Author Topic: Had Gamma Knife 15 years ago. Tumor growing again.  (Read 2277 times)

PCS1954

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Had Gamma Knife 15 years ago. Tumor growing again.
« on: June 30, 2022, 11:28:52 am »
Looks like surgery is in my near future.  Appreciate any experiences you can share.

donjehle

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Re: Had Gamma Knife 15 years ago. Tumor growing again.
« Reply #1 on: June 30, 2022, 07:10:17 pm »
Wow!  I am so sorry to hear that your tumor is growing again after you had GK 15 years ago.  That news had to be crushing!  I would have thought that it was dead for sure after all this time.  I understand that there have been great improvements in surgery and radiation in the last 15 years, so hopefully your experience this time will be better than what you experienced 15 years ago.  I would love to hear the rest of your story, where you had your GK done, what your side effects were, if any, and how you found out it was growing again.  What approach will you take in your surgical treatment?  Thanks for sharing!
Burning Tongue, Loss of Hearing & Balance, and Tinnitus led to MRI. Very small AN found on 11/23/2021
While watching and waiting, lost significant hearing. WRS now at 12% (down from 100%). Was fitted with CROS system on 3/7/22.  Stable MRI on 7/29/22
No treatment yet.

mwatto

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Re: Had Gamma Knife 15 years ago. Tumor growing again.
« Reply #2 on: July 03, 2022, 09:00:18 pm »
Hi I am wondering if its neuro inflammation driving regrowth. I am on LDN, sulforaphane, fucoidan, boswellia, melatonin and now and again bromelain...and looking into resveratol. I had a flare of symptoms after the Pfizer jab- am much improved 8 months on but have read that inflammation specifically IL6 can affect the PAK-1 pathway and this in turn can cause issues. Might be worth seeing a functional doctor and trialling some things aimed at calmimg the brain. I know also that tamoxifen and even low dose aspirin and mifpresterone are drugs of interest. Because what we have is essentially a myelination disorder there are some things that might help. Strss, lack of sleep, diet etc  all factors.   https://academic.oup.com/neuro-oncology/article/21/3/314/5155625
Many natural compounds work on this...
« Last Edit: July 03, 2022, 09:18:59 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

gbly

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Re: Had Gamma Knife 15 years ago. Tumor growing again.
« Reply #3 on: May 01, 2023, 02:19:39 pm »
PCS1954,
Sorry to hear that your AN is back.  What surgery are they looking to do?  I have heard that the AN can be "sticky" after radiation.  Any info from the doctor on this or if they expect a "normal" procedure?

Good luck and keep us posted please.
GB

bfoley

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Re: Had Gamma Knife 15 years ago. Tumor growing again.
« Reply #4 on: May 03, 2023, 04:03:45 am »
Hi PCS 1954 -

I had gamma radiation in 2019 with Dr. Link at Mayo.  2022 MRI confirmed tumor was growing again (and by 3-4 mm from the prior year MRI).  With the amount of growth in the short time, we all agreed a second dose of gamma would likely not have any different outcome in stopping growth.  I had translabyrinthine surgery this (2023) January with Dr. Link and Dr. Neff at Mayo.  The tumors become harder to remove the more times it is radiated.  The tumor was removed completely. Pathology showed it was definitely viable (alive and growing).

Everyone is different.  Your individual situation, with it being so long since radiation, might be a contributing factor. makin sure you are comfortable with your care team and the choice of action was my first priority.  Things went very well for me.  I am happy to chat if you want any other details about my personal journey. 

Take Care!!!