Author Topic: CK or surgery  (Read 2377 times)

ErikWilson

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CK or surgery
« on: December 15, 2021, 09:20:54 am »
Hi everyone,
I'm 49, was diagnosed with an AN in July 2021 1.5 cm x .9 cm since that time it has been growing quickly so that now it measures 2.4 cm so nearly 1 cm.  I am based in Ireland and my 2 neurosurgeons are very biased towards CK, telling me this is the international choice for tumors under 3 cm.  However I have also gotten 2 other overseas opinions and they advise against CK, the reasons being my age and the fact that the tumor appears to be aggressive, they've also told me that CK will make the tumor more difficult down the road to remove leading to further complications!  Going aboard is not an option.  My questions are: is there people here who've had a long term solution with CK? Was the outcome positive? I'm terrified that it will make my symptoms worse? hence the reason why I have been delaying and delaying....thanks so much for any advice

MarlaB

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Re: CK or surgery
« Reply #1 on: December 15, 2021, 10:19:20 am »
I know I have interacted with another AN patient from Ireland, I'm not sure where she received treatment or what treatment she had but I wonder if there are other treating facilities that are near you?? I hope others pipe in to your request.

Wishing you the best.

Marla B.

CA Marti

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Re: CK or surgery
« Reply #2 on: December 16, 2021, 12:10:01 pm »
Hi Erik,

I haven’t used CK but I can tell you what a radiologist said about aggressively growing tumors. I specifically asked him what the control rate is for aggressively growing tumors and he said that the tumor control with gamma knife is not as good for those and is something like 70 % control and so surgery may be the better option for that. I’m not sure if cyberknife is different, but you may want to ask them specifically what the tumor control rate for aggressively growing tumors is. I also read an article about this as well and will send you the link if I can find it.
Best wishes,
Ca Marti
« Last Edit: December 16, 2021, 12:30:30 pm by CA Marti »
Marti


Diagnosed 5/28/2021 10.5mmX8.5mmX6mm
Next MRI   11/22/2021 10mmX8mmX6mm
MRI           12/9/2022   5mmX6mmX7mm

CA Marti

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Re: CK or surgery
« Reply #3 on: December 16, 2021, 12:28:18 pm »
The article was from JNS and the title was “Pretreatment growth rate as a predictor of tumor control following Gamma Knife radiosurgery for sporadic vestibular schwannoma” Michael Link MD among others.

It said that if there was more than 2.5 mm growth per year (faster growing) then the tumor control rate was 69%.   “patients who demonstrated a pretreatment growth rate of < 2.5 mm/year exhibited a 97% tumor control rate , compared with 69% for those demonstrating  >2.5 mm/year of growth prior to SRS.”
Conclusions:…….”SRS is less successful in treating tumors exhibiting rapid growth (>2.5 mm/year).”
« Last Edit: December 16, 2021, 12:32:05 pm by CA Marti »
Marti


Diagnosed 5/28/2021 10.5mmX8.5mmX6mm
Next MRI   11/22/2021 10mmX8mmX6mm
MRI           12/9/2022   5mmX6mmX7mm

Greece Lover

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Re: CK or surgery
« Reply #4 on: December 17, 2021, 09:25:39 am »
Sounds like you might want to get a second opinion of possible.
Another factor is your hearing.  With small tumors and patients who still have decent hearing, surgery can be a long-term hearing preservation option. One of the best weeks of my life I spent on the western tip of the Dingle Peninsula in January.  Beautiful hiking and pubs!

Good luck!
Vestibular Schwannoma 1.2 cm. Right side.
Middle fossa surgery at University of Iowa on May 9 2016.
Hearing saved.  Face is fine. Balance pretty darn good most days.
One year follow up MRI showed no tumor. 
Five year follow up showed no tumor, so I'm in the clear.

 


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