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Thread: New here. 7 yr old daughter to have Ext. Rod Surgery

  1. #1
    Join Date
    Apr 2007
    Posts
    7

    New here. 7 yr old daughter to have Ext. Rod Surgery

    Hi-
    I just discovered this forum recently and wish I had known about you 4 years ago!

    My daughter Emma is 7.5 years old and was diagnosed at 3.5 with a juvenile idiopathic scoliosis. She has a double curve as well as a pectus excavatum. At first her curves measured 53 and 48. Dr. Bunnel, her Ortho at Lomalinda University Hospital, in Southern CA, recommended a TLSO brace for her to wear at least 22 hours a day.

    We were fairly disciplined about her wearing brace the first two and half years. Even so her upper curve progresses to 58 degrees in the brace. She started resisting the brace more last year so she probably wore it no more then 15-20 hours a day during that time.

    Meanwhile we switched orthos to Dr. David Skaggs at Chidlrens Hospital of LosAngeles in June of last year. I had heard that he was more on the cutting edge of the field. HIs opinion was to keep her braced as long as the brace was bringing the correction it should. (He said you always hope for at least 50% correction in the brace). And we were only getting like 10%. We tried wearing the brace for another 6 months.

    Also, last August she had a severe rash break out on her abdomen and the only way to clear it was for her to not wear the brace for about two and half weeks. At her appt in Feb, Dr. Skaggs said since we weren't getting the right correction, and Emma was resisting the brace, he didnt think it would serve her to wear it. She was measuring 58 in the brace and 62 out of it. So we elected (to her delight) to not make her wear it any longer. He also said that we should consider doing surgery at this point. HE explained about extension rod surgery and how they do it and how she would need to go in every 6 months to have them extended. He also explained that he would elect to do it sooner then later for the following reasons: 1) the higher degree of curve the less correction you can acheive (only about 70% of whatever the curve is) 2) when you approach a curve of 70 - 80 degrees then you start imparing the functionality of lungs and maybe the heart. 3) her ribs are increasingly become malformed and her scoliosis is much more noticabable. (up to this point, becuase it was a double curve you coulndt really tell Emma had it. Now her right shoulder was much more "hunched" over.

    We went home and decided to think about it for a bit. We met again with Dr. Skaggs April 9th to discuss surgery. Emma has not worn her brace and now, because of what Dr. Skaggs said was the rebound effect, she was measuring 67 degrees. He also told us about a new extension rod that you do not have to adjust but grows with you. So we would not have to go in for adjustments. He siad that only about 12 children in the states has used them but that the data is positive and the complicaitons no worse then with the other form of rods. HE is slated to do his first surgery with these next month and Emma would be his second. She is scheduled for this surgery in August. HE says we will most likely do final fusion when she is 10.

    I share all this with you in the hopes to hear from those more expeirenced then I your opinions and perhaps some advice.

    HAve any of you heard about this new rod? I wonder about recovery time for Emma from the surgery? how much do the rods limit her movement? what sort of complications have people experienced? do the children have lingering pain? etc. etc.

    I would welcome your information and support so much!

    Joanne Moss
    Mother of Emma 7 (thoracic curve of 67 and lumbar curve of 45), Nathanael 5.5, Joshua 4.5 (who also has a 18 degree thoracic curve we are just monitoring) and Rebekah 2.5

  2. #2
    Join Date
    Oct 2003
    Location
    Utah
    Posts
    1,010
    Welcome Joanne,

    Thanks for sharing the details about your daughter and the recommendations for her. I will be watching for any more details you (or anyone) can provide about the self-adjusting rods that Dr. Skaggs is talking about. My son, Braydon, is 11yrs old and is a VEPTR patient (Vertical Expandable Prosthetic Titanium Rib). He had his rods placed in Aug. 2001 and has had 2 expansions per year since then. He is doing very well, I might add. He is growing and is an active pre-teen. I'd be happy to share some of our experiences with surgery with you, if you'd like. I'm sure the post-op experiences would be similar.

    You asked about rods limiting movement in the child. If you saw Braydon on the street, you would NEVER guess what his body has been through. He rides his bike, plays on the playground, digs in the dirt, and does everything else boys his age do. He loves to golf, play baseball (his new interest) go hiking, biking, etc. His ONLY restriction is "no full contact sports". EVERYTHING else is allowed (except tramplolines, but there isn't an orthopod on the planet that approves of trampolines - LOL).

    Braydon's rods (he has two) are located on the right side of his back to support the concave part of the spine and to expand his chest for his right lung to function properly. The benefit of the VEPTR is that the spine itself is not invaded. This allows what growth potential the spine has to grow naturally, with the assistance of the VEPTR rods to give support and aid in lengthening. The growing rods that you mentioned are placed along the spine - being fused at the top and bottom of the spine. There is more risk of spinal cord injury with growing rods because they are next to the spine. Spinal cord injury is a low risk. There are also studies done (I've heard Dr. Skaggs speak of this personally) that document kids with growing rods end up with their spines prematurely stopping growth. The rods somehow send a message to the spine to stop vertical growth after 3-ish years. They don't know why (that I've heard of) its just a common issue with growing rod kids. VEPTR kids have not had the same experiences.

    My only concern is that Dr. Skaggs is recommending final fusion at age 10. I would hope he's open to discussion on this. Being fused before reaching skeletal maturity leaves the risk of complications down the road (ie, crankshaft phenomenon, etc.). I'd be good and certaing (100%) that the timing of the final fusion is right. My Braydon will be 12yrs old in May. He is nowhere near his full growth potential. His bone age is younger than his chronologic age. If we had fused him (again) at 10, it would have been disasterous. Every patient is different, and girls grow at different rates than boys, but I just wanted you to know our experiences with that.

    Again, I'd love to hear what anyone has to say about the self-adjusting rods. Very cool concept - I hope it is hugely successful for kids like this. Take care and keep us posted.
    Carmell
    mom to Kara, idiopathic scoliosis, Blake 19, GERD and Braydon 14, VACTERL, GERD, DGE, VEPTR #137, thoracic insufficiency, rib anomalies, congenital scoliosis, missing coccyx, fatty filum/TC, anal stenosis, horseshoe kidney, dbl ureter in left kidney, ureterocele, kidney reflux, neurogenic bladder, bilateral hip dysplasia, right leg/foot dyplasia, tibial torsion, clubfoot with 8 toes, pes cavus, single umblilical artery, etc. http://carmellb-ivil.tripod.com/myfamily/

  3. #3
    Join Date
    Aug 2004
    Location
    ny
    Posts
    1,809
    Quote Originally Posted by Carmell
    There are also studies done (I've heard Dr. Skaggs speak of this personally) that document kids with growing rods end up with their spines prematurely stopping growth. The rods somehow send a message to the spine to stop vertical growth after 3-ish years. They don't know why (that I've heard of) its just a common issue with growing rod kids.
    Dr. D'Andrea once happened to mention that they prefer not to do the growth rods until a child is older (say, 10 or so) unless they absolutely have to. Perhaps this is why. It would make sense.

    These new rods that require no subsequent lengthening surgeries do sound very promising. I hope to hear some positive outcomes in the future.
    mariaf305@yahoo.com
    Mom to David, age 17, braced June 2000 to March 2004
    Vertebral Body Stapling 3/10/04 for 40 degree curve (currently mid 20's)

    https://www.facebook.com/groups/ScoliosisTethering/

    http://pediatricspinefoundation.org/

  4. #4
    Join Date
    Dec 2005
    Posts
    40
    Hello again-
    Not sure if you saw my reply to your Dr post but I did so hence the reason why I say hello again. LOL! I wrote a long reply to you about Dr Skaggs as that is who my 13 yr old son goes to so read that reply also and I wont repeat that here.

    I have not heard of these new rods but I also am not surprised that Dr Skaggs is the one who will be doing this surgery that is new to the medical field as like you said, he is on the cutting edge of new medical stuff. I can vouch for that as my son has actually been a kinda guenia pig you could say for Skaggs when he did a new type of rod on Cole for the first time. What I mean is that when Cole was 7 yrs old Dr Skaggs recommended the VEPTR (titanium rib) for Cole and the surgery was scheduled but then the day b4 surgery we found out that the inventor of the rib did not think Cole was a candidate so Skaggs could not use that exact rod due to the fact that it wasnt FDA apprvd yet and had to have Dr Campbells approval to use it. So a decision had to be made as Cole's curve was once again progressing badly and affecting his lungs/respiratory system. That decision was for Dr S to go ahead with surgery but use a different type of rod but place it about the same as the rib was and then extend the rod every 6 months or whenever needed. So we agreed and let him do this (first time used it and then he used it in other kids). Well it turned out wonderfully and all has been going good except now Cole is about done with his trunk growth so we are now going ahead with final fusion (after much research and discussion with Dr S).

    You mentioned that Dr Skaggs thinks final fusion s/b done when your daughter is 10 yrs old and I want you to know that for whatever reason he will start discussing the fusion soon but dont let that scare you now as who knows what will be said when she is that age. For now go with what you feel best (sounds like you decided on the new rods to be done in August) and deal with the fusion later. Easier to take one thing at a time. Also, does Skaggs give you a reason as to why s/b fused so early? And how much? partial or final from top to bottom (like my son will have this summer)?? Dr Skaggs had mentioned final fusion to us for a couple yrs probably and we always wanted to wait until after puberty and Skaggs just said he would just have to continue expanding rod then which was fine. but then the first of this year he had more concrete reasons for the surgery and it all fell into place for the right reasons. We had hoped to wait until Cole was 16 or so but found out that his large growth plates in torso were almost all done growing and closed up so he really wouldnt be losing much in torso growth if fused now. The longer we wait the more rigid Cole's spine will get and the less correction the Dr will be able to get. We recently noticed he is slanting more and also leaning forward in a kyphosis slant so he hopes to be able to correct all that during surgery. Cole has already been fused twice b4 (at 18 months and 3 1/2 yrs old-not at CHLA but at UCLA) and had halo traction and rod placed at 5 yrs old then at 7 yrs old the Veptr like growing rods placed so he has had so much done to try and help his curve and lungs and now we are coming to the end of the road on this. Skaggs hopes this will be his last surgery but no one knows for sure and alot he wont know until he is inside operating.
    Well I hope I was able to help you and if I can help with anything else let me know. Remember (like i said on other reply) dont let Dr S intimidate you, as his personality is not always the best but he is an excellent Dr with a wealth of knowleadge.
    When is the surgery scheduled for in August? Cole's surgery is July 24th and will be in hospital for 8-10 days so maybe we will be there same time and can meet. Do you live in the LA area? We live in Orange county so have a little drive to go there but not too bad. Oh also, we stay at the Travelodge across from Hospital on Vermont and I think they still discount for parents of patients. The area may not look the best but the Travelodge is real clean and nice. Take care!
    Stacey
    HB,CA

  5. #5
    Join Date
    Apr 2007
    Posts
    7

    y guys r great!

    Thanks all for writing...it is awesome to be among those who can relate to how I feel and understand the complications etc. of managing this situation.

    Emma is right now scheduled for surgery on August 15th. I'm hoping that she will get bumped up 2 weeks because she is to start school Augsust 27th at a new school and I didnt want her to go in late. (Back surgery and new school and coming in late seems to make a hard sit. even harder) So if she is scheduled earlier then perhaps we can meet! That would be cool. We live in Riverside and have actually stayed at the Travelodge. Do you know if the hospital has any options for people who need to stay nearby but may have financial challenges?

    I will let you know what these rods are like and how Emma does with them. No problem. If anyone else can benefit from her experience, then that somehow make her "suffering" a little more worthwhile.

    Re: final fusion at 10. Dr Skaggs said that its always a good idea to fuse before she hits the accelerated growth spurt at puberty. He said he has seen curves get exponentially worse during that time period. However, he did say that many parents who have extension rods in their children keep extending because they value the growth so much.

    In reading your posts I am confronted with how limited my knowledge is. Crankshaft phenomena? How do i find out about that? Bone density? what should I know about that? What do I need to know about the rib deformity? Do they correct that? What happens if they dont?

    The other thoughts is: so many juvenile scoli patients seem to have a lot of other conditions. And I was reading on the spinecor site that scoliosis effects so many other things... Emma doesn't seem to have any other things going on with her - except for the pectus excavatum. She has had an MRI and it came out clean. (thank you Lord!!!) She has always struggled with consitpation and at 2.5 had an intussupcetion (sp?) surgery. She also eats like a bird. I worry about that. She is very thin. Do any of you have insight into these things? And should I be "looking" for other complications?

    Carmel - thanks for writing. I had noticed a few posts by you before and I even went to your site before you wrote me! Cool. Also, i've heard the same about the growth stopping after fusion. The legs and arms continue to grow but the torso stops.

    Do any of you have recommendations for how to prepare her for the process and pain? She is so excited to have it done because then her back will be straight! She doesnt have a clue and while I dont want to scare her, I do want her to be realisitic about it all.

    What is recovery like after surgery? How long is she bed bound? How do I prepare for her at home, etc. activiites and things to keep her from being too bored and preoccupied with her pain?

    I didnt think abou this til now, but how long is she in the hospital? I will have to prepare for that stay and figure out what to do with my other little ones.

    Wow. THis is sorta heavy. Im processing as I type. Theres a lot to consider, huh?

    Joanne

  6. #6
    Join Date
    Dec 2005
    Posts
    40
    Hi-
    Sounds like you are pretty happy with your decision so far and that is good. We will have to keep in touch to see if at the Hospital the same time. In regard to the Hospital having anything to help parents with costs, yes they do. You need to get a hold of the social worker and she should be able to get you some cafeteria tickets worth something (i cant recall now) but every little bit helps. And they may be the ones to help with the lodging discount. I soon will be looking into all this myself so will let ya know what I find out too. I have CCS for Cole also (recently qualified since got divorced few yrs ago). My Ex covers Cole on his insurance (a PPO) and it is pretty good but there are still balances to pay afterward so CCS helps pay that balance of anything related to Cole's scoliosis as that isthe medical condition we got CCS on. CCS also got me a free hotel nite at the Travelodge and they set me up with the social worker at CHLA for last surgery. Since I got CCS Cole hasnt had any long term hospital stays (all those surgeries were b4 divorce) so this time I will have to ck into alot more to help me oout as Cole will be in for 8-10 days.
    I see you had questions regarding your daughters stay and recovery. Dr Skaggs should be able to tell you that-did you say you have another appt with him to discuss in full the surgery? If so, write down all questions and ask him then, he will tell you everything just like our last appt was about surgery and that is where we got all the info. And signed the paperwork then too. Off the top of my head I would think at least a week but also things depend on the patient themself and how well they do after surgery. You can also ask if she will go to ICU, usually in big surgeries they do and get put on a vent which usually can come off of quickly but again depends on the child,etc... Cole will be in ICU for a day or two we were told.

    While in the Hospital they have a playroom on each floor-well I bet you would be on same floor as us since ortho/scoli-I think that is the 6th floor but they have continued to do construction so not sure if that changed. They have child life specialist that come around to the room and ask if the child wants anything brought to them to play or games or if they want to go to the playroom and they tell when it will be open. The rooms have tv's and video so you can bring videos from home too (that was always good when Cole was younger). The also have video game machines that can be brought into the rooms. If this is her first surgery ask for someone to speak to you and her before surgery (maybe preop-not sure when they do this since we are repeaters havent had to do this for awhile). The child life specialist I believe and they can help explain and ease the nervousness,etc..

    Hope I answered the appropriate questions as now I cant recall everything you said in original reply post.
    Take care!
    Stacey

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