Author Topic: Booked for CK with Dr. Chang next week  (Read 3108 times)

new_mexico

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Booked for CK with Dr. Chang next week
« on: March 26, 2013, 05:59:20 pm »
Hello, I just got off the phone with Dr. Chang.  I have been on watch and wait since 2008, and have a small acoustic neuroma, which Dr. Chang says there is a 98% chance of treating successfully, but he also pointed out that I have to make the decision. The AN has left my deaf in my right ear, has caused some facial pulling and tugging, and I may be having a few very minor balance issues.  I am booked to go to Stanford next week and I am scheduled for CK on Wed.  I am having nervous jitters.  I wanted to stop it from doing more damage to me but it is so small and there has been no appreciable growth.  My insurance is in place to cover the procedure and Dr. Chang said that most choose to have it treated.  I would like to hear from anyone who might help me make this decision, especially those who have gone through CK with small ANs.  After talking to Dr. Chang on the phone, it is clear that the only right answer is the one that I am comfortable with.  Thanks

PaulW

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Re: Booked for CK with Dr. Chang next week
« Reply #1 on: March 27, 2013, 02:04:44 pm »
There are a number of doctors, and increasing research suggesting proactive radiosurgery for small AN's maybe advantageous.

http://www.ncbi.nlm.nih.gov/pubmed/21121792

My tumor was relatively small at 10mm.. I found it very uplifting to be out of watch and wait and to be doing something about my tumor.

There are many doctors that advocate W&W and statistically W&W is a good option for many.
But W&W can be frustrating, and not knowing what the future may bring can be a concern.
Proactive treatment allows us to draw a close on this episode in our life and start a new beginning for good or bad.

I went against my doctors recommendation for W&W, and had Cyberknife, 3 weeks after diagnosis and very happy that I did.
My hearing and balance remain in tact nearly 3 years after treatment.

If I lose my hearing, or need surgery down the track, I would readily accept that outcome as I know that I have done what I could.
If I lost my hearing or suffered facial paralysis after a long stint on W&W, I would always be wondering, what if I had done something earlier. Proactive treatment allows us to move on. I personally feel that is very empowering.
10x5x5mm AN
Sudden Partial hearing loss 5/28/10
Diagnosed 7/4/10
CK 7/27/10
2/21/11 Swelling 13x6x7mm
10/16/11 Hearing returned, balance improved. Feel totally back to normal most days
3/1/12 Sudden Hearing loss, steroids, hearing back.
9/16/13 Life is just like before my AN. ALL Good!

jsanders1379

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Re: Booked for CK with Dr. Chang next week
« Reply #2 on: March 27, 2013, 04:06:59 pm »
Thanks for posting this article, Paul-I'm a "watch & wait", but having a lot of misgivings about it...do you know of any other research articles on this topic? thanks, Jeanne
Jeanne
Dx 10-25-2012
5x6x4 mm
3-27-2013 MRI 9x6x6 mm
GK  5-7-13 Swedish Hospital, Denver

jak1

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Re: Booked for CK with Dr. Chang next week
« Reply #3 on: March 27, 2013, 06:25:56 pm »
Dr. Chang is amazing.. you are in great hands..
2.7cm AN diagnosed 4/11.  Stanford CK 5/11.

new_mexico

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Re: Booked for CK with Dr. Chang next week
« Reply #4 on: March 27, 2013, 08:02:28 pm »
Thank you for your encouragement.  Paul--yes, it does feel like closing a chapter, thank you for that.  At first, I wasn't even sure what an acoustic neuroma was when I was first diagnosed with it--I heard "benign" and "won't act until our hand is forced."  I think of all the losses and troubles since then and am really resolved to act now.  This forum has allowed me to learn so much about my condition, to make me believe that something could be done, and put me in touch with Dr. Chang.  I am really at peace with my decision.

leapyrtwins

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Re: Booked for CK with Dr. Chang next week
« Reply #5 on: March 29, 2013, 08:30:40 am »
I hear Dr. Chang rocks.

Good luck next week,

Jan
Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways