Any experience with ganglion cyst misdiagnosed as acoustic neuroma?

Posted by brchristian @brchristian, Apr 24 8:54am

My daughter just had middle cranial fossa surgery for what multiple MRIs indicated was an acoustic neuroma. The surgical team was surprised to find that the growth around her vestibular and auditory nerves was not an acoustic neuroma but a ganglion cyst. It is extremely rare to have a ganglion cyst in that location. I am interested to know if anyone else has had that experience.

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thomhorowitz | @thomhorowitz | Apr 26 12:05pm

No, a good neuroradiologist should review the images.

Colleen Young, Connect Director | @colleenyoung | May 4 10:07pm

@brchristian, were they able to remove the cyst? How is recovery going?

brchristian | @brchristian | May 5 5:16am

In reply to @colleenyoung "@brchristian, were they able to remove the cyst? How is recovery going?" + (show)

Thanks Colleen. We actually are still waiting for the biopsy to confirm that it was a ganglion cyst. It was not a neuroma for sure. It was not an ideal situation. The "cyst" was wrapped around the cochlear nerve, the vestibular nerve and was threatening the facial nerve. They were able to protect the facial nerve but she did lose hearing in her right ear. She is obviously disappointed by that but is adapting to her new situation and actively looking for ways to deal with it. She is now monitoring this channel and aso the Mayo hearing loss channel. Brian

brchristian | @brchristian | May 5 9:41am

In reply to @brchristian "Thanks Colleen. We actually are still waiting for the biopsy to confirm that it was a..." + (show)

Sorry Colleen. I didn't actually answer your question. No, they did not remove it. They couldn't do that without risk to the facial nerve. But if its a ganglion cyst, the concern seems to be lower that it is a long-term threat. So the doctors are just proposing an annual MRI to monitor it.

By the way, our daughter will be back in the US in August. We might like to get a second opinion from Mayo on how to manage the situation going forward. How should we proceed? Thanks!

Colleen Young, Connect Director | @colleenyoung | May 5 10:38am

In reply to @brchristian "Sorry Colleen. I didn't actually answer your question. No, they did not remove it. They couldn't..." + (show)

@brchristian, to submit a request for a second opinion, start here: http://mayocl.in/1mtmR63

You may want to start the process before her return in August.

I'm glad that you and daughter are following both the Brain Tumor group and the Hearing Loss group here: https://connect.mayoclinic.org/group/hearing-loss/

There's a lot of support and knowledge from members in both groups.

Colleen Young, Connect Director | @colleenyoung | Jul 10 9:25am

In reply to @brchristian "Sorry Colleen. I didn't actually answer your question. No, they did not remove it. They couldn't..." + (show)

@brchristian, I thought I would check in. How is your daughter doing? How are you doing?

brchristian | @brchristian | Jul 10 3:37pm

In reply to @colleenyoung "@brchristian, I thought I would check in. How is your daughter doing? How are you doing?" + (show)

Colleen, thank you so much for following up. For some reason, I missed your previous note on May 5 even though I had my eye out for it. 🙁 Simultaneously, in early May, I started to reach out to the neurosurgery department right here in Ann Arbor. I was pleased to find a doctor that is very accomplished with acoustic neuromas, which still feels like the right destination even though it turned out to be a ganglion cyst. I am trying to get him to take my daughter's case. I have given him all of Sophie's records. If I fail to get them to take up her case, I may still pursue the Mayo option. Thank you for the instructions in your previous note. Just to be clear, my missing your May 5 note didn't change my course of action. I was always going to lean toward the University of Michigan if they had the right neuroma specialist. They did and now I just need them to take her case.

Thanks again,
Brian