Author Topic: Just diagnosed with left vestibular schwannoma  (Read 3035 times)

Betsyk

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Just diagnosed with left vestibular schwannoma
« on: August 25, 2021, 01:51:56 pm »
I was just diagnosed with a left-sided VS that measures 2×1.4 CM x 1:1cm. My only symptom is significant hearing loss in the left ear. I’ve had bilateral hearing loss for six years and wear hearing aids but over the last year my hearing test showed significant worsening in the left ear so that’s why I had the MRI. I’m calmer now after doing a lot of research. I am inclined to get it surgically removed. I am 59 years old and want to save whatever hearing I have in my left ear because I have some hearing loss in my right ear that is due to aging. Tomorrow I meet with a local specialist. I live in Denver. I’m also going to consult with Dr. Friedman at UCSD .  At this point my only consideration is who is going to do the surgery. Am I missing something? Radiation doesn’t seem like a good option since I still have to follow up with MRIs. Watching and waiting risks worsening hearing as well as developing other symptoms such as balance issues. I’ve made this decision after a week of research. I want it over. Am I being unreasonable?
MRI 8/18/21 left VS 2x 1.4cm, 1.1cm hearing loss and tinnitus. Seeing Dr Muckle 8/26; scheduling consult with Dr Friedman

Greece Lover

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Re: Just diagnosed with left vestibular schwannoma
« Reply #1 on: August 26, 2021, 12:24:49 pm »
So sorry to hear of your diagnosis. It's hard because there are so many different types of treatment modalities. So, you're not being unreasonable!
I would ask the docs what percentage chance they give on saving your hearing, and some of that depends on which of the surgical approaches they do (usually middle fossa has the best hearing outcomes, but not all tumors, due to size or location work with that approach).  The free consultation at UCSD is a great idea and will give you a good opinion of where things stand.
I, too, wanted it out and over and done with and so I'm glad I went with surgery. 
Good luck and let me/us know if we can help in any way.
 
Vestibular Schwannoma 1.2 cm. Right side.
Middle fossa surgery at University of Iowa on May 9 2016.
Hearing saved.  Face is fine. Balance pretty darn good most days.
One year follow up MRI showed no tumor. 
Five year follow up showed no tumor, so I'm in the clear.

notaclone13

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Re: Just diagnosed with left vestibular schwannoma
« Reply #2 on: August 26, 2021, 04:49:34 pm »
I think you’re making the right decision. You’re still relatively young and if you’re in good health and able to go to an experienced surgical team, being rid of the thing is the best option. I myself did watch and wait for 3 years, but it only got bigger. I finally had radiosurgery 3 months ago, but I am 10 years older than you and did not want to have major brain surgery during the Covid pandemic. I know of two ladies in their 70s that had surgery to remove large ANs and they both did fine. One had surgery with Dr. Friedman and had a very good outcome. Good luck with your decision and keep us updated.

Betsyk

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Re: Just diagnosed with left vestibular schwannoma
« Reply #3 on: August 27, 2021, 12:33:43 am »
In  meeting with Denver specialist he recommended Gamma Knife. He said that surgery would definitely result in hearing loss. GK would delay my deafness in my left ear AND prevent me from developing vertigo or balance issues or facial nerve issues.  I thought middle fossa removal could save my hearing. Waiting to talk to Dr Friedman. If Denver specialist is correct what is downside to GK?
MRI 8/18/21 left VS 2x 1.4cm, 1.1cm hearing loss and tinnitus. Seeing Dr Muckle 8/26; scheduling consult with Dr Friedman