What occurs if Harrington rods aren’t extended?

@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.

Is your friend seeking further medical opinions about treatment for her daughter?

…… 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.

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 🇦🇺❤️ 🙂

@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?

@lhoward I was thinking about the issues of retaining phlegm and I thought you may be interested in this discussion where members with persistent issues are taking about how they clear their lungs.
https://connect.mayoclinic.org/discussion/clearing-lung-technique-i-found-by-accident/

I have had issues retaining phlegm on my left side which easily progresses into a lung infection. My left side of my ribs doesn't move as much because of tight chest muscles from thoracic outlet syndrome. I go to physical therapy for that. I have had a problem with repeated chest infections and I have allergic asthma. Some of the things my therapists have done to help clear my chest are to use gravity by having me lay on a pillow under my hips on my side and they would be squeezing my rib cage to clear the lung on top. They I would flip over for the other side. Also doctors treating Covid patients have learned to put patients face down to help clear the phlegm and if you can do that with your chest lower than your hips, it will let gravity help.

Has physical therapy for lung function been considered?

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

@lhoward Hi and Welcome to connect. I learned of your delima thru @colleenyoung and @jenniferhunter So I hope this may help.

My sister was diagnosed with scoliosis when in my teens and my parents were able to get the brace needed very expensive at the time and follow up appointments thru Shriner's so they may be an avenue to explore. Now I'm talking the 1970s so things may have changed but it was definitely Shriner's that helped then. It was a Blessing when it happen since my Father similar to your situation felt so blessed for the service they provided and at no or reduced cost. I found this web site and it seems they still work with children with this condition.

I prey this helps and you can somehow get the help you need
Blessings

…….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

LHoward, I can see the difference in the curvature of the spine between the 2 x-rays. I also noticed the numbers on them. Are those measurements made by the doctor? I wasn't sure if those were representing the range of lung volume, and if so, those number ranges are different.

I'm sure these are tough decisions as to what to do next. Do you think if there was a corrective surgery done now, that it might prevent further curving of the spine and possibly restore some lung function? I presume she is still growing at this time.

I hope you will find a doctor who can help make this a bit better. A spine deformity expert would have some answers as to what is possible. I am glad I could help you find some answers to your question, and with that knowledge you can make an informed choice. What I wonder about is how will this change as she continues to grow? That is what you need to know. I wonder if the top portion of the spine was able to expand more as she keeps growing if that can help the situation. I also wonder if a respiratory physical therapist can help.

I thought this link might help. It helped me formulate questions when I was facing spine surgery.
https://www.spine-health.com/blog/40-questions-ask-your-surgeon-back-surgery

The questions that I would add would be about lung function and what does the surgeon hope to achieve to improve lung capacity and how will he do that?

What makes her a good candidate or a poor candidate for the procedure?

Are there corrective surgeries that can be done after maximum growth that can improve the spine and function of the chest cavity and lungs?

Will it take a series of smaller procedures over time or one procedure to address everything?

What would happen if the Harrington rods were removed completely? Would the spine be able to support itself or would it collapse further?

Are there automatic growing rods that can be adjusted from outside the body?

What are the benefits and risks of the procedure?

Does the diaphragm work? If not, can it's function be restored?

Can a procedure on the lower end of the thoracic spine/lumbar area make room for the diaphragm to move?

Because she is still growing, time is of essence in getting a goal and plan in place. Colleen gave you some suggestions, and possibly you could have a video consult between a surgeon in Australia and a surgeon at Mayo. She needs your positive energy.

Sometimes patients face some very difficult circumstances, but miracles do happen and a miracle even happened to someone I know personally, my friend Wayne. He is a local celebrity in Chicago who sings the national anthem at the baseball games, and after a game he was shot through the throat in a robbery attempt. It nearly took his life, and he was told he may never be able to speak again. Imagine being told that when you make your living as a singer. His necktie saved his life that night by plugging the wound to slow the bleeding. He did recover and he worked hard in therapy to get his voice back, and it was just as magnificent as ever. I was playing in a concert band, and our director invited him to sing with us which was the first guest invitation he received post op. That is how I met him, and his guest appearances with his wife singing show tunes became an annual event. He amazed me when he went to the prison and visited one of the juveniles who committed the crime against him, and then he forgave him and told him to make something good out of his life. The boy never expected this. He had expected anger, but instead he received kindness. I told my friend that I didn't know if I could have done that, and he told me that you never know what you are capable of until you are tested.

When I was scared and in need of spine surgery because of spinal cord compression, I reached out to my friend, Wayne, a professional singer because I knew he knew something about courage and facing fear, and I was trying to find that in myself. His advice to me was that I was too talented to let a spine problem take away my artistic talent, so if surgery could preserve my talent, then that was what I needed to do. It really did come down to that. I decided doing what I love the most was worth saving even if I was afraid. I could not let fear decide my future. It was a traffic accident caused by another driver twenty years earlier that set in motion the events that led me to this day, and I had long ago forgotten the name of the driver and forgiven him. I believe in looking for positive outcomes and doing everything I can to add to that success. This situation also forced me to examine exactly why I had so much fear over surgery, and I got past it and deprogrammed it, so fear does not hold power over me anymore. That was so empowering and it was something I didn't know I had the ability to defeat. It changed my life completely and lifted a heavy burden off my shoulders. It really is why I am here on Connect helping others overcome their hurdles. Here is my story. https://sharing.mayoclinic.org/2019/01/09/using-the-art-of-medicine-to-overcome-fear-of-surgery/