Surgery in June?

[laurieg6]

My son just turned 12 years old & our orthopedic surgeon has recommended surgery for his congenital scoliosis. He has a hemivertebra at T10/11 causing what is now a 45 degree curve. He also has a lumbar curve which is now 60+ degrees - we had thought this latter curve was a "simple" compensatory curve but the Dr. believes there may be a vertebral bar causing or contributing to the curve. My son has been in a TLSO brace for almost 4 years. We have tried acupuncture, craniosacral massage, hellerwork massage & chiropractic to try to stabilize the curves & avoid surgery. But since he seems to be beginning his adolescent growth spurt, both curves are increasing. The lower curve has grown 10 degrees since last Sept.

I am so worried about & obsessed with this situation. He is still so short, only 4' 9" tall & I know he'll lose several inches off his final height with this surgery. I've also now had a second surgical opinion & the 2nd Dr. seems to feel that we need to do anterior & posterior surgery to prevent Crankshaft issues from arising. The Dr. we've been seeing since my son was 5 yo only said we'd do only a posterior fusion. They both seem to want to do a very long fusion - from T4 - L3 or L4. My son is a very smart, regular kid & I'm worried about future lack of mobility & the overall impact of a fused spine on his physical, social & emotional development.

Does anyone have any advice/reassurance/anything to tell me about what they, or their children went thru with this? I'm barely able to sleep & often walk around crying when my kids are at school but manage to put on a happy face for the kids when they're home.

I've been reading other people's posts for several days now & finally had to write one myself. I really appreciate any support or words of wisdom anyone has to offer. Sorry this post is so long & wordy. I can't seem to stop writing once I start.
Laurie

[MATJESNIC]

Laurie,

I am really sorry for what you are going through. I can feel your pain. I can't offer any advice or suggestions. All I can say is that I would personally get three opinions from 3 different surgeons at 3 different hospitals. Three would be the minimum if they are not all saying the same thing. I am sure someone will come on here and be of some help. No matter what happens, you will all get through this. I am thinking about you and pray that you get some guidance soon.

[Carmell]

Hi Laurie,

You are not alone. This is a huge decision, especially when you see a seemingly healthy child running around and being active, etc., yet some doctor wants to do a majorly invasive surgery. Very hard decision. Sometimes surgery (fusion) is the right answer. Sometimes it isn't. Timing of the surgery is also very important. I agree that you need more opinions from PEDIATRIC orthopedic surgeons who specialize in treating young children with congenital scoliosis. I'm sure many here can give you suggestions based on their experiences about who may be able to give you good advice.

I'm assuming your son has already had an MRI to rule out any hidden spinal cord problems. If not, I hope they do that before any invasive surgery.

My son will be 12 in May. He was born with congenital scoliosis and had his first surgery (a/p fusion) at 11 months old. I totally understand the worries about having a short torso, and the implications major fusion surgery may have to his future. My Braydon is 53 inches tall. His trunk is 4+ inches shorter than it should be already. When he reaches a puberty growth spurt, I don't know how much more disproportionate his trunk will be. We had to make a decision about stopping a rapidly progressive curve without worrying about the future. Hind sight... There are new technologies today that would have allowed him to avoid fusion at such a young age, but you can't undo the past. My point is to find a ped. ortho who you trust completely - who will give you the facts, including the risk of crankshaft, the risks of early fusion, the risks of waiting and having his spine continue to curve (if it does), etc.

I hope you find the peace of mind you need to make the decisions that will give him the best future possible. Let me know if you need moral support... LOL

[laurieg6]

Hi Melissa & Carmell,

Thanks for your information & support. You seem to have a lot of personal knowledge about my type of situation & I really appreciate you sharing it. People who have never been through this keep trying to tell me I'm making too big a deal of my son's situation & the impact the surgery could have on his future comfort & health. They seem to say that I should just go with what the Dr. says but I can't seem to do that yet.

We have a third opinion regarding my son's surgery in a couple of days but I am starting to think it's inevitable. He's still so little though & so innocent about it all. He just wants to be done with the brace. He's nervous about the surgery itself but has no ability to think about a future with a fused spine. Am I making too big a deal about it? I've read a lot of posts & there seems to be so many possibilities about how the surgery can affect a person's future. I wish my son could at least wait a couple of years to do the surgery but the Drs. seem to think he could end up tilted & with a spine so curved that the surgery would be much more difficult & dangerous.

Laurie

[Carmell]

Hi again, Laurie,

<<People who have never been through this keep trying to tell me I'm making too big a deal of my son's situation & the impact the surgery could have on his future comfort & health. They seem to say that I should just go with what the Dr. says but I can't seem to do that yet.>>

Good for you! Being able to stand up and say WHOA, I need to understand better is a huge thing. A very good thing. I think you are doing the right thing by getting more opinions and finding more answers (which often leads to more questions, but that's okay too).

<<Am I making too big a deal about it?>>

Absolutely not. This surgery is a HUGE surgery. It will alter his body forever. The hope is that the surgeon knows what he/she is doing and will be able to alter his body in a positive way - giving him a future of living a full life pain-free.

The downside is that that scenario isn't ever a guarantee. You have to consider the risks and implications, always.

On the positive side, I know a 6yr old who had a major lumbar fusion in August to stabilize his lumber spine. They fused up to T12. They also anchored his sacral spine to the pelvis. MAJOR surgery, with MAJOR implications. However, he is doing very well. To see him walk, you'd never know what his little body has been through. His parents chose surgery sooner than later because he was having obvious signs of progression at a very young age - his spine was collapsing into his pelvis, causing all kinds of wear-and-tear on the soft tissue. These are things you need to consider when choosing a surgeon for your son. If his spine is so out of balance that the soft tissues are being damaged prematurely, maybe surgery sooner than later is a good thing.

Have you asked about rods that will grow WITH the spine, rather than a complete fusion? Maybe buy him a few years of growth before doing a fusion, yet have support to prevent more curve progression? Who is the ortho you've been seeing? MOST ped. orthos who have experience treating kids with congenital malformation never put kids in a brace. Bracing is a non-issue - braces can not "fix" what nature didn't form correctly in the first place. Most kids are miserable in a brace and when a brace isn't doing any good, why battle a brace? That's the thought of my Braydon's ortho.

For your upcoming third opinion, I would ask specific questions about your son - ask things that you've talked about here. What is the experience of the doc? How many kids like him have the docs treated successfully? What are the pros and cons of doing surgery now -vs- waiting? Lots of questions that need answering.

Good luck and keep us posted.

[laurieg6]

Hi Carmell,

The Dr. that has been following my son since he's 5 yo is Mark Dales. He's a pediatric orthopedic surgeon from Swedish Pediatric Specialty Care in Seattle, WA. I wonder if you or anyone else on this forum has heard of him or been his patient. He seems to be competent & likeable; he has always been calm & reassuring & never gave me too much information to stress me out. We had seen a Dr. at our Children's Hospital here in Seattle when my son was 6 yo who was very negative about future possibilities & that did not sit well with my husband & I.

Dr. Dales put my son in a brace almost 4 years ago because he thought it might help his "compensatory" curve which he now believes is really created, or worsened, by the vertebral bar. The brace seemed to help for a while but seems fairly useless at present so I don't push my son to wear it. The Dr. thinks he should keep wearing it until the surgery because my son's progression in 3 mos. was 5-10 degrees in his lumbar curve. The Dr. is worried that by the time we do the surgery, he could end up tilting on the outside? I'm not really sure how that would happen so quickly. What do you think?

Thanks again for all your information & support. It's been so great corresponding with you & reading your's & everyone else's posts. If anyone else wants to join in again, please feel free. I really like to hear about the experiences & ideas of other people in a similar situation.

Laurie

[Carmell]

Me again... (I promise I'm not trying to hog the conversation here

Thanks for the details. I have never heard of Mark Dales. Does he specialize in congenital malformations in children? How many kids like your son has he treated? I'm still very leary of his recommendations because it just doesn't seem to fit with what other experiences I've heard over the years. That's not saying he isn't kind and wise and that he doesn't have your son's health in his best interest. I'm just saying you need to know 100% for sure that he's the right surgeon with the right plan.

There is a list of "scoliosis specialists" found here: http://www.srs.org/directory/directory.asp

These docs must commit a certain percentage of their practices to treating scoliosis patients. Dr. Dales is not on this list. I also realize that many PEDIATRIC orthos are not on the list because very young children with scoliosis are not too common, so committing a chunk of your practice to scoliosis care can be difficult (they don't want to do the paperwork for only a few patients). However, this is also a good argument to not choose a doc on this list because they tend to not have the extensive experience you want them to have when treating your child. (My soapbox for the day - opinion only.)

Having said all that, I wonder if the doc you saw years ago that gave you a grim outlook was really trying to give you a worst-case scenario rather than be negative about your son's future. I've heard very good things about Dr. Kit Song at Children's. He has treated kids who have very complicated spine malformations successfully. These families would do anything for him because of the way he has treated them. If Dr. Song is who you saw before, I would hope your experience was just a "bad day" or something.

It does make sense that your son was put in a brace to help stabilize the compensatory curve. However, as you now know, that doesn't often work. You take a chance with a brace when dealing with congenital malformations.

<<The Dr. is worried that by the time we do the surgery, he could end up tilting on the outside?>>

I wonder what actually he means by "tilting on the outside"... I can't imagine that waiting a few months would make a life-threatening change for him. I would think that waiting and getting more information would be a safe bet.

When you posted that they recommended a long fusion - T4-L3/4, did they say WHY such a long fusion? If the hemi is at T10-T11, why go so high on the spine? Are they suggesting an excision of the hemi? This is another good argument to have an evaluation by a doc who has lots of experience with excision surgeries. Many kids who have had excisions and short fusions have done extremely well with no long term negative effects.

As young as he is, I, too, would worry about crankshaft problems if they only do a posterior fusion. Kinda scary. Make sure to keep asking docs about the risks and benefits, and what their experiences with the type of surgery they are recommending are.

Good luck! When is your next appointment?

[laurieg6]

Hi Carmell,

Today we saw Dr. Ted Wagner @ Children's Hosp. He recommended a shorter fusion - from T8/9 thru L3. That seems much more reasonable to me. He also would only do a posterior fusion because he thinks the risk of Crankshaft is so minimal. However, Dr. Wagner doesn't seem to want to do the surgery because he has so much respect for Dr. Dales. The Drs. will hopefully speak to each other about this soon & agree to the shorter fusion. Dr. Wagner (like Dales) thinks the risk of excision surgery are too great (I think because the hemi is so high up?) & that there will be a little bit of correction through the fusion without needing to take out the hemi.

I don't think you're hogging this conversation! I really appreciate all your input. Have you heard of Dr. Wagner? I think he's on the list of scoliosis specialists.

Thanks again,
Laurie