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