10 year old and growing rod surgery

[smileyskl]

I am just wondering if anyone can give me insight into the growing rod surgery. This is being discussed for my daughter and I haven't seen alot of discussion on here about that particular surgery - mostly just fusions. I am just wondering about your experiences with the surgery, the outcome, the periodic extensions, etc. just anything. I just want to hear from another person whos been there and not just read textbook cases. I would also be interested in the approximate cost. I have pretty good insurance but have been thinking about possibly contacting Shriners in Louisana. I would like to estimate out of pocket expense. Thanks for any info you can provide.

Smkleyskl

[txmarinemom]

Smkleyskl,

Is there some reason they're suggesting growth rods (almost guaranteed to cause spontaneous fusion) vs. VEPTR (attached to singular vertebral bodies - and does NOT cause intervertebral fusion)?

Regards,
Pam

[smileyskl]

All I knew about scoliosis before September of 2007 is that it caused your spine to curve. I never imagined that I would have personal experience with it. This with my daughter has happened so fast that I haven't learned about all the options yet. There seems to be so many different opinions about treatments and its very confusing. I just want to do the best thing possible for my daughter. She is 10 and a 0 on the risser scale so I guess its because she still has a lot of growing to do. Her curves are 46, 46, and 39. They have progressed rapidly in a year from 23, 23, and 19. She has also had tethered cord release surgery in December of 2007, and now wears a boston brace 23 hours a day but not helping. Perfectly healthy active child before all of this occured. I think she has to much of a curve for the stapling and I don't know the difference between the veptr and growth rod. We go back for the official "surgery talk" in 3 weeks. I am learning so many new things about all of this but still know so little.:confused: Any advice or suggestions is helpful to my research. Thanks.:):) I am going to research veptr now.

smileyskl

Also, any questions I could ask the doctor from anyones experience with this that I may not think of.

[mariaf]

Smileyskl,

Pam made a good point about spontaneous fusion - that would be my main concern with a growing rod as well.

Dr. Betz, for example, uses a hybrid growth rod which is similar to VEPTR in how and where it is attached to the spine. The hybrid rod was specifically designed, from what I understand, to lessen the chance of spontaneous fusion occurring. It almost always occurs with traditional growing rods.

If it were my child, I would get several opinions. I have no personal experience with the Shriners in Shreveport except that, for example, I know one patient who was referred from there to the Shriners in Philly because the one in Louisiana didn't perform VBS (that's not to say they aren't good).

If you can make the trip, though, I can vouch for the staff in Philly - they're great. Otherwise, I'm sure you can get some other recommendations here that are closer to home for you.

In any event, I would explore all my options (VEPTR, etc.) and then make a decision to go with whichever surgery and whichever surgeon I felt most comfortable with.

Good luck!

[smileyskl]

Thanks. I had not thought about spontaneous fusion. What is done if that occurs. I am definately bringing all of this up at our appointment.

[mariaf]

I'm not sure there is much they CAN do once spontaneous fusion occurs - the goal should be to prevent it from happening in the first place.

Please keep us posted and feel free to ask any other questions you may think of - again, best of luck!

[ecnw]

My daughter has the growth rods and everything has gone fine. I think the reason some are discussing spontaneous fusion is because originally the rods were attached to the top and base of the spine. Now doctors are attaching the top rods to the rib cage, this allows for more growth and I assume not the spontaneous fusion (although my doctor never mentioned that as an issue when we started). I would ask the doctor how he intends to attach them.

Normally a fusion is the end result, but for some they are stapling towards the end of growth, then taking out the rods after six months. Of course if for any reason the staples don't hold, then a fusion is preformed.
I know a lot of people here support stapling, as they tend to all go to Philly Shriners. There are pros and cons to both.

The reason I like the rods is that the spine is allowed to mature before anything is permently attached to it. At the time my daughter was 9 when we actually started with the rods, and to me that seemed like the right step for us. I wanted the spine to grow as much as possible with the least hardware attached.

Yes, there are more surgeries with the rods, but it's normally an in and out proceedure, and they're back to school within two weeks. The major concern we were told about was infection, knock on wood, we've never had that issue.

If you have anymore questions on rods feel free to ask. Emily

[smileyskl]

Yes, there seems to be many, many opinions and different experiences. I am taking notes for the doctor so THANKS ALL OF YOU FOR YOUR HELP. :):) I am also glad to hear from someone who is dealing with the growing rod thing now. I am wondering how the extension visits go?? Is this a major ordeal and how often has your daughter had to go for them. Thanks for the replies.

Smileyskl:D

[mariaf]

Normally a fusion is the end result, but for some they are stapling towards the end of growth, then taking out the rods after six months. Of course if for any reason the staples don't hold, then a fusion is preformed. I know a lot of people here support stapling, as they tend to all go to Philly Shriners. There are pros and cons to both.

Hi Emily,

I just wanted to clarify a few things about the growth rod/staple combination they are using in Philly. From what I was told, the rod and the staples are normally inserted simultaneously. Then, at the end of growth, the staples will remain in place and the rod will be removed. (By the way, I had also been told that the hybrid rod being used by Dr. Betz is similar to the VEPTR in how and where it is attached so there is less chance of spontaneous fusion). I'm happy to see you mention that more doctors are now attaching the rod to the ribcage rather than the spine - hopefully spontaneous fusion will soon be a thing of the past :)

The reason they use the hybrid rod AND the staples in some children (usually those whose curves are too large for stapling alone) is twofold: to achieve more correction initially AND to have something in place (the staples) once the rod is removed in order to maintain that correction and hopefully avoid fusion which would usually be done at the end of treatment with growth rods alone. Of course, as with all things related to scoliosis there are no ironclad guarantees. But the parents I have spoken to who chose this option, did so not necessarily because their children were being treated in Philly (although of course that's how they learned of it) but rather because they felt it was their child's best chance to avoid fusion later on - and they also felt that the surgery (staples and growth rod) was not much different, in terms of recovery time, etc. than the growth rod surgery alone - in fact they are pretty similar.

I hope this information is helpful.

All that being said, I am THRILLED to hear that your daughter has done so well with the growing rod (no infections - YAY!!). It's great to hear success stories related to ANY treatment method - it gives hope to so many and I thank you for sharing some of your daughter's story with us!

My wishes for her continued success!

[leahdragonfly]

Hi,

I'm just curious, at what point are growing rods usually recommended?

[sparklegirl59]

I am just wondering if anyone can give me insight into the growing rod surgery. This is being discussed for my daughter and I haven't seen alot of discussion on here about that particular surgery - mostly just fusions. I am just wondering about your experiences with the surgery, the outcome, the periodic extensions, etc. just anything. I just want to hear from another person whos been there and not just read textbook cases. I would also be interested in the approximate cost. I have pretty good insurance but have been thinking about possibly contacting Shriners in Louisana. I would like to estimate out of pocket expense. Thanks for any info you can provide.

Smkleyskl


why are they considering that for??? her curves aren't that bad, are they???

[mariaf]

Hi,

I'm just curious, at what point are growing rods usually recommended?

Hi Gayle,

That's a good question. I don't think there is a clear-cut answer as to exactly when is the best time to add a growth rod. It depends on many things - but I've been told by a few orthos that they recommend growing rods when nothing else (bracing, etc.) seems to be able to control the curve and it has begun to go "out of control" (45, 50+ degrees, etc.).

Some say they prefer to wait until the child is 9, 10, 11 years of age, if possible, before adding a growing rod. This is so that there will not have to be so many expansion surgeries which, while relatively minor, carry risks as all surgeries do.

Of course, sometimes it is not possible to wait until a child reaches a certain age to add a growing rod. If the curve is getting too large, then the benefits of adding the rod sooner may outweigh the advantages of waiting a few years.

Hope this helps.

[smileyskl]

Gayle and Val,

I believe the reason that they are suggesting the rods for my daughter is because of her age and the fact that as Maria said, nothing is helping the progression. She has worn her brace faithfully exactly the way she should and her curves just continue to get worse (about 1 - 2 degrees per month) and she developed another curve at the bottom. She also has had a tethered cord release surgery and I don't know if this helped, hurt, or did nothing to affect that. I do know that the cord could retether and that would complicate things as well. I am just as confused about this as anyone. I wish that I could understand but I just have to trust God that this is all going to work out. :confused::)

[Carmell]

Hi smileyskl,

You've already gotten very good comments from others. I'd be happy to share my son's experience with adjustable rods. He has had VEPTR rods (two) since Aug. 2001. He was 6yrs old when he had his VEPTR surgery.

I think the best thing for you to do is to write down your questions, in priority order. Ask questions that are specific to your daughter. If they are recommending a procedure (ie, growing rods) ask why, and how will it benefit her, and what other options are there, and what the predicted outcome should be. Maybe one of the more important questions to ask is "if this were your child, what would you recommend?".

Braydon has had two tethered cord release surgeries. His neurosurgeon strongly believes there is a direct connection between tethered cords and curves in the spine. If the tethered cord is corrected before permanent damage to the nerves/tissues is done, most curves will stop progressing or even improve. In other cases, nothing can stop the progression of a curve, except surgical intervention (this was the case with Braydon). I hope she has seen good benefits from the tethered cord release surgery.

Braydon has had 13 VEPTR expansion surgeries. The surgeon re-opens the same incision every time. His incisions look very good considering the multiple surgeries. He's a good healer. Braydon has never had any major complications with his VEPTR devices. The expansion surgeries are often done as outpatient procedures, but Braydon chooses to stay overnight to make sure there isn't a problem, and to make sure his pain is well managed. The most discomfort comes from the incisions.

If I were in your shoes, I would get at least one other opinion, preferably from a pediatric orthopedic surgeon who has had many patients similar to your daughter. We had to travel out of state in the beginning of Braydon's VEPTR journey. Now, his local ped. ortho. is a VEPTR training surgeon. It may be difficult, but it is do-able. You MUST get the best care possible for her. Whatever that may be.

Before anyone does surgery on her, I would make sure they did a baseline pulmonary function test. Does she seem to have shortness of breath at all? One thing that VEPTR provides (where traditional growing rods do not) is improved lung space/capacity/function. If there is a question that her lungs are being impacted by the curves, please consider finding a VEPTR surgeon for an evaluation. Not all children qualify for VEPTR surgery, but you will get more answers than you have now.

I'd be happy to share more about our experiences, if you'd like. Feel free to email me at boulderfam@hotmail.com

[smileyskl]

Thank you Carmell for your reply. I checked out your webpage and you have a beautiful family. It looks like Braydon has always been a trooper. How did you know that Braydens cord had retethered? We found Katelyns by an routine MRI when her scoliosis was discovered. She had none of the symptoms that go along with tethered cord. I guess thats why they want her to have a MRI at least once a year (to check for that). The neurosurgeon who did her tether release surgery did say it may stop the progression but when we had it checked four months later her curve had almost doubled and she developed a third curve. I know we have a long road ahead and I wil definately be asking the doctors alot of questions. I have noticed that no one else on this forum seems to have the tethered cord/scoliosis relation. There is no scoliosis in our family that we know of except Katelyn. I wonder, does the tethered cord make her's neurological or is it idiopathic like the doctor said?:confused: This stuff is very confusing. Sometimes it feels like we are experiments. Anyway, thanks for your help.:D I really appreciate your taking the time to respond. Thanks!

[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:D 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:)