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Would you do a research study surgery?

 
 
Linkat
 
Reply Thu 23 Mar, 2017 01:09 pm
My daughter needs surgery. We met with the doctor and then they had me meet with a research study person. They are promoting this new surgery technique. So they go on to explain that they have only done this on adults (not children) and even then with less than 100 adults.

I could tell as they were explaining my daughter's eyes glazed over so she had not clue. Afterwards I explained to her what they were talking about - she said no way!

On top of it - we know two other kids that had the same or very similar surgeries - one of the reasons we chose this doctor is both girls had very successful surgeries with him and he is best known for this particular surgery.

In theory, the new process sounds like it would be better (there is no difference in estimated recovery time), but why would someone want to test out a new process on their child when there is one that exists that has a history?
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Type: Question • Score: 0 • Views: 236 • Replies: 4
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Sturgis
 
  1  
Reply Thu 23 Mar, 2017 01:20 pm
@Linkat,
I wouldn't do it for any reason other than life or death. Since there is another procedure which exists, I'd likely go with that.

Out of the 100, what is the success rate?

As far as testing, these things do need to be tried out, so, if it isn't your child, it will most likely be someone else's.
Linkat
 
  1  
Reply Thu 23 Mar, 2017 01:29 pm
@Sturgis,
Actually I just read through the entire report - they have only tested 10 adults - with no issues. Oh and on pigs the pigs did really well with it.

This current test is for 100 participants. And the age range for this testing group starts at 14 - so she would be the youngest.

I have no desire for my child to be a guinea pig - I agree with you unless it is life or death then why?
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ehBeth
 
  1  
Reply Thu 23 Mar, 2017 01:46 pm
@Linkat,
Linkat wrote:
but why would someone want to test out a new process on their child when there is one that exists that has a history?


ask my parents

they started me in an experimental treatment program when I was about 4

the doc who started it is long dead, I'm still a test subject for the program 50+ years later - I'm now one of those people they look at for long-term effects/complications

__

My guess is that they were hoping for even better success than the existing treatment protocols - and it seems they were right.

__

It's a bit of a family thing. My uncle was an experimental treatment subject for his asbestos-based cancer. He did survive an extra month or so, and the overall protocols have improved in the last 20+ years. My mother had an experimental pain protocol during her final months.

__

My instinct is pretty much always yes - as long as I know the alternative option is not less successful. If it's equal or better, I'm likely to go in on it.
Linkat
 
  1  
Reply Thu 23 Mar, 2017 02:13 pm
@ehBeth,
What if they don't know?

The benefits is that you don't need to take tissue from another part of your body - basically using a normal part of your body kind of like now injuring another section of your body.

Ending result up through a year is both surgeries you are as strong.

The other benefit which was only shown in pigs is less arthritis as they age.

So there is none shown benefit.

The study is to show if this technique is as good or better. They don't know.

But on the positive as they discussed with me - if it isn't successful they can always go back and do the other surgery!

To be honest they didn't even really sound overly keen on test study.
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