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.

93 thoughts on “The Rex Shunt Procedure for Portal Hypertension

  1. Dra. Leticia Bilbao

    Thank you Clint for your comments I have never heard of Dr. Guadalupe Garcia-Tsao but I will visit the link.
    As I am a pedatric gastroenterologist I am not shure I should be on the list, because I dont perform the procedure myself; I just wanted to share the information that there is someone that can do it in Mexico, and if they have patients like mine, they could contact Dr. Chavez-Vargas.
    Congratulations for the brilliant idea of this blog, I have read that it has been a blessing for lot of people.
    Dr. Leticia Bilbao

    Reply
    1. Clint Post author

      Dear Dr. Bilbao,

      Thanks again for your post and encouragement.

      I was aware of your position and I thought that it might be helpful to leave you on the list in hopes that potential patients could see your name as reference to Dr. Chavez-Vargas. I will remove your name from that list, but I wanted to give credit to you for bringing Dr.Chavez-Vargas to the attention of any potential patients.

      Many blessings to you,

      Clint Steenson
      Alberta, Canada

      Reply
  2. Tatyana Danilenko

    Dear Clint,
    I want to share our good news with you. We prayed for the way and we see it now- the University clinic of Regensburg, Germany, is ready to treat my daughter and we are now in the process of getting passports and visa, etc.
    Another miracle or God’s mercy, as we understand that, is that we have sponsor to pay for treatment- this guy with a big heart is ready to pay 22000 Euro, can you imagine that?
    Sonya and Sophya is one name, Sonya is the name for a little girl, Sophya is the name for an adult.
    Please continue to pray for my daughter. She is ill now- she has the obstructive bronchitis and breathing insufficiency, the risk of rebleeding while caughing is very high and I’m afraid so much for her. She has to be stable and healthy untill we go to Germany.
    Your blog became international and I think you are doing very important thing by connecting different people and giving them advices and simply listening to their problem.
    May God bless you.
    My best regards,Tatyana, Ukraine.

    Reply
  3. Lenny

    Hi Clint And everybody here on this important chat ,
    My daughter Aimee has PVT and all related problems with it Veracies ,enlarge spleen low PLT etc…
    We were checking the REX shunt but her Vein in her leaver is to small to hold it open after procedure so the Dr sugest the Renal shunt ..so me question if there is any one here who there kid had this kind of shunt surgery ???we scheduled for May 26th @ Sick Kids Hospital with Dr Kim And Fecteau to have the surgery Im very scared and canot decide what to do .
    If there is any thing some one knows please share info with me

    Thank you all 🙂

    Reply
    1. Clint Post author

      Hi Lenny,

      Appreciate the update on Aimee. I just happened to be up early this Saturday morning, and ironically a gal by the name of Kristi posted her story the day before yesterday regarding the Renal Shunt operation. She posted 3 comments and the 2 most relavant to Aimee’s condition can be found under Esophogeal Varices and An Actual Case Report Regarding the Rex Shunt Procedure. (Click links and scroll down to read her comments).

      There is also another gal from Sweden by the name of Alisa who herself had the Renal Shunt operation performed in St. Petersburg Russia. She is 25 years old and is currently writing a doctoral thesis. You can read her comments by clicking and scrolling down the page called My Portal Hypertension Journey. She posted a link to an article written by Dr. Kotiv (Russia) and 2 other doctors which is quite technical, but nonetheless you may find it helpful?

      Aimee and your family will be in my prayers.
      Take care,
      Clint

      Reply
  4. Jamie

    Clint,

    I wrote a while ago about my son possibly having a Rex Shunt proceedure. After lots of tests he is going to have surgery June 1st. We are excited to see what changes this brings in his life. I would love if at all possible to get in touch with anyone with a young child that has had this proceedure. I’m looking for any info on what to expect for him as we go through recovery.

    Thanks,
    Jamie

    Reply
    1. Clint Post author

      Hi Jamie,

      Thanks for sharing again – I do remember you! This is exciting news sor sure!

      I am going to send you names (directly to your email) for 2 Mom’s whose children have both had the Rex Shunt procedure done at Children’s Memorial through Dr. Superina. For interest sake, I spoke with Dr. Superina’s nurse last week and she told me that to date he has performed 121 of this type of procedure on children. I also know that there have been several performed in London (don’t know the exact number) and there have at least been 50 performed in Moscow, Russia. Added to that list is a doctor in Mexico city who has successfully performed 3 operations in the past year.

      Anyways – please keep me/us posted.

      Prayers, Clint

      Reply
  5. Brandi

    My 8 year old daughter was diagnosed in march with PVT, thrombosis, varices and low platelets. Her spleen is one of the biggest they have sen at our childrens hospital. We had a repeat ultrasound on May 30 and her spleen has not gone down which is a shock because all doctors have physically examined her and felt like it did shrink. We are definitely having to look at Rex shunt and I am beyond petrified. We are going to have a second opinion and look at other options. I am very worried about not only the surgery itself but also the outcome of he surgery. My husband and I do not have the means of going out of state for he surgery but I am very Leary about letting doctors who have not performed this surgery perform this on her. She is also an in utero stroke victim. Any advise?!?

    Reply
    1. Clint Post author

      Hi Brandi,

      Your comments are appreciated! I am very sorry to hear about your daughter! I do not know where you live in the US, but you may want to check out the list I compiled for doctor’s who have a connection to the Rex Shunt procedure. Before I do that I recommend that you call Children’s Memorial Hospital in Chicago and speak to Amy Bouvy (Transplant Surgery Nurse Practioner) who assists Dr. Superina, the specialist who performs the Rex Shunt. Dr. Superina has up to this point successfully performed 122 of these operations to date. Amy may have information that could be helpful to you regarding the feasibility of the operation itself.

      Here is Amy’s contact information at Childrens Memorial:
      Pager: 6171
      Phone: (773) 883-6171

      Click here for a list of specialists: http://www.portal-hypertension.com/2011/03/17/rex-shunt-procedure-specialist-list/
      It also may be helpful to get in touch with some other Mom’s whose kids have had the operation so that you may hear directly from them as what to expect.

      Shelly Hart is a mom’s whose daughter Aubree had the operation 4 years ago, and Shelly is on the parents advisory for the Rex Shunt Procedure at Children’s Memorial. Shelly would be happy to speak you if you wish. I will send her phone number to you via email in respect of her privacy. Shelly has a blog you may also want to check out and hopefully that will be helpful to you also. Her blog: http://www.hartgirlies.blogspot.com/

      Another good resource person for you to contact is Jen Temple whose little guy Jakob had the surgery earlier this year. I will also send her imformation to you in the same email. Here is an article on Jakob that you may also find helpful: http://www.thenownewspaper.com/Special+little+rare+surgery+requires+rare+courage+help+from+friends/3707992/story.html

      Lastly, there is a Facebook Page set up called Portal Vein Thrombosis & Portal Hypertension in Children and Adults. Both Jen and Shelly have made several posts on there, and it is growing more and more each day. Lots of questions and great dialogue happening.

      Hope you find the answers you need to proceed? If you don’t mind I am a person of faith, so prayer is an important element of my life – I will be praying for your daughter plus you as you continue on this journey.

      Reply
  6. Kelly Sergent

    Hi everyone!
    My son, Patrick, had the Rex Shunt procedure by Dr. Superina two years ago; my son was two years old at the time. Patrick was a preemie and had started to lose weight at a few months old. It was then that the PVC was miraculously discovered. We opted to have the surgury at 2 yrs. not because Patrick had any of the life-threatening conditions that many others with PVT have, but because we knew that they would come and that the Rex Shunt is more successful in the young.

    What Patrick was battling with was significant developmental delays in speech, physical, and occupational (fine motor). The Rex Shunt changed my little boy into a new child. Within weeks, he was speaking complete sentences (Dr. Superina didn’t believe me; he had to have written documents from Patrick’s speech therapist), running without falling, and gripping small objects. We were AMAZED! It was like someone had taken a veil off of my son and we could finally see the real Patrick.

    I am more than happy to talk with anyone about the Rex Shunt, Dr. Superina, and Chicago (I live an hour west of Chicago and grew up by the airport on the south side). I can say, without a doubt, that this surgery is worth it. Whatevery you have to do, do it. This is the only actual cure for PVT. It just breaks my heart to read what everyone is going through- the pain, the procedures, the constant worry. If you can, in any way, get the Rex Shunt, do it. And use Dr. Superina- he’s the one who “invented” it and did the majority of the operations. Anyway, if anyone wants to talk, I’m here.

    Kelly

    Reply
  7. Tatyana Danilenko

    Hello Kelly!
    Thank you for your encouraging post regarding your son Patrick!
    From what I know for sure- the Rex-shunt procedure for PVT was firstly invented in Brussel, Belgium, in 1989. The author of that kind of shunt, Dr. Jean the Ville the Goyet, performed the first Rex-shunt and the operation was successful. In the early 90-es many doctors throughout the world started doing that more or less succsessfully.
    I’m pretty convinced that by today Dr. R. Superina from Chicago is the most experienced and succsessful one among others who is perfoming Rex in children. As in our case, when Drs. in Germany told me that the Rex-shunt is definitely impossible in Sonya. Dr. Superina, after taking look at the disks with the images of Sonya’s investigations, resumed that he believes that Sonya should be a candidat for Rex.
    I think, eventhough it was not his idea firstly, he knows his own professional secret how to do that, when others say “no”, he is sure he can do that. He is a very gifted Dr. from God.
    We are trying to raise money right now to be able to come to Chicago for Rex, performed by Dr. Superina. Hopefully my daughter can survive until we will be ready to go.
    Thank you again for the miraculous story of Patrick’s healing.
    With the warmest regargs, Tatyana.

    Reply

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