Author Topic: Watch/wait or Surgery? (Tentative surgery date in 3 weeks)  (Read 396 times)

JKnotdobbins

  • Newbie
  • *
  • Posts: 2
Watch/wait or Surgery? (Tentative surgery date in 3 weeks)
« on: November 16, 2017, 10:35:45 pm »
Hi All,

First of all this forum has been invaluable to me up to this point. This is my first post but I've been lurking for a few months. Several weeks ago I actually reached out to a forum member after reading his great post. He instantly gave me his cell phone & he has been an incredible resource for me to talk to & text. He had successful surgery with Dr. Friedman about a year ago & he personally put me in touch with Dr. Friedman.

I've been blessed all my life with good health but was diagnosed with an AN measuring 14x18x13mm in August of this year. It is located in my left CP angle. I've met with a local surgeon in Ohio, Dr. McKenna in Boston and had phone consultations with Friedman/Schultz at UCSD and Miller/Lekovic at House. After spending hours a day doing research & talking to numerous doctors I have tentatively decided to have surgery on December 1st with Dr. Friedman & Dr. Schwartz but now I'm having some second thoughts on possibly switching to Watch & Wait. I'm incredibly confident with Dr. Friedman & Dr. Schwartz but can't help but wonder if I should watch & wait instead for hearing purposes. My hearing is only slightly affected in my left ear at this point...although my wife would disagree a little but some of that may be listening skills  :) My hearing is only affected at high frequencies.

Only Dr. McKenna in Boston was adamant about not doing surgery yet. My doctor at Ohio State wanted to do translab or retro fairly soon although he does very few retrosigs so he was pushing translab the entire time. Friedman/Schwartz & Miller/Lekovic all recommended retro sigmoid surgery, but did admit that watch/wait & even radiation was an option if I wanted at age 47.

I was told retro sigmoid surgery will give me about a 50% chance of preserving my hearing. Do I take that chance to preserve now or watch & wait? Even if the tumor doesn't grow, I'm told by all doctors that my hearing will deteriorate over time. I've not had any other symptoms except some small balance issues and one episode of vertigo.

Any feedback is welcome!

Thanks,
JK
« Last Edit: November 18, 2017, 10:36:14 pm by JKnotdobbins »
Diagnosed left AN in August 2017
8/17 measured 14x18x13mm
Located in CP angle

alabamajane

  • Hero Member
  • *****
  • Posts: 572
Re: Watch/wait or Surgey? (Tentative surgery date in 3 weeks)
« Reply #1 on: November 17, 2017, 07:28:59 am »
Welcome JK,
W&W is definitely the conservative approach and sounds like a viable option for you at this point. 
These tumors are usually slow growing so there is time for research and testing and observation of symptoms.

Perhaps one of your doctors would agree to another MRI in about 6 months to see if there are any changes in size and or symptoms. If you are still doing well,, perhaps you would be comfortable waiting another 6 months to observe things,,,, many people follow this plan.

Only you can decide how you want to proceed. You don’t seem to have many symptoms which are affecting your quality of life and your hearing will deteriorate with time probably but treatment usually has consequences for hearing also.
 
Everyone handles these tumors differently depending on their situation and personalities,,, some want it out immediately and others are comfortable waiting. There is no wrong answer and that makes it difficult for many. Take your time to be sure you are comfortable with your decision and then move forward. Best wishes as you proceed,,,,
Jane
translab Oct 27, 2011
facial nerve graft Oct 31,2011, eyelid weight removed Oct 2013, eye closes well

BAHA surgery Oct. 2014, activated Dec. 26

ANSydney

  • Hero Member
  • *****
  • Posts: 562
Re: Watch/wait or Surgery? (Tentative surgery date in 3 weeks)
« Reply #2 on: November 20, 2017, 03:43:27 am »
Jane and Dr McKenna have given you good advice with watch and wait. Friedman/Schwartz & Miller/Lekovic, have given you the option of watch and wait.

Two-thirds of these tumor have stopped growing by the time they are diagnosed ( http://acusticusneurinom.dk/wp-content/uploads/2015/10/natural-history-of-vs.pdf and https://www.bhtinformatie.nl/pdf/ingrijpen.pdf ). Even less grow significantly and only 7% need treatment ( https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1502035/pdf/sbs16095.pdf ).

With a vestibular schwannoma, hearing suffers no matter what is done. Even if the tumor does not grow, hearing can deteriorate. Surgery and radiosurgery only accelerate this process as one of the cited papers shows.




« Last Edit: November 20, 2017, 04:31:27 am by ANSydney »

 


anything