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What occurs if Harrington rods aren’t extended?
Spine Health | Last Active: Oct 11 8:44pm | Replies (11)Comment receiving replies
@lhoward Hello and welcome to Connect as I see you are a new member. The community here is comprised of members who are patients, and not medical professionals, and members share their personal experiences about health topics. You are asking great questions, but need the expert advice of specialty surgeon to answer them. Asking questions like this is how you advocate for proper medical attention for a patient. In your profile, you mentioned you were advocating for the daughter of a friend. I don't know what access to medical care is like in Australia, but if possible, getting other medical opinions can help. Sometimes you hit a brick wall with a doctor who has missed something or who made some sort of a mistake, so you need an unbiased opinion from someone else at a different medical facility.
I did some digging and found several papers that mention the "Crankshaft phenomenon" happening after surgery for juvenile scoliosis correction in which the spine is fused on the posterior side with fixation, but continues to grow on the anterior side causing it to twist as it grows. The papers do mention alteration of the chest cavity and lung function, but they also state that scoliosis (without surgical correction) also alters the chest cavity. A source of a potential lead to more literature is to look at the footnotes and other literature that was cited at the end of the article which is where I found out about the "Crankshaft phenomenon" and when you know what term to search for, you can find more literature. I learn a lot from searching medical literature, and I was able to advocate for myself with spine surgery after finding literature with cases similar to mine, so I knew what the previous surgeons missed in my case; 5 of them to be exact. That was before I came to Mayo and it was because I looked up a term in a Mayo surgeon's paper that I found the other literature with the answers. I had a great outcome with my cervical fusion that was done at Mayo.
Here are the links I thought might be of interest.
https://journals.lww.com/jbjsjournal/Abstract/2003/03000/The_Characteristics_of_Thoracic_Insufficiency.1.aspx
https://link.springer.com/article/10.1007/s12178-012-9116-0
https://www.sciencedirect.com/science/article/abs/pii/S0949265815339774
https://online.boneandjoint.org.uk/doi/full/10.1007/s11832-012-0456-5
https://www.orthobullets.com/spine/2053/adolescent-idiopathic-scoliosis
https://online.boneandjoint.org.uk/doi/full/10.1007/s11832-012-0456-5
Is your friend seeking further medical opinions about treatment for her daughter?
Replies to "@lhoward Hello and welcome to Connect as I see you are a new member. The community..."
Jennifer thank you so much for those links I will have a look now.
I wish we had something like the Mayo Clinic in Australia….. it’s an institution I have heard of many times, a centre for excellence in medicine….. we have some excellent hospitals here in Australia, but with only 25 million people, if something goes wrong, finding an unbiased second opinion is almost impossible. The medical fraternity is very small and very much dominated by hierarchy - we put in a formal complaint with a statutory body that overseas medical care in the state she is in and even they said they could not find a doctor in Australia that did not have a conflict of interest to provide them independent medical advice on the complaint…..
Her roads were inserted when she was about 8 years old, they were extended four times at six month intervals for two years until she was10, but from then until now, with her about to turn 13 - they have not been extended and you don’t need to be a doctor to know that during that period of time kids grow significantly ….. And with metal rods holding a spine in place if it can’t grow up or down, The only place it has to go is to the side…… And this movement and restriction in the position of the curve is it in the thoracic region, any movement to the side means moving into her chest cavity….
She has been admitted to hospital several times in the past few months with pneumonia, because when she gets a chest infection she can’t cough to move it, which to me would indicate reduced lung capacity, as in the past she did not have these issues……
…..One would think that like any piece of equipment that you buy, that these rods would come with some type of instructions showing what the risks could be and how to use them correctly…….. There must be something that says “do not install them and not extend them as X, Y or Z could occur …”
…….. it is so very kind of you to find those links. I’ve copied and sent them to my friend and we going to have a look now - thank you 🇦🇺❤️ 🙂
…….Jennifer - this is from one of the links you suggested ….. and the loss of lung height over 4 yr period ……it’s exactly like the research paper describes …. Speechless
The date on your comment is 2021. Are you commenting in real time?
The patient is my granddaughter. We live in Tennessee, USA.
What was the location of the Mayo Clinic where you were you evaluated? We are closest to the one in Jacksonville.
How old were you when you were diagnosed?
Thanks so much for the links. Which site did you use--Medline?
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…… 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.