Author Topic: Radiation next week and I am just a tad but nervous.  (Read 841 times)

JW123

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Radiation next week and I am just a tad but nervous.
« on: August 15, 2023, 05:46:12 pm »
Hey all.
Well the time for my radiation is finally approaching and I'm not supper thrilled about it. Mostly nervous about the possibility of facial weakness.
A little summary: Had a 3cm ish AN removed by surgery in 2011 at Mayo (I was in my mid 20's). At the time I had delayed facial weakness that came on a couple weeks after surgery and lasted for a month or so. Also had very bad headaches for years and still have them but less often. Lost hearing in AN side. But besides that, everything seemed to go pretty smoothly.

The tumor has been regrowing for a while now and was about 2cm at last check (6 months ago). I have opted for radiation at Mayo opposed to another surgery. I am most nervous about the possibility of facial weakness or facial movement issues. I was told that the previous delayed weakness makes me more susceptible to facial weakness from the radiation, which makes me very nervous.

This might be a question for people that have gotten facial weakness from radiation, but I am wondering how soon after radiation did people start seeing it effects of it? Is this typically very soon after, or something that progresses over a longer period of time?

I have read a few stories here and there from this forum from people process of radiation, and that has been nice. But any additional suggestions or advice for the community members that have gone through Gamma Knife is very welcome.

Thanks!
Left side VS - 2.0 x 2.7
Retrosigmoid on Oct 17th 2011
Surgery at Mayo Clinic with Dr. Link & Dr. Driscoll
SSD left side, delayed temporary facial weakness, ongoing severe headaches.

bri-82

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Re: Radiation next week and I am just a tad but nervous.
« Reply #1 on: August 16, 2023, 09:57:38 am »
We are similar. I think it depends on the orientation of the tumor and where they focus the radiation. I've had both surgery and radiation. Is the tumor attached to the facial nerve(s)? And did they remove the full tumor during your first surgery (it would seem not)? I had a bit of residual facial weakness after the GK treatment that came on months later but it improved with time. However, in cold water (surfing) my facial weakness was more apparent and folks say I get "stroke face" on my right side.
4.5 cm Right AN.
Sub-occip. Surgery 2011 @ Wash. Hosp. Center
Gamma Knife 2012 @ Wash. Hosp. Center
Translabrythine Surgery 2017 @ Johns Hopkins
Cyber Knife 2022 @ Johns Hopkins
Sub-occip. Surgery 2023 @ Johns Hopkins

mwatto

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Re: Radiation next week and I am just a tad but nervous.
« Reply #2 on: August 16, 2023, 11:12:00 pm »
Hi I never had any facial weakness at all, abt 90% hearing still after 4 years and my balance is fine. I had stabbing ear pain for years even prior to treatment but recently discovered that was TMJ! A dental splint has stopped the trigeminal type neuralgia - needless suffering for years!
« Last Edit: August 22, 2023, 08:02:35 pm by mwatto »
Michele
20 x19x14mm Cystic AN diagnosed Feb 2019. CK.
Mri 2019 shrinking: 18x17x13 mm.
Mri 2020 - no cysts visible stable.
MRI 2021 stable no change
MRI 2022 stable no change.
MRI 2023 Further reduction 12x12x10mm!! Hearing 85%
MRI 2024: No change AN or hearing

JW123

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Re: Radiation next week and I am just a tad but nervous.
« Reply #3 on: August 21, 2023, 08:10:01 pm »
We are similar. I think it depends on the orientation of the tumor and where they focus the radiation. I've had both surgery and radiation. Is the tumor attached to the facial nerve(s)? And did they remove the full tumor during your first surgery (it would seem not)? I had a bit of residual facial weakness after the GK treatment that came on months later but it improved with time. However, in cold water (surfing) my facial weakness was more apparent and folks say I get "stroke face" on my right side.
No, the tumor is not on the facial nerve. They thought they has removed the full tumor at the time of surgery.

Hi I never had any facial weakness at all, abt 90% hearing still after 4 years and my balance is fine. I had stabbing ear pain for years even prior to treatment but recently discovered that was TMJ! A dental splint has stobbed the trigeminal type neuralgia - needless suffering for years!
Thats good to hear about not having any facial weakness or much hearing loss! Glad they figured out the TMJ!
Left side VS - 2.0 x 2.7
Retrosigmoid on Oct 17th 2011
Surgery at Mayo Clinic with Dr. Link & Dr. Driscoll
SSD left side, delayed temporary facial weakness, ongoing severe headaches.

mwatto

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Re: Radiation next week and I am just a tad but nervous.
« Reply #4 on: August 22, 2023, 08:04:10 pm »
JW the other good thing is that mine has shrunk by half after CK 4 and a half years ago. I have honestly had no real side effects (that I know of). Good luck with yours.
Michele
20 x19x14mm Cystic AN diagnosed Feb 2019. CK.
Mri 2019 shrinking: 18x17x13 mm.
Mri 2020 - no cysts visible stable.
MRI 2021 stable no change
MRI 2022 stable no change.
MRI 2023 Further reduction 12x12x10mm!! Hearing 85%
MRI 2024: No change AN or hearing