In the last decade, the Rex Shunt procedure has been successfully performed on children with portal vein thrombosis, however to the best of my knowledge has not been performed on adults with the exception of one person which I found had the operation in Niigata, Japan. The following article (click link below) was posted by a group of Japanese doctor’s who had successfully performed the Rex Shunt Procedure on an adult male a few year’s ago. Although the article is technical in nature, nonetheless I hope you are able to glean some good information from it?
It is interesting to note that this group of Japanese doctor’s are recommending the Rex shunt procedure be performed on a larger scale for adults with portal vein thrombosis.
http://www.springerlink.com/content/e53875128l97v008/fulltext.html
This article begs the question of whether or not there is general consensus amongst gastroentrologists and other specialists that this procedure is even a viable option for patients with PVT. Cost factor’s and risks versus gains would likely weigh into the equation also? This being said I would really appreciate input from anyone, especially doctor’s as the report above and a recent statement (see below) from Dr. Riccardo Superina (Children’s Memorial Hospital Chicago, IL) support the procedure be performed on adults.
“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.”
This is great news! So, I think I might make a few enquiries with Dr Superina and find out if he would be willing to operate on me!
It may be worth a try to contact Dr. Superina as you have youth on your side? Don’t know what funding is available for you but you may want to investigate that also. Wouldn’t be great if this was to be?
Hey Clint,
E-mailed doc and hospital the other day offering to be an adult ginea pig for the adult option of rex shunt proceedure! Fingers crossed, will figure out the funds later if they say yes but regardless of the funds, anything they can suggest I would LOVE to have considered! Lots of prayers that they will say “yes”, and “come on over!” 🙂
Claire,
Wow Claire you are one brave girl! You have endured much in your life, and I think if I was in your position I believe I would be doing the same thing!
Please keep me in the loop as soon as you hear of anything? Praying for sure!
HI CLint
I have spoken with Dr. Jean Emond in NewYork he does both Children and Adult Rex Shunts. He is so kind.
His number is 212-305-9691
Thanks Jen
Good to talk to you today in person! Thanks for the information on Dr. Emond – I will try to contact him when I get a free moment.
Hi!
my name is Kristi, i was diagnosed with portal hypertension when I was two years old ( this was back in 1991) … I was approved for the surgery for a Rex Shunt when I was fifteen, but was not able to have the procedure due to the fact that my portal vein had atrophied. However, I did have a spenal-renal shunt, which worked just as well. So if you aren’t able to get the Rex Shunt, ask about the Spenal Renal shunt,( either way I believe the blood is diverted from your hepatic portal vein and the pressure is relieved,
Hi Kristi,
Thank you for taking the time to post your experience on this blog. You also have had quite a journey and this is valuable information to others who may be experiencing the same things. From what I have learned lately there seems to be a consensus among doctors that the best candidates for the Rex Shunt are children under the age of 5 as they have not experienced vascular atrophy to a large degree. Yes, the Splenel Renal shunt is another good option that possibly may work, however unfortunately it is not one for me as doctor’s do not want to “open me up” for any reason due to the fact I have to be so highly anti-coagulated. There are other complications that can play into whether or not any kind of operation can be performed for portal hypertension, but I always encourage others not to give up the fight. Thanks again for your insight!
O I also had portal vein thrombosis. And the procedure was done by Dr. Surperina, who I found to be a really nice guy.
I was diagnosed with having a large spleen when I was born. It wasn’t until 5 years ago, when I was 19 that I learned I had esophageal varicies and portal hypertension. I’ve been fortunate enough to never experience any major complications. I was seen at the Mayo Clinic a few years ago, but they said there isn’t really anything they can do for me at this time, that it is best to wait to do any procedures until I have complications.
I’ve seen Dr. Superina’s named mentioned quite a few times on here. He actually contacted my doctor to ask if I would be willing to do the Rex shunt operation as an experiment on an adult. Unlike the other lady, I denied the surgery. Everything was so new to me at the time I wasn’t ready for any other risks.
I feel that I am fortunate. Yes, this can be a terrible thing to live with. I’m 24, my varices are large, I’ve been told by multiple doctors that they will bleed at some point in my life and more than likely, the outcome won’t be good. But in my eyes, it could be worse. I’m not in any kind of pain, I look healthy and I’m still able to enjoy my life. I pray for everyone out there who is also living with this.
Hi Stephanie,
Thanks for your post.
Like you I have been told I will likely bleed at some point, but I have managed to stave that off for the most part – albeit for a bleed I had in the varices in my stomach back in 2004. Coincidentially, I was contacted by Dr. Superina’s nurse last week regarding a Mom whose little girl may be a candidate for the Rex Shunt. “Amy” Dr.Superina’s nurse said that I should considering sending my imaging down to the hospital for him to review and this would be for another rare procedure called the Sugiura procedure. I am not getting my hopes up too high as I have an underlying clotting condition which requires heavy amounts of anti-coagulants to manage, and my doctor’s do not really want do anything because of the high risk to bleed or clot again. I am 50 and have lived with Portal Hypertension now for 9 year’s now with a few setbacks along the way, but for the most part I remain optimistic.
It looks like you have covered your bases well by consulting at the Mayo clinic. One never wants others to give up finding answers (I won’t), but when you realize like we have that there really is no other option for us except to carry on with the prescriptions we take and to remain upbeat – that is the best thing to do at this point. I feel doctor’s have done all they can for me also – I am relatively healthy and am also able to enjoy my life. “Yes” I do also pray for those who are also living with this, and in particular the “little one’s” whose hope may be greater than ours because of the Rex Shunt and a few other procedures which may help in the long run. Keep pressing on Stephanie!!!