Author Topic: Radiation concerns  (Read 425 times)

TrueClarence

  • New Member
  • *
  • Posts: 6
Radiation concerns
« on: June 12, 2021, 02:44:14 pm »
Hi ANers,
I was recently diagnosed with 2.1cm AN on my left side after having some hearing loss. I am 42 yrs old and also have some balance issues for a number of years, even before the hearing loss, but didn't realize what had been causing those until I learned about acoustic neuromas. I am still able to talk on the phone in my left ear and am definitely leaning toward radiation over micro surgery because radiation has a higher likelihood of preserving hearing. However, i was a little disappointed to hear the radiologist I consulted with indicate that my hearing will likely decrease at the same rate it would if my tumor was left untreated. Based on audiograms I've had done over the last several years, I'm estimating that I'd probably lose serviceable hearing by 5 years. I would love to hear about other radiation patients' hearing outcomes.

Also, some posts on this forum have mentioned that balance outcomes with radiation may not be as favorable as with microsurgery. Perhaps this is because in microsurgery often the damage balance nerve is cut and the brain begins only working off the other side, whereas with radiation the brain continues to receive input from the damaged balance nerve. I know that with both microsurgery and radiation, vestibular therapy is key and can help most folks get back to where they were, or better, before treatment. But I wonder whether radiation is less advantageous at the outset of starting vestibular therapy and would love to hear others thoughts on this.

Last, I've read that the delay between radiation treatment and when it actually takes effect on the tumor (sometimes 6-18 mos) can allow the tumor to continue to grow and/or harm balance and hearing.

Thank you so much for your help!
John

SP

  • Full Member
  • ***
  • Posts: 141
Re: Radiation concerns
« Reply #1 on: June 13, 2021, 05:41:13 am »
Hi John,

I had a large AN tumor diagnosed in 2014 (3.0cm) and at the time my hearing and balance were completely normal!

I had Cyber-knife radiation treatment in 2015, after this I had a gradual decrease in my hearing on the left hand side. i have lost approx 40% in that ear now and wear a hearing aid to assist. The other option for me at the time was Translab surgery which would have resulted in 100% hearing loss on the left plus a bunch of other risk factors I did not want to risk.

Overall my balance is Ok, although I notice a difference when doing yoga-- a bit wonky on one side, but it does get better with more yoga practice.

Stella

2.9 x 2.9 x 2.5cm Left AN (May 2020) @5yrs
2.9 cm (Mar 2019) @4yrs
2.9 cm (Aug 2018) @3yrs
3.1 cm (Aug 2017) @2yrs
3.2 cm (Aug 2016) @1yr
3.2 x 3.0 x 2.5cm Left AN (Aug 2015) ==> CK @ Stanford, August 17-19, 2015 (Drs. Chang & Soltys)

gbly

  • Jr. Member
  • **
  • Posts: 67
Re: Radiation concerns
« Reply #2 on: June 13, 2021, 09:15:16 pm »
TrueClarence,
Every one has to decide what works best for them. I was told that radiation and surgery would both impact the hearing.  Surgery would completely take my hearing, but radiation had a chance to maintain what I went in with.  I had lost it literally overnight, woke up and could not hear anything, freaked me out for sure.  I will say the few days before I noticed what sounded like cicada bugs on that side, and then wham, nothing.  So that is how I found out.  balance was off and on right after, but not as bad as some, thankful on that.

If you are in the PNW, OHSU Dr. Jaboin is fantastic for Proton Therapy.
Everyone has to decide and good luck, keep us posted.  I would do the Proton again without hesitation.

Left ear AN
.4 cm - April 2019
.7 cm - Aug 2019
1.7 cm AN - Aug 2020
Sept 2020 start 3 rounds of Proton Therapy
Total dose of 2100 cGy (centigray) in three separate doses of 700 cGy each.
Feb/March MRI showed narcosis in the tumor!

TrueClarence

  • New Member
  • *
  • Posts: 6
Re: Radiation concerns
« Reply #3 on: June 13, 2021, 10:27:31 pm »
Thanks Stella. I'm curious, did you notice your imbalance issues begin during the 2 years after radiation? I'm wondering how often patients undergoing radiation have tumor growth that continue to damage balance and hearing before the radiation takes effect and stops the tumor growth. Glad to hear that you have managed your imbalance for the most part - yoga seems like a great way to do that.

Gbly, thanks for your response. Did you end up losing all hearing in that ear? And curious how your balance was before treatment and then after.
Thanks
John

mwatto

  • Jr. Member
  • **
  • Posts: 94
Re: Radiation concerns
« Reply #4 on: June 14, 2021, 03:28:41 am »
Hi I had a 2cm AN radiated with CyberKnife about 2 and a half years ago - my hearing seems almost fine as is my balance. I do walk every day and I often do fun things such as watch a bit of TV standing on one leg! Certainly I feel normal apart from very occasional earache which I had pre-treatment. In my case the radiation oncologist said that surgery was a risky option and would have been very long. I am 60 years old and so far so good. I do work on keeping inflammation down in my body every day. I do have worse sleep...wake up a lot not sure if thats an issue with anyone either. My three sisters no AN have it also. I know another person here in Perth who had CK a year ago for a very small AN and she has a hearing aid recently (she trialing one) tho she had hearing issues early on. I had three sessions. These  days hearing aids so discreet -my friends is the new phonak and its tiny in ear.
Michele
20 x19x14mm AN diagnosed Feb 2019. Cyberknife .
Mri Oct 2019 showed shrinking to: 18x17x13 mm.
Mri Oct 2020 - no cystic components visible now. Slight shrinking, stable.

SP

  • Full Member
  • ***
  • Posts: 141
Re: Radiation concerns
« Reply #5 on: June 15, 2021, 10:40:12 pm »
Hi John,

The tumor is typically slow growing (1-3mm/year), given I had no balance or hearing issues prior to treatment of a large tumor that was already displacing the brainstorm, I don't think that potential growth impact was a concern. Sometimes tumor swelling can occur, this is usually transient and a side effect of the radiation.
I did notice some balance (& mostly feeling weird in the head ) issues in the weeks after CK, that took around 18 months to become minimal.

take good care

Stella
2.9 x 2.9 x 2.5cm Left AN (May 2020) @5yrs
2.9 cm (Mar 2019) @4yrs
2.9 cm (Aug 2018) @3yrs
3.1 cm (Aug 2017) @2yrs
3.2 cm (Aug 2016) @1yr
3.2 x 3.0 x 2.5cm Left AN (Aug 2015) ==> CK @ Stanford, August 17-19, 2015 (Drs. Chang & Soltys)

gbly

  • Jr. Member
  • **
  • Posts: 67
Re: Radiation concerns
« Reply #6 on: June 18, 2021, 06:41:43 pm »
John,
I had some vertigo before, but I am lucky and don't have it anymore.
Are you thing of the way to go?

 


anything
anything