fast growing AN

[carriekartman]

I want to share my current status, in case it helps others who are considering their options. My AN was diagnosed on 10/23/23, at 12 mm x 6mm x 6mm. I had already lost a lot of hearing, but what remained was important to me (word discrimination 30%, quite a bit of pitches still registering), and my balance and vertigo were impacted, but improved with PT. Within 2 months I had a swift increase in symptoms, lost all hearing, and MRI in mid-February showed tumor at 14 mm x 7 mm x 8 mm. It was ONLY measured because I was moving forward with prep. for SRS. The doctors would not do another scan for me sooner than 6 months, except as part of my upcoming treatment. So this is a reminder: not all ANs are slow growing! I truly wish I had decided on my treatment and treatment team sooner, and moved ahead, rather than believing I had "plenty of time," which we are constantly told. Please remember that smaller tumors have better success rates, and the best outcome you can expect from SRS, is the level of hearing you went in with.

[DanFouratt]

Thanks for sharing and good luck on your upcoming procedure.  It was the best move I made when I decided to go forward with my treatment.

[DodgeAU]

Prior to my treatment, I was also in the fast growing AN category. Discovered at 6mm and it was growing at an average of 6mm a year. Been hoping that it will eventually stop growing at some point but it did not stop in 3 years!!. After the 3rd year it was already 18mm and finally decided to have a GK treatment. I suggest not to wait and watch for long period of time if the growth rate is more than 2mm per year in consultation with your doctors. Personally I regret waiting for 3 years to get treatment although I was able to speak to multiple AN specialists and really make a decision as to what is best for myself. 

[carriekartman]

Thank you Dan and Dodge! It helps to hear (ha, ha, wouldn't it help to really be able to hear?) that other tumors grow quickly, as I've been perplexed by so much messaging from multiple doctors, to the contrary. I'm 3 days away from my first fractionated zap, and really it feels like Christmas and a birthday rolled into one.

[DanFouratt]

Carrie,

Good luck with your zap. I literally could have drove there and back home after my zap.  My wife had a different opinion. It will go well.

Dan

[mwatto]

Carrie I had fractionated CK am at 5 years and it has shrunk a lot in that time. Hearing and balance is good.

[carriekartman]

Hi Michele,

Wow, good for you. I assume your hearing and balance were good prior to SRS? Mine are not, sad to say. Balance is slowly improving, but my hearing is gone. I have one zap done, so I'm on my way: 4 to go.

Carrie

[DanFouratt]

Carrie,

My hearing was not good before and it is still not good.  My balance was good before and it got a little worse right after the procedure but back to good a month later.

Dan

[mwatto]

Hi Carrie I recently saw a neurosurgeon just for a chat. He said mine is more a vestibular schwannoma maybe why my hearing not that affected. My balance seems ok tho so far (I did fall and fracture my sholder 6 months after CK 5 years ago so who knows). I dont get vertigo.
What I do get is stinging nerve pain behind eye, deep in ear, head that side pre and post treatment during the night. Now thinking its the AN shrinking as seems no other reason (have consulted many many people on this over the years).