Author Topic: 3 year post-CK follow-up  (Read 4558 times)

novagirl

  • Jr. Member
  • **
  • Posts: 65
3 year post-CK follow-up
« on: October 09, 2015, 07:05:05 am »
Hello fellow ANers,

I have only been posting once a year with my follow-up results since I do think these could be useful for those who are considering radio surgery. I had my audiogram and MRI yesterday - no changes, still excellent hearing and the bugger appears to be the same in size - 12mm x 6 mm. It was also nice to note how many times the MRI report referred to my scan as "unremarkable" - that's precisely the way I'd like it to stay!

So 3 years after CK, I can honestly state that it was the right decision for me. I was able to maintain the same lifestyle and work schedule, preserved my hearing and my AN shrank a bit in size. I have also noticed that since treatment I have more energy, hardly ever feel dizzy and weird facial sensations have also dramatically decreased in frequency.

Here wishing all the best to all of you reading this. I am sure I will be back with an update next year!
Right AN 10 x 10 x 7 mm - dx 7/28/09; w&w for three years
CK at Stanford October 2012 - Dr. Chang and Dr. Soltys
Oct'12: 15 x 14 x 10 mm
Oct'14: 12 x 6 x 5 mm

mcrue

  • Sr. Member
  • ****
  • Posts: 357
  • Greg Mech
    • gregmech26
Re: 3 year post-CK follow-up
« Reply #1 on: October 09, 2015, 07:36:22 am »
NOVAGIRL...Thank you very much for your post! It is very encouraging to read successful outcomes regarding cyber knife for treating acoustic neuromas. I too will likely be seeing Dr. Chang at Stanford in 2016 for the cyber knife treatment. I will be 42 at that time. While my AN is considered small, some doctors have expressed concern that since I'm not "over 80" that I should consider one of the three microsurgery options instead. I'm still very anxious about having the cyber knife treatment even though it's considered non-invasive.

Dr. Chang will be the host of a free webinar on Thursday, Oct 22 at 2pm Eastern time through the ABTA. I highly encourage anyone to spend the hour listening to Dr. Chang if they're considering radiosurgery. There are also numerous valuable webinars available through this fabulous ANA website.

The bottom line with having an Acoustic Neuroma is even if you're the President of the United States and money is no object, and even if you have the very best most experienced surgeons in the world, there is always a chance you may have a "horror story" and facial paralysis, eye problems, death, etc.  Let's not sugar-coat it. There are no guarantees with brain surgery, or any treatment. That's why when it's my turn to roll-the-dice I personally will chose Dr. Chang and cyber knife treatment.

As they say... it is a personal decision for everyone.

Thanks again for your post and best wishes. And Dr. Chang preserved your hearing!!!
« Last Edit: October 09, 2015, 07:53:12 am by mcrue »
5/19/2015 - 40% sudden hearing loss + tinnitus right ear

6/26/2015 - AN diagnosed by MRI - 14mm x 7mm + 3mm extension

8/26/2015 - WIDEX "ZEN" hearing aid for my catastrophic tinnitus

12/15/2015: 18mm x 9mm + 9mm extension (5mm AGGRESSIVE GROWTH in 5 months)

3/03/2016:   Gamma Knife - Dr. Sheehan

novagirl

  • Jr. Member
  • **
  • Posts: 65
Re: 3 year post-CK follow-up
« Reply #2 on: October 09, 2015, 07:58:47 am »
Thank you for your reply. I just wanted to let you know that I was 36 at the time of treatment. Dr. Chang has treated many patients in their 20s and 30s. Some surgeons like to say that the younger you are the better is the chance of full recovery after surgery. But on the flip side, when you are in your 30s early 40s, you also do not want to end up with facial paralysis or suddenly not have the same lifestyle because of complications!!! So absolutely, it is a personal decision. I always had the gut feeling that CK was right for me, and went with it.

All the best to you. Dr. Chang is great
Right AN 10 x 10 x 7 mm - dx 7/28/09; w&w for three years
CK at Stanford October 2012 - Dr. Chang and Dr. Soltys
Oct'12: 15 x 14 x 10 mm
Oct'14: 12 x 6 x 5 mm

mcrue

  • Sr. Member
  • ****
  • Posts: 357
  • Greg Mech
    • gregmech26
Re: 3 year post-CK follow-up
« Reply #3 on: October 09, 2015, 08:37:21 am »
Most excellent!

There is also a gentleman in our local ANA support group who had successful Cyber Knife treatment at Stanford with Dr. Chang almost two years ago. He came out of treatment with no side effects and Dr. Chang also preserved his hearing! In fact, the gentleman in our local support group claims his hearing is even better than before treatment.

This is why I won't hesitate to change insurance during open enrollment this November from an HMO to a new PPO and fly across the country to get one of the best treatments available with some of the best outcomes.

Even one of the prominent microsurgeons that I interviewed a few months ago admitted that each side (microsurgeon vs. radiosurgeon) will manipulate the available statistics to favor their side of treatment as the "best." I was really surprised how candid the surgeon was about disclosing that fact.

I asked one microsurgeon that if his own son or daughter had the same Acoustic Neuroma that I have, would he recommend microsurgery or radiosurgery for his own family member? Predictably he said microsurgery. It's answers like that that sometimes make me second-guess myself.

Anyways, thanks again for sharing. The more Cyber Knife success stories I hear coming out of Stanford and Dr. Change the more confident I realize that I am making the correct decision for myself and my personal situation. Even our local ANA support group facilitator mentioned that most people who have completed successful treatment for their Acoustic Neuroma don't show up at the support group or participate in online forums.

At this point (post-diagnosis) I've completed several months of research and countless hours of obsessive homework regarding Acoustic Neuromas, and I've concluded I will do anything to avoid having my skull cracked open. I can't wait to be on the other side of this.
« Last Edit: October 09, 2015, 09:28:54 am by mcrue »
5/19/2015 - 40% sudden hearing loss + tinnitus right ear

6/26/2015 - AN diagnosed by MRI - 14mm x 7mm + 3mm extension

8/26/2015 - WIDEX "ZEN" hearing aid for my catastrophic tinnitus

12/15/2015: 18mm x 9mm + 9mm extension (5mm AGGRESSIVE GROWTH in 5 months)

3/03/2016:   Gamma Knife - Dr. Sheehan

CattAN

  • New Member
  • *
  • Posts: 39
Re: 3 year post-CK follow-up
« Reply #4 on: October 10, 2015, 03:34:42 am »
Dear Mcrue,

Please post a link to this webinar:

"Dr. Chang will be the host of a free webinar on Thursday, Oct 22 at 2pm Eastern time through the ABTA. I highly encourage anyone to spend the hour listening to Dr. Chang if they're considering radiosurgery. There are also numerous valuable webinars available through this fabulous ANA website."

I am experiencing soreness on my head at the same area I felt pressure during the CK session. I am 5 months post CK, and don't know if this will go away.  I have been icing the area, and this seems to help.  The Radiology nurse at Stanford thinks it is not related? but I am quite certain it is.  Call me Crazy  ^-^

CattAN
Right side AN diagnosed 6/7/2015
12x11 mm
Swelling to 15x13 mm @ six months
SSD, tinnitus, some balance issues....
~~~~~~~~~
Stanford CyberKnife1 9/2/2015 (single fraction)
Dr. Steven Chang & Dr. Iris Gibbs

mcrue

  • Sr. Member
  • ****
  • Posts: 357
  • Greg Mech
    • gregmech26
Re: 3 year post-CK follow-up
« Reply #5 on: October 11, 2015, 02:06:54 pm »
Dear Mcrue,

Please post a link to this webinar:

I am 5 months post CK,

CattAN


CattAN,

You're only 5 weeks post CK :)

You should email Dr. Chang directly if you've been treated by him. Even I have his email address and phone number.

Best wishes.

Here is the link you requested:  https://attendee.gotowebinar.com/register/6376760990885923074
5/19/2015 - 40% sudden hearing loss + tinnitus right ear

6/26/2015 - AN diagnosed by MRI - 14mm x 7mm + 3mm extension

8/26/2015 - WIDEX "ZEN" hearing aid for my catastrophic tinnitus

12/15/2015: 18mm x 9mm + 9mm extension (5mm AGGRESSIVE GROWTH in 5 months)

3/03/2016:   Gamma Knife - Dr. Sheehan

CattAN

  • New Member
  • *
  • Posts: 39
Re: 3 year post-CK follow-up
« Reply #6 on: October 12, 2015, 04:24:38 pm »
Thanks MCrue for the link.  I did not know what ABTA is referring to until I read your post, then looked it up.  This is why the ANA Forum is so awesome.  I am now following ABTA on Twitter, and signed up for two of their webinars.
Right side AN diagnosed 6/7/2015
12x11 mm
Swelling to 15x13 mm @ six months
SSD, tinnitus, some balance issues....
~~~~~~~~~
Stanford CyberKnife1 9/2/2015 (single fraction)
Dr. Steven Chang & Dr. Iris Gibbs

arcticrose

  • New Member
  • *
  • Posts: 15
Re: 3 year post-CK follow-up
« Reply #7 on: October 12, 2015, 06:07:08 pm »
Thank you for your 3 yr report....  I go in for mine in Dec.   Mine has been "same" size not growing which makes me happy.  Glad to hear you good results.   
4mm x 8mm right side AN found 10/30/11
imbalance, ringing and fullness in ear
CK 3/16/12 San Diego Dr. D. Smith

mcrue

  • Sr. Member
  • ****
  • Posts: 357
  • Greg Mech
    • gregmech26
Re: 3 year post-CK follow-up
« Reply #8 on: October 13, 2015, 02:43:16 pm »
Thanks MCrue for the link.  I did not know what ABTA is referring to until I read your post, then looked it up.  This is why the ANA Forum is so awesome.  I am now following ABTA on Twitter, and signed up for two of their webinars.

You're welcome. They should both be most excellent.
5/19/2015 - 40% sudden hearing loss + tinnitus right ear

6/26/2015 - AN diagnosed by MRI - 14mm x 7mm + 3mm extension

8/26/2015 - WIDEX "ZEN" hearing aid for my catastrophic tinnitus

12/15/2015: 18mm x 9mm + 9mm extension (5mm AGGRESSIVE GROWTH in 5 months)

3/03/2016:   Gamma Knife - Dr. Sheehan

mwatto

  • Full Member
  • ***
  • Posts: 104
Re: 3 year post-CK follow-up
« Reply #9 on: July 10, 2021, 03:25:04 am »
Hi Novagirl how are you doing now - I am two and a half years post CK and doing well- except I still am not comfortable sleeping on that side- maybe the pressure- sets off nerve pain in the early hours. Other than that good hearing and balance. I also had 3 sessions and mine was just under 2cm.
Michele
20 x19x14mm AN diagnosed Feb 2019. Cyberknife .
Mri Oct 2019 showed shrinking to: 18x17x13 mm.
Mri Oct 2020 - no cystic components visible now. Slight shrinking, stable.

 


anything