The Rex Shunt Procedure for Portal Hypertension

Dear Clint,
I want to share our good news with you. We prayed for the way and we see it now- the University clinic of Regensburg, Germany, is ready to treat my daughter and we are now in the process of getting passports and visa, etc.
Another miracle or God’s mercy, as we understand that, is that we have sponsor to pay for treatment- this guy with a big heart is ready to pay 22000 Euro, can you imagine that?
Sonya and Sophya is one name, Sonya is the name for a little girl, Sophya is the name for an adult.
Please continue to pray for my daughter. She is ill now- she has the obstructive bronchitis and breathing insufficiency, the risk of rebleeding while caughing is very high and I’m afraid so much for her. She has to be stable and healthy untill we go to Germany.
Your blog became international and I think you are doing very important thing by connecting different people and giving them advices and simply listening to their problem.
May God bless you.
My best regards,Tatyana, Ukraine.

Hi Clint And everybody here on this important chat ,
My daughter Aimee has PVT and all related problems with it Veracies ,enlarge spleen low PLT etc…
We were checking the REX shunt but her Vein in her leaver is to small to hold it open after procedure so the Dr sugest the Renal shunt ..so me question if there is any one here who there kid had this kind of shunt surgery ???we scheduled for May 26th @ Sick Kids Hospital with Dr Kim And Fecteau to have the surgery Im very scared and canot decide what to do .
If there is any thing some one knows please share info with me

Thank you all

Clint,

I wrote a while ago about my son possibly having a Rex Shunt proceedure. After lots of tests he is going to have surgery June 1st. We are excited to see what changes this brings in his life. I would love if at all possible to get in touch with anyone with a young child that has had this proceedure. I’m looking for any info on what to expect for him as we go through recovery.

Thanks,
Jamie

My 8 year old daughter was diagnosed in march with PVT, thrombosis, varices and low platelets. Her spleen is one of the biggest they have sen at our childrens hospital. We had a repeat ultrasound on May 30 and her spleen has not gone down which is a shock because all doctors have physically examined her and felt like it did shrink. We are definitely having to look at Rex shunt and I am beyond petrified. We are going to have a second opinion and look at other options. I am very worried about not only the surgery itself but also the outcome of he surgery. My husband and I do not have the means of going out of state for he surgery but I am very Leary about letting doctors who have not performed this surgery perform this on her. She is also an in utero stroke victim. Any advise?!?

Hi everyone!
My son, Patrick, had the Rex Shunt procedure by Dr. Superina two years ago; my son was two years old at the time. Patrick was a preemie and had started to lose weight at a few months old. It was then that the PVC was miraculously discovered. We opted to have the surgury at 2 yrs. not because Patrick had any of the life-threatening conditions that many others with PVT have, but because we knew that they would come and that the Rex Shunt is more successful in the young.

What Patrick was battling with was significant developmental delays in speech, physical, and occupational (fine motor). The Rex Shunt changed my little boy into a new child. Within weeks, he was speaking complete sentences (Dr. Superina didn’t believe me; he had to have written documents from Patrick’s speech therapist), running without falling, and gripping small objects. We were AMAZED! It was like someone had taken a veil off of my son and we could finally see the real Patrick.

I am more than happy to talk with anyone about the Rex Shunt, Dr. Superina, and Chicago (I live an hour west of Chicago and grew up by the airport on the south side). I can say, without a doubt, that this surgery is worth it. Whatevery you have to do, do it. This is the only actual cure for PVT. It just breaks my heart to read what everyone is going through- the pain, the procedures, the constant worry. If you can, in any way, get the Rex Shunt, do it. And use Dr. Superina- he’s the one who “invented” it and did the majority of the operations. Anyway, if anyone wants to talk, I’m here.

Kelly

My daughter had the operation 3 years ago and I would be happy to reassure any parent who has concerns. Her operation was performed at Birmingham children’s Hospital in England.

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!