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.
Hi Jamie ,
But the question is why one Dr want to wait and the other wants to do the surgery right a way ?
Clint ,
you can share my email no prob
thanks for your help
Jamie ,did your son had bleed or have any other complications like enlarge spleen verecic .
did the Dr do something to earn some time because you know that in 80% of this cases the body find a new path for the blood himself without any surgery , they supposed to think about surgery ih he bleeds or have any other complications .
waiting for you reply , all best
Lenny,
Thanks again for your comments and questions. Were you able to reach Dr. Superina’s office yet? As okayed by you I will forward your email address to a few of the other parents, and hopefully you will hear from one or more of them soon? I will be in and out of the house today, but will be checking my messages for a response.
Take care, Clint
Hi Clint ,
The parents did contact me and its great to hear from there own experience it is so important for me and Im sure for many other parents who there precious little ones have the same rare condition.
I just cant thank you enough .
Excellent – you are not alone!
Peace,
Clint
HI Clint,
I wrote you about a month ago, my son Aidan was having the rex shunt preformed by Dr. Superina. Unfortunatly my son passed away 48hrs after the surgery. I got your email today from a grandma who’s little boy also has pulmonary hypertention. I just want to tell you how much it means to me to be able to help even just a little, someone who is going through what our family did. There was no info for us on how to proceed. Hopefully our story can help someone else make the right descisions or just find comfort. Thank you so much for your site.
Tracie
http://strucksuper.blogspot.com/
Dear Tracie,
As I relayed to you last night via email – we are very sorry for the loss of little Aiden. My heart and that of my wife has been heavy since learning of this news. Thank you for offering your help, by stating how much it means to be able to help (if even a little bit) someone else who is going through what your family has gone through. May you find peace and comfort in the days ahead.
Prayerfully, Clint and family
Any idea how old is “too old” for the Rex shunt procedure? My daughter is 16 – was diagnosed with cavernous transformation of the portal vein at age10. We’ve been encouraged to take a “wait and see if anything happens” approach. In the meantime, her spleen has become grossly enlarged, causing thrombocytopenia and limitations on activities ( not to mention my constant fear that her spleen will rupture). The oldest child I’ve seen mentioned on your blog was 13, so I’m just curious…
Also, we are in AL – any docs in the Southeast performing this procedure that you’re aware of?
Hi Laurie,
Thanks for your comments. Good question on the how old is “too old” regarding the Rex Shunt. I don’t know of any particular cut off date for the procedure, but only have heard that younger children respond better. From my understanding this has to do with the fact that the portal vein is stronger and more resilient than someone older. I do stand corrected though so please let me/us know if you hear anything different from another reliable source?
Regarding whether I knew of any doctor’s performing the procedure in the Southeast, there could be some, but I only know of 2 other doctor’s who have done the operation.
Dr. Jean Emond at NewYork-Presbyterian Hospital/Columbia
see: http://asp.cumc.columbia.edu/facdb/profile_list.asp?uni=je111&DepAffil=Surgery
Dr. Graeme John Pitcher at the University of Iowa see: http://www.healthcare.uiowa.edu/surgery/graeme-pitcher.html Hope this helps?
Please keep me in the loop! Kindest regards, Clint
My son also has PVT – we have not had any surgery yet but I know Robert Acton at the University of Minnesota also performs the Rex Shunt surgery.
Thanks Alli – this is great to have another name we can add to the list of specialist. Can I ask how old your son is?