Hindsight is 20/20 – Looking Back, What Would I Have Done Differently?

We are more than two months post-op and coming up on almost three years since diagnosis and treatments. Naturally, throughout much of this journey, I have had time to reflect on specific experiences. Over the last three years I’ve also gained a great deal of knowledge. Of course, like many difficult roads traveled, there are moments where you think, “I would have done that differently”. Thankfully, at least so far, my list isn’t that long but I do think others can learn from my reflections.

Here’s my list of what I would have done differently knowing what I know now:

1. Comparing. I wish the literature, the websites, the overall information and patient stories I found on infants or young children with congenital scoliosis were more black and white in stating how very different cases of congenital scoliosis were. Most resources provided vague synopses of the disease so I didn’t understand the varying degree of complexities there were. Of course I could recognize the differences in extreme cases but there is still so much in between that.  I didn’t realize how two children’s cases could ‘seem’ so similar yet come to find out much later, they really were very different. That was the hard piece to understand and is worth repeating, cases could seem so similar yet they really were very different.

Early on I tried comparing my child’s case with others that sounded similar and it caused a great deal of frustration because the treatment plans and approaches were very different. It made me question everything but it was also a great way to really learn more.  The fact of the matter is, congenital scoliosis can have such varying degrees of complexities. What seems so similar can, in fact, be very different but it’s hard to understand that or actually see the vast differences unless you are a trained surgeon.

My advice to myself now would be, do not compare your child’s case to another. Ask all the questions, and let your surgeon point out cases that can legitimately be compared.

2. Second Opinions. This one is tricky, ultimately, I think second opinions are very important for congenital scoliosis and even early onset scoliosis. They are both so very rare, and I do think second opinions can be very helpful.

We got our diagnosis when Nora was five months old. I quickly learned this was rare and could be complex. I immediately thought we need to get a second opinion right away. Here’s the thing, we were very lucky to be referred to the surgeon who has been treating Nora since the beginning. He’s has extensive experience and background in congenital scoliosis and early onset scoliosis. He trained at one of the best hospitals for this in the country. We were lucky to have been referred to him from the get-go. I’ve learned many folks are not as lucky. Many are referred to the pediatric orthopedic surgeon who treats adolescent scoliosis and numerous other orthopedic issues, the surgeon who does not see these cases regularly.

Still, I rushed to get another opinion.  The surgeon we saw was the chief of orthopedics at a top 10 children’s hospital in another state.  But this surgeon was just like the one I referred to above. It became clear in the appointment this man did not see congenital scoliosis patients regularly and yet he would have been happy to taker her on as a patient. His recommendations and assessment was extremely different. Looking back, I never should have seen this surgeon. I should have researched more who I was going to see.  Early on I didn’t know the differences in pediatric orthopedic surgeons.  I assumed because this surgeon was the chief of orthopedics at a nationally ranked children’s hospital, surely it meant he knew a lot on EOS and congenital scoliosis. He clearly did not.  He also should have been upfront and referred us to a hospital on the other side of town that specializes in this, but he didn’t and that’s a whole other story.

We got several opinions over time.  We ended up seeing some top experts in different parts of the country and it was helpful but I also think our timing wasn’t the best. With congenital scoliosis you, almost always, are in a ‘wait and watch’ mode. Tom Petty said it, the waiting is the hardest part and it really is when you first get the diagnosis with a young child. The urge is to run out and get those second opinions right away. But here’s the thing, the young growing spine can be unpredictable. There is a vagueness about what to do exactly and when to do it in many cases. I think it’s best to make sure you are seeing the right type of surgeon in the beginning but then wait on second opinions.  Wait till things have progressed and surgery or other forms of intervention are being discussed or when things start to impact the overall health of the child. This is when second and third opinions are going to be the most valuable, I think. The one good thing about congenital scoliosis is there is time. Usually nothing requires an emergency type of surgery or intervention, you have time to figure our who your child should see.

Now, ironically if your child has early onset – infantile idiopathic scoliosis – well that changes things. This is just another example of how different these two forms of scoliosis are. Early onset  infantile scoliosis, in a young child, does not have time on their side usually. The most effective treatment is usually EDF/Mehta casting.  And casting is most effective when started young to maximize the opportunity of rapid growth that is ahead of the child to achieve growth guided correction. If you have a child with this form of scoliosis you need to act fast to make sure you are seeing a surgeon with a great deal of EDF/Mehta casting experience, unfortunately this surgeon isn’t always easy  to find either. There are still many surgeons who say casting is barbaric and the best option is wait, let the curve progress, and do growth rod surgeries later.  That thinking blows my mind.

3. Watching YouTube Videos – When I learned about the surgical options we had, I immediately began Googling. I was mainly lookingwish i knew for peer evaluated published studies on the surgical options. Soon into my searches, YouTube videos popped up that were showing the actual surgeries… like in the OR… right there looking down into the exposed spine. Watching surgical procedures has never grossed me out, in fact, I find them usually fascinating. Many years ago, I actually worked as a veterinarian technician where I got to assist in surgeries and I loved it. But there is something very different about 1. Watching orthopedic surgeries. So much hammering, chiseling, sawing. It’s tough and rough, it’s doesn’t seem as delicate as say watching an open heart surgery. And 2. Knowing that the surgery I was watching might actually be performed on my child adds a whole personal and different element to it. Watching these videos was a mistake. I didn’t watch for long but it was a mixed feeling of fascination, being scared, and feeling sick to my stomach. Looking back I would tell myself, do not watch videos of what your child’s spine surgery will be like. This seems so obvious….I know.

4. Going Back to the OR with my Child for Castings. – Nora was just 14 months old when she had her first cast applied. At the hospital that day, the nurses asked us if we wanted to go with her into the OR and stay while she was put to sleep. We said yes. It was really really hard to hold my child as she screamed and whimpered and fought the mask that slowly put her to sleep. I can still hear her soft whimpers that sounded like nothing I had ever heard from her before or since as she lay barely asleep on the table. It’s too much, too hard emotionally to witness that. But it was too late, we saw what we saw and experienced what we experienced, we felt locked in so we went back into the OR with her for every casting she had. There are times in life where ignorance is bliss. Looking back, I would tell myself not go back into the OR on casting days. The day and process is hard enough as it is.

5. Preparation for Recovery in the Hospital – If you follow my blog, or know me from the support groups, or from everyday life you know I’m usually extremely prepared. I’ve researched and talked to other parents, surgeons, etc, almost obsessively about everything in my daughter’s diagnosis. You would think I would have been fully prepared. But I wasn’t.

Our surgeon expected Nora to be released from the hospital earlier than she was and for whatever reason, I didn’t prepare myself really for the possibility that she would be there longer. I didn’t even pack extra clothes for myself. Looking back I would have prepared myself mentally for the possibility of staying longer.

He also was hopeful she wouldn’t need a blood transfusion, but of course it was a possibility and we filled out all the paperwork beforehand in case it did need to happen. Somehow, again in my mind, I didn’t think she would need one. She did need transfusion a couple days later. I wasn’t fully prepared for that mentally. There’s something about the words “blood transfusion” that seems so scary and horrible but really it wasn’t bad and it was the best thing for her.

Almost all the advice I got from other parents was: the first 24 hours post-op are the hardest. So that’s what I expected. That wasn’t the case  for us. The second day was much harder. Seeing it be harder than what others told me, threw me for a loop and I couldn’t help but let my mind wander and worry that things were not going well. When in fact, everyone’s recovery is different and it’s actually really common for day two to be much harder.

I wasn’t fully prepared for the difficulties we faced in recovery. The harsh realities of the side effects of narcotic pain meds and anesthesia – no one really talked about that with us.  Those side effects were some of the hardest to deal with in the hospital and some of the most heartbreaking.

Looking back, I would tell myself to fully prepare for many of the possibilities that can happen during recovery. I would ask other family’s to talk about the parts no one talks about.  I would ask about every aspect of recovery.  I thought I had but clearly I missed the mark.

6. Asking  Questions – Again if you know me, this one probably seems odd because I ask a lot of questions and have even written a blog post that lists tons of questions, I think are vital to ask your surgeon. But I didn’t ask all those questions in the beginning.  I asked a lot of questions but there were many I didn’t ask, many important questions I never thought to ask in the beginning.  I was just very lucky to have found a great surgeon who, thankfully, would have fit the bill anyway. But many of my questions early on never would have revealed that…we just got lucky.  Looking back, there are probably a dozen questions I wish I had asked early on, I’m thankful we have a great surgeon who would have been able to answer all those questions with the answers I would have been looking for.

Looking back, I would tell myself to research more what questions I should have asked.

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

 

 

Deciding Which Surgery To do…or Eeny Meeny Miny Moe

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.

Anatomy of spine

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.

hemi excision steps

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


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.

short fusion example

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


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.


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


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?