The Rex Shunt Procedure for Portal Hypertension

The Rex Shunt procedure is a relatively new treatment procedure for portal hypertension that has been performed on children with positive results.  According to what I have learned, there are now over 90+ children in North America who have had the operation.

The Rex Shunt procedure has primarily been performed at Children’s Memorial Hospital in Chicago, Illinois by Dr. Riccardo Superina.   (There maybe a few other places in the world where this procedure is being performed, but I was unable to glean that information at this time).  If you are aware of any other locations please feel free to post your comments below.

Dr. Superina explains the procedure in the video below …

What is the Rex Shunt Procedure?

On the Facebook blog I subscribe to,  a fellow member had asked Dr. Superina directly whether or not the procedure could be performed on adults, and this was his reply …

“There is no reason that it cannot be applied to adults, and we would be happy …to hear their cases if they wished to send case summaries along and recommend further investigation or action.”

If you wish to send a case summary to Dr. Superina his mailing address is:

Riccardo Superina, MD

2300 Children’s Plaza, Box 57

Chicago, IL 60614-3363

Considering my particular case, the verdict is still out as to whether doctors would even consider a procedure such as this, or for that matter any kind of operation due to my underlying clotting condition?   For you though, or possibly someone you know maybe this procedure is something worth pursuing?

I had the privilege yesterday of meeting (via the web) Shelly Hart whose daughter Aubree had the Rex Shunt procedure performed by Dr. Superina 2 1/2 years ago.  Shelly has granted me permission to post her blog and you may view it by clicking here:  http://www.hartgirlies.blogspot.com/ Please click on Aubree’s health updates to view her personal journey!  Thank you Shelly!

If you have a story to share regarding the Rex Shunt procedure or for that matter any other procedure your post is most welcome here!

See a case report of the Rex Shunt Procedure for Adults.

{ 84 comments… read them below or add one }

Clint May 2, 2012 at 12:01 am

Hi Brandi,

Thanks again for visiting this blog and for the update on Rylee. This is a very hard situation to deal with for sure as there are complications for her on top of the portal hypertension (PH). I can understand the doctors being hesitant to remove her spleen, as I faced this also and from what I know it was a good thing that it was not removed – enlarged as it is. Neurological issues can happen despite a shunt as anytime blood bypasses the liver through collateral arteries, toxins can reach the brain and cause enchephalopathy. Enchephalopathy is treated with Lactolose which I know can be purchased over the counter. (I know this is not very reassuring but I wanted to make sure that you or others reading this were aware of this complication). It sounds like Rylee has good liver function and this is the case for me also. By far if the liver is damaged this complicates things even further, so I say this to encourage you.

Concerning shunts … the Rex Shunt procedure is one of the most proven methods for dealing with PH and works best on children. I wondered if this is what doctor’s are suggesting for Rylee or is another method favored? There is a number of stories and dialogue on the Rex Shunt which you can read here, and if you needed to speak or write to another parent I have some names of moms I can forward to you via email.

Finally, if you don’t mind I will uphold both Rylee, you, and your family in prayer. Please keep me posted and let me know if there is anything else I can offer for such a time as this. Kindest regards, Clint

MARTI September 10, 2012 at 4:15 pm

how long does the surgery take ,my daughter is awaiting a date for her surgery

Clint September 20, 2012 at 12:20 am

Hi Marti,

I apologize for not getting back to you sooner regarding your message, but have been overwhelmed on many fronts since my hospitalization a few weeks ago. The best place to dialogue regarding the surgery is with parents of children who have already had the surgery or are waiting for the dates for their own children. If you have Facebook you can join the following page of which I also belong in which there is lots of support for parents of children with portal hypertension. Hope this helps? See: https://www.facebook.com/groups/4496581222/

Kindest regards,

Clint

Rodrigue September 22, 2012 at 8:34 am

Hi Clint,

Hope you are feeling better. Here is a new video on the meso-rex shunt procedure:

http://www.youtube.com/watch?v=Q5wRYvMRIXw

Take care,

Rodrigue

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