RE: Re: Phenix Growing Rods Article

[Guest guest]

I met the engineer of the Phenix rod a couple years ago when looking for an alternative to reg. growing rods or Veptr for my Livi. Both French engineer and doc familiar with the Phenix confirmed she would be a good candidate…ISOP actually held a mini conf. in Miami regarding this new technology to see if it would benefit some of our severe kiddos who’d missed the ET/Mehta casting window. I provided all info to Livs long standing doc and we decided not to pursue it as Liv had such rigid, relentless curves….We felt that a single rod construct Phenix would not hold her spine and the potential for breakage and complications was huge. We decided not to go that route and Im so glad we didn’t. I found out months later that the single construct rod had broken multiple times in another kiddo that I knew personally (that also had rigid & relentless curves). I think the Phenix magnetic rod and (its U.S. version) is a great idea for kiddos who miss their ET window. I only tell this story as an FYI…If your darling has severe, rigid, relentless curves make sure you discuss a dual rod construct of any type rod to avoid breakage and the ever present complications.Thanks for sharing that article, Katrina.HRH From: infantile scoliosis treatment [mailto:infantile scoliosis treatment ] On Behalf Of kat140472Sent: Sunday, October 23, 2011 4:04 PMinfantile scoliosis treatment Subject: Re: introducing myself and need more information + Phenix Growing Rods Article Hi Rinita, my daughter has been treated with EDF casts in Sydney and has recently transferred to Melbourne Royal Children's Hospital for treatment for infantile scoliosis (transfer to reduce financial costs as we are based in Melbourne). Both hospitals and surgeons are supportive of EDF treatment and avoiding surgery as long as possible. I have found the costs different in both states and whether treated in public vs a private hospital. I see louise is helping you out with Sydney based costs. Let me know off line if you'd like me to contact the Royal Children's Hospital in Melbourne to see if they could assist and costs or find out the right contacts for you. Interesting article in the leading Melbourne newspaper today regarding the trialling of Phenix Growing Rods. http://www.theage.com.au/victoria/magnetic-attraction-gives-matthew-chance-to-stand-tall-20111023-1memn.htmlKind regardsKatrina> > Well...we kind of got some rough news on Monday with Cast #8. Jonas was around 25 degrees in cast #7 but once they applied cast #8 his xray showed around 40 degrees!! Not being completely satisfied w/ the results Dr. D'A made some adjustments which included some padding on one side and cutting off a peice under the under of the other side. They did not do another xray after the adjustments were made so we have no clue where is curve is now. My husband and I left there feeling very confused on what to do next. And b/c the docs were so busy we didn't even get to hear how they felt about the possible regression. I am going to call today. My heart can't stand to watch and wait...if the cast isn't holding him anymore. :-(> > Hollie> Mama of Jonas 3 yo in cast #8. Between 30*-40* down from 73*> and a baby of the way.> > > > > ------------------------------------> >