93 thoughts on “The Rex Shunt Procedure for Portal Hypertension”

1. Amy March 15, 2011 at 11:53 am

   My goodness, reading through everyones posts has been a heartfelt experience for me just to find out that there are others out there dealing with similar situations. I would like to THANK each and every one of you for sharing your experiences and Clint for starting this blog – you are all a BLESSING to have.
   Alli – our family just had a surgical consult on March 10th with Dr. Robert Acton at the University of MN Amplatz Children’s Hospital also. He has been working with us since our Alex (now 3 1/2 yrs. old) was born. From our experience with him, he is a very knowledgeable surgeon and he studied under Dr. Superina in Chicago. At this time, I believe that he stated he has done 6 surgeries of this type, but they have been mostly in response to fixing things after a liver transplant has been performed.
   My Alex has also been diagnosed with PVT (Cavernous Transformation of the Portal Vein), he also has had esophageal and stomach varices, portal hypertension and an enlarged spleen. We found out about his condition in December of 2008 when he had a bleed from one of the multiple esophageal varices that had developed from his condition, at this point we almost lost him, as his hemoglobin had dropped down to a 3. At that time, we spent about a month in the hospital with him between diagnosing him, getting him the blood transfusions that he needed and also finding out that he had a non-related condition that needed to be taken care of which is referred to as Hirschsprung’s Disease. Dr. Acton is the surgeon that performed this surgery for him – so we do have a history with him and trust his expertise. Since his diagnosis we have been doing “temporary” fixes by going to the U of M every couple of months for repeat endoscopy with banding procedures in order to help prevent these esophageal varices from bleeding again. We have been hoping that Alex’s body would try to “FIX” itself in a sense by creating collateral veins that would be able to take over some of the load of what the portal vein is supposed to do in order to decrease some of the pressure in his little body. We just had a repeat MRA/MRV done in Oct. and since his original diagnosis nothing has significantly changed for the good. His spleen has gotten larger and we continue to deal with these life threatening varices as well, so Alex’s team has decided that now would be the time to progress forward and get the REX SHUNT. Dr. Acton has reviewed all of Alex’s information and is sharing it with Dr. Superina. He is also hoping that with the University of Minnesota being a teaching hospital that he can get Dr. Superina to come to MN and assist him with Alex’s surgery. This would be the best of all possibilities for our Alex, but we are currently waiting to find out if this is possible. Dr. Acton shared with us that there are many hoops that need to be jumped through in order to get Dr. Superina here, but that it is possible!!! :O) Right now, Alex is doing well – he is “healthy” and strong and is potentially an ideal candidate for the REX SHUNT. Dr. Acton has suggested that we try to look at the months of May, June or July of this year to accomplish setting the date for Alex’s surgery.

   **If there are any parents that would be willing to share more information about the actual surgery and how their child responded and is currently doing, your experiences would be greatly appreciated!! From one parent to others, THANK-YOU so much in advance for your caring in this matter.

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2. Rodrigue March 15, 2011 at 7:03 pm

   Hi,

   Our daughter was diagnosed fortuitously with PVT/PH in 2009. She had no bleeding episodes. At the end of 2010, a Rex Shunt surgery was performed by Dr. Peter Kim at SickKids Hospital in Toronto, Canada. She is 14 years old and doing very well. Dr. Kim’s team has a lot of experience with this procedure and we are very grateful to him.

   When we were researching potential treatments for her chronic condition, we found in the medical litterature other doctors working and doing research in that field. I believe some of them have not yet been mentioned on your blog:
   – Dr. Simon Ling, gastroenterologist at SickKids Hospital;
   – Dr. Benjamin Shneider, Pediatric Hepatology Program at Children’s Hospital of Pittsburgh;
   – Birmingham Children’s Hospital, Birmingham, UK
   – Hôpital Bicêtre, Paris, France

   Hope this information can be helpful.

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   1. Clint Post authorMarch 16, 2011 at 1:33 am

      Rodrigue,

      Great to hear another positive story regarding the Rex Shunt procedure. Thank you so much for providing more doctor’s names for other people to access regarding the procedure! The response I have had in the past few weeks has been fast and furious and I had no idea what kind of response I would get regarding this segment of my blog! Instead of people picking through the responses for the specialists names, I hope to compile a list so people can easily access the help they need in their geographical area.

      Thanks again,
      Clint

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3. Amanda Bladsacker March 28, 2011 at 9:21 pm

   My daughter, Reilly, is 3 1/2 and was diagnosed with EHPVT, portal hypertension, and esophageal and gastric varices after a bleeding episode on Feb. 28th, where she lost half of her blood volume. She apparently has a clot from her umbilical catheter, since she was born at 27 weeks gestation. We have consulted with the doctors here and are going to Houston for a second opinion. How do we know if she is eligible for a REX shunt? Do I need to have her GI forward the information and case study to Dr. Superina to have him review the material? Any help, support, and information regarding this condition would be greatly appreciated. Tell me about the hoops that we need to get through. We are getting ready for her 4th EGD / banding next week.

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   1. Clint Post authorMarch 29, 2011 at 3:43 am

      Dear Amanda,

      Wow … what an ordeal for Reilly and your family to go through! I pray that God’s hand will be upon Reilly and you will see some positive results in the near future! I also read through your blog to better understand the situation. The only thing I can say at this point is that doctor’s (gastroenterologists in particular) are aware of the Rex Shunt procedure. I can only surmise at this point that it depends on what other complications Reilly may have that could curtail the decision. If I can encourage you in any way though, the procedure has proven to be successful on many children (300+ so far).

      Lastly, I agree that that most people who get portal vein thrombosis usually have liver complications from alcoholism or other causes such as hepatitis. In my case and that of a “few” others I have met through blogging, we have a much rarer cause called non-cirrhotic portal hypertension (PH). I was not a drinker and fortunately my liver function is good. PH is not limited to people over the age of 60 as I was only 42 when it was discovered. There are a few others I know who have had it since birth, and maybe if it was discovered earlier and the Rex Shunt was known they could have been helped? The good thing is that there is hope – especially for children with the condition, however the few known attempts to utilize the Rex Shunt on adults have unfortunately failed. Children are much more resilient and the condition of the portal vein is stronger the younger the child, thus the procedure has worked well. Again it all depends on the individual child and the complications if any they may have?

      No doubt you have been searching for answers and have turned over every stone so far. I encourage you to keep asking questions and if you have not already done so read some of the posts on this blog. If you have any further questions please feel free to leave a comment and I can email you personally or post my answer here.

      Prayerfully,
      Clint

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4. Clint Post authorApril 8, 2011 at 12:58 am

   Dear Tatyana,
   Thank you for sharing your story regarding little Sophia. I am sorry to hear of her condition and hopefully we can find her some help? Firstly I would recommend you contact the Children’s Memorial Hospital in Chicago, Illinois and try to get in touch with Dr. Riccardo Superina if you can. Dr. Superina has performed over 300 of these operations on children and there is a high success rate depending on any other complications the child may have. Here is the link from my site to a recent list of specialists I compiled, including Dr. Superina: http://www.portal-hypertension.com/2011/03/17/rex-shunt-procedure-specialist-list/ The list includes a contact for the Birmingham Children’s Hospital in the United Kingdom and they may also know of a specialist on your side of the world who might be able to look at Sophia? There was a pediatric gastroentrologist at St. James’s University Hospital, in Leeds, UK by the name of Dr. Mark Stringer who had performed the Rex Shunt procedure on one child I know of, but unfortunately Dr. Stringer has moved to New Zealand to pursue adult medicine from what I was told. You may want to contact that hospital to inquire whether or not they may have a specialist who can also review Sophia’s case?

   You sound like you have a huge heart for children and judging the size of your family this seems to be a rarity in our day and age. May God bless little Sophia and the rest of your family as you pursue help for her condition! I will pray! Please keep me posted if you need anymore information, or if there is anything I can do from this side of the world.

   Kindest regards,
   Clint (Alberta, Canada)

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5. Tatyana Danilenko April 8, 2011 at 2:24 am

   Dear Clint,
   Thank you for your answer. I would like to contact Dr. Ricardo Superina, but I need to have his e-mail adress or the e-mail of the clinic. Can you help with that? Sophia is stable now and we are going home from hospital today. I’m looking foreward for the opportunity to contact a doctor with a positive experience of Rex-shunt in infants. Many people are praying about us and make their contributions for Sophia’s treatment and I believe by the time we will go for treatment we will have enough funds. Now my goal is to find a doctor and clinic. I pray to my Lord for His will about our further way. Thank you for your blog, it is really helpful.
   May God bless you. Sincerely, Tatyana.

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   1. Clint Post authorApril 8, 2011 at 9:10 am

      Dear Tatyana,

      Thanks again for your encouraging post. I am encouraged by your faith in the Lord … this is crucial at a time like this – I will continue to pray for Sophia and your family at this time.

      I am sorry I do not have Dr. Superina’s personal email, but there is one for the Children’s Hospital that may be redirected to him. It is a general email box for the hospital: KIDSDOC@childrensmemorial.org

      If you do not get a ready response, you may want to click the blue link highlighting his name as there are some phone numbers you could try also.

      Please keep me posted if you hear of anything?

      Blessings, Clint

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6. Tatyana Danilenko April 8, 2011 at 11:01 am

   Dear Clint,
   thanks for the hospital email box. I will write a letter for Dr. Superina and ask him to help my Sonya. Yes, I believe in the Lord Jesus Christ and serve Him by adopting orphans into family, loving them as my own children and telling them about the love of a Father.
   I will let you know about the answer from the clinic as soon as I get it.
   Thank you, Clint. May God bless you.

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   1. Clint Post authorApril 9, 2011 at 5:08 pm

      Dear Tatyana,

      Thanks again for your reply. I apologize that I got Sonya’s name mixed up … for some reason or another I mistakenly thought it was “Sophia”.

      May you blessed in your efforts as you raise these little one’s in the light of the Father’s love. I pray that Sonya will get the help she needs and that Dr. Superina answers quickly.

      Bless you!

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7. Alli April 9, 2011 at 10:24 pm

   Clint and All –

   On March 15th Amy wrote and told the story of her son Alex. Our son, Adam is 6 and his story sounds almost exactly the same as Alex’s – except we consulted with Dr. Acton when Adam was about 3 1/2. Then we had almost three years of no new flare ups. He continued to have low iron counts and anemia requiring regular hematology visits but no new bleeding, procedures or hospital stays.

   But in February 2011 we had a rough week in the hospital with some bleeding and we discovered some esophageal varices. So now we are back to looking closely at a Rex Shunt. We have an endoscopy scheduled this month to look for more varices. Since we live in Minnesota we were hoping Dr. Acton has had more experience with the Rex Shunt since we met with him three years ago. We are glad that Amy has had positive experiences with Dr. Acton and we would really like to compare some notes with her. Amy if you see our post we would love to connect and compare notes, you can email me at my husband’s email of david_pattberg@yahoo.com.

   We agree with Amy that this blog has been a fantastic forum to hear other’s experiences with PVT and Rex Shunts. Clint thanks so much for facilitating such a wonderful resource.

   Alli

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