Author Topic: Second radiosurgery?  (Read 1979 times)

notaclone13

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Second radiosurgery?
« on: August 04, 2024, 12:02:35 pm »
Has anyone had a second radiosurgery treatment because the first session did not work? I am 3.5 years post radiosurgery (3 sessions of Linac, 21 gy total) and I’m still experiencing significant growth and facial spasms. At my age, early 70s) surgical removal is not a good option. I know all too well that with more radiation, the risk of malignancy rises. However, to me the risks associated with surgical complications are more daunting.

mwatto

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Re: Second radiosurgery?
« Reply #1 on: August 04, 2024, 08:00:40 pm »
My specialist told me that if I get regrowth they will zap the non responding aspects of the AN. I am 63 years old.On the other hand I saw a neurosurgeon this year and he told me that he would easily be able to remove mine even though radiated if regrowth occurs (I saw him re I was getting this stabbing nerve pain in ear). As you are still within the 5 years Chang mentions on his video re response- it might be worth asking him? Just wondering if this is pseudoprogression.
« Last Edit: August 08, 2024, 10:47:56 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

DodgeAU

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Re: Second radiosurgery?
« Reply #2 on: August 05, 2024, 09:17:03 pm »
Hi, I had GK treatment 2.5 years ago and the treating doctors told me that in case there will be re-growth in the future, they will be able to perform another GK treatment. That was the re-assurance from them during the procedure.
Sep 2023: AN shrunk by 3mm
Jun 2023: Hemifacial spasm disappeared
Oct 2022: MRI shows no growth, hemifacial spasms started
Mar 2022: GK treatment at Peter Mac Melbourne
Dec 2021: 18mm x 10mm
Oct 2019:  12x7 mm, Watch mode
Mar 2019: 7.5x5.5 mm, Watch mode
Aug 2018: Diagnosed 6x4x4 mm AN left

DanFouratt

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Re: Second radiosurgery?
« Reply #3 on: August 07, 2024, 01:28:31 pm »
I had CK and the doctor said I could do it again if needed, I am 63. 

Dan
Dan Fouratt             63 years old
Vestibular Schwannoma
Discovered 9/15/21  5mm x 11mm
MRI 4/11/22            No change
MRI 1/9/23              7mm x 13 mm
MRI 6/19/23            No change
CK  9/15/23            
MRI 6/14/24            7mm x 12 mm

notaclone13

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Re: Second radiosurgery?
« Reply #4 on: August 07, 2024, 01:35:50 pm »
Good to know,where did you have CK?

UkulelesAreAwesome

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Re: Second radiosurgery?
« Reply #5 on: August 07, 2024, 05:01:03 pm »
I had GK 2 years ago. I was told if it fails my only option is surgery. For some reason they felt if it fails once, it'll fail twice. And failure is one thing I excel at.

DanFouratt

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Re: Second radiosurgery?
« Reply #6 on: August 08, 2024, 09:35:50 am »
I had it done at UNC,

To be frank I would go to Duke next time.  I believe UNC was very capable but I simply did not like the process and they way they treated a patient. My experiences at Duke for my heart were far better and they are very capable.
Dan Fouratt             63 years old
Vestibular Schwannoma
Discovered 9/15/21  5mm x 11mm
MRI 4/11/22            No change
MRI 1/9/23              7mm x 13 mm
MRI 6/19/23            No change
CK  9/15/23            
MRI 6/14/24            7mm x 12 mm

Derby

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Re: Second radiosurgery?
« Reply #7 on: September 10, 2024, 02:54:50 am »
Quote
with more radiation, the risk of malignancy rises

The time to malignant transformation is measured in decades. For someone in their 70s, this isn't a consideration. It's a much safer option than surgery.
May 2014  Sudden onset R sided Tinnitus, gradual R hearing loss
Nov 2023  MRI Dx 1.9 x 2.0 x 1.4 cm R vestibular schwannoma
May 2024  Hypofractionated SRS (3 x 6 Gy) Varian TruBeam
Aug 2024  Repeat MRI -- no change in size