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VEPTR: Yes or No ?
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Posted 2013-10-14 12:09 PM (#42192)
Subject: VEPTR: Yes or No ?

New User

Posts: 2

Hello everybody,

My name is Angela, I’m from Italy. My English is not very good but I’ll try to explain. I don’t know if this is the right place to post this kind of request, if not, I apologize for that.
I’ll try to briefly describe. In case you need more details feel free to ask.
My son Alessandro, 12 years old, has a congenital spinal deformity: Spondylocostal Dysostosis with severe malformation of the vertebrae and fused ribs.

Follow-up has always been done in Italy. Over the years, during growth, the situation was always been fairly stable, so doctors have always told us to be confident because the situation was under control.
They have always told us that was not the case for surgery, because of the risk factors and the limited benefit that we would have obtained. They said it was better to wait and follow him up until the age of development.
We had confidence in them... (!)

Suddenly, during the summer, the situation has worsened. So, doctors said that surgery is now required, also with some urgency!
Anyway we didn’t like the surgical method they proposed.

So my husband and I, decided to have further medical consultations: we went France and Germany. In France we asked to Prof. Pierre Roussouly (at the Centre Médico-Chirurgical des Massues, in Lyon), then to Prof. Gerard Bollini (at Hôpital de la Timone, in Marseille). In Germany we asked to Prof. Michael Ruf (at SRH Klinikum Karlsbad, in Karlsbad).
The common advice that was given to us, is to perform surgery… even if with different approach from each other.

Only Prof. Bollini suggested us to use VEPTR, he said, in order to allow growth.
The other two doctors said that the expected growth is very few, so it is not advisable to use VEPTR, they would prefer to make only one stabilization surgery.

Now our doubt is: VEPTR yes or no?
At this point we need the opinion of a true expert of VEPTR. Anybody knows who can we ask for?

Regardless of which will be the decision (VEPTR yes/no) we were also suggested to ask for counseling to Dr. Oheneba Boachie-Adjei at the Hospital for Special Surgery in New York (www.hss.edu).
What do you think about this possibility?

I posted some X-rays of my son. Please, feel you free to share them with anybody could help.

Thank you very much in advance for your time and help.


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Posted 2013-10-14 12:54 PM (#42193 - in reply to #42192)
Subject: Re: VEPTR: Yes or No ?

New User

Posts: 2

I couldn't post the X-rays because the attachment is bigger than the size limit.
Anyway, I hope you can download it from the following link:


The file name is X-RAYS.ZIP, is a compressed ZIP file (if you prefer you can also download the single images).

Please, let me know if it doesn't work.

Thank you,
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Nicki, Alex's Mom
Posted 2013-10-15 10:45 PM (#42204 - in reply to #42192)
Subject: RE: VEPTR: Yes or No ?

Elite Veteran

Posts: 853
Location: Fort Wayne, IN
I understand how difficult this decision can be! At the age of 12, he may or may not have a lot of growing yet to do. I know of at least one boy who had his VEPTR placed at age 18, and he still grew! Others, not so much. I believe that there is a bone x-ray that can be done to help determine how much growth is left to go before maturity. I don't know if it would be worth it or not to look into that test for your son.

It really sounds like you are doing your best, getting many different options before making a decision. Whatever you decide, we will be here to help. Please feel free to ask any other questions you can think of.

Best of luck!
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Andrew's Mom
Posted 2013-10-16 7:20 AM (#42208 - in reply to #42192)
Subject: Re: VEPTR: Yes or No ?

Location: NC
If the doctors perform the VEPTR surgery, you can always do the fusion if it turns out it isn't working very well...but not the other way around. Although the VEPTR sounds scary, it's nothing compared to a full fusion. Good luck with your decision.

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