Author Topic: Just Registered As Member  (Read 12693 times)

flier58

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Re: Just Registered As Member
« Reply #30 on: March 17, 2007, 11:18:57 am »
Arushi,
All that I can say to your post is: "Amen".
Flier58

ceeceek

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Re: Just Registered As Member
« Reply #31 on: March 17, 2007, 04:33:37 pm »
Good advice on everyones post. It is after all an individual decision, and I too, hope that I only provide the facts that there are many options available for each individual.....although confusing at times, I would rather know all the choices avaialbe to me, so I may then decide which route is best suited for me...just as there are many cars on the market, there are many choices of treatment.
we are all here to support, gripe, cry, rejoice together.
Ceeceek
Such is life...Finally identified...vidian nerve schwanomma, 2.8x2.8x3cm.....in the middle but under my brain.....post transphenoidal endoscopic surgery April 19th, 2007 Pre CK treatment in Sept 07.....re-arranged cavity in hopes of reducing side effects and now officially diagnosed as hard headed.

marystro

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Re: Just Registered As Member
« Reply #32 on: March 17, 2007, 10:04:11 pm »
Just want to add: once you have made your "informed" decision on the treatment choice, you must stick with it and do not second guess.  It will only make you anxious and wonder if you have made the "right" choice.  Just do your best research, then go with what you feel comfortable and most important of all, be optimistic.  A positive attitude will get you through anything!  I always say, "things happen for a reason!"

Cheers!!
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

jtd71465

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Re: Just Registered As Member
« Reply #33 on: March 18, 2007, 05:10:39 pm »
Mary-

I couldn't agree more.  Once you decide on a treatment stay positive and optimistic (something I never was prior to being diagnosed).  As you can see we took different surgical methods to battle the AN, but have the same views on attitude going into and after surgery.

Thanks again Mary.


Joe-

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

Shrnwldr

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Re: Just Registered As Member
« Reply #34 on: March 18, 2007, 07:31:40 pm »
Honestly my Otologist (sorry about the spelling) discussed all options and left the decision up to me.  He neither swayed me one way or other. I am positive that if I had decided on Gamma or Ck he would have directed me to the proper professionals to discuss this procedure further, as he has done with my decision for microsurgry. Opting for microsurgery was not an easy decision and is still very difficult to imagine. But then this "thing" is hard to believe it really is in my head and could qutie possible grow more.
 But I had already been online.  I had read articles and such regarding both radiation and microsurgery. All my doctor did was solidify my decision. 

I think that either or  have their own issues.......  it is a matter of personal choice.

I see my neurosurgeon tomorrow.  I am excited to finallly meet him and discuss this further and get my date set and yet I dread it..
2cm x1cm, right side
Surgery: Trans-lab approach
Dr. Jerald V. Robinson, Dr. William Hitselberger, Dr. Michael Stefan.
Hopsital: St Vincent's Hospital, Los Angeles, CA
Date of Surgery: May 18, 2007

OTO

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Re: Just Registered As Member
« Reply #35 on: March 19, 2007, 07:05:59 pm »
Hello

Everyone...  I didn't mean to stir up such a heated debate...  Anyway thanks for the information, support and the passion.   Everyone here is going through a lot, and obviously wants to share their experience and thoughts.  I appreciate it.    I did have my consulation with Dr. Slattery here in Honolulu (I was amazed at how crowded the waiting room was...  there must be alot of AN'ers getting their follow-ups).

I drop in when I figure out where this road is going...

Mahalo, OTO

ceeceek

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Re: Just Registered As Member
« Reply #36 on: March 19, 2007, 08:04:32 pm »
It is always a hot topic when you are discussing your BRAIN>...remember most of us only have the one,

I believe we all only wish to provide our experience and the feeling of support that you are not alone, you will survive and we are all here to help if needed. Take what advice you want, throw away the rest.
Keep us posted and just remember there is no absolutely right way of treatment other than what is best decision for you.
Ceeceek


if it helps, a treatment option recommended for me,if I did not need a biopsy was a fractionated radiation therapy, but this particular type of fractionation would require 30days in a row in a facility over 90 miles away. On that fact alone I decided that I would pursue other options as it was not realistic for me to travel and miss work for 30days....so sometimes you have to take your actual day to day life into consideration too.
Such is life...Finally identified...vidian nerve schwanomma, 2.8x2.8x3cm.....in the middle but under my brain.....post transphenoidal endoscopic surgery April 19th, 2007 Pre CK treatment in Sept 07.....re-arranged cavity in hopes of reducing side effects and now officially diagnosed as hard headed.

pearchica

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Re: Just Registered As Member
« Reply #37 on: March 26, 2007, 07:42:09 pm »
Aloha Oto- thanks for starting a really good thread! And I'm sorry that you have to deal with being diagnosed with an AN.  Although we are all passionate about our personal desicions, I do think it's nice to see that people care enough to take time to write on a website.  I have a thread going "Beginning stages of Research".   I had decided after 3 consultations  all reccommending surgery- that this was the only option available to me, only to be convinced that it wasn't after talking with a fourth doctor who was both a radio and neuro surgeon (And as you can see from the thread, I'm glad people were passionate). For me cyber knife was a great option as I really wanted to avoid surgery from day one. 

However, if you are comfortable with surgery- you should do it.  Arushi said it best, sleep on the information- surprisingly the more you research, the clearer it will become to you what is the best option for you. Hope all is well- Take care, Annie

Annie MMM MY Shwannoma (sung to the son My Sharona by the Knack-1979)
I have a TUMAH (Arnold Schwarzenegger accent) 2.4 x 2.2 x 1.9CM. CK Treatment 2/7-2/9/07, Stanford- Dr. Stephen Chang, Dr. Scott Soltys

 


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