possible about AN and it's treatments. 

Thanks in advance, you're all a great group of people, I can tell from reading your posts and replies!!    ;D
2.5cm AN diagnosed 3/25/08 Barrow Neurological Institute, Phoenix, AZ
Some hearling loss in right AN ear.
Slight Tinnitus and slight imbalance.
CK scheduled for May 28th! Woohoo!

leapyrtwins

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Re: New AN'er
« Reply #1 on: March 29, 2008, 07:13:17 pm »
Hi AJ and welcome -

I think it's amazing that you and Mary live so close together, are seeing the same doctor, etc.   You're sure to be a big help to each other.

I can't really give you any suggestions for questions to ask the doc about radiation - I chose surgery - but I just wanted to say good luck in making your treatment decision.  Sometimes it's one of the hardest parts of having an AN. 

Keep positive and best of luck,

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

Denisex2boys

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Re: New AN'er
« Reply #2 on: March 29, 2008, 08:30:33 pm »
Hi Annette - I was diagnosed almost a year ago - I do not have balance issues but also have the fullness (thank goodness that kinda went away after 4-5 months) comes back sometimes, I have a good amount of hearing loss and some tingling.  I just turned 44 and am awaiting surgery.  I am on MSN - look at my profile - if you want realtime chat.   It is a scary time - but the people here are absolutely AWESOME!
- Oct. 16/08 - 12 hour 'blob-ectomy' at LHSC in London, ON - Dr. Lownie and Parnes
- Some internal facial numbness (cheek, tongue, eye), SSD, headaches (getting better), dry eye, some balance issues..... but othwise AWESOME!

sgerrard

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Re: New AN'er
« Reply #3 on: March 30, 2008, 12:31:55 pm »
Hi Annette,

Questions on GK and CK? Unless you are interested in all the technical details, the main ones to ask are the ones that you care about, or that would influence your decision about treatment. Maybe things like:

  Will this work for me?
  What are my chances of keeping my hearing?
  What are my chances of avoiding facial nerve issues?
  How will this affect my balance?
  How long will it take to know if this worked?
  Will I have swelling afterwards, and for how long?
  How risky is this? What is the worst that could happen?
  Why should I choose radiation instead of surgery?

Say Hi to your neighbor Mary for me.  :)

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.

calimama

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Re: New AN'er
« Reply #4 on: March 30, 2008, 01:55:49 pm »
HI Annette...
and welcome!
I was diagnosed about 6 weeks ago. There has been a steep learning curve! I am so thankful for the internet and the people who share their experiences and insights vis this site and others.

I just had my first GK/LINAC consultation last week. Luckily the doctors told me to come back if i had more questions, as new ones seem to pop up by the hour. We don't have CK here in Canada (i am in Toronto), but hopefully one of the two that we have will be good for me. Like you, I am also hoping for a way around surgery. I did met a great surgeon last week at my consult, and will another 2 at separate appts this week. I think the surgeon that i have been referred to (for surgery!, rather than rads) is one of the best in Canada, so it is tempting to take advantage of access to a great doctor to get this treated, but in my case my AN is med-large (2.2x2.9cm) so i am afraid that the likelihood of a good surgical outsome are limited. I will know more hopefully by the end of this week!
 
For me big issues that i want to question further relate to which of the two rad options is best for ME, given my AN's size, location, and shape. I am hoping to keep my hearing (i have lost about 25-30%) which i feel is a little greedy, but i know there is a good chance it will go with rad (and a given with translab surgery). I am a bit concerned about swelling as my AN has "mass effect" on the brain stem (no symptoms yet), so this will be part of my questioning. Also, which is likely to be more successful for ME (again, the stats out there are helpful, but i think the key is to get the best info relative to your situation). And which will be less "toxic" to surrounding tissues (particularly given the brainstem issue), both in the short and long term.
Anyway, i am sure you will have a ton of question before too long. Good luck on your journey and let us know how you go.

Left 2.9cm CP Angle AN discovered Jan 2008. Retrosig surgery June 2, 2008 Toronto, Canada. Facial paralysis and numbness, double vision (4th nerve), SSD. DV totally recovered in 4th month; palsy started to recover slowly around month 7. Had twin boys 13 months after surgery. Doing great.

jtd71465

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Re: New AN'er
« Reply #5 on: March 30, 2008, 02:33:33 pm »
Just got back from my 3.0 mile run and as soon as the five year old gets home it's going to the park to play tennis with the whoe family (wife and 8 year old). 

What I'm trying to say is that surgery doesn't mean the end of life as we know it....I had retro on 1/10/2007 and had a great outcome.  I know surgery can be overwhelming but be certain that positive results do exists.

I'm open to discuss, just send me a PM with contact information.


Good luck,


Joe-
Right side AN removed 1/10/07 @ NYU Medical Center
Dr's Roland and Golfinos

Jim Scott

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Re: New AN'er
« Reply #6 on: March 30, 2008, 02:43:09 pm »
Hi, Annette:

Welcome to the forum.  I trust it'll remain a source of information and encouragement for you as you proceed on your 'AN journey'. 

Radiation is a very sensible option for someone with a small AN.  It is non-invasive and avoids hospitalization, the chance for infection and other surgery-related risks.  However, radiation is not risk-free and complications can still arise, including facial nerve damage.  Your goal will be to choose a radiation oncologist with experience  treating acoustic neuromas.  Although no doctor can absolutely guarantee the outcome of a GK/CK procedure (or surgery, for that matter).  They can only offer you their experience and give you 'odds' for success in any given area, such as hearing preservation.  Some doctors are hesitant to perform radiation on patients that are still fairly young, as it precludes the patient from receiving radiation treatment later in life, even though a condition such as cancer could make radiation the only option.  There is a strict limit on how much radiation the body can safely absorb without endangering the patients health and life, so doctors can get fussy about radiation.  However, many folks on this forum within your age bracket have undergone Cyber Knife or Gamma Knife procedures, so I doubt your relative youth will be an obstacle to receiving radiation treatment for your AN.   

If it happens that radiation is not an option, I think the location of your AN will be the reason.  It's proximity to the brainstem is problematic but a physician can clarify this issue for you better than I can, so I'll leave it to the medical professionals to make those judgments and explain your options.  If surgery becomes necessary (due to the location of the tumor) it isn't quite as scary as it sounds.   Many of the posters on this forum have undergone microsurgery and not only lived to tell about it but have recovered nicely and gone on with their lives, pretty much as before.  I'm one of them.  Check my 'signature' at the bottom of this post for details.

We can empathize with your feelings Annette because most of us either are or have been where you are now.  Newly diagnosed, scared, mad and then, determined to fight this thing.  The good news is that an acoustic neuroma isn't malignant and is treatable.  You have options - and you have good reason to be hopeful and positive.  You can get through this.  We're here to help, be it with advice, suggestions, information or simply encouragement and to let you vent (you probably will need to at some point...we all do) so feel free to post a question or just keep us informed as your time permits.  We wish you better days ahead.  :)

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.

LADavid

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Re: New AN'er
« Reply #7 on: March 30, 2008, 03:28:00 pm »
Hi Annette
You found a good place here with a lot of kind, knowlegable and caring people.  I can't really add anything to the radiation discussion.  I had a translab.  And since I just finished a novel on another thread, I won't go into it again except to say, if a translab is the route you end up choosing, I will be glad to share my experiences with you.  My decision was based on the size of the AN (small for a translab, big for radiation) and my age.  I knew I would be facing other medical issues as I got older -- I just didn't want to have one more to deal with and I wanted to get it over with.

My best to you.
David
Right ear tinnitus w/80% hearing loss 1985.
Left ear 40% hearing loss 8/07.
1.5 CM Translab Rt ear.
Sort of quiet around here.
http://my.calendars.net/AN_Treatments

leapyrtwins

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Re: New AN'er
« Reply #8 on: March 30, 2008, 04:10:37 pm »
Just got back from my 3.0 mile run and as soon as the five year old gets home it's going to the park to play tennis with the whoe family (wife and 8 year old). 

What I'm trying to say is that surgery doesn't mean the end of life as we know it....I had retro on 1/10/2007 and had a great outcome.  I know surgery can be overwhelming but be certain that positive results do exists.


Okay, I didn't just get back from a 3 mile or even a 3 block run, but I did ride my stationary bike 12 miles this morning.  Does that count  ???  LOL

I just want to agree with what Joe said - surgery doesn't mean the end of life as we know it and positive results do exist; I'm one of those positive results, too.

Some choose radiation, some choose surgery.  It's a personal choice; choose what is right for you.

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

robynabc

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Re: New AN'er
« Reply #9 on: March 30, 2008, 05:35:36 pm »
Absolutely Jim,

Jim was a huge help for us in our deciision making process last year.  He and my son had almost the same size tumor and both had good results.  Eric fortunately did not have to have radiation.  But I agree Eric is practically the same as before with just a couple of annoyances.  Meaning the hearing, he got used to that quickly.  And the coughing is a pain but the doctors assure him that the chances of all that working itself out is very high.  And best of all that huge thing is out of there.  The fact that yours is smaller is even a bigger plus. And with the brainstem issue if you have to surgery that will be good.  Your chances with surgery is very good.  But, and yes I know I am a broken record,  DO NOT SETTLE FOR ANYTHING LESS THAN THE BEST DOCTOR.

Sending Sunshine.

Robyn
18 yr Son 4.5+ CM AN  surgery 6-27-07 at CU in Denver.Drs Lillihei and Jenkins. Complete removal on facial nerve with no paralysis at all. Paralized vocal cord that is causing swallowing & voice issues.  SSD. Went to a movie theater 11 days after surgery. Great Doctors!! That is most important.

Dan

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Re: New AN'er
« Reply #10 on: March 31, 2008, 01:41:30 am »
Hi Annette,
I just saw your post, sorry you had to join us.  Here in Germany we use only the metric system, but I know 1 inch is (2.54cm) so you probably have a medium size AN.
You have come to the right place to look for help and ask questions, I find it very comforting to be able to talk or write to someone that is in the same situation as I was. 

Dan in Germany 
US Army Retired, age 51,  residing and working in Germany.
Retrosigmoid 21 Sept 07 left side 1.76cm AN, Prof. Mann, Uniklinik Mainz Germany

Kaybo

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Re: New AN'er
« Reply #11 on: March 31, 2008, 06:24:09 am »
welcome annette~
a little tired right now as i just had some surgery myself -- hope i can be of help to you -- have 'talked' w/mary (glad y'all have each other!).  check out my blog...
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!

calimama

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Re: New AN'er
« Reply #12 on: March 31, 2008, 06:45:17 am »
Kaybo,

I just had a quick (and possibility silly) question about your eye on the AN side.

Your signature indicates that you have no movement in your affected eye. Does this mean that your eyeball does not move (like a stare?) or it is only the eyelid that is problematic. Can you see out of the affected eye?

I think you were having some surgery to help bring movement back to your AN side...? How did this go?

Wishing you well.

Thank you for sharing.
Left 2.9cm CP Angle AN discovered Jan 2008. Retrosig surgery June 2, 2008 Toronto, Canada. Facial paralysis and numbness, double vision (4th nerve), SSD. DV totally recovered in 4th month; palsy started to recover slowly around month 7. Had twin boys 13 months after surgery. Doing great.

Debbi

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Re: New AN'er
« Reply #13 on: March 31, 2008, 09:20:04 am »
Hi Annette-

And, welcome to our little club.  You are doing all the right things - learn, talk to experts, gather information.  I was diagnosed 4 weeks ago (see signature for details) and am now scheduled for translab surgery at NYU on April 30. 

I know this is really scary, but just take it one step at a time.  I went into major overload a few times in the first few weeks - I think that is pretty normal.  However, now I feel as well prepared as I can be for whatever lies ahead.  You will find tons of support on this forum - don't hesitate to visit often, ask questions, talk to people. 

It is a huge comfort to be able to connect with other people who know exactly how you feel.

Let us know how your consults go - and don't hesitate to ask questions!

Debbi - busy making plans in NJ
Debbi - diagnosed March 4, 2008 
2.4 cm Right Side AN
Translab April 30, 2008 at NYU with Drs. Golfinos and Roland
SSD Right ear, Mild synkinesis and facial nerve damage
BAHA "installed" Feb 2011 by Dr. Cosetti @ NYU

http://debsanadventure.blogspot.com

calimama

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Re: New AN'er
« Reply #14 on: March 31, 2008, 11:21:05 am »
Debbi -

Great to hear you got your date. You must be relieved!

I am meeting with radiation team number 2 tomorrow to get the rest of my questions answered. Then on Friday with the surgeon who i was recommended to.

I am glad to say that spring seems to have arrived in chilly Toronto!

Left 2.9cm CP Angle AN discovered Jan 2008. Retrosig surgery June 2, 2008 Toronto, Canada. Facial paralysis and numbness, double vision (4th nerve), SSD. DV totally recovered in 4th month; palsy started to recover slowly around month 7. Had twin boys 13 months after surgery. Doing great.