The Surgical Option We Decided On

After sharing with you all the surgical options we were faced with, it was great hearing from so so many of you.  I was surprised just how many people reached out to personally thank me for sharing the details in an easy to understand way.  Many folks were curious what we decided and so many shared their experiences with some of our options.  It’s true, there is no right answer, only time will tell, and every case and every spine is different.  But thankfully I can say, making this choice was relatively easy for Matt and me.

Here’s what we decided
(if you can’t wait and don’t want to read through the explanations in red type of why we didn’t choose an option, scroll to the bottom to the green and blue type)

Double Hemi Vertebra Excision:

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

We were happy to eliminate this one, even though this is what we thought we would be doing for a long time now.  This surgery just has such high risks.  Its a very intense and invasive surgery, being able to cut those risks significantly with another option is reassuring.   And again, nothing is certain, our surgeon just didn’t know what all this one would have produced in the end compared to the option we chose, if this surgery  had more certainty then maybe this would have been the option we would have chosen. 


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.

This surgical option had also been an option that was discussed for some time, but I’ve never felt comfortable with this one.  Sure, I love how minimally invasive it is but the 50/50 odds of it working never sat well with me.  Since the beginning of hearing about this option, I’ve always had this gut feeling that this wouldn’t work, that this would quickly produce large compensatory curves that would need to be addressed.  There’s no way of knowing if that’s true or even a possibility but my gut said it was.  This was a situation where I knew I needed to trust my gut.  Besides, if we have surgical options, I’d like to choose something with better odds if I can. 


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

While this option doesn’t carry as many risks and potential complications as the double hemi excision, the returns on this one just didn’t seem to stack up against the option that we did decide on.  This single hemi excision is still pretty invasive and our surgeon just didn’t think we could get as much correction with this one as maybe we would have hoped.  


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 compared to the excisions and is considered to have much lower risks too.

The Short Fusion is the surgery we decided to do.  We are very happy to know the neurological risks are lower, it’s less invasive, and our surgeon feels good about the results this could produce.  Don’t get me wrong, this is still a very major surgery.  And yes,  we don’t know if this will be a long term solution,  it has a good potential of it not being a one-and-done surgery but really they all do.  Our thinking was why do something really invasive and tough now when there is something less invasive on the table that has less risks and our surgeon feels good about. 

When talking with other parents just starting their journey, whether it be casting an idiopathic child or a young infant with a complex congenital scoliosis diagnosis, I’ve given the advice of ‘don’t look too far into the future’.  Focus mainly on what’s right in front of you.  Growing spines are just so hard to predict. Looking too far out into the future can be daunting, scary, or people can get their hopes up just to be let down.  I’ve been dishing out this advice for awhile now, it was something I learned in the beginning of our journey.  It’s a hard one to make yourself do in ways but it really does help.  I just didn’t realize how much I’d be relying on my own words of advice even now. Whatever comes our way in the future we will face it then and deal with it then. The future’s not ours to see…que sera sera

 

 

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One thought on “The Surgical Option We Decided On

  1. You are a brave person but very strong. I have kept Nora in my prayers and will continue to do so. Poor little tuning. I hate thinking of her going through all this. May God BLess and be with all of you.

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