ALLI, IDEA FOR LIZZIE

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esoR
Veteran Member


Date Joined Jan 2007
Total Posts : 4147
   Posted 1/9/2011 11:06 AM (GMT -6)   
Alli, (and/or anyone else in touch with Lizzie),

I put this as a separate topic to catch your eye. I read about this clinical trial for viewing locations of abdominal small bowel adhesions. It is called Cine-MRI and was totally effective at locating small bowel adhesions in the Netherlands. Google Clinical trials and select adhesions. The study was just completed this past December.

When you talk to Lizzie again, ask if they have a Cine-MRI machine at Cleveland Clinic. I have also emailed the chair of the clinical trial to find out where in the US has this type of machine. I THINK Mayo has one in Minnesota but I will check further. My ileo surgeon at Lahey said even if someone has an abdomen full of adhesions (the adhesion encased abdomen), if they can get the ones that are just in the wrong place, the person can be OK and lead a normal life.

IF they do have to go back in on Lizzie, I strongly suggest the Seprafilm. I know that her doc did not approve of this and did not use it, but maybe his belief was wrong and that it would have helped her or will help her if she needs further surgery. The clinical trials of Seprafilm are the best so far and most institutions are using it across the US. I was surprised to hear that CC was not.

Hope this helps. I will post with the lists of hospitals with the cine-MRI machines when I hear back. We all need to keep praying for her, but along with that some, good, hard core patient education, I think is now in order. Continuing sending prayers her way (and your way, too. Best of luck with your project too and hope you recover from your flu bug very soon.)

Rosemary

I'd Rather Be Riding
Regular Member


Date Joined Apr 2010
Total Posts : 149
   Posted 1/9/2011 7:00 PM (GMT -6)   
Rosemary,
 
I will ask her about it and see if I can find anything on this type of MRI on Cleveland's website. Because I don't check in on HW everyday, feel free to email me at: allie.anderson@gmail.com. When we saw Dr. Figg, I asked his opinion on Seprafilm, and he said that using it wouldn't do Lizzie any harm, but it is by no means a cure. I say use it if there's a chance it will help keep some of the adhesions away.
 
Dr. Stocchi is bringing in urology and gastroenterology to see if they can figure out what is going on. She is having output, but is very distended, and even with a liter bolus of fluid, has urinary retention and horrible spasms with peeing. Tube feeds and TPN are still possibilities because she can't eat enough to keep up with basic energy demands. Lots of prayers needed!
 
Thanks for posting this, and for hoping I get over this flu! Definitely ready to be rid of it!
 
Allie

esoR
Veteran Member


Date Joined Jan 2007
Total Posts : 4147
   Posted 1/9/2011 7:50 PM (GMT -6)   
Hi Allie,

Thanks for your email address, I'll jot it down and email you the info I get from the docs in the Netherlands. Dr. Figg is right in that Seprafilm does not prevent new adhesions, but it has been proven to reduce the number and the severity of the adhesions that do form. My take on it is the same as yours, if it would do no harm, why not give the Seprafilm a try?

Glad Dr. Stocchi is bringing in urology. I sure hope they think of adhesions on the bladder. I have some I know, and though I can pee, I get some mild cramping when I do. But who knows, it could be some other issue with her bladder, that poor girl.

Yeah, flu on top of what all of us are already dealing with is about the last straw. I had pneumonia last fall and that was about the last straw, though my ileo was doing fine.

Hope you soon kick that bug. Prayers still going out. Rosemary
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