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newly diagnosed and trying to get all the information I can

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ANSydney:
Yes Citiview. Sometimes we need to keep clear what the objective is.

Citiview:
Patients will define for themselves their own objectives for treatment based on their own sensibilities.

ANSydney:
I agree patients will define for themselves their own objectives for treatment based on their own sensibilities. Unfortunately, the "evidence" is disparate. Some papers will tell you one things, others quite the opposite. How do we differentiate between the reliable information and the not so? You get reported natural growth of between 5% and 50%, shrinkage of between 1% to 22%, good hearing preservation following gamma knife and no hearing after 10 years.

Citiview:

--- Quote from: ANSydney on February 05, 2017, 03:39:19 pm ---I agree patients will define for themselves their own objectives for treatment based on their own sensibilities. Unfortunately, the "evidence" is disparate. Some papers will tell you one things, others quite the opposite. How do we differentiate between the reliable information and the not so? You get reported natural growth of between 5% and 50%, shrinkage of between 1% to 22%, good hearing preservation following gamma knife and no hearing after 10 years.

--- End quote ---

I've gone through this kind of a process before of having to gather information and seek different medical opinions. Sometimes for myself or for my children. What I've learned is doctors will have different opinions and interpretations. Institutions will have different philosophies. It can be frustrating. I think we all want everything to be simple and easy to solve. This disease is rare so it's even more difficult to get consensus. Sometimes narrowing the focus to a certain institution and doctor team and their own institutional stats might help. That may be easier for those of us here in the United States because we are closer to the institutions that are talked about frequently. It's hard to advise when someone is outside of the US.

Different research will have conflicting findings because each study will have limitations. Although it's good to look at studies you have to be careful about interpreting them or coming to conclusions based on one or a few studies. Even doctors in this field have called the body of literature controversial and difficult to interpret, so it makes sense that it would be difficult for the patient to be sophisticated enough to make interpretations.

Maybe listening to the success stories that keep coming out and finding patterns of success with doctor teams will help.


Wishing you luck ANSydney and of course everyone else too.

ANSydney:
"Even doctors in this field have called the body of literature controversial and difficult to interpret". It is difficult to interpret. but it's in English and and easy to read. It then requires thought about what it means for you. You, the patient, will spend much more time than a doctor is willing to commit to understanding it. Much more time.

Thanks for the well wishes Citiview.

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