Pre-Treatment Options > Pre-Treatment Options

Recently Diagnosed - 38 year-old, 1.3 cm AN

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Greece Lover:
I couldn't agree more with everything you said. And,I think you're right about how to make a decision.  Know and understand the risks and probabilities, but you still have to decide with your gut, and a huge part of that is comfort and trust of the doctor.  I have a Ph.D. and I couldn't use all the medical studies to help me make a decision, and really, that's not what they're written for.  They're written for doctors to help advise patients, not to help patients make a decision. 

This is a terrible process, and you seem to have a great self awareness through it all.  Although I wish this had never happened to me, it also has become integrated into who I am. I can't conceive of myself without the tumor and its removal. And, in some ways, it has helped me.  I think it has made me a better teacher, a better spouse, and a better parent.  And, partly I can be positive because I had such a good outcome.

I wish you peace!

Walkos:
Thanks. I agree with you. You are very right - this has definitely made a better person (certainly more patient and aware of life’s priorities).  It has also taught me the importance of optimism.

Someone recently shared a great quote - “optimism is a force multiplier.”

SueLL:
Just one piece of advice - don't make yourself crazy with research and the statistics, as they have no bearing on what ultimately happens to YOU.  I had a small AN treated with GK at UPMC.  I lost my hearing within 6 months of the treatment.  Here I am over three years out, and I am one of the small percentage of people for whom GK did not work.  A cyst has formed out of my tumor, and the tumor itself has grown.  I am now facing surgery.  I have defied all the statistics - in the wrong way.

Good luck with the decision and whatever procedure you select, but much of the outcome is likely beyond your control!

Jakey:
Love your Feb 23 summation, couldn't agree more.  While a thorough understanding of one's options is critical, quite frankly, everyone's situation on this board is different, as are their objectives for recovery.  The most important thing is that you like & trust your neurologist.  I hope you've found someone you like.  In the end, it really is a probabilities game, and choosing the best treatment & doctor may win us a few percentage points, but we're still just rolling the dice. 

So it sounds like you're leaning towards fractionated GK treatment via ICON.  I'm scheduled for that same procedure on June 4 at Columbia in NYC.  It'll be five treatments over five consecutive days.  Feel like this gives me the best opportunity for preserving my hearing.  My understanding that this new approach has less of a chance of damaging your hearing due to the lower doses spread over time, which makes sense to me.

I'm 52 years-old, and my AN is only 3mm, but due to its location, it's having an outsized effect on my right ear hearing.  In just eight months since diagnosis, my hearing has gotten dramatically worse, so much so that I'm having the procedure now instead of watching & waiting for several years.  At this point, I really just want to save what hearing I have left.  I can deal with the tinnitus, although that really sucks too.  I'm hoping that maybe it'll go away with treatment, but from what I've heard, that sounds like a longshot.

Best of luck to you, and would be interested to hear your thoughts post-ICON procedure if you're willing to share.  I'll probably post my experience once it's over.  Like you, I was on this board a lot when first diagnosed, then laid off it for six-months or so, but now that I'm about to enter treatment, I'm back on.  I think it's most helpful for the newly diagnosed, so if I can help those folks feel better about their options, I'm happy to share my thoughts/experiences, but you need to be careful in just how seriously you take people's opinions in an environment like this. 

Regards,
JK   

Abetpds:
i am 70 years old with a tumor 29.1 mm x 28.1 mm x 29.1 mm  Thinking of surgery - but investigating the Mifepristone drug that Mass Eye and Ear did studies on saying that it will curb growth.  I have no symptoms (Praise God) other than hearing loss in left ear - inspite of the fact that its pressing on the brain stem.  Would rather not do surgery but my doc feels I should do surgery since it grew from my MRI done 3 months ago.  In a dilema as to whom to go with, where to do it at, and what my condition will be like after surgery.  I am perfectly fine now.  Appreciate any inputs.
Regina

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