Support and advocacy for Acoustic Neuroma (Vestibular Schwannoma) and hearing loss (especially single sided deafness)


New Treatment Clinical Trial for Acoustic Neuromas

Historically, there were only three options for people diagnosed with an acoustic neuroma or vestibular schwannoma. The first is to watch and wait. This is typically for smaller or less symptomatic tumors and entails regular MRIs to monitor tumor growth. The second option is radiation. Radiation is used for tumors up to 2.5-3 cm in size. It can be administered in one dose or a series of doses. The goal of radiation is to arrest tumor growth. The last option is surgery to remove the tumor. There are three surgical approaches that can be used depending on the size and location of the tumor.

Now, there is a new clinical trial starting for a new treatment option. This treatment utilizes gene therapy. The goal of the treatment is to stabilize or improve the hearing and/or shrink the tumor size for people diagnosed with an acoustic neuroma. Akuous / Lilly is running this trial. You may have heard about their other gene therapy work to restore hearing in a deaf child. https://www.sciencealert.com/breakthrough-deaf-boy-can-hear-after-first-gene-treatment-in-us

This is very exciting news, that there is a possibility for an acoustic neuroma treatment that improves hearing down the road. Currently, with the three options we have (watch and wait, radiation, and surgery), the best result a person could hope for would be for the hearing loss to not progress. For most people diagnosed with a vestibular schwannoma, the outcome is increased hearing loss. People with acoustic neuromas frequently lose all hearing in the affected ear. Improved hearing would be an amazing outcome.

That being said, this is only in clinical trial phase so we don’t have this as a general treatment. We also don’t have data on many important details like efficacy. They are actively looking for participants for the trial. I am linking information for the trial below, which includes the criteria for participation as well as locations for the trial.

https://www.vsclinicaltrial.com/

https://clinicaltrials.gov/study/NCT06517888

If you are interested in helping the medical community learn more about acoustic neuromas but you can’t or don’t want to be a part of the Akuous / Lilly research trial, I recommend checking out the link below which takes you to the Acoustic Neuroma Association’s list of current research studies. Many of these are as simple as filling out a digital survey. I love being able to be a part of finding more solutions and information.

https://www.anausa.org/resources/research/an-research

It’s really exciting to see new research and advancement in treatment for vestibular schwannomas. I would love for future patients to have even better outcomes and options for treatment. I hope that we see successful new developments coming soon.



2 responses to “New Treatment Clinical Trial for Acoustic Neuromas”

  1. supercreation2813fecb03 Avatar
    supercreation2813fecb03

    Thanks so much for this info. Best to you today!CherylSent from my iPhone

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    1. You are very welcome!

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About Me

Emily was diagnosed with a brain tumor at age 27 and decided to make that experience worthwhile by paying it forward to other brain tumor warriors. She is passionate about supporting people and advocating for hearing assistance around motherhood and running a family business.