Author Topic: AN Diagnosed, Advice Needed  (Read 4920 times)

jamssp

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AN Diagnosed, Advice Needed
« on: January 29, 2013, 08:07:46 pm »
Hi Everyone,

I was diagnosed with an AN a couple weeks ago.  It's 18 x 16 x 12 (mm) so from what I understand it's considered "medium" sized.  I have met with two teams of surgeons (Piepmeier/Kveton at Yale and Gutin/Selesnick at Memorial Sloan Kettering).  The Yale drs. recommend translab and Gutin/Selesnick recommend retrosigmoid.  I have also spoken with a radiologist who said surgery was probably the way to go and I spoke with a dr. at HEI who was unable to open my MRI on his computer for some reason but reviewed my report, background and the advantages/disadvantages of each approach.  I've also been reading this forum A LOT!!  :D

I have virtually no hearing loss, a little tinnitis, and no balance or dizziness issues.  I have been experiencing a vague eye problem for a couple months and frankly just thought I needed a new prescription.  I was diagnosed with sixth nerve palsy and sent for the MRI.  Ta da! There was my AN!  I feel I would be in great hands with either team of doctors but I'm probably leaning towards Drs. Gutin and Selesnick.  I think they'd like to try and preserve some hearing although Dr. Selesnick wasn't terribly optimistic.  I have searched them on this forum but most of the references look to be a couple years old.  Has anyone had surgery done with them recently?

Thanks!  I'm glad you're all here!

Mary


2 cm AN, Translab March 2013, Dr's. Gutin & Selesnick, Memorial Sloan Kettering, NY.
SSD but otherwise doing great!

Nannybee

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Re: AN Diagnosed, Advice Needed
« Reply #1 on: January 31, 2013, 10:11:06 pm »
Interesting that you have had 2 consults recommending surgery. My AN was diagnosed in late December and so far I've seen 2 neurosurgeons, both are recommending gamma knife. I have a third consultation in the coming weeks, I'll see what suggestion that dr has. Would love to just get it out if the symptoms would stop, but there's no assurances that the tinnitus will ever stop.
AN 18x19 mm
3 meningiomas
NF2
AN treated with SRS April 2013
MRI Feb 2016 AN shrunk to 17 x 8 mm :)
Constant tinnitus in AN ear
Severe hearing loss AN ear

arizonajack

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Re: AN Diagnosed, Advice Needed
« Reply #2 on: February 01, 2013, 12:00:58 am »
I suggest you consult with a couple of radiation oncologists and see if your a reasonable candidate for Gamma Knife or Cyber Knife.

There is some evidence that radiation can preserve hearing:

http://emedicine.medscape.com/article/857604-overview

Can't tell you which way to go. You'll have to do your research and make your choice.
3/15/18 12mm x 6mm x5mm
9/21/16 12mm x 7mm x 5mm
3/23/15 12mm x 5.5mm x 4mm
3/13/14 12mm x 6mm x 4mm
8/1/13 14mm x 5mm x 4mm (Expected)
1/22/13 12mm x 3mm (Gamma Knife)
10/10/12 11mm x 4mm x 5mm
4/4/12 9mm x 4mm x 3mm (Diagnosis)

My story at: http://www.anausa.org/smf/index.php?topic=18287.0

Blags

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Re: AN Diagnosed, Advice Needed
« Reply #3 on: February 01, 2013, 06:10:17 am »
I met with Gutin/Selesnick. They were my second choice. They didnt take my insurance. I went with Boockvar/brown out of Cornell- same floor as Selesnick. Also felt more comfortable with surgery at Cornell vs Sloan. I had retro in oct and also had full hearing prior. Lost very minimal hearing after surgery. I don't know where your location of tumor is in comparison to mine. I would highly recommend meeting with dr. Boockvar and dr. Brown. They were fantastic.
Oct 2012 - 1.4cm AN removed retro sigmoid with Dr. Boockvar and Dr. Brown at Weill Cornell NY Presbyterian

jamssp

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Re: AN Diagnosed, Advice Needed
« Reply #4 on: February 01, 2013, 08:41:32 am »
Thank you all for your replies.  I have seen a radiation oncologist who said that because of the location of the tumor, which is close to the brain stem, that "if I was his wife" he'd recommend surgery. (I also like that at 53, they all seem to consider me young!)  I'm comfortable with the surgery part of the decision and in the last couple days have spoken to Dr. Selesnick again who answered more questions and I'm pretty sure I'll go with them.  It's really just a leap of faith for everyone and what it comes down to is that no matter who does it I'm just very, very nervous and scared. The waiting is torture! I'm trying to keep some sense of humor about it all but  I feel that no matter what, I'm going to come out worse than when I went in.  I know that's silly since the darned thing is growing and obviously it has to be treated, it's just that at this point, I really have very few symptoms. 

Blags, I'm so happy to hear that you had a good outcome with your retro! I'm hoping to schedule mine for early March (I want to squeeze in a last winter break vacation with my family first!) :)

Thanks again! 
2 cm AN, Translab March 2013, Dr's. Gutin & Selesnick, Memorial Sloan Kettering, NY.
SSD but otherwise doing great!

Chances3

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Re: AN Diagnosed, Advice Needed
« Reply #5 on: February 01, 2013, 12:13:39 pm »
Without throwing more doctors into the mix, I had a small AN on my 8th cranial nerve deep inside near my brain stem.  My ENT in Manhattan gave me a list of doctors in order of her preference.  The first choices she gave me was Dr. Roland and Dr. Golfinos.  I was told that because my tumor was small, I was a good candidate to have my hearing preserved.  They operated on me using the middle fossa approach, and my hearing was saved, albeit a little muffled.  The tinnitus has gotten worse, and I am told there is no cure.

My son's client told us his adult daughter went to Dr. Sisti, she had a pretty big tumor.  He removed it, and her recovery is going well.

I hope I didn't make this decision more diffcult, but I am a firm believer in having as many choices as possible.

Good luck, and God Bless.

annamaria

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Re: AN Diagnosed, Advice Needed
« Reply #6 on: February 01, 2013, 07:13:47 pm »
To really learn the doctor's lingo, which is crucial, "young" means: "if you do radiation, in 10 years you are perhaps likely going to get some (unpleasant) side effects from radiation (such as additional tumors -- see the actual true medical research on this topic, not the Internet stuff); hence, if you were 62, or 65, or 67, or 70, ok, at 72, 75, 77, or 80, you may accept these side effects as a "fact of life".... but if you are 53, you don't necessarily want these "facts of life" at 63"... be mindful of what you are told, not told, or left to read between the lines ...

Annamaria

annamaria

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Re: AN Diagnosed, Advice Needed
« Reply #7 on: February 01, 2013, 07:23:37 pm »
To be clear on my last post: if radiation IS THE ONLY CHOICE YOU HAVE, then do it! If you have other choices, then give strong consideration to the other choices first.

Annamaria

mandy721

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Re: AN Diagnosed, Advice Needed
« Reply #8 on: February 02, 2013, 11:17:39 pm »
I know of two people who had surgery with Drs. Gutin and Selesnick.  They were both very pleased with their outcomes.   They are excellent doctors and Memorial Sloan Kettering is an excellent hospital. 
Husband diagnosed 5/30/09 with 3.2cm right AN
Surgery at  Columbia Presbyterian 8/4/09
Platinum eye weight implant - 8/17/09
17 days in hospital and rehab
SSD, facial weakness, some tinnitus, headaches , balance and eye problems

 


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