scary research

[polyannna]

From WebMD:

"Survival for patients with benign tumors is usually much better for all age groups, but reliable data is sparse."

Comments

[befers]

You cannot let yourself get worked up about statistics you read on the internet. Brain tumor survival data (especially for benign tumors) is hugely inaccurate, because surgical techniques have improved so drastically over the last 10 years. And it also can vary hugely from surgeon to surgeon. The lesson here is to take the time you need to find the surgeon who is right for you. I talked to 12 different neurosurgeons up and down the east coast before I found the one I was most comfortable with. They all have expertise in different parts of the skull. You have to find the one who has dealt with the most cases like yours. By the way, as you are in Chicago, I'd see about getting an appointment at the Mayo Clinic. They have some very excellent sugeons there.

And I know you don't want to tall a lot of people about what is going on - I don't blame you for that - but if you can find someone to go with you to your appointments, it's extremely valuable to have a second set of ears. Either way, bring a notebook with you to write things down. You think you'll remember everything they tell you, but you won't.

Also, your insurance company may be able to assign a specific case worker to you. That can be helpful when you need an answer about something and they are already familiar with your history.

ditto ditto ditto

[azale]

Statistics - almost useless for predicting what will happen in a particular BT case.

Mayo - Outstanding BT center. Though, I'm sad to say, my guy there retired this year. He did brain surgery on Ronald Reagan!

Wingperson - I was fortunate to have my wife go with me to all the important visits. There is no way anyone can absorb all the information that's going to be thrown at you.

I've always been a horrible note taker: I always assume I'll remember everything. This one time I made an exception. I went so far as to take a digital sound recorder. They're relatively cheap and SO useful. I didn't want to miss one syllable and now I have it all. YMMV.

Re: ditto ditto ditto

[polyannna]

Thank you thank you thank you for all your kind words of wisdom and experience. You guys are like a lifeline to me, seriously.

I do wish I had someone I could bring with me to consultations. There really isn't anyone who can come with me, sad but true. But I love your idea of simply recording everything for later playback. I'm definitely going to do that. Heck, I can't even keep track of everything my vet tells me about my special needs cats without taking written notes - I'm not taking any chances of missing a vital piece of information when it comes to my brain!!!

And thanks SO MUCH for the links to resources. I am going to have a lot of good informative reading to do!

thank you!

[polyannna]

All right all right, I edited the post. Better?

Thank you for the info. I must admit, when I read that stat, it did freak me out a little bit.

And thanks so very much for the tip on how to find the right surgeon. I knew I would need to get a second and maybe a third and fourth opinion, but I am so utterly clueless when it comes to anything to do with doctors, hospitals, insurance etc., I had no idea where to start or what to look for. Thank you so much!

"They all have expertise in different parts of the skull. You have to find the one who has dealt with the most cases like yours." you said.

Those two simple lines have given me a direction, a line of inquiry to follow. I really can't thank you enough.

Re: thank you!

[befers]

You didn't have to edit the post :) The feelings you feel are legitimate. It's ok to be scared. You are going through a scary thing. I think what I and others were trying to tell you is that you shouldn't lose hope. I very firmly believe that a huge part of recovery from something as major as brain surgery is attitude. So I think we were trying to lift your spirits and help you know that there is always hope.

Anyway, I'm glad I've been able to be helpful. My circumstance turned out so much better than it could have that I kind of feel like I have an obligation to help other people through what I went through. So often, on the internet especially, you only hear stories of bad things. No one feels like they need to write about it when things go well for them. So I'm just trying to show that there is another outcome possible.