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Thread: Final Fusion?

  1. #1
    Join Date
    Dec 2005
    Posts
    40

    Final Fusion?

    Hello

    I was wondering if anyone has had or has a child who has had final fusion surgery already and at what age? My son will be 13yrs old next month and the Dr is recommending it now for his severe congenital scoliosis. He has been fused twice already as a toddler and had a halo on with traction and has two rods (one is an expanding rod similar to titanium rib/Veptr).
    We were told his growth plates in his spine dont have many left and that area will not grow much more-that instead his legs will do most the growing. He wants to do the surgery b4 the spine gets too rigid as then he wont be able to manipulate it as straight as he would like. We originally wanted to wait until growing done but now have thought this might be right thing for him after hearing what Dr says and the reserarch I have done already does concur with our Dr's info about growth in the spine. Cole goes to Dr Skaggs at Childrens Hosp Los Angeles and his curve is currently at approx 89 degrees.
    Thanks
    Stacey

  2. #2
    Join Date
    Jan 2007
    Posts
    65

    Final fusion and growing

    My son Spencer is 10 years old and was completely fused from T2 to pelvis in his recent surgery. Obviously Spencer is different from your son since Spencer is non-weight bearing, but we were concerned about continued growth after fusion and if he would require more surgeries. Our doc said that they would close the growth plates with bone graft during surgery so that he would not grow anymore in his trunk. He will still grow in his legs and arms, but the doc said he would not look disproportionate. For us, the appearance aspect is of little concern, since Spencer already looks very different from most people, and honestly we are not disappointed that he won't grow more in the trunk since we have to lift and carry him almost everywhere.

    13 seems a little young to me in terms of terminating growth for a more active child, but the docs can do a pretty good job of estimating future growth based on available space in the growth plates. If your doc is telling you the growth plates are nearly closed now, then your boy is probably close to his full trunk height anyway. But it might be worth a second opinion with respect to how much room there is left. I'm sure his curve is affecting the available room in his spine, and when they straighten it he will be taller anyway. Spencer's height (length really, since he is almost always laying down) grew by more than 3 inches. I also think your doc makes a good point in wanting to straighten the spine while it is still more flexible to get better correction. I would think a straighter spine is worth an inch of height lost.

    Good luck with your decision. Not an easy one, I know, but I'm sure you will come to the right decision for you son.
    Spencer's Dad

    11 year old boy with PMD Luekodystrophy
    Nonambulatory, nonverbal, nonweight bearing
    VRO and Pemberton hip reconstruction at age 5
    Nissen fundo at at age 7
    Subdermal spinal drug pump at age 9
    Complete Spinal Fusion Jan. 9, 2007 at age 10.
    118 degree curve before surgery - less than 25 after!!

  3. #3
    Join Date
    Dec 2005
    Posts
    40
    Spencers Dad, thank you so much for the information . May I ask why your Dr wanted Spencer to have this full fusion now at his young age? Cole is already fused from T4 - T10 (done when he was much younger) so not much more left anyway in the thoracic area, just the lumbar area mostly.

    I loved the sentence "I would think a straighter spine is worth an inch of height lost." That really puts it more in perspective for me. I have a list of questions for the Dr as we have another appt Feb 19 to discuss the surgery further. He will get taller after the surgery like you mentioned your son did, the Dr did say this plus when he had his other major surgeries this also happened.

    Good luck with your sons recovery.

    Stacey

  4. #4
    Join Date
    Nov 2005
    Posts
    402
    Hi, I had my entire thoracic spine (T1 - T12) fused when I was ten, and it hasn't made a noticeable difference to my height as an adult. I was told that by the age of 10 a child's trunk has reached 80% of it's adult size anyway, and that most growth after that would be in the limbs :-) I am 5'3" tall and rather than looking like I have a short torso, I look like I've got relatively long legs

  5. #5
    Join Date
    Jan 2007
    Posts
    65

    Bracing or other options

    Hi,

    Spencer's curve started progressing rapidly after insertion of the drug pump, which is very common, and in the 3 months we were waiting for surgery he progressed from 105 degrees to 118 degrees. Our pediatric ortho said she recommends surgery for kids like Spencer at about 107 degrees because after that the curve really affects their lung field. In fact Spencer's lungs were very compromised before surgery and look so much better now .

    Also, since Spencer is non-weight bearing, bracing was mostly ineffective. We had a TLSO brace for about 2 years and it helped spencer sit upright, but did not arrest his curve progression at all.

    I suppose you have explored bracing options, or less invasive surgical options? I don't know much about them, or whether they would even apply to your son's condition, but there is a lot information on this forum, and parents with experience who are willing to share information regarding boston braces, spinecor bracing, vertebral stapling, etc.

    Spencer is sort of a special case in scoliosis, since his scoliosis results directly from his nueromuscular degeneration (Leukodystrophy) which we can't fix . So there was little reason for us to pursue these options since they would only be "stop gap" treatments. We waited as long as we could to let him get as big as he could (35 pounds is all) before doing the surgery, but in the end, it had to be done or he would start having life threatening respiratory problems.

    It sounds like your son has already been through a lot and I'm sure you don't want him to have to undergo surgery if another option exists. I hope in your list of questions you have at least one big picture question like, "is there anything we can do besides surgery?", or "is there another option we can try first?" Maybe, like with Spencer, there isn't much else left to do...but its probably worth asking, just to hear the docs responses. At least it will make them explain (again) what their reasons are for final fusion.

    Good luck and let us know how things go!
    Last edited by Spencer's Dad; 01-26-2007 at 09:39 AM.
    Spencer's Dad

    11 year old boy with PMD Luekodystrophy
    Nonambulatory, nonverbal, nonweight bearing
    VRO and Pemberton hip reconstruction at age 5
    Nissen fundo at at age 7
    Subdermal spinal drug pump at age 9
    Complete Spinal Fusion Jan. 9, 2007 at age 10.
    118 degree curve before surgery - less than 25 after!!

  6. #6
    Join Date
    Dec 2005
    Posts
    40

    Final fusion now scheduled for July!

    Spencers Dad-
    I never replied to your last post but we did see the Dr this past Monday to fully discuss in detail the surgery. He spent alot of time explaining things to us and we decided to go ahead with the surgery this summer. We could wait and do an expansion on rod only but that would be taking a chance on the rod becoming too rigid and also more possibility of breakage and replacements needed on current Veptr like rod. We again were told most his growth plates in the spine are closed and that was a big concern for us. Also Cole has already gone thru some puberty changes with hair almost all over-the Dr noted the facial hair and said when puberty occurs that is a good time to finalize things. Cole will be 13 1/2 yrs old at time of surgery so by then he may grow more all over too since he seems to grow every few months lately.

    There really is no other options for Cole and I fully trust our Dr as he is the asst Director of Ped Ortho at Childrens Los Angeles and a very respected Dr who travels all over the Country giving lectures, etc... He said he is always thinking and if comes up with a new plan will let us know-he also will discuss the surgery with the Head Director at CHLA and all other surgeons and residents there to see if anything else can be done.

    His plan is to fuse from T2 to right before the pelvis or possibly to the pelvis but wont know for sure until gets inside during surgery. He will take the current rods out and insert two new permanent rods. Cole is to be in Hospital 9-10 days with a month semi-recovery and 3 months until full activities. The Veptr like rod (growing rod) Cole has now is off to the side and the Dr hopes that Cole does not slump over once it is removed but if does will come up with a new plan of action. He showed us an xray of Cole's back before this Veptr like rod was inserted at 7 yrs old and boy he was slumped over real bad-you can see how much better he looks today.
    Even tho now you can see he has progressed again but nothing compared to before. Alot will be learned during the surgery itself.

    I will try to keep you posted.
    Stacey & Cole
    Southern CA

  7. #7
    Join Date
    Jan 2007
    Posts
    65

    Good luck

    Stacey and Cole,

    I'm glad the docs took time to give you a thorough explanation. I have found over the years that when a doc takes the time to explain his reasoning, even if they don't have all the answers, I will usually agree with the proposed procedures. I just want to know the reasons myself so that I can make up my own mind. It also sounds like your doc is highly qualified and has some very good reasons for wanting to proceed, so this has to give you some confidence in what he is proposing.

    As you can see in my signature, Spencer was fused with a "unit rod" from T2 to pelvis in January. It is a big surgery and Spencer lost a lot of blood during the procedure. But he is recovering nicely now. Make sure you ask about the possibility of blood loss and if Cole can donate his own blood before surgery (but he might be too young for this).

    Anyway, good luck with everything, and keep us posted on how things go.
    Spencer's Dad

    11 year old boy with PMD Luekodystrophy
    Nonambulatory, nonverbal, nonweight bearing
    VRO and Pemberton hip reconstruction at age 5
    Nissen fundo at at age 7
    Subdermal spinal drug pump at age 9
    Complete Spinal Fusion Jan. 9, 2007 at age 10.
    118 degree curve before surgery - less than 25 after!!

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