Author Topic: repeat GK and other procedures  (Read 2506 times)

ann232

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repeat GK and other procedures
« on: June 14, 2022, 04:17:30 am »
Hi.  I have been reading through others' journeys through the GK and CK and I am curious why there are so many repeats over 6 month MRI's to years??  Some of the tumors grow and have to be redone again.  Some keep growing throughout the years and yet nothing is done.
Just curiousl
Hope this makes sense!
Ann

donjehle

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Re: repeat GK and other procedures
« Reply #1 on: June 14, 2022, 02:18:07 pm »
Hi Ann!

And thank you for making your first post on the ANA Forums!

I am not sure if I understood your question.  Were you asking why there are so many repeat MRIs for GK and CK patients?  If so, unlike surgery where the neurosurgeon can physically remove the tumor, the only way to know if the CK or GK was successful is by doing repeat MRIs.  Often with radiation, the acoustic neuroma initially swells which may indicate that the CK or GK is making a difference.  Some specialists may not want to do an MRI soon after the procedure as it may not be helpful initially as the tumor grows because of the swelling.  But MRIs taken later can show that the tumor has stopped growing.  In some cases, the tumor may even shrink a little.  So, repeat MRIs can provide evidence that the radiation, indeed, worked.

Occasionally, the radiation did not do what it was supposed to do.  Then, repeat MRIs can show that the tumors have continued to grow.  At that point, the question is whether to repeat the CK or GK, or more commonly, to have surgery and physically remove the tumor.  Every once in a while, the GK or CK can harden the tumor without actually killing it.

Surgery is not always successful on the first attempt, either.  Sometimes the neurosurgeon is hesitant to remove the complete acoustic neuroma because it has attached itself firmly to an auditory or facial nerve.  So, the neurosurgeon may elect to leave part of the tumor in place and treat it later with CK or GK rather than to completely remove the tumor and create significant issues for the pt.  It is a little tricky sometimes.

What is so strange about acoustic neuromas is that everyone's journey is a little different.  Some people can have an acoustic neuroma that does not grow in many years.  So, they can have MRIs for several years, and there is no growth.  Others can have significant growth in six months.  And usually the best way to determine the growth is by repeat MRIs, not by symptoms.  Symptoms can become considerably worse without a change in the size of the AN.  So, repeat MRIs continue to monitor the growth or non-growth of the AN.

I am not sure that I answered your question.  And I am just sharing my understanding of it.  I certainly am not a physician or a specialist.  I continue to try to learn more about it, just as you do, Ann.
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.

SheilaNelson

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Re: repeat GK and other procedures
« Reply #2 on: April 24, 2023, 09:53:22 am »
Hi.  I have been reading through others' journeys through the GK and CK and I am curious why there are so many repeats over 6 month MRI's to years??  Some of the tumors grow and have to be redone again.  Some keep growing throughout the years and yet nothing is done.
Just curiousl
Hope this makes sense!
Ann
Your question is understandable. The reason why some patients may undergo repeated MRI scans every 6 months to a few years is to monitor the progression or growth of a tumor. In some cases, if the tumor is found to be growing, then a repeat MRI may be necessary to assess its size and location more accurately.

However, in some cases, tumors may be slow-growing or non-cancerous, and may not require any immediate intervention. In such cases, the doctor may choose to continue monitoring the tumor through regular MRI scans to ensure that it does not grow to a size that can cause problems.

It's important to note that every patient's situation is unique, and the frequency and timing of repeat MRI scans will depend on various factors, including the type of tumor, its size and location, and the patient's overall health status. Ultimately, the decision to repeat MRI scans will be made by the patient's doctor in consultation with the patient.

mwatto

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Re: repeat GK and other procedures
« Reply #3 on: April 24, 2023, 07:47:39 pm »
I have annual MRI (non-contrast) and I guess its just reassuring to see it shrinking over time and no new issues. It is also to rule out the lattter eg no development of one on the other side or changes. At 5 years apparently its considered a success or failure. However in the most cases also said to be stable. Radiation is not a quick fix. Over time also there may be other changes eg to hearing and so being monitored (I also have annual audiology) gets onto this in good time.
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