Author Topic: Cyber treatment at Stanford with Dr Steven Chang?  (Read 3435 times)

Rainbow66

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Cyber treatment at Stanford with Dr Steven Chang?
« on: April 23, 2022, 01:48:23 am »
I am a newly diagnosed member. My AN is 25 mm* 23mm * 20 mm. I have been discussing options with various doctors. One of the doctor I had consultation with is Dr Steven Chang who seems to have a really good reputation here in cyberknife treatment. He assured me that my tumour size is about the average size they treated and about half of the patients they treated are same or above my size. In Australia this size is on the larger side of the scale for radiation.

I am based in Australia and I weigh heavily on doctors%u2019 volume and experience in treating AN. I searched this forum and found a lot of good feedbacks.

1. If you also had cyberknife at Stanford with Dr Chang, could you comment on your experience, the good and the bad?

2. How was the post-treatment support?

3. Did you have to go through some unexpected complications?

4. Are there other doctors in US with similar or better experiences in this area?

5. Are there any information about the radiated tumour sitting in your brain for > 30 years? I am 42 years old. The two radiation specialists with whom I consulted both say if the growth is controlled, it will not cause further issues. I still feel a bit worried about the dead tumour continue to pressure the surrounding nerves for such long. With surgery, my consultation with Dr Friedman and Dr Schwartz at UCSD revealed that I will completely lose hearing and balance on the affected side. There is 1% chance of permanent facial nerve damage and 5% chance of transient facial weakness/paralysis, which I am reluctant to take on given radiation has 95% of chance to avoid most of these and > 60% chance to preserve my hearing (My hearing report shows I have near perfect hearing and I haven%u2019t noticed any balancing issue).

6. I talked to Stella who traveled from Sydney to US for cyber knife treatment with Dr Chang. Are there any other AU members who had similar experiences? How do you find the treatment and life after treatment?

Thanks a lot!

Claire
« Last Edit: April 23, 2022, 02:23:57 am by Rainbow66 »
30-Mar-2022 left side AN diagnosed 25mm*23mm*20mm ear fullness, facial numbness, numbness under and around left eye, mild left side tongue and mouth numbness.

donjehle

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Re: Cyber treatment at Stanford with Dr Steven Chang?
« Reply #1 on: April 28, 2022, 04:46:55 pm »
Thank you, Rainbow66, for making your first post on the Forums!

I don't have any experience with Dr. Chang or with Stanford, so I hope some others from the community will answer your questions.  Another option is to put Dr. Chang's name in the search field and do a search on the Forums to see what others might have already said about him.  You should do the search from the home page for the best results.

Thank you for sharing your journey!
Burning Tongue, Loss of Hearing & Balance, and Tinnitus led to MRI. Very small AN found on 11/23/2021
While watching and waiting, lost significant hearing. WRS now at 12% (down from 100%). Was fitted with CROS system on 3/7/22.  Stable MRI on 7/29/22
No treatment yet.

notaclone13

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Re: Cyber treatment at Stanford with Dr Steven Chang?
« Reply #2 on: April 28, 2022, 09:58:24 pm »
Here’s a link to Stella’s posts. She traveled from Australia to Stanford to get CK with Dr. Chang.

https://www.anausa.org/smf/index.php?topic=22640.0

Rainbow66

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Re: Cyber treatment at Stanford with Dr Steven Chang?
« Reply #3 on: May 01, 2022, 08:00:49 pm »
Thank you, Rainbow66, for making your first post on the Forums!

I don't have any experience with Dr. Chang or with Stanford, so I hope some others from the community will answer your questions.  Another option is to put Dr. Chang's name in the search field and do a search on the Forums to see what others might have already said about him.  You should do the search from the home page for the best results.

Thank you for sharing your journey!

Thanks Donjehle. Finding out the ANA website and group (both US and AU) is the most fortunate thing for me after the diagnosis. I had so many questions that I found answers here which helped me greatly to ease my anxiety. The members I talked to are all kind and warm hearted. It made me fell so much better. I have searched Dr Chang and found a lot of good things from the posts. I presume a lot of his patients have gone back to their normal life given not a lot of activities or post seen after the treatment. That is reassuring. I wonder how’s Francesco doing after almost 15 years of his treatment. Do any of you still have contact with him? He has inspired me to the cyber knife route and I found his interview with Dr Chang super helpful.
30-Mar-2022 left side AN diagnosed 25mm*23mm*20mm ear fullness, facial numbness, numbness under and around left eye, mild left side tongue and mouth numbness.

Rainbow66

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Re: Cyber treatment at Stanford with Dr Steven Chang?
« Reply #4 on: May 01, 2022, 08:02:50 pm »
Here’s a link to Stella’s posts. She traveled from Australia to Stanford to get CK with Dr. Chang.

https://www.anausa.org/smf/index.php?topic=22640.0

Thanks!
30-Mar-2022 left side AN diagnosed 25mm*23mm*20mm ear fullness, facial numbness, numbness under and around left eye, mild left side tongue and mouth numbness.

mwatto

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Re: Cyber treatment at Stanford with Dr Steven Chang?
« Reply #5 on: May 04, 2022, 08:16:11 pm »
I live in Perth WA and had Cyberknife at 5D Clinic three years ago and all is well. My hearing and balance are also ok. Also there are a few of us here I know who have had and also no issues.
Michele
20 x19x14mm Cystic AN diagnosed Feb 2019. CK.
Mri 2019 shrinking: 18x17x13 mm.
Mri 2020 - no cysts visible stable.
MRI 2021 stable no change
MRI 2022 stable no change.
MRI 2023 Further reduction 12x12x10mm!! Hearing 85%
MRI 2024: No change AN or hearing

Rainbow66

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Re: Cyber treatment at Stanford with Dr Steven Chang?
« Reply #6 on: May 05, 2022, 05:37:12 pm »
I live in Perth WA and had Cyberknife at 5D Clinic three years ago and all is well. My hearing and balance are also ok. Also there are a few of us here I know who have had and also no issues.

Thanks Mwatto. That’s great to hear. Congratulations on a successful treatment and thanks for sharing the information.
30-Mar-2022 left side AN diagnosed 25mm*23mm*20mm ear fullness, facial numbness, numbness under and around left eye, mild left side tongue and mouth numbness.

mwatto

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Re: Cyber treatment at Stanford with Dr Steven Chang?
« Reply #7 on: May 06, 2022, 01:18:24 am »
Sure PM me if you want any more info on them. I saw Professor Joseph though its very much a team approach.
Michele
20 x19x14mm Cystic AN diagnosed Feb 2019. CK.
Mri 2019 shrinking: 18x17x13 mm.
Mri 2020 - no cysts visible stable.
MRI 2021 stable no change
MRI 2022 stable no change.
MRI 2023 Further reduction 12x12x10mm!! Hearing 85%
MRI 2024: No change AN or hearing

donjehle

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Re: Cyber treatment at Stanford with Dr Steven Chang?
« Reply #8 on: May 07, 2022, 11:59:30 am »
Michele can be a great resource for you, Rainbow66.

We wish you the best in your journey!
Don
Burning Tongue, Loss of Hearing & Balance, and Tinnitus led to MRI. Very small AN found on 11/23/2021
While watching and waiting, lost significant hearing. WRS now at 12% (down from 100%). Was fitted with CROS system on 3/7/22.  Stable MRI on 7/29/22
No treatment yet.