Author Topic: Here comes another Newby into the great "stone soup" of AN life!  (Read 4616 times)

Mile-Hi Nicki

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Hello, I, too am new to this site having been just diagnosed with a left-side 1.5cm AN. :(  At first I felt soooo alone in the world and then I stumbled onto this website and this wonderful "community" of people who are going through the same thing I am.  It was like a light when on and my outlook is so much better.  I am going to Barrows Institute in Phoenix and have seen Dr. Syms and soon to confer worth Dr. Porter. The best advise was "get educated" about the various options/treatments. I just want to thank all of you for your open and frank advise to us Newbys and kudos to you also for your courage.  I hope I can "live up" to your examples!  My gut reaction is to "get this sucker out of here" since I am just about to celebrate my 60th birthday and don't want to spent my golden years fighting this thing.
Thanks - Mile-Hi Nicki from Prescott, AZ
e-mail: wpaulnicki@aol.com
59 and clock ticking
1.5 left side An diagnosed April 2006
Awaiting treatment by Dr. Syms and Dr. Porter of Barrows Neurological Inst. Phoenix

Battyp

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Re: Here comes another Newby into the great "stone soup" of AN life!
« Reply #1 on: April 27, 2006, 04:54:50 pm »
Hi Nicki and welcome!  Sorry you're having to join our exclusive club.  I tell you some people will do anything to join a clique :o) (yes, I'm saying that with affectionate humor it's the only thing that keeps us sane sometimes)

Are you having symtpoms?
There are many on here who have had successful treatments that have "popped" in and out.  Here's wishing yu the same.  Please do not hestitate to ask anyone us "regulars' any questions we're always more than happy to share our experiences. 

Have you decided on treatment? 

Keep us posted on how you do! 

Michelle

ppearl214

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Re: Here comes another Newby into the great "stone soup" of AN life!
« Reply #2 on: April 27, 2006, 05:04:39 pm »
Hi Mile-Hi Nicki and welcome! :)  So thrilled you are here and you are far from alone! Prescott? Almost moved there in my married days... my ex was interviewing at the college there for work. Anyway, we're here for you and know that we will share what we can to help your AN journey be a bit better... but, at least the drinks here aren't watered down and the jokes could be better, but we give good hugs!

Hang in there... and welcome!
Phyllis
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

HeadCase2

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Re: Here comes another Newby into the great "stone soup" of AN life!
« Reply #3 on: April 27, 2006, 08:51:19 pm »
Nicki,
  Welcome.  If you're looking for information you've come to a good place to find it.  Look through the posts, you'll find a wide range of experiences.  Just keep in mind that many have gone through having and treating an AN, and many have visited this site, and many have recovered successfully and never looked back.
  Regards,
 Rob
1.5 X 1.0 cm AN- left side
Retrosigmoid 2/9/06
Duke Univ. Hospital

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Desilu

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Re: Here comes another Newby into the great "stone soup" of AN life!
« Reply #4 on: April 28, 2006, 03:58:51 pm »
Hi Nicki,

Welcome! Yes, we are here to help you! I made a list of questions that I wanted to ask my doctor, because I knew when he walked in the door that I would forget what I wanted to say. This was very helpful for me. Please make sure you get a second opinion if possible just to be sure. Before you make any kind of decision, it's important to feel comfortable with your doctor, after all he's the one that's going to do the surgery or radiation. I can only speak for myself, but HEI in Los Angeles will give you a free second opinion if you send them your films. It's well worth the postage to get it. This website is very informative, do your homework and make an educated decision, this will help to calm any fears that you might have. If you have any questions please feel free to ask. Ann
HEI July 26, 2005
5mm X 8mm Left AN
Middle Fossa
Dr. Brackmann & Dr. Hitselberger

Sue

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Re: Here comes another Newby into the great "stone soup" of AN life!
« Reply #5 on: April 28, 2006, 04:53:06 pm »
My doctor looked at me, a just turned 60 year old woman, and said "Microsurgery is a VERY BIG DEAL." He said treatment depends on where you live in the United States!  Some places are much more likely to do the surgery over other options, I guess.  Yes, do the research. Talk to the doctors.  They should be doing what is best for your health and physical ability, taking into account the individual placement of your AN and the damage it is doing.  I just finished with my Gamma Knife and I'm dealing with that.  Right now I'm having residual effects that I hope will subside and they probably will because my doctors made my "invader" angry. It's getting back at me!!  Lots of people on this site have been helpful to me, if nothing else, a place to just pour out your fears and frustrations. But they will help guide you to seeking the right questions and things to think about.  Everyone on here is the same, yet very different stories.  These are good people.  Good luck with the journey you didn't expect to take.  Thought you were on the way to England, and ended up in Madagascar!    ;D
Sue in Vancouver, USA
 2 cm Left side
Diagnosed 3/13/06 GK 4-18-06
Gamma Knife Center of Oregon
My Blog, where you can read my story.


http://suecollins-blog.blogspot.com/2010/02/hello.html


The only good tumor be a dead tumor. Which it's becoming. Necrosis!
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SuzeAN

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Re: Here comes another Newby into the great "stone soup" of AN life!
« Reply #6 on: April 28, 2006, 06:09:36 pm »
Hi,
I had a consult with Dr Porter back in Sept 2005, I had my 2.5cm AN CK'd at Barrows.  Dr Porter is very intense and thorough; he reviewed my case before I got there because I sent my MRI films to Dr Daspit and he consulted with Dr Porter.  He is very experienced in his field even though he looks quite young.  I traveled from Las Vegas just to go to Barrows and if I had to have surgery, I still would have had it done by Dr Porter and Dr Daspit.   Good luck with your "journey"!

Cheers,
Suzan
2.5 cm, left side
CK-Barrows 10/05

justafactoflife

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Re: Here comes another Newby into the great "stone soup" of AN life!
« Reply #7 on: May 03, 2006, 01:30:17 am »
Hi Mile-Hi Nicki

I too am a newbie and I found this forum just recently too.  I'm 53 and male.  I had my surgery July 2003, and looking back now it seems a really long time ago.  What I most remember is probably the same thing that you are experiencing now.  To quote Dr Phil, "A Life Changing Moment" on the outcome of the surgery and being scared of what the rest of my life would be like.  Be sure to explore all your options surgically and make the decision for yourself what you want to do; after all, it's your life. 

I chose Micro-Surgery and the reason why?... I didn't want to do any radiology injury to any surrounding brain tissues near the tumor with the Gamma Knife.  Secondly, the results for killing the tumor takes longer while still having the symptoms of dizziness and etc.  I was told it was just as risky with Micro-Surgery for nerve damage, and complications that could happen later after surgery.  Either way you decide, it goes without saying... it is risky.  Your life will change, but many of us have not experienced a great deal of changes, and many of us have.  I lost 40% of my hearing in the right ear, my right eyelid occasionally stays partly closed, and I wear an inner canal hearing aide to help me get by.  I still have significant balance issues and have to be careful when driving my car.  Be on the look out for us on the road!!!   I know I'm not sounding too good to you right now, but life does go on and it's "Just-a-fact-of-life" that when life throws you a lemon, you can make lemonade, right?  Good luck and God's Speed to your recovery. 
AN 1st time, July 2003
7mm x 4mm x 5mm
Subocital/Retrosigmode microsurgery
St Anthony's Hospital, St Louis MO
Dr Faisel Albanna, MD Neurosurgeon

2nd regrowth 1cm x 5mm x 4mm, Oct 2006
3 FSR using Cyberknife
St Anthony's Hos. Oklahoma City
Dr Clinton Medbery, III MD Radiologist

3rd 1.8cm x 12mm

Road Trip Dale

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Re: Here comes another Newby into the great "stone soup" of AN life!
« Reply #8 on: May 05, 2006, 08:30:41 am »
Hi Nikki,

I too am a newbie to this forum but I think I can really relate.  I'm 62 in better than average shape (for someone my age the doctor's always say:-) and had (emphasis on had) a 1.75cm AN on my right side.  I chose Translab microsurgery because "I wanted that thing out of there"  and want to spend my "golden years" without the worry of having that thing growing in me.  Sound familiar?  I am 3 weeks post surgery and have to tell you I feel great.  Sure I've got ear aches, But nothing a little aspirin wont help, and I have a little balance problem, although I actually jogged a couple of blocks yesterday with very little problem.  I am single-sided deaf on the right side, but I had accepted that prior to going in to the process, and with the tinnitus I had previously and still, I really don't notice a huge difference.  I have very little facial problems, my taste buds are gone temporarily (I'm already getting that back), and my only problem with hearing is in crowds, especially restaurants or the Mall.  I just accept I can't hear and don't have a problem telling clerks or whomever is with me that I can hear.  Most are pretty good about getting closer or giving me something to write with.  As you can tell from others on this forum there are many different outcomes....I can attest that the outcome can be just fine also.  I am really pleased with my results and look forward to not having anything I can't adjust too as I pursue the good life.

Good luck on your choice...and remember the results are not all bad........keep your sense of humor, it will come in handy.  When everyone found out it took 3-1/2 hours to drill through my skull I, of course, became a "Hard Head!", and when they found that they took belly fat to fill the hole I became a "fat head", who had a liposuction along with my An surgery:-)  I don't care who you are "thats funny!"  Let us know what you decide and they outcome.
1.75 AN Right Side
Translab 4/16/06
Dr. Charles Leutje and Dr. Paul Camarata
St Luke's, Kansas City, MO

ppearl214

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Re: Here comes another Newby into the great "stone soup" of AN life!
« Reply #9 on: May 05, 2006, 08:59:54 am »
I have to say it's truly wonderful to see the "newbies" here reaching out to others, sharing stories of their AN journeys and trying to move along, giggle a bit and reach out to others in need. That is why I so love this website/forum.  I have to say that your stories are inspiring to many and I commend you all for your strength, courage and compassion.

BTW, it's Cinco de Mayo and Marguaritas are being served up in the Coral Bar! (Hey, not the cruise director here for nothing!)

TGIF to you all! .. and thanks!
Phyl
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"