10 year old and growing rod surgery

[Pooka1]

So growth rods apparently are:

"almost guaranteed to cause spontaneous fusion"

and

"It (spontaneous fusion) almost always occurs with traditional growing rods."

It sounds like they may even have a lower rate of pseudoarthrosis that typical posterior fusion. If so, and if the area to be fused can be targeted, I wonder why growth rods aren't used to fuse spines instead of posterior (and anterior for that matter) fusion?

I realize they would have to go back to the old protocol of attaching them to the top and bottom of the spine to accomplish the fusion. It seems like it might be an easier operation to tolerate but I'm guessing on that.

[Carmell]

Hi again,

Braydon's tethered cord was a fatty filum (the simplest form of tethered cord, neurosurgically speaking). We knew he had a retether because of outward symptoms - chronic low back pain, numbness and tingling and weakness in his legs and feet, worse constipation, etc. Some days he couldn't tolerate standing at all. The thing about yearly MRIs is that the image will show a retether automatically. This is because scar tissue that builds up from the first release surgery will show as tethering. MOST neurosurgeons do not do annual MRIs. They will only do an MRI if there are outward symptoms and cause to worry. MOST neurosurgeons would never do a re-release without life-changing symptoms. There are risks to re-release surgeries - about 10% of kids (like Braydon) who have a re-release surgery and DID NOT have bladder involvement BEFORE the re-release, will have permanent bladder damage AFTER the surgery. This is a risk parents much consider when deciding on a re-release procedure. Thankfully Braydon was in the 90% who did not have bladder damage. I know, this is a lot to consider, but try not to worry. I honestly think annual MRIs are overkill for this. There is nothing to gain by having them because they are going to show skewed results. Most parents are just on alert for any potential symptoms of a re-tether. Not fun, but do-able, I promise.

There aren't many people on this list with tethered cords and scoliosis because MOST families hang out on the tethered cord lists. They already have their scoliosis support, so this is not necessary. I guarantee you are NOT alone in this journey. Many families are in similar shoes.

Try not to get hung up on technicalities - neurologic -vs- idiopathic scoliosis. You will likely find that the medical community is not in agreement on this, so don't get too set in your ways about it. Flexibility is the name of the game - LOL - ugh.

Pooka - patients who have growing rods are children with lots of vertical growth remaining. If spontaneous fusion happens, it happens over years, typically. Growing rods would not create a spontaneous fusion in an already grown person because there is no vertical growth happening - the growth is complete. That means the growing rods do not "move" and cause friction along the spine, which is what promotes fusion. I'm sure someone in the medical world would have already considered this if it were a viable option.

[smileyskl]

Thanks Carmell,

I can tell by your response that you have been through all of these things already. The neurosurgeon we used said that if the tethered cord is not found prior to symptoms, then usually the symptoms are irreversible and the only way to monitor it was through MRI's. Does that sound completely different than what you have been told? I certaintly wouldn't want my child to have any more x-rays, MRI's than necessary. I had never even heard of tethered cord before they found hers and I was completely shocked by it. Like I said, she had NO symptoms at all. He said that she could end up paralyzed not having it fixed so we did what we thought we HAD to do for her safety. Did Braydon also have a syrinx due to the tethered cord? Katelyn did it went away on its on after the surgery. The surgeon said thats common. Did you say there is a forum related specifically to tehered cord? Just curious. Thanks again.

[Carmell]

Hi again,

Braydon did not have a syrinx. I know many children who have syrinx and never have surgery to reduce them or make them go away. They just watch the child and if there is a problem, they fix it. Was her syrinx the cause of the tethered cord? If her syrinx was the only cause of the tethered cord, then yes, an MRI will be able to monitor the fluid level to see if the syrinx returns. If there was another cause of the tethering (fatty filum, lipoma, etc.) then the scar tissue build up from the original release surgery will interfere with the images meaning you won't know if a re-release is in order unless there are other symptoms. This is not a clear cut solution, in any way.

Most kids who have tethered cords that are found after scoliosis is detected have a release surgery to see if the scoliosis improves. About 25% of the cases will improve and the patient's spine remains stable and they never need surgical intervention for the scoliosis. That means in 75% of the cases, the patient needs some kind of treatment for scoliosis because the release surgery did not solve the scoliosis problem.

There is an email list with a few adult TC patients, but mostly parents of children who have some kind of tethered cord. Most of the kids have lipomas or some fatty mass that caused the TC. Some, like Braydon, have just fatty filum. Most all of the kids have multiple birth defects, so you would see extreme cases. Most are not "just" TC and scoliosis. This does not mean you are not welcome to join! It just means it may be overwhelming to hear the other medical issues the families deal with. The link to the yahoo group/email list is: http://health.groups.yahoo.com/group/LMC-TCS/ If that doesn't work, do a yahoo search in the groups for "LMC-TCS". You have to subscribe but that's not hard at all. You can read the back messages to see what people talk about. Actually the families who are dealing with LMC (lipomyelomeningocele) often don't see scoliosis in their kids until they are older, some never. Scoliosis is a rare discussion on the list. However, just recently there was a thread about scoliosis.

Not to downplay the seriousness of the tethered cord, but, it sounds like your neurosurgeon is being over protective and overly cautious. I do not know your daughter's full medical history so I can't say if his follow up plan is right for her. Only you and the docs can know that. If you question his recommendations the least tiny bit, please get another opinion from a different PEDIATRIC neurosurgeon. You want to make sure she stays as healthy as possible, but does not have unnecessary, expensive, and potentially invasive testing done. Because Braydon has multiple issues (ie, congenital scoliosis, GI issues, renal/kidney/bladder issues, etc.) he sees the docs in a clinic setting once a year. He would only have an MRI if there were other symptoms that we questioned or worried about. The few kids I know of who have annual MRIs are extreme cases. Kids who are not healthy and you would have a hard time telling if there were outside symptoms.

I hope I haven't caused more grief for you than you already had. No one needs that. I just hope you find the answers you are looking for. Let me know how things are going. Good luck.

[smileyskl]

No, if anything you have given me a different perspective. I think this is a great forum for that. However, I always keep an open mind and just use advice as a starting point for doctor discussion. I have so many questions to ask the doctor than before. He is probably going to hate I have ever been on here but as you know you do what you have to for your kids. I just want to be informed. Thanks so much. I do however, think I will avoid the other site for now. I don't want too much information or I may get a little freaked out and overwhelmed. You have been a great help and Good Luck to you to.

Sharon

[Carmell]

Hi Sharon,

That is exactly what every parent should do - keep an open mind, research, talk with others who have been in similar shoes, question the docs, etc. But only the doctor and you can decide what is best for your child. If your doc recommends something that you don't understand, don't agree to it until you do understand - fully. Asking questions is the best way to make things make sense in your head. Very important.

You are doing great. Keep up the good work, and thanks for the well wishes. I need them this week - Braydon has a strep infection and a UTI. Not a good combo.

[smileyskl]

I will put you on my prayers list. Hope he is feeling better soon. Take care

Sharon

[laurieg6]

Carmell,
I really hope that Braydon feels better soon.

Sharon,
Good luck with finding the best treatments for your daughter.

[smileyskl]

Thanks Laurie, I am sorry to hear about your son having more problems after surgery. I hope you can find a solution not requiring more surgery. Sometimes, when it rains, it pours. I will keep ya'll in my prayers as well. Best of luck