Author Topic: New AN  (Read 13566 times)

tcrnko

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Re: New AN
« Reply #15 on: October 05, 2006, 02:48:06 am »
Hello flyer.

Good to hear back.  Hope thinigs are going well for you.  In order for me to send you the pictures I need an email address.  yYou can send your address to me at nicholas.t.crnko@kp.org.  This is my work mailbox.  I work better from there than from home.  At home I avoid my pc ofter and responses are slow.  I'll put together some pics for you with notes as I can.  Hope you are feeling better about your options.
"Used to be a Neuro Nurse, Believe it or not."
1.8 x 1.6 x 1.7 AN Left Side
TransLab on 1/10/07.
Drs Mastrodonas & Cueva, Kaiser San Diego

Boppie

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Re: New AN
« Reply #16 on: October 05, 2006, 09:27:05 am »
Hi, Mom of 3.5 yr old child.  I am a grandma, age 64+.  I will be 65 in December, one week after my first anniversary for AN treatment. 

My tumor was described as a 2 cm X 1.5 X 1  mass extending into the cerebellopontine angle.  My neuro showed me that the tumor was just "kissing" the brain.  I am happy well and glad to have been left with a small bit of imbalance and loss of right sided hearing.  My recovery was unremarkable. 

I am writing to encourage you to go with your gut about treatment options.  I do believe that both surgery and radiatiion have good points.  What is the hardest part?  Deciding which.  I believe that your side effects from whichever treatment will be minimal due to the size and position of your tumor.  My neuro was extrememly thorough about explaining my options.  Then, I researched until I was tried of the worry over what to do.  However, from the very day of MRI diagnosis my ENT and long known PCP wanted me to "to treatment now, don't wait".  I believe, now, that their concern was for the possibility of rapid change in the tumor size.  My PCP wanted surgery.  My ENT recommended both options as equal, (his own aunt has radiation treatment at age 60 and came out happy).  If my daugter or son ever had an AN, I might ask themn to consider radiation.  It seems to have great possiblities for people.  But, I had a gut feeling about the doctor I met, and that is why I chose surgery. 

So, you see I think your decision has to be collaboration of your learning and your leaning.  Either way, you are young, motivated to heal, and you have a life plan ahead of you.  You will feel better once you've made your decision.  One thing, don't go to the forum threads about complications for your particular treatment choice once you've made your decision. 

You are going to be just fine.  You will writing to someone else on this forum one year from today, and you will preparing to have a 5th year birthday for that child of yours.

marystro

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Re: New AN
« Reply #17 on: October 05, 2006, 10:59:58 am »
Hi Flyer,

Early welcome to the radiation group.  You will find the Stanford team an awesome health care professionals.  Dr. Chang and team truly care about their patients and very responsive.  Say "Hi" to Dr. Chang for me when you see him.  He will remember me as the one whose son had a candy bowl for him  ;).

Hi tcrnko,

Curious why you are not considering radiation.  With the new San Diego Cyberknife Center so close to you (I live in San Diego)...  Is it because of KP insurance coverage?  Good luck with your January surgery.  When I had Kaiser years back, I was very happy with their service at Zion.  They are a good bunch!

Mary

Mary
July 2006 - 22 x 18 x 20 mm
August 2006 - CK at Stanford by Dr. Chang/Dr. Soltys
February 2008 - 19 x 15 x 20 mm and stable
May 2009 - 17 x 14 x 18 mm

flier58

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Re: New AN
« Reply #18 on: October 05, 2006, 12:25:14 pm »
Hello Mary, Boppie, tcrnko and everyone else on this board,

I just wanted you to know that you made me wash kitchen floor which I did not planned.  You made me cry (again) with just gratitude  for people like you.   I've never met (and good chance never will) any of you but you  still make time to make me and others feel better day after day.  But to make me wash floor!!!!!!!

But seriously-I am so grateful that I found this board.  I don't know what I would do without your support.  I think I cried a tubfull of tears since my dx.  but half of it are tears of gratitude.
Thanks,
Flier58/Andy's mom

PS
tcrnko, I will e-mail you later beacuse I have to run to pick up Andy.

marystro

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Re: New AN
« Reply #19 on: October 05, 2006, 01:50:47 pm »
My dearest flyer,

You remind me of all the tears I shed between dx and treatment.  Believe me, once you have your decision and treatment, you will be so relieved.  I know that's how I felt.  Now, I have a new attitude and people at work like the "new" Mary!

Don't scrub that floor too much.  It will get dirty anyway.  My 8-year old spilled orange juice this morning and he cleaned it up before I even woke up.  That was reward enough for this mom  :D !!

Mary
Mary
July 2006 - 22 x 18 x 20 mm
August 2006 - CK at Stanford by Dr. Chang/Dr. Soltys
February 2008 - 19 x 15 x 20 mm and stable
May 2009 - 17 x 14 x 18 mm

dowdog

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Re: New AN
« Reply #20 on: October 23, 2006, 03:54:54 pm »
Dear Flier58,
I am a 52 y.o. male living in Chicago suburbs and was diagnosed April of this year.  I went to my ENT with symptoms of fullness in my right ear, loud ringing/buzzing in my ears, distorted hearing in my right ear and frequent headaches.  Ater a hearing test that indicated one sided hearing loss he told me to have an MRI with/without contrast, the results of which showed that I had a 9 millimeter AN. 
I was referred to "two of the top neuro-otologists in Chicago" according to my ENT.
Dr. Wiet, who is on the ANA board of advisors and Dr. Leonetti.  Wiet is affiliated with the Ear Institute of Chicago. www.chicagoear.com
Lianetti is affilitated with Loyola.  Both are surgeons.  I went to see Dr. Wiet after my initial diagnosis.  He wanted to know how much I knew about the condition and what was my preference of the three classic responses to AN.  I told him "Watch and Wait" and if in the future I chose treatement, I would prefer radiation.  He said his partner Dr. Battista was the person to see if I was considering radiation, so I have seen Dr. Battista who is following my progress in the Watch and Wait mode. 
I just got the results of my six month MRI.  My AN has "grown" by two millimeters.  Still relatively small.  I will wait another 6 months and have another MRI.  My current state of mind is that the symptoms I currently have(namedabove) will likely not get any better after surgery or radiation.  In fact, they could get worse.  Add to that the possibility of facial paralysis, total one sided hearing loss, and CSF leak with debilitating headaches.  What is the advantage of treatment?  I am having a hard time seeing it.  I read somewhere on another site that many AN's grow minimally after initial diagnosis.  Some 30 to 40% of people diagnosed experience
no further growth of the AN.  That sounds like it is worth watching and waiting unless the AN is so large and positioned in such a way as to render you with no option but surgery. 
Also, check out Leonard J. Cerullo, M.D. at www.neuro-ortho.org

you will make the right choice

chuck
Diagnosed 4/21/06, 10mm right-side AN.  CyberKnife treatment in Feb.2007.

 


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