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What occurs if Harrington rods aren’t extended?
Spine Health | Last Active: Aug 12, 2021 | Replies (9)Comment receiving replies
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 🇦🇺❤️ 🙂
Replies to "Jennifer thank you so much for those links I will have a look now. I wish..."
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@lhoward Thank you. I appreciate your comments. As Connect is a patient forum, I wanted to be clear that it is not staffed by physicians which can be a common misconception when patients ask questions looking for a diagnosis because of the link to the Mayo Clinic website. Most everyone here is a volunteer or a patient. I have been volunteering on Connect for 3 years. That is why I am careful in my language when I respond to posts. I do my best to help patients with understanding spine issues and sharing what I have learned in my own experience as a spine patient. Thank you for being clear in that you were asking for links to medical literature, and I wanted to be clear that I am not a medical professional for anyone else who may read this thread.
I wish there was more I could do. Are there options for further treatment in Australia? What have her doctors said about future treatments? I am a spine surgery patient and had surgery at Mayo for spinal cord compression. I am trying to understand what it must be like to be a child with a serious disability from scoliosis. Honestly, my heart breaks for this child, and I wish there was an easy answer. I understand your concern about her lung function and not being able to clear her lungs because of the physical disability, and the risk of Covid on top of it. Does she have access to a vaccination for Covid because of her high risk status?
I know it is important to find an answer to define the problem. With my spine surgery, I spent 2 years and saw 5 different non-Mayo surgeons in my area, and none would help me. I had unusual symptoms where I had pain all over my body from spinal cord compression in my neck and had just been dismissed by a surgeon. They expected I would only have arm pain and wouldn't take a chance on me. I searched and found medical literature with cases like mine, and I contacted Mayo and sent that literature in with my imaging and a request for an appointment. I had also tried to get other doctors at the local non-Mayo facility to help contact the surgeon who dismissed me with this new information, and none would help me contact him even though I had been a patient with these doctors for several years before I became a spine patient. That is when I contacted Mayo and I started over.
I think one of the problems is that medical literature is usually written about problems that have been solved by medicine and I wouldn't expect to see literature about an implanted device that causes a problem. One place you could search is clinical trials. That is where devices are tested and outcomes are measured before a device is cleared for use by surgeons in normal practice. I learned a lot about about spine implants before I had surgery by reading the clinical trials, and what the exclusion criteria are that would make me a poor candidate. Often having already had a prior spine surgery excludes someone from participating in a clinical trial. This trial talks about growing rods for scoliosis that need to be adjusted every 6 months.
https://clinicaltrials.gov/ct2/show/NCT01362881?cond=%22Scoliosis%22&age=0&draw=3&rank=19
The main website is https://clinicaltrials.gov/
On completed studies, there is a study reference number that you could use to ask for further information from the National Library of Medicine.
This may be a difficult question to answer. What would be the best scenario that you could imagine for her future care and treatment? That question would need to be asked of her parents, but is there a goal that in some way could lead to treatment?