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.
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.”
Hi my son is 2 and has PVT we are in Australia and i cant seem to find anyone here who does this procedure. I am very interested in contacting Dr Superina to find out if my son would be a good candidate. If we can have fix this to avoid the complications that can follow (ive seen bleeding varacies in person as im a nurse myself) i would pay any amount of money even if we had to sell our house. If anyone has his contact number please let me know. Thanks Clare
Sorry to hear about your little guy! Hope we can help you by offering support at the very least. Click this link for a list of specialists who have experience with the Rex Shunt Procedure: http://www.portal-hypertension.com/2011/08/28/rex-shunt-for-sonya-update-08-28-11/
Dr. Superina just operated on a little girl from the Ukraine yesterday who I have posted information on. I know Dr. Superina will preview your diagnostic tests as he has done for others around the world and he will make recommendations after that information is received. You can call the Childrens Memorial Hospital in Chicago and they will be happy to get you started. As far as I know there is no one in Australia doing the Rex Shunt, but I know the Birmingham Childrens Hospital in the UK has some experience with the procedure also. They are both listed on the link.
Keep me posted,
Sorry I copied the wrong link in my previous message. Here is the list of specialists: http://www.portal-hypertension.com/2011/03/17/rex-shunt-procedure-specialist-list/
Clare – it sounds like you were able to connect with Dr. Superina and Shelly. Hope things come together for you soon.
I just found this site and I’m so glad I did. I would try ANYTHING even if the chance of success is 1%. I’m so desperately sick. I need some tiny speck of hope.
I am glad you found this site also, but am very sorry to hear of your illness.
My goal is to offer support to others going through this dreaded condition – even if only to offer a speck. Most people on here are looking for answers and hope, if not for themselves but for their own family members. I have provided some pertinent information on Portal Hypertension and for the last few years I have had this blog running I myself have learned a great deal from the very people who have submitted entries. Please feel free to update us on your condition with any new developments for the treatment, and if you have any questions I will do my best to find an answer for you or possibly put you in touch with someone who might help you.
Hi Clint, I was reading your entire website again with everything that is going on and I wanted to add that I know of a young man who is 21 who had a successful Rex right around the time of my son’s Rex revision in September of 2011. Dr. Superina also performed this Rex and from the few follow up posts from his mother he seems to be doing well. Hopefully adult Rex’s may become more of a possibility in those who are good candidates. If nothing else I hope this gives some hope to others looking for options.
Once again, thanks for this site. It has been a wonderful source of information and support!
Thank’s for relaying this story Kelly! This is important information for all looking for answers. In some ways I have been somewhat pessimistic about those who are older as the prospects for a positive outlook through medical procedures seems somewhat remote. With time and the advancement of medical science I know that the possibilities for “good” change become better each day. I am excited over what Dr. Superina has done and this especially is encouraging for those with young children. Not only has the Rex Shunt proven to be a life saver for many, but also other procedures, as rare as they are, such as the Sugiura Procedure seem to be making a difference. I think the key words to consider is what you have said above – “those who are good candidates”. We are blessed to be living in the times we now are in, where breakthroughs seem to be commonplace in medicine, and with that I want to say that many who may not be good candidates may eventually be brought to that place where considerations are made. Your note encourages not only myself but others to not give up, and to keep fighting (all the while to keep praying too).
Be blessed Kelly … I’m still praying … it’s about all I can do from this distance. I can’t even begin to imagine what you have been through this past week or so and “your son” and family have been on mind alot.
You are a remarkable person and thank you for giving us all hope.
I am writing to you because I need some hope and a place to start looking for new treatment. My boyfriend Terry is 53 and has PVT. He has suffered one episode of bleeding varacies and is stable now for a couple years. He has liver cirrosis and due to the PVT, his liver he can’t process ammonia. He takes the usual drugs for this which includes lactulose. However, his quality of life is pretty poor due to the fact that he is either sitting on the potty from taking lactulose or suffering from such extreme fatigue due to the high ammonia levels. His stomatch hurts practically every time he eats a meal and he would rather sleep then do most anything else. We live in Atlanta and he sees the Emory docs. He has been told he is not a candidate for TIPS and never really asked about Rex Shunt. I am sure the Emory guys know what they are doing but they never seem to try to think outside the box and suggest anything new to improve his quality of life. There has to be something out there that would help him! We are willing to travel anywhere and talk to anyone. What can I do first? Where do I start? I would love to start with someone who is a pro-active like Dr. Supernia seems to be from reading these posts. How about Barcelona, do you know of anyone who has gone there? Help!
Thank you for your post and kind comments. I am sorry about your boyfriend’s condition – I know it is hard for you to see him suffer like this, but I am sure he appreciates your understanding as it would be hard to go through something such as this without the support you provide.
I never want to give anyone false hope, but only provide for them the support and the possible means to contact someone who may review their case. My best guess is the reason that doctor’s told you your boyfriend is not a good candidate for the TIPS maybe because of the complication he has regarding cirrhosis of the liver. That being said I am not a doctor and sometimes it is good to get a second opinion. To my knowledge the Rex Shunt has only been attempted on a few adults, and the operation failed. The Rex Shunt works better on children because atrophy has not set into the arteries like is does in adults. Dr. Superina is renowned for his expertise regarding the Rex Shunt, but primarily his focus is on children. There is however another procedure that is less well known and that is a method called the Sugiura procedure (see: http://www.ncbi.nlm.nih.gov/pubmed/8042326) which was developed in Japan, and from what I have read is relatively successful in certain patients. It does not seem to be a common procedure and the information I have on it is quite technical, but it doesn’t hurt to ask. You could call Dr.Superina’s office to see if he might review your boyfriends case for this treatment option, or you may also want to contact Dr. Jean Emond in New York as I have had a few people recommend him to me since I started this blog. See contacts below:
Dr. Jean Emond
PH Room 14C
622 West 168th St
New York, NY 10032
2300 Children’s Plaza
(707 W. Fullerton Ave.)
Chicago, IL 60614-3363
Call 1.800.543.7362 (1.800.KIDS DOC)
I hope this helps? I wish I could offer you more options that what I have here, but the options seem to be few and far between.
I have had a modified Sugiura with spleenectomy. It was done at U of Wisconsin by Dr. Rikkers in 2001. It reduced the size of the varicies significantly. I experience some digestive issues, but it is worth it. Just had my annual Endo today. No ligation needed.
Excellent news! Thank you for your post!
Very good news indeed! My doctor told me that doctor’s will only use the Suguira as a last resort in North America. That being said doctor’s in Mexico seem to be using it more than they do in the US or Canada. A gastroenterologist I had when they first discovered PVT in me wanted to do a splenectomy on me, but my hematologist would not agree to that. My spleen is quite enlarged, however I have not had any significant pain from that, but only experience intense pain in the lower bowel region due to artery congestion. Take care and thank you for posting this!
Pinky-can you elaborate on your modified sugiura? My 12yr old may need this procedure and like Clint has said everything on the Internet about it so technical. Would love to know exactly what was done and the issues you are experiencing because if it. I am very concerned about the ammonia build up and possible encephalopathy afterwards. Any issues with that? How long of a recovery period was it? Thank you in advance for any information you can give me!
Does anyone else have splenomegally too? My doctors can’t decide if they should take my spleen out or not. Does anyone have digestive problems? I find I have trouble digesting food especially protein, fats, and sodium. I also had my gall bladder removed.