Author Topic: CK update  (Read 488 times)

DanFouratt

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CK update
« on: June 14, 2024, 02:21:33 pm »
I finally had my 6-month post CK follow up at a mere 9 months. A little OHS came in the way.  I went back to my ENT for long term follow up.  I have previously posted the Oncology department at UNC is not patient friendly. That aside my tumor was marginally smaller, good news.  Dr. Brown was very satisfied.  I have a year break! I am so glad I went radiation in the fall. Dr. Brown, no so much, but support my decision and was part of the radiation team.

I asked about dropping the contrast, long story short it is easier to drop contrast if you have radiation.  I was told I no longer needed it! 😊 Next meeting with him in 12 months.

Next event for me is in 30 days for his OHS review. This was made possible by the radiation decision. I would not have be able to do the stress test in December, that led to OHS in March and a great recovery form that.

Thank you for your support through the years.

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

mwatto

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Re: CK update
« Reply #1 on: June 14, 2024, 08:22:16 pm »
Dan I am so happy for you! And also glad re no contrast :-)
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

DanFouratt

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Re: CK update
« Reply #2 on: June 15, 2024, 02:07:24 pm »
Thanks,

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

UkulelesAreAwesome

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Re: CK update
« Reply #3 on: June 16, 2024, 04:21:58 pm »
Congratulations! That first post radiation MRI is scary. The positive outcomes give the rest of us hope for the future.
Left sided AN diagnosed April 2022
Gamma Knife August 2022 - AN 1.6 x 1.1 cm
Aug 2023- stable
April 2024 - 1.7 x1.3 cm
Mild ventriculomegaly

DodgeAU

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Re: CK update
« Reply #4 on: June 17, 2024, 03:55:35 pm »
Good to hear your progress Dan. I'm on the second year post GK and wish to drop the contrast as well. I hope I can convince the local MRI staff  ;D
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

mwatto

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Re: CK update
« Reply #5 on: June 18, 2024, 11:00:13 pm »
Dodge I am in Perth. I just said if anything is flagged then sure I will come back and have the contrast - everyone agreed this was sensible. The MRI technician  and my specialist. In any event good to know your renal function if you must have it. Imaging is way superior these days to what it was. And after radiotherapy its more about tracking and comparison every year I was told.
« Last Edit: June 18, 2024, 11:01:45 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: CK update
« Reply #6 on: June 19, 2024, 01:59:48 am »
Thanks Michelle, I will tell the MRI team here in Sydney when Im due for one in September this year. All the best
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: CK update
« Reply #7 on: June 19, 2024, 02:37:41 pm »

My doctor said tell them team you do not need it and do not let them change your mind. be firm.  Trust me
I will be!  Good Luck.
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