Thursday, May 4, 2006 - morning

I'm pretty stressed right now. Talked at length with an experienced neurosurgeon from NYU who has operated on over 110 pediatric cranios. (evans and andrews have a panel of about 30 - which is still high given the rarity of the tumors). Anyway, the NYU doc embraces a philosophy of radical aggressive surgery via craniotomy. He basically thinks the bulk of mike's problem right now is not the cyst, but rather the solid tumor mass causing pressure on the hypothalamus. He said he would "go for broke." Aggressive craniotomy carrying 20% chance of the way mike is now lasting forever, 5-10% chance of death, and 70% chance of improvement.

I told the doc that Mike's 8 days into a 30 day radiation treatment and he said, "well, it looks like you've made your decision then." shit. apparently surgery post-radiation is not as straightforward. So, what the F now. I don't know I don't know. No, radiation does not totally preclude surgery later, but it might be making that option more complicated down the road.

The only caveat to this doc's advice is, this doc hasn't been "in" mike's head. The scar tissue situation in there is not able to be seen without actually being in there. So he admits that his opinion is based only on the scans and his general experience with these tumors, but it is certainly possible they ran into something in there that he would as well. I'm going to fax him the surgery reports today regarding the 3/28 endoscopic surgery and the 4/4 craniotomy.

I'm also going to pin Evans and Andrews down for a discussion. I keep thinking about this in terms of probabilities and framing theory and I'm making up the probabilities because I don't have enough info. I keep thinking, if given the choice between option A carrying a 95% chance of Mike's being 50% well and a 5% chance of Mike being 75+% well or option B carrying a 70% chance of Mike's being 90% well and a 30% chance of Mike being dead or blind or otherwise impaired - I have to imagine Mike would certainly go with option B. Andrews keeps saying we're just not at the point of having this discussion - but I fear that waiting and waiting might preclude the discussion altogether.

Nothing is simple here.


Anonymous said...

is it possible to get all three of them on a conference call? your docs here have been inside his head and if i recall correctly, he had significant scar tissue which might preclude the more aggressive approach. i'm sure you know this but most of the online stuff i'm seeing separates the research by adult vs. pediatric results, and i wonder if that is because they are different animals somehow...brain development being further along in an adult and chances for plasticity maybe are greater for a child?

you're facing decisions that no one should ever have to make. look at it this way, you're only 8 days into the radiation, there is a reason why you spoke to that doc today instead of a month from now.

try to get all three together is my vote. of course have a conference with your current docs first to protect egos...not something you should have to worry about but docs often have big ones (egos, that is).

good luck.

-mike weissman

Diane C. said...

Hey Danna, I have to agree with Weisman (hey Mike W!) about the scar tissue, conference with your docs, a possible consult with the NY docs, and the egos.

Eyesight preservation was a top priority to everyone and this doc may not have a clear understanding of that, since Mike is not his patient.

I think Andrews has probably experienced this scenario (an outside consult) in his career and has been called in on one as well, and will understand that you are searching for improvements for Mike, and not second-guessing him.

Anonymous said...

also, it occurs to me that sometimes when i'm really frustrated, i just want to vent and getting advice from others is not helpful--in fact it's the opposite...even more frustrating because now there's ten opinions in the mix and it makes it worse.

you've been so generous in sharing with us everything that's going on that sometimes the line might be blurry to you, even, whether you want input. you have a legion of people who want to help however they can, too. but sometimes i read the comments sections of the blog and it strikes me as a firehose of info. if you can handle that, great. i am looking at it from a POV of when i'm really stressed, getting a firehose, no matter how helpful, is overwhelming.

if you do need to just vent, i think it would help us, help you, if you said up front "hold your suggestions". that way we won't insert our thoughts when it won't be helpful to you.

just a thought :)

francine said...

Hi Danna:

It sounds like there's a chance the NY doctor might change his mind after he reads the surgery notes, so it'll be interesting to see how that goes. And a conference call among the 3 of them sounds like a great idea.

Please don't second guess Mike's care up to now, though. You found excellent doctors and took the time to understand and research their decisions and treatments. You did everything right.

I agree that no one should ever have to make these decisions that you're now possibly facing. You're being asked to predict the future and decide which of three reputable and experienced doctors is right. The reality is that even the doctors can't say for sure what will happen. It's a question of liklihoods and odds. If it does turn out that there is the option of the more agressive surgery at this stage, please don't take this decision on all by yourself. If you can, involve as many family members (mike's and yours) as possible and try your best to think about what Mike would choose if he were able. I guess you're the legal decision-maker, but remember that ultimately whatever happens is beyond your control. I think modern medicine sometimes gives us the illusion of control, which then translates into a sense of responsibility, but I don't think any of that is real.

Mr Harry Green said...

Hi Danna
Mike's Mask and Wig friend, Larry Freedman here. My dad is chairman of Geriatrics at NYU, and one of my clients is the top endocrinologist at NYU who deals with the hormonal aspects of cranios. I've talked to both of them about Mike and they would gladly speak to you. I don't want you to be overwhelmed with suggestions and opinions, but you mentioned NYU and it is the one place to which I have a great deal of access.

Larry F

I'm planning to be in Philly this weekend and hope to see Mike tomorrow with Petey K and Kevin.

The Brain said...

Thanks all. Awesome words of wisdom all 'round.

Got lots of balls rolling today:

Surgical notes for craniotomy are being faxed to NYU Doc (Wisoff).

Social Worker is going to help me get Wisoff in contact with Evans and Andrews.

Talked to Evans and Andrews' nurses about the importance of family/doctor conference meeting ASAP. She's on it.

Main questions I need answered:

What exactly was encountered inside Mike's head that precluded any further resection?

How are adult cranios different from child cranios? (might explain diff in docs' opinions)

What is the most plausible source of Mike's current deficits - the solid mass or the cyst? Andrews believes the cyst is severely impairing Mike. Wisoff (NYU) believes it's the direct effect of the solid tumor and swelling around the hypothalamus. Andrews and Evans short-term plan does not involve removing that solid mass at all - just freezing it with radiation. If problems are more likely to be coming from the mass than the cyst, we have a really important conversation to have about quality of life and risk/benefit assessment of an aggressive surgical approach.

Peter said...

Your questions are excellent, I think. Understanding what it is that makes Andrews and Evans consider the tumor inoperable is essential to evaluating other opinions.

Beware the "whatever the last person who talked to me is right" reaction, especially when the person is giving an opinion on less than a full record.

It's hard to find literature through Google on the topic of surgical strategies in approaching difficult craniopharyngiomas. I found the following musings by a neurosurgeon in India (I know, I know; take out your salt shaker) easy to understand. This appears to be one way in which a craniopharyngioma can earn the label "inoperable":

"In tumors that infiltrate the hypothalamus it may be found that in some cases these structures can be easily preserved, while in others it is impossible to distinguish between the normal hypothalamus, the gliotic tissue and the tumor. The ease of removal and risk of dissection can vary accordingly. A dense, invasive finger-like tumorous and gliotic tissue with diffuse adhesions of the hypothalamus renders it impossible to follow a plane of cleavage. This situation limits the total respectability [sic] of these tumors."

Apart from the misspelling and odd syntax, I think this is saying that in some circumstances the surgeon can't tell the difference between tumor, scar tissue (which I think is what adhesions are), and brain, and that makes the resection simply too dangerous to perform.

If this is what makes Mike's tumor inoperable (and based on what you have said the docs said in the past, it sounds like it's at least in the ballpark), maybe there are surgeons out there who think they can feel their way through these situations, through luck or skill.

Follow your excellent instincts, but remember also that you are at a wonderful, top flight facility with excellent surgeons who care deeply. From your recounting over the weeks, I get the strong feeling that they like and respect you and Mike very much, and that they too are frustrated.

Remember also that Andrews has a bit of cowboy in him, too. He has done things that are innovative and even unorthodox to save a patient's life. He was sued for trying a new radiation therapy protocol for a patient with a very difficult AVM (a tangle of vessels in the brain that cause fatal bleeds, I think). Apparently it was deemed experimental (by the plaintiff's attorney, at least), and to do experimental stuff you are really supposed to convene the institutional review board (IRB) and get clearance. He didn't do that. This is public record -- I ran dockets on him here in Philly. So he isn't exactly a guy who sits home knitting.

I'll see Mike tomorrow for dinner with Kevin and Larry.