…… I do need professional expert advice - but no Doctors in Australia will help us,
Given we have such a small population, the number of paediatric orthopaedic specialist in this area is very small and they all know each other, they will not call out each other’s work so accessing and alternate medical opinion that isn’t exposed to a conflict of interest is simply impossible.
With Covid, no one is able to leave Australia little loan a sick child, so the option to travel overseas to seek this second opinion is also not an option (A one-way ticket from Sydney to United States is currently selling for $60,000, to give you an indication of how few
Flights are leaving Australia and the demand for those seats …… crazy)
In Australia my friends daughter has all of her medical care paid for under Medicare which is a universal healthcare system - so be under 18 she doesn’t have private health insurance, and to book a virtual appointment with an orthopaedic doctor in the United States I have been quoted AU$2000 for 15 minutes without insurance….. and she simply can’t afford that…..
I totally agree expert paediatric orthopaedic assistance and advice is what is needed, but I can’t find a way to access that for her - and given the significant impact scoliosis can have on respiratory functioning, which she is already deteriorating in, I’m scared that something is going to happen before I’m able to find just one doctor to help ….. hence why I’m on this forum - I’m hoping maybe I’ve overlooked something or there could be a solution that I haven’t thought of that someone in a similar position may of ….. as I genuinely don’t know what else to do.
I cannot find anywhere any papers or studies or any literature whatsoever on these rods being installed and not being extended and the impact it would potentially have and associated risks ……
I have found thousands on the rods in general and everything else associated with them but I cannot find anything on them not being extended - it’s like the information simply doesn’t exist ……..
The specifics I detailed above were not provided with the anticipation that somebody would awkward specifically answer the questions - but to give an example of what kind of information I am looking for in these journals or research papers, in case someone could kindly suggest some to look at -I also thought maybe the situation might cross over into a different condition that I haven’t thought of so that was another reason to provide more specific details.
I totally understand there are not doctors sitting on here ready to answer questions nor do I expect anyone else to pretend that they are able to - i’m just hoping somebody might be able to point me in the right direction of where I can find this information so we can educate ourselves the best we can.
Hi Lhoward, I'd like to add my welcome. I see @jenniferhunter has offered many resources, information, her experiences and support.
I see from your post that your friend's daughter is in need of unique and highly specialized care and that access to care has been complicated by COVID. I wonder if you have pursued collaborative international care with experts outside of Australia, but that wouldn't oblige her to leave the country. This may be something to explore.
Is she being seen at Australia's best pediatric hospital The Royal Children's Hospital in Melbourne? Might it be possible for her orthopedic specialist to request assistance from experts from another facility like SickKids in Toronto, Canada (https://www.sickkids.ca/en/care-services/international-patients/) or Mayo Clinic's Children's Center https://www.mayoclinic.org/departments-centers/childrens-center?
Mayo Clinic experts collaborate and cooperate with colleagues worldwide. It may be something to inquire about. I encourage you to call Mayo Clinic or have her doctor contact Mayo Clinic. Here are numbers to call:
http://mayocl.in/1mtmR63
Referring doctor: mayoclinic.org/departments-centers/childrens-center/resources-for-physicians