My AN Story 2015 Sydney to Stanford CK

[Gtmochi]

Hi Stella!

Oh my gosh, I just read your update -- what terrific news! Though you got it a while ago, you still must be over the moon. I am so happy for you, and glad to know you are doing great!

Jessica

[SP]

Hi Stella!

Oh my gosh, I just read your update -- what terrific news! Though you got it a while ago, you still must be over the moon. I am so happy for you, and glad to know you are doing great!

Jessica

Thank you Jessica !!!! -- yes no news sine then,  is good news for me 

be well
Stella

[mwatto]

Hey Stella! Glad all still going well- me too! 

[Maystro]

Hi here. I am new to the group.
I am reading your updates and seeing that your tumor size was quite big. Mine is 25 by 15mm and going a bit crazy with all the different opinions on it.
Regarding the tumor size before treatment i recon that your tumors were well against the brainstem right?

I have spoken to a specialist center in munich. He saw absolutely no issue in treating mine with CK and was confident that this should be my first line of treatment.

But other center. Maybe less specialist said that there should be surgery followed by GK treatment.

So i am completely mystified now to what is what.

I seem to lean towards a less invasive treatment at first for sure. Especially when reading that most papers out there say up to 25mm radiation should be first line of treatment.

Hopeing to get some feedback on your specifics with regard to brainstem.

Best dennis   

[SP]

Hi Dennis,

Yes I hear you on all the differing opinions, it's a stressful decision & I went through the same thing too. I am in Sydney Australia, and here the initial advice I had from various neurosurgeons, was to go for surgery, as you may already know, if you consult with a surgeon, they will usually recommend surgery. I made the decision to get treatment with Dr Chang @ Stanford due to his experience in CK and specifically at that time (2015) he had worked on over 50 tumors around my size, (that was 50 more than any of the GK or CK sites in Australia). Like you I was very motivated for the least invasive treatment.

To answer your question, yes my tumor was displacing the brainstem at the time I did my treatment.
Happy to chat with you if you have more questions, feel free to direct message me if you like.

Wishing you the best as you navigate this decision, this forum is an exceptional resource.

Stella

[mwatto]

Also in Australia (Hi Stella!) I had CK in Perth. No regrets and about to have my 6th MRI. Happy to also support - I recall how very scared I was back then and a member here helped me (Paul Wellens). Mine was fairly big, cystic and very close to brainstem. However I saw the CK team first who said I was a good candidate. Last year I actually had a consult with a neurosurgeon (not abt the AN more abt some deep ear pain I have on and off pre treatment) who also said to me it would have been an easy op back then.

[Maystro]

Hi Stella and Jessica,

Thanks you very much for your answers. I am considering doing a second opinion with dr chang. Although i think i am dealing with experts in the ercm clinic in munich as well.
Hoping to come to a decision soon.

I will be reaching out to you in pm.

Thanks! Dennis

[SP]

*** Latest update at (almost) 10 YEARS post CK***

My results from my MRI for 2025 (last one was in 2022), the good news is I can now go 5 years till the next one - that's a win!

There has been further reduction in tumor size measuring 2.1 x 2.0cm compared to my 2022 results (2.3 x 2.2cm).

Hearing:  Compared to previous assessment from 2022, further hearing loss has progressed. I'd like to find a suitable hearing aid that may help. I'm on a research mission to find one.
For some reason the newer models I was shown were bulkier than my current one and didn't really improve things much, then I was told I would need to wear one on both sides, which also didn't not improve things by much. Anyhow most days I'm working from home, so it doesn't affect me much, but when I'm out & about I'd like to be able to hear better from the left.

Overall, I am going well! Yoga & Pilates are my go-to for stress reduction


wishing you all wellness on the healing path,

Stella

[mwatto]

Stella I am so very happy for you! My goodness what great news!! It really gives me hope! I was told I have to have annual MRIs for rest of life which is a bummer. My specialist told me re the initial size of mine and as the treatment was fractionated. My friend does not have to because she only had one treament and hers was small. I really dread them. I guess only good thing is I get to see how my ageing brain doing.

[DanFouratt]

Stella, Thanks for sharing the great news. Reducing MRIs is something I can only hope for today, but you gave me something to look forward to and ask about. . Glad everything is well.

Dan

[SP]

Thanks so much Michele & Dan 

PS my treatment was fractionated over 3 days too.

be well

Stella

[DodgeAU]

That's very good news Stella! I'm going for third MRI, 3 years post GK. They gave me annual MRI plan for 5 years post GK. So far my AN is stable and reducing a little. Looking forward to having a break on MRI like yours in the near future:)

[SP]

Thanks for the support DodgeAU ! I get super anxious in that MRI machine, so happy to have them less frequently. 
Best of luck on your next MRI; onwards & upwards.
may all be well,
Stella

[Maystro]

Since last posting on this forum I have had treatment.
Which was in April 2025. Cyberknife in Munchen.

Around treament my Tumor was 24 by 15mm
Cyberknife session was 30 min. With a facemark. Which looks to me like a far more comfortable solution than those screwing frames.

Just had my 6 months scan and appointment with my neurologist in Munich.
And so far Necrosis is visible on the MRI and the tumor has shrunk about 10 to 15% in size.
Which is according to the neurologist a strong response to treatment and positive results.
I couldn't agree more. No real strong side effects so far.
First few months a bit of a pulsating feeling in my head around the area where the tumor is.
But no issues with gait or other things.

Balance was not bad before treatment but has improved.
Neck flexibility has improved. (wasn´t aware of how much that actually was impacted before)
hearing before treatment was impacted. High en some lower frequencies were impacted. word recognition was not as good as it should be.
After treatment: last month there has been improvement. Where some lower frequencies came back. And word recognition has gone up.

All in all. I am happy I did my own research and didn´t trust the first neurologist I talked to.
I would say the advice I got was for the majority pointing towards surgery and at least debulking of tumor.
But reading the research papers told me a different story. Where it is also very important to understand the volume of the tumor and not base advice on just the diameter.
The neurologist in Munich understood I was well informed and read many papers. He was the first to have a full open conversation on what are the possibilities. And he said that whatever I do it is my choice but that he was very certain that he could treat me with the cyberknife machine with good outcome. If he were in my shoes that he would go for that option before considering surgery. Because this surgery is major.
Maybe he was selling me his solution, who knows. But I also keep in mind that these clinics have to keep numbers on a certain level to be allowed to treat.

So far so good. Up to next year!
For now I feel like I have my future back!

[SP]

So glad you are feeling positive & had good outcomes from your CK treatment !
Happy health,

Stella