Early this week we met with Nora’s surgeon to discuss a new surgical option he thought of after seeing her CT scans. To give you a little more background information, Nora has been involved in a research study through the Children’s Spine Foundation since her diagnosis. Our surgeon is also involved in a continuous research group with EOS and Congenital Scoliosis focused surgeons across the US and around the world. He reached out to this group and shared Nora’s CT scans, x-rays etc to get their input on what surgery to do. He said he reached out to 14 of these surgeons, some of these surgeons are considered the top surgeons in their field in the country or even world! I thought to myself, this is great! We are getting the benefit of 14 different ‘second opinions’ without actually having to step foot in their hospitals. Until the next words out of his mouth were, “there’s no real consensus on what surgery to do. They all have different opinions and reasons behind them”

What? How is this possible? How is this going to make deciding any easier?

So here it goes, here are the details many of you have asked for, the details on each surgery option we have. I hope the visual below helps as a reference when I’m describing these.

Double Hemi Vertebra Excision:
We’ve thought for a long time now that this was going to be the surgical option that made the most sense. We’ve been preparing ourselves for this one in our heads. Nora has two hemi vertebras in a row at T-10 and T-11, just that extra one, right next to the other one, makes her case more complex than if she only had one there. If she had only one hemi, the best option would be a single hemi excision and small fusion, a very long and risky surgery in and of itself. The double excision of course adds to the complexity and the risks.

What this surgery would mean is he would go in and remove both of those odd shaped vertebra. If it were only a single they would close down the vertebra above and below the one they remove and tighten it up and fuse it there from just the back part of vertebra not touching the front side of the vertebra. They can’t do that with two hemi’s in a row, at least not hers. What they would have to do is remove both, and do a fusion across the now open space on the front side of the vertebra as well as the back side but not cinching it down bone-to bone.  They can’t cinch two openings down in part because of the spinal cord.  It would be “open”. This “open” space would be have to be supported with a metal mesh cage. It would be fixated to the front and back of the three vertebra above and three below to ensure its stability, essentially fusing those above and below all the way around. This cage would be under the skin but would stick out some and you would see it.

The Cons:
– This surgery takes 8 or so hours
– It has high neurological risks – yes, just what you are thinking, damage to the spinal cord.
– Significant blood loss can occur in this surgery resulting in the need for blood transfusions
– Infection rates from surgeries that require more instrumentation are high
– Longer hospital stay post-op
– The curve could still progress as she grows requiring another surgery
– Compensatory curves could develop. These are curves that develop as a result of the initial curve below. Almost as if the pressure from the first curve would cause a secondary curve
– This surgery is considered a very big surgery with high risks. This is the biggest surgery with the highest surgical risks we have considered.
– Overall height loss of about 2 inches

The Pros:
– It has the highest possibility of being a “one and done” surgery. Meaning we wouldn’t have to do another surgery down the road because this one would be the ‘strongest’ almost.
– Significantly smaller rib hump
– Initially before our consult we expected this surgery to give us the best results in terms of correction, meaning it would straighten her spine the most as well. However, with the new information from the CT scan our surgeon ran all this though a simulation program and it didn’t project as much correction as we had anticipated

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The Short Fusion
The CT scan gave a much better picture than the x-ray in terms of exactly what her abnormal vertebra look like. For a long time, one looked the most significant and we were just kind of waiting to see what the other one would do. Over time, it began to present itself as just as much of a problem as the first. The CT showed they are both about the exact same size and shape. The idea of this surgery would be to actually leave them in but carve out small horizontal semi-wedged sections of a certain part of each vertebra, almost like shaving it down, so he can pull it tighter to get more correction. He would then do a short fusion that would only involve putting screws in on the back side of the vertebra and not touching the front side.  The screws/fusion would encompass the two healthy vertebra above the hemis and the two healthy vertebra below the hemis. Screws would be placed on both the back left and back right side of the vertebrae, but again not on the front side.

The Cons:
– The curve could continue to progress because she would only be fused on the back side of her spine. So the front side of the vertrbra could grow and cause the spine to curve.  She would then require another surgery or surgeries. Technically speaking , her odds of this happening are higher here than if we were to do a double hemi excision.
– The curve could not only progress but more rotation could occur as well. She would then require another surgery or surgeries. Again, her odds of this happening are higher here than if we were to do a double hemi excision. Rotation has a very slim chance of happening in the double hemi excision
– She will still have a rib hump, it will be smaller but not as small as it would be from the double hemi excision
– Compensatory curves could develop
– Overall height loss of about two inches
– Higher chance of needing subsequent surgery than the double or single hemi excisions

The Pros:
– This surgery takes about half the time of the double hemi excision
– The neurological risks are significantly less
– Blood loss is significantly less. A transfusion would most likely not be needed
– Shorter hospital stay post-op
– He thinks he will be able to get pretty good correction from this surgery, possibly the same as he would from the double hemi excision maybe slightly more.
– This surgery is less invasive and is considered to have much lower risks

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Convex Short Segment Instrumentation
A fancy name for what is the most conservative approach of all of surgery options. This surgery also involves leaving the abnormal vertebras in place and placing screws in and fusing only one side, the right side and also the back side, of the vertebra. Screws would be placed only on that one side one or two levels above and below the abnormally shaped vertebra. The idea here is that the screws on one side would act as a tether almost and pull the spine straight and allow the left side of the spine to be free from hardware and would have the ability to still grow.

The Cons:
– This surgery is considered relatively new so there isn’t any long term data available
– This surgery has a high failure rate. About 50% of the time it doesn’t work and it fails quickly
– This would probably only provide about 30-35% correction of her spine
– The curve could not only progress but more rotation could occur as well. She would then require another surgery or surgeries. Again, her odds of this happening are higher here than the other two options. The behavior of the curve after this procedure is just unpredictable
– She will still have a rib hump
– Compensatory curves cold still develop and probably have a slightly higher chance of happening with this method
– Overall height loss of about 2 inches

The Pros:
– This surgery is the most conservative so it’s the ‘easiest’
– It has the lowest rneurological risk
– It’s a short surgery only taking 2 hours
– Little blood loss is expected
– Fastest recovery time of all options
– Placing the screws in just one side could stop the curve progression but it could also result in spontaneous correction all on its own but knowing if that would happen is impossible to predict
– Doing this surgery doesn’t “burn any bridges” so to speak if it does fail and other surgeries are required.

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Single Hemi Vertebra Excision – Taking one out and leaving one in
This surgery would involve taking one hemi out and leaving one in and doing a fusion of both the front, back and sides of the hemi that’s being left in.  He would fuse the two vertebra above and below the hemi left inside. There would be no need for the mesh cage to be used like in the double hemi excision. The idea here is that taking one out would provide better correction than the short fusion surgery but how much is unknown.

The Cons:
– This is a long surgery, 6 hours or so
– More blood loss, possible need for a transfusion
– It has also has high neurological risks
– Infection rate is higher
– Longer hospital stay post-op
– The curve could still progress as she grows requiring another surgery or surgeries
– Compensatory curves could develop
– In ranking order, this surgery has the second highest overall risks associated with it.
– Overall height loss of about 2 inches

The Pros:
– It has a good possibility of being a “one and done” surgery.
– Significantly smaller rib hump
– Initially before our consult we expected this surgery to give us the good results in terms of correction. However, with the new information from the CT scan our surgeon ran all this though a simulation program and it didn’t project as much correction as we had anticipated

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So the overall cons from all of these are: they are all still major surgeries, she will never be completely straight, she will always have a rib hump and she will lose about 2 inches in trunk or overall height with any of these options. There is no solution that addresses all of these things.

If there was any additional tool a pediatric spine surgeon would want in their arsenal I have to believe it would be the crystal ball. The unpredictable nature of the growing spine is just that…. unpredictable and makes their job difficult.

In all these methods, there are unknowns of what will happen down the road, some have a bit better predictions but overall we just don’t know how her body will respond, what will happen during major growth periods. There is no one right answer here.  That has probably been the hardest factor for me to accept and understand. Modern medicine has advanced so much. For a very long time, in my mind, it seemed unacceptable to know so little of what will happen in the future after these surgeries. I understand this and have accepted this better now, but its has taken time. I think because I’ve been so fearful of making a wrong decision that will affect our child’s future. I struggle with dealing with fears of future from many things in life, not just this. But that’s just it, there are no guarantees to anything in life. Living with that fear will destroy you.

I’m happy to say Matt and I have made a decision on what surgery to do and are at peace with our choice. Of course we are still nervous and afraid but we are ready to focus on this next step and will we try not worry about the future’s unknowns.

For those of you who are intimately involved in Congenital Scoliosis or Early Onset Scoliosis can you guess what surgery we decided on? What would you choose?