Author Topic: Another year in the Watch and Wait can  (Read 8447 times)

G_Man

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Another year in the Watch and Wait can
« on: July 05, 2012, 11:01:07 am »
Monday I went for my consultation and my hearing test.  The MRI showed that my tumor hasn't grown.  Since I have switched doctors and facilities I expected some minor differences:
New measurements (MM):  5X6X6
Old measurements (MM):    6X8X5
So I consider this to be really good news.  I started watching in Aug 2009.  I know some people say, "I can't understand why anyone would want to watch and wait.  I would get that thing out of my head right away!"  Well most of those people don't have one in their head to worry about.  I'm very lucky that mine is, at least for the time being, sleeping. 
    I have had some increased symptoms.  I'm attributing most of them to the balance nerve dying.  I don't necessarily consider this a bad thing.  As long as my brain catches up with that event it's all good.
    As far as the hearing test is concerned, I've lost a little hearing.  At least that's what the new hearing specialist believes.  Again, since it was done at a different place there is a little doubt.
    My doctor is quite anti-surgery.  This is reassuring to me.  As long as it's not causing me any other great problems I'll be W+W.  At my age I have a lot of life left to live so there is no telling what will happen.  We do both believe that I will eventually lose all my hearing no matter what course I take.  I have constent tinnits now and I'm trying to get used to the idea of being deaf in that ear.  Not easy as you all know.
     Anyway, that's my status.  I haven't been on here in a while and I see (as always) that the board is thriving.  I wish I could keep up with it.  I'm glad so many of my AN brothers and sisters are hear giving great support to the newcomers.  It only seemed like yesterday when I first found the organization.  I've gained great comfort from the organization and all the great members I have interacted with. 
Glen
Diag: 08/11/2009 Left side
AN: 0.6cm.  65% Hearing loss, tinnitus, fullness, minor motion issues.
hearing loss over 25+ years.  MRI in 2000 showed nothing.
Optical Atrophy from infantcy
Watch and Wait.
As of 2017 I am on a 2 year MRI frequency.

Jim Scott

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Re: Another year in the Watch and Wait can
« Reply #1 on: July 05, 2012, 12:27:54 pm »
Glen ~

Thanks for dropping by with a very encouraging update.  Your point that 'watch-and-wait' is a viable option when the AN is small and hasn't caused too many problems is valid and your experience proves it.  I trust that your future MRI scans will be similarly positive in terms of not showing growth.  I also hope you'll be able to visit here a bit more often.  You're always welcome!

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.

pjb

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Re: Another year in the Watch and Wait can
« Reply #2 on: July 06, 2012, 07:51:57 am »
Glen I just wish I would have waited as well my 2 doctors were adamant to have surgery and that is what I chose but going through my post op symptoms along with a piece still there I would have waited as they say the older you are the chances the AN stops growing...I had rushed into it without doing a thorough research about my options along with the team to remove it. Just hope for any newbies to take your time they are slow growing and do tons of research to make the right choice in any decision you choose to make. I thought W & W was not a good idea for me either having to worry about the tumor in my head but now that I end up in this category anyway it is not so bad.

Best Wishes,
Diagnosed with a 1 cm. AN had Retrosigmoid
Approach surgery July of 2009, several problems after surgery.

susierg

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Re: Another year in the Watch and Wait can
« Reply #3 on: July 06, 2012, 09:59:00 am »
Hi Glen,
I've been a W&W'er for 5 years with a tiny 4mm AN in right ear.  I was hoping I would be in W&W for life, but my "little bugger" decided to grow this year.  It's still small (6 mm), but my Docs suggested it's time to intervene.  I'm scheduled for surgery on the 24th of this month for Mid Fossa.  Like you, I have very few symptoms...my tinitus has just recently gotten a little louder, but other than that, not much at all.  My hearing is still excellent and my Docs say there is an excellent chance of keeping it that way.  Anyway, here's to many more years of W&W for you!
4mm AN diagnosed 8/2007.  Watch and wait for 5 years.  5/2012 grew to 7x4x4.
Mid Fossa 7/2012 at MD Anderson, Houston,Tx
SSD but still hoping it will return.

Mickey

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Re: Another year in the Watch and Wait can
« Reply #4 on: July 06, 2012, 11:27:03 am »
Hi Glen! I`m with you good buddy... I continue to follow the code of the W+W brigade and actually have done better than when first diognosed 5 years now. If it was all as easy as pulling a tooth and getting rid of the discomforts it would be a no brainer. To have something done of that magnitude knowing your symptoms will remain if not get worse, I`ll contend to stay and let sleeping ANs hopefully stay that way. Best wishes, Mickey PS hope to see you soon...

pjb

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Re: Another year in the Watch and Wait can
« Reply #5 on: July 07, 2012, 08:43:20 am »
Hi Glen! I`m with you good buddy... I continue to follow the code of the W+W brigade and actually have done better than when first diognosed 5 years now. If it was all as easy as pulling a tooth and getting rid of the discomforts it would be a no brainer. To have something done of that magnitude knowing your symptoms will remain if not get worse, I`ll contend to stay and let sleeping ANs hopefully stay that way. Best wishes, Mickey PS hope to see you soon...

Doesn't bother me to W & W with the small piece left behind just wish I would have known when I had the 1 cm to just let it sleep instead of having all these post op problems .. But everyone is different and the main thing is to make sure you have a great team of doctors no matter what course of treatment they want to do. Glad to be part of the W & W group now will not do anything unless I definitely have to and taking the vitamins as you prescribed...haha....

Best Wishes,
Diagnosed with a 1 cm. AN had Retrosigmoid
Approach surgery July of 2009, several problems after surgery.

Mickey

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Re: Another year in the Watch and Wait can
« Reply #6 on: July 07, 2012, 09:13:44 am »
Hi PJP! I`m wishing you the best along with everyone who has to make a diffucult decision on what to do with their AN. They are all so different with each experience unique. All I can express is my individual situation which has so far been sucessful for me with the hope it may help someone else. Welcome to W+W and I`m sure your post op problems will gradually diminish as so many have. Best wishes, Mickey P.S. Keep the health kick as part of your lifestyle....

G_Man

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Re: Another year in the Watch and Wait can
« Reply #7 on: July 09, 2012, 06:15:03 pm »
Everyone, thanks for your great responses.  In my case the hearing loss is too great to operate to save my hearing.  If my hearing was still good I think I would have a serious decision to make.  I firmly believe that my hearing will go.  My doctor feels this way as well.
I also want to say that if and/or when it becomes time to have surgery I have complete confidence in my medical team.  I do understand one thing about this.  Whether W+W or post op, you don't just walk away from this.  Nobody gets out cleanly.  It's with you in one form or another for the rest of your life.  Even if you have the surgery and everything goes the best it can go you will still be crawling into that machine once every year or 5 years or whatever to see where you stand.
pjp: sorry you are having issues.  I know a number of folks in my local group who seem to get a lot better with their issues every time I see them.  I'm so happy for them (beyond words). 
susierg: I wish you good luck.  My Dr. says, "We like problems when they are small."  Hopefully you will be on the other side of the fence w/o too many splinters in your tushy once the little pea is out 8+).
Mickey: You gotta' come to more meetings buddy, we need your positive energy!
Jim: I can always depend on you so unlike the subways here in NYC 8+).
Peace to all.
Glen
Diag: 08/11/2009 Left side
AN: 0.6cm.  65% Hearing loss, tinnitus, fullness, minor motion issues.
hearing loss over 25+ years.  MRI in 2000 showed nothing.
Optical Atrophy from infantcy
Watch and Wait.
As of 2017 I am on a 2 year MRI frequency.

Mickey

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Re: Another year in the Watch and Wait can
« Reply #8 on: July 10, 2012, 09:45:17 am »
Hi G-MAN! I`m going to try and make the meeting on the 28th. Hope to see you and everyone soon... Mickey

Bonnie B.

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Re: Another year in the Watch and Wait can
« Reply #9 on: July 25, 2012, 02:44:15 pm »
Have you considered Gamma Knife or Cyber Knife treatment?   Your AN is still small.
1.7 cm AN
diagnosed January, 2012 - no hearing L ear
GK surgery done March 15, 2012 at Yale New Haven Hospital, New Haven, Ct.
Dr. Chiang and Dr. Yu

G_Man

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Re: Another year in the Watch and Wait can
« Reply #10 on: August 11, 2012, 09:01:57 pm »
Bonnie
I know for a lot of people radiation makes sense.  According to my doctor 51% of patients now opt for it.  From what I've seen and heard I currently am not interested in going that route.  I know a number of people who have had some success with it.  I also know a number of people who are having more and worsening side effects post treatment.  Both my doctor and I are hoping I die with this little parasite in my head at a nice old age.  Since I'm in that middle range of age anything can happen.  Having an AN certainly comes with angst.
Glen
Diag: 08/11/2009 Left side
AN: 0.6cm.  65% Hearing loss, tinnitus, fullness, minor motion issues.
hearing loss over 25+ years.  MRI in 2000 showed nothing.
Optical Atrophy from infantcy
Watch and Wait.
As of 2017 I am on a 2 year MRI frequency.

Blags

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Re: Another year in the Watch and Wait can
« Reply #11 on: August 12, 2012, 03:58:58 am »
G-man
Who are you using in NYC?
BLags
Oct 2012 - 1.4cm AN removed retro sigmoid with Dr. Boockvar and Dr. Brown at Weill Cornell NY Presbyterian

teripo

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Re: Another year in the Watch and Wait can
« Reply #12 on: August 13, 2012, 05:42:34 am »
I as well will W/W for another year.My An is 1.8 and I have hearing loss and occasional balance/dizzy/ditzy issues but I am hoping I can also keep it at bay.I went to about a dozen Dr.s and wasn't convinced. I know I have a little time.I don't know the location of the tumor tho,I understand that matters?

G_Man

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Re: Another year in the Watch and Wait can
« Reply #13 on: August 17, 2012, 09:41:51 pm »
G-man
Who are you using in NYC?
BLags
BLags
         I am with Dr. Roland at NYU.  He's one of the best around.  A number of people in the local NYC ANA group have used him and what I see in their results is very promising.  I got a very good feeling from him AND his staff.  I like NYU.  They seem to be on target with everything.
That works for me but it may not work for you. 
Diag: 08/11/2009 Left side
AN: 0.6cm.  65% Hearing loss, tinnitus, fullness, minor motion issues.
hearing loss over 25+ years.  MRI in 2000 showed nothing.
Optical Atrophy from infantcy
Watch and Wait.
As of 2017 I am on a 2 year MRI frequency.

G_Man

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Re: Another year in the Watch and Wait can
« Reply #14 on: August 17, 2012, 09:53:30 pm »
I as well will W/W for another year.My An is 1.8 and I have hearing loss and occasional balance/dizzy/ditzy issues but I am hoping I can also keep it at bay.I went to about a dozen Dr.s and wasn't convinced. I know I have a little time.I don't know the location of the tumor tho,I understand that matters?
Teripo
        Ahhh the location does matter as the proximity to the brain stem is a consideration.  Your doctor should be able to shed some light on that by looking at your MRI.
     You will get a lot of great information on this board.  Some people will have strong opinions about various aspects of the ANA deal.  For me 1.8 would be time to act, but that's my take on it.  I've only had the opinion of two doctors.  Both of them are in agreement.  If I had to go for the surgery I would probably seek out maybe 2 or 3 more.  But my situation is that I have 55db hearing loss for a long time.  I have some dizziness/balance issues.  Good days and bad days.  I have the tinnitus too.  None of those symptoms is severe enough for me to become pre-op.  However they do concern me as they are slowly worsening, ever-so-slowly. 
     A very wise person said something to me at one of the first ANA meetings I attended.  She said, "Glen all this is a well educated crap shoot."  That's probably the best piece of advice that anyone has given me thus far.  It puts it all into perspective.  So if you are going to the casino and you are going to try and beat the house then you want to try and stack the deck in your favor.  I feel that my Dr. is my edge on the house right now. 
  G_Man
Diag: 08/11/2009 Left side
AN: 0.6cm.  65% Hearing loss, tinnitus, fullness, minor motion issues.
hearing loss over 25+ years.  MRI in 2000 showed nothing.
Optical Atrophy from infantcy
Watch and Wait.
As of 2017 I am on a 2 year MRI frequency.