Comments on: The Rex Shunt Procedure for Portal Hypertension http://www.portal-hypertension.com A resource guide for those diagnosed with portal hypertension or portal vein thrombosis (PVT) by Clint Steenson Tue, 07 Feb 2012 21:41:16 +0000 http://wordpress.org/?v=2.9.1 hourly 1 By: Clint http://www.portal-hypertension.com/the-rex-shunt-procedure-for-portal-hypertension/comment-page-1/#comment-3082 Clint Tue, 07 Feb 2012 21:41:16 +0000 http://www.portal-hypertension.com/?page_id=44#comment-3082 Sara, Thank you also for your post. As for most people who blog on here, I have to admit I have extra emphathy for the kids with this condition as opposed to adults. That being said though, there seems to be a greater resiliency with kids and just a few more options if complications allow. As for your son's case "I pray" it to be true! If a good solution is to be found for your son, it would be great to know as I don't have much information on doctor's I can suggest to other who reside in the UK or your particular part of the world. If anything please let me know what happens. Staying true to my word because I am a person of faith, I will pray for the best possible outcome for your son, Tiffany's daughter and all the children who are dealing with this most disconcerting condition! One more thing ... are you going dealing with doctor's at Birmingham Childrens Hospital? Best, Clint Sara,

Thank you also for your post. As for most people who blog on here, I have to admit I have extra emphathy for the kids with this condition as opposed to adults. That being said though, there seems to be a greater resiliency with kids and just a few more options if complications allow. As for your son’s case “I pray” it to be true! If a good solution is to be found for your son, it would be great to know as I don’t have much information on doctor’s I can suggest to other who reside in the UK or your particular part of the world. If anything please let me know what happens. Staying true to my word because I am a person of faith, I will pray for the best possible outcome for your son, Tiffany’s daughter and all the children who are dealing with this most disconcerting condition! One more thing … are you going dealing with doctor’s at Birmingham Childrens Hospital? Best, Clint

]]> By: Sara http://www.portal-hypertension.com/the-rex-shunt-procedure-for-portal-hypertension/comment-page-1/#comment-3074 Sara Tue, 07 Feb 2012 14:19:20 +0000 http://www.portal-hypertension.com/?page_id=44#comment-3074 Hi Clint, My case is very much similar to Tiffany's. my son is 33 months old and was diagnosed with PVT at 14 months. he suffers from low platelets enlarged spleen and oesophagean varices that need to be banded every 4 months. we've had the CT scan results recently and it appears the clot is too extended into the liver for a ref shut. we are waiting for a decision from the doctors. we live in the republic of Ireland and London is the nearest center of excellence over here. We can only hope for the best possible outcome. Hi Clint,
My case is very much similar to Tiffany’s. my son is 33 months old and was diagnosed with PVT at 14 months. he suffers from low platelets enlarged spleen and oesophagean varices that need to be banded every 4 months. we’ve had the CT scan results recently and it appears the clot is too extended into the liver for a ref shut. we are waiting for a decision from the doctors. we live in the republic of Ireland and London is the nearest center of excellence over here. We can only hope for the best possible outcome.

]]> By: Clint http://www.portal-hypertension.com/the-rex-shunt-procedure-for-portal-hypertension/comment-page-1/#comment-2801 Clint Wed, 18 Jan 2012 18:09:58 +0000 http://www.portal-hypertension.com/?page_id=44#comment-2801 Hi Tiffany, Thanks for your post. Sorry to hear of your daughter's situation. In answer to your question regarding someone in NYC doing the Rex Shunt, I can't recommend anyone off hand as there only seems to be a few worldwide, however I will suggest you try to get in touch with dr. Jean Emond in New York as he seems to have a good handle on things of this nature. Here is a direct link from my site which includes all the docs I know "in the know" concerning The Rex Shunt: http://www.portal-hypertension.com/2011/03/17/rex-shunt-procedure-specialist-list/ Also ... You may want to check out this Facebook site where many parents of kids who have had the Rex Shunt dialogue with others. Portal Vein Thrombosis & Portal Hypertension in Children and Adults. (sorry I don't have the direct link handy but just search on Facebook if you have an account). Hope this helps? Please keep me posted if you find out anything. Best, Clint Hi Tiffany,

Thanks for your post. Sorry to hear of your daughter’s situation. In answer to your question regarding someone in NYC doing the Rex Shunt, I can’t recommend anyone off hand as there only seems to be a few worldwide, however I will suggest you try to get in touch with dr. Jean Emond in New York as he seems to have a good handle on things of this nature. Here is a direct link from my site which includes all the docs I know “in the know” concerning The Rex Shunt: http://www.portal-hypertension.com/2011/03/17/rex-shunt-procedure-specialist-list/

Also … You may want to check out this Facebook site where many parents of kids who have had the Rex Shunt dialogue with others. Portal Vein Thrombosis & Portal Hypertension in Children and Adults. (sorry I don’t have the direct link handy but just search on Facebook if you have an account). Hope this helps? Please keep me posted if you find out anything.

Best, Clint

]]> By: Tiffany Knight http://www.portal-hypertension.com/the-rex-shunt-procedure-for-portal-hypertension/comment-page-1/#comment-2800 Tiffany Knight Wed, 18 Jan 2012 17:07:26 +0000 http://www.portal-hypertension.com/?page_id=44#comment-2800 Hi, My daughter was recently diagnosed with portal hypertension and esophageal varices after a terrifying GI bleed. She has been suffering with enlarged spleen and vomiting for over 2 years but no one was able to figure out why until she bled recently. I have decided have the Rex Shunt procedure. I'm a little nervous because I live in NYC and she will be having surgery at Columbia Presbyterian and I can't seem to find out any information about any kids having operation there. If anyone knows someone whose had operation here your input is greatly appreciated. Also, I can't seem to find out how long before complete recovery. Any input or information would be great. Hi,
My daughter was recently diagnosed with portal hypertension and esophageal varices after a terrifying GI bleed. She has been suffering with enlarged spleen and vomiting for over 2 years but no one was able to figure out why until she bled recently. I have decided have the Rex Shunt procedure. I’m a little nervous because I live in NYC and she will be having surgery at Columbia Presbyterian and I can’t seem to find out any information about any kids having operation there. If anyone knows someone whose had operation here your input is greatly appreciated. Also, I can’t seem to find out how long before complete recovery. Any input or information would be great.

]]> By: Clint http://www.portal-hypertension.com/the-rex-shunt-procedure-for-portal-hypertension/comment-page-1/#comment-2476 Clint Tue, 03 Jan 2012 07:38:11 +0000 http://www.portal-hypertension.com/?page_id=44#comment-2476 Hello, Thanks for your inquiry. Sorry to hear of your son's PVT. I only am familiar with 2 places closest to India on the European continent that may do the procedure. For doctor's in North America please refer to this link from my site: http://www.portal-hypertension.com/2011/03/17/rex-shunt-procedure-specialist-list/ (I would recommend you try to get in touch with Dr. Superina at Children's Memorial Hospital in Chicago (see:http://www.childrensmemorial.org/findadoc/bios.aspx?id=993), or you may try Dr. Jean Emond in New York see: http://asp.cumc.columbia.edu/facdb/profile_list.asp?uni=je111&DepAffil=Surgery Here is the contact information for the European Hospitals: Birmingham Childrens Hospital St Chad’s Queensway Birmingham, West Midlands B4 6NH, United Kingdom Phone 0121 333 9999 *Sorry but I do not have a specialists name for this hospital as this information was only passed on to me by a subscriber last week. If you have a name – please let me know. France Hôpital Bicêtre 78 rue du Général Leclerc 94270 Le Kremlin-Bicêtre, France 01 45 21 21 21 Let me know what you find out? All the best, Clint Hello,

Thanks for your inquiry. Sorry to hear of your son’s PVT. I only am familiar with 2 places closest to India on the European continent that may do the procedure. For doctor’s in North America please refer to this link from my site: http://www.portal-hypertension.com/2011/03/17/rex-shunt-procedure-specialist-list/
(I would recommend you try to get in touch with Dr. Superina at Children’s Memorial Hospital in Chicago (see:http://www.childrensmemorial.org/findadoc/bios.aspx?id=993), or you may try Dr. Jean Emond in New York see: http://asp.cumc.columbia.edu/facdb/profile_list.asp?uni=je111&DepAffil=Surgery

Here is the contact information for the European Hospitals:

Birmingham Childrens Hospital
St Chad’s Queensway
Birmingham, West Midlands B4 6NH, United Kingdom
Phone 0121 333 9999

*Sorry but I do not have a specialists name for this hospital as this information was only passed on to me by a subscriber last week. If you have a name – please let me know.

France

Hôpital Bicêtre

78 rue du Général Leclerc
94270 Le Kremlin-Bicêtre, France
01 45 21 21 21

Let me know what you find out?

All the best,

Clint

]]> By: dr pankaj dabas http://www.portal-hypertension.com/the-rex-shunt-procedure-for-portal-hypertension/comment-page-1/#comment-2473 dr pankaj dabas Tue, 03 Jan 2012 05:30:01 +0000 http://www.portal-hypertension.com/?page_id=44#comment-2473 hi clint, my son 3 years old has portal vein thrombosis.i stay in delhi india.can you tell me the nearest and best centre for rex shunt. hi clint,
my son 3 years old has portal vein thrombosis.i stay in delhi india.can you tell me the nearest and best centre for rex shunt.

]]> By: Clint http://www.portal-hypertension.com/the-rex-shunt-procedure-for-portal-hypertension/comment-page-1/#comment-1427 Clint Tue, 01 Nov 2011 01:58:49 +0000 http://www.portal-hypertension.com/?page_id=44#comment-1427 Hi Tracie, Thank you for your kind comments. I certainly DO remember you. How are you doing? By no means is your support small as you have walked through a most difficult journey and by far would have an understanding greater than most. I appreciate your support - if even coming on the site to comment in this manner. From what I have learned so far is that people with portal hypertension can develop additional complications, and in the case of Aiden this was not an exception. You are most welcome to comment anytime you feel a parent of a child or a person with Portal Hypetension could use an empathetic word. Kindest regards, Clint Hi Tracie,

Thank you for your kind comments. I certainly DO remember you. How are you doing?

By no means is your support small as you have walked through a most difficult journey and by far would have an understanding greater than most. I appreciate your support – if even coming on the site to comment in this manner. From what I have learned so far is that people with portal hypertension can develop additional complications, and in the case of Aiden this was not an exception.

You are most welcome to comment anytime you feel a parent of a child or a person with Portal Hypetension could use an empathetic word.

Kindest regards,

Clint

]]> By: Tracie Hodgson http://www.portal-hypertension.com/the-rex-shunt-procedure-for-portal-hypertension/comment-page-1/#comment-1419 Tracie Hodgson Mon, 31 Oct 2011 16:40:17 +0000 http://www.portal-hypertension.com/?page_id=44#comment-1419 Hi Clint, Not sure if you remember me? My son Aidan had the Rex shunt procedure in February. He passed soon after. I happened across a post on Facebook earlier today. I want to tell you how amazed and humbled I am at all the resources you and all of these amazing families have brought together. There is so much hope and support from everyone involved. As always I offer my support and what small insight I can to those families facing the same road we did. With sincere gratitude and support Tracie Hodgson (Aidan's mom) Hi Clint,

Not sure if you remember me? My son Aidan had the Rex shunt procedure in February. He passed soon after. I happened across a post on Facebook earlier today. I want to tell you how amazed and humbled I am at all the resources you and all of these amazing families have brought together. There is so much hope and support from everyone involved.
As always I offer my support and what small insight I can to those families facing the same road we did.
With sincere gratitude and support
Tracie Hodgson (Aidan’s mom)

]]> By: April http://www.portal-hypertension.com/the-rex-shunt-procedure-for-portal-hypertension/comment-page-1/#comment-1005 April Sun, 14 Aug 2011 14:54:23 +0000 http://www.portal-hypertension.com/?page_id=44#comment-1005 We have recently traveled to Children's in Cincinatti where we saw Dr. Ya Zigi. My four year old son will have the Rex Shunt, but we were told that because he hasn't had a bleed yet (from the varices) we have to wait. She told us they are trying to get it passed so that the procedure can be done before a bleed, but after doing some research from what I understand it can be done after diagnosis, before a bleed. If anyone has any information on this it would help. Thanks! We have recently traveled to Children’s in Cincinatti where we saw Dr. Ya Zigi. My four year old son will have the Rex Shunt, but we were told that because he hasn’t had a bleed yet (from the varices) we have to wait. She told us they are trying to get it passed so that the procedure can be done before a bleed, but after doing some research from what I understand it can be done after diagnosis, before a bleed. If anyone has any information on this it would help. Thanks!

]]> By: Clint http://www.portal-hypertension.com/the-rex-shunt-procedure-for-portal-hypertension/comment-page-1/#comment-966 Clint Fri, 05 Aug 2011 16:35:29 +0000 http://www.portal-hypertension.com/?page_id=44#comment-966 Hello Amanda, Your comments are appreciated! It's always good to hear success stories, and especially ones from your part of the world! I was wondering though, for the sake of others if you could provide the name of the doctor who performed the operation, and also if you know of how many Rex Shunt procedures have been performed at the Hospital? How old was your daughter when she had the operation? Thanks! Hello Amanda,

Your comments are appreciated! It’s always good to hear success stories, and especially ones from your part of the world! I was wondering though, for the sake of others if you could provide the name of the doctor who performed the operation, and also if you know of how many Rex Shunt procedures have been performed at the Hospital? How old was your daughter when she had the operation? Thanks!

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