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.

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{ 11 comments… read them below or add one }

debbie March 5, 2012 at 5:38 pm

4 years ago my son julien was diagnosed with portal vein thrombosis, esophageal, gastric and rectal varices and an enlarged spleen. it all started when he was just 4 months old, julien went into shock and became septic, he spent 7 days in icu at cincinnati children’s hospital first the doctors thought it was meningitis, then they thought it was his gall bladder then they did an ultrasound and discovered his thrombosis. the next four months we spent giving him meds through a pic line for an infection the doctors thought he had, my son had mri’s cat scans two endoscopy’s and one colonoscopy, and to top that off because of the varices in his lower abdomen he had one hernia removed, and all of this by the age of 9 months. One week after his first birthday i noticed blood in his stool, so we went back to the GI doctor for more tests, and that was when we discussed the rex shunt. DR. TIAO of cincinnati children’s hospital would be the one to perform this operation julien was just 16 months we had never heard of this type of operation before, but i was desperate and we did not know how much longer we could watch our son suffer, so we said yes, and to this day i thank god we did. He will be 5 years old in one month and will be starting kindergarten this fall, he is an active kid that loves to play video games.

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Clint March 6, 2012 at 1:19 am

Hi Debbie,

Thanks for sharing your success story! This is so helpful to other parent’s who may be facing the same issue as your son did. I am adding Dr. Tiao’s listing to the Rex Shunt Specialist post I added a year ago.

Clint

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Heidi April 20, 2012 at 6:28 am

Debbie,
Your story is amazing!! God Bless little Julien.
Heidi

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Kathy April 26, 2012 at 4:57 pm

Hi,
My son Drew had the Rex Shunt almost 4 years ago when he was 7 with Dr. “Superman” Superina in Chicago. His surgery was very successful and we are blessed to have known about the only option as the only cure for Portal Vein Thrombosis. I am on Children’s Memorial parent board. And are the family that is on the video for the Rex Shunt on the Children’s Memorial Website. Feel free to contact me if you have any questions. I will scream my loudest about how amazing Dr. Superina is and how awesome the hospital is. I wish it was easier for adults.

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Clint April 26, 2012 at 11:47 pm

Hello Kathy,

Thanks for posting here! I have viewed the video on Drew many times and I know it has been an encouragement to countless others! So happy he is thriving! Being on the parent board for Children’s Memorial Hospital I am sure you know Shelly H.? I have referred other parents to her and she has been more than obliging. There are others who also have offered to dialogue and I have a running list of them now. When I started this blog almost 3 years ago, I had no idea I would be talking about the Rex Shunt and all the great things Dr. Superina has done for many kids. I count it a privilege to be able to be a bridge to help others (especially kids) find solutions for this most disconcerting condition. It is my hope that someday adults may also realize solutions for their condition, as I agree it is not very easy for us.

Bless you and “Drew” always! Clint

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Kathy April 26, 2012 at 5:36 pm

Whoops! Drew is 7 now, and had the surgery 4 years ago.

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Brandi May 1, 2012 at 9:38 am

So here I am again almost a year ago I posted here for the first time. Though Rylee does not feel pain from her enlarged spleen, varices, thrombocytopenia and portal hypertension, she is very limited to activity. We had a glimmer of hope thinking they could remove her spleen and cure her limitations, but the surgeon here said that the surgery could cause her more harm than good at this point in her life. He also indicated that if she needed a shunt surgery, that is risky and could also cause neurological issues which she already has due to her being a in utero stroke survivor. Her liver appears to be fine at this point. I am started to get very depressed and feel hopeless. I am very scared her spleen is going to rupture and that something else will happen with her having to live with these conditions. I have not talked to my husband about her condition since our visit witht he surgeon on Thursday, April 26. I am beyond petrified stil of any type of surgery and just have a lot of anxiety and horrible thoughts about what could happen. I am not sure what to do at this point, but I am sure that a second opinion should be done. Any thoughts or advise? Thanks

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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

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MARTI September 10, 2012 at 4:15 pm

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

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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

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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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