Surgery Day- August 25, 2015

Tuesday, August 25th, 2015 5:30am
We arrived at the hospital for check-in. We have been to this hospital for pre-op check in numerous times by now over the last couple of years so it all felt very familiar and …comfortable. We weren’t walking into all of this as newbies. That really helped. It helped with my emotions, fears, and expectations as well as Matt’s and even Nora’s. Nora knew we were here because her doctor was going to ‘fix her back’. She knew we weren’t getting a cast but she didn’t fully know what all was going on either. She was comfortable and even relaxed during all the pre-op stuff like getting height, weight, blood pressure, etc. We sat in the pre-op room and waited. I felt like we were there for a casting which was probably good. I wasn’t fearful or extremely nervous at this point. Like always, interns, fellows, nurses, child life, anesthesia team, our surgeon’s team and even our surgeon were in and out explaining little things here and there and asking typical questions.

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We meet with the anesthesiologist weeks before to figure out our operative plan. Nora has not done well post-op with anesthesia before so this was a big concern for us. We decided on giving her a small dose of valium in pre-op and decided against versed. Nora was relaxed which was really helpful. For this surgery, we could not go back with her into the OR with her like we had before for castings. We were concerned this would upset her so the Child Life Specialist decided to let her take an ipad into the OR with her that was playing Curious George.

Suddenly it was time to go, that part seemed to happen so fast. As the team picked her up and gave her the ipad she immediately panicked, started crying and screaming. The valium was not doing it’s job anymore. She was begging not to go and for us to come with her. I had to dig deep to try and barely hold it together while I hugged her and kissed her sweet scared face. At that moment, I wanted to grab her and hold on to her so tight and just run. But I knew I couldn’t do that. I told her it was going to be ok and that daddy and I were coming and would be right behind her. We would see her in the room in just a minute. I had to lie to try and calm her. It was awful. I hated lying like that. Once she was gone, the tears just poured out and I sobbed a little. I was trying to be brave myself and hold it in but couldn’t. Dr. Garg was in the pre-op room with us when all of this happened, he looked at me and said, “Jackie she’s not going to remember this” he said it twice trying to reassure me. I knew this, but it was still hard. I pulled it together and we all talked for another minute or two and then we walked out to the waiting room.418

There is a spot outside of the actual waiting room, a lounge area, that looks into the waiting room and also has a balcony of sorts that looks down to the hospital’s first floor. This is ALWAYS where we sit when Nora has been in the OR. It’s MY spot. That day I was obsessed about this spot and worried someone else was going to be sitting there. It was as if someone else being there would change everything. What can I say, I’m a Chicago Cubs baseball fan, superstition is a part of who I am. I talked about my concern of someone else being there so much Matt just laughed at me because my obsession was ridiculous. I knew it was too.  But wouldn’t you know, as soon as we walked out there was couple was sitting there, in my spot. I just looked at Matt and he laughed.  We could still sit in the same area but not the same seats. I didn’t like this.

Matt and I decided to go downstairs and get coffees. Getting in the elevator I suddenly felt so exhausted and it was only 7:30 in the morning. It was going to be a long day. I got my fancy latte and we headed back upstairs. When we got back, OUR spot was open. The couple was no longer there. I immediately grabbed all of our things and made a bee line for MY spot. I suddenly felt much better.

428We kept ourselves busy for awhile with facebook and goofy stories online but that was slowly fading fast. I couldn’t read a book; I haven’t read an actual book in almost 3 years because I’m always researching. Now was not the time to try and pick up the latest bestselling novel. I had a pair of rosary beads in an old tiny leather case. They were my grandmothers. I’ve always felt comfort just holding the little pouch in my hand and that’s what I did that morning. I just held the pouch for hours and would often silently recite my favorite prayer, The Memoare. At one point I found my way down to the hospital’s chapel and just sat in there by myself silently for awhile. I thought about how many people had been in this room before me, with much bigger prayers and intentions for very very ill children. And so I prayed for all those who had entered that room before me and all those who would after me.

Only a few hours had passed by now and we were restless again. A nurses in the OR called us every hour to give us updates which were nice but the information given was generally pretty basic. Matt and I decided to go get more coffee and once downstairs we decided to go to the blood donation center. Matt was going to donate. We didn’t think it was a good idea for both of us to donate at the same time and I had eaten anything yet that day. I knew I should have but I just couldn’t stomach the idea of food for once in my life. As Matt was donating, I got a call from the OR nurse saying they would be finishing up soon and our surgeon would be out to see us. I had to go tell Matt to get his heart racing and fill up that donation bag quickly, jokingly of course. I headed back and Matt was soon behind me. When we told Matt’s parents Matt was donating blood, my father-in-law decided to go down and donate too. I’m very proud of both of them for giving back and helping save lives. After all, someone with the same generosity would help save Nora in the days ahead, when she needed a blood transfusion.429

About forty minutes later Dr. Garg came out to speak to Matt and me, he immediately said everything went really well. He said she lost more blood than they anticipated but still in the normal range for what they expect for that surgery. He said they would just keep an eye on her. Then he handed me the piece of paper he had in his hand. It was a copy of her x-ray that was taken in the OR after all the hardware was in place. I became overwhelmed with emotion. Never had we ever seen her spine look so straight. I looked past the hardware and just at the straightness of it all. I was overjoyed.  Dr. Garg went on to say he got better correction than he originally anticipated which was very obvious from the xray. The heavy weight we had been carrying around seemed to lift right then and there. I couldn’t help but lunge over and hug our surgeon and thank him. We talked for a few more minutes and he said we would probably be able to see her in an hour or so.

I was suddenly excited. It was a weird feeling to have at that moment. I never would have thought I’d feel excited immediately after my daughter had major surgery. Soon they called us back to post-op. Then I started to get nervous knowing she has not handled anesthesia well in the past. But when we turned the corner and saw her in her bed awake and not crying and even bigger relief set in.

Her face was swollen, they told us this would happen. She was laying face-down for hours during her surgery, the face is naturally going to swell. Nora was alert but sleepy and soon she was itchy and I mean really itchy. The side effects from the morphine can cause itchiness. She had all these IV’s in her hands but she kept rubbing her face because it itched so much. Our nurse wanted us to try and stop her from itching so much because she was going to scratch her already swollen and tender face with the IV’s poking her. That wasn’t easy at all, she was so itchy, we tried gently rubbing her face with a wet cloth but it seemed the itching was getting worse and our nurse asked a doctor to get a drug to counteract the itching. It took forever it seemed to get the order in for that. In the meantime, Nora had some juice and was watching Curious George and was dosing a little here and there.

432About an hour in post-op we were still struggling with the itching and keeping her comfortable now. Poor Matt got a little lightheaded because he didn’t really get to eat anything substantial enough after giving blood. So we had to get him a juice and cookie too. Thankfully he was fine after that.

By now our nurse wanted Nora to have this medicine that was supposed to counteract with the itching given to her on a slow IV drip. The single dose wasn’t really working. We were beginning to get a little frustrated too. This required our anesthesiologist to come by and see her and authorize the drug. He talked to us a little about the drug but to be honest it’s such a blur, at the time I just wanted her to be comfortable and for us to be able to move up to our room, I don’t even remember what he told us.

Also during this time, Nora’s oxygen saturations were fluctuating a lot. Not uncommon but they needed to increase her oxygen, she didn’t like that either. That was only the beginning too.

Once we were settled into her room and the IV anti-itch meds were going on a drip, she was much better. She had some discomfort early on but was drinking juice and water well. She also had two Popsicles and enjoyed a sucker. She could not make a decision for the life of her though. We brought easily 20 different DVDs and had the tablet loaded up with movies and shows, of course she didn’t want to watch any of those. She finally settled on Charlotte’s Web. We ended up watching that three or four times on repeat that day. That movie will forever be linked in my mind with Nora’s surgery.

She was incredibly tired but fought sleep like nothing I’ve ever seen. Her nurse that day said she had never seen a little one fight sleep so much either. We had to keep shifting her position in bed every couple of hours, she would be on her back or moved to her sides. She had this nice pad under her back that was connected to a cooler that sat under her bed. That cooler was an ice machine. It was loaded up with water and ice and it plugged and kept the ice pack under her back cold for hours at a time, so helpful. She had a folly in and also pressure cuffs on her calves to prevent blood clots. We still continued to struggle with her oxygen levels. They initially wanted her off oxygen around 5:00pm that day. By 8:00pm we had the oxygen canullas taped to her cheeks to hold it in place.437

Nora didn’t want Matt or me to leave the room, she freaked out a little when Matt left to go get water or something. It was understandable and heartbreaking at the same time. She finally fell asleep around 9:00 that night and one of us had to be in the bed with her. But no one really sleeps in the hospital, it seems like someone was coming in every couple of hours for this or that. Nora was insistent I lay one way in the bed with her and I had to be looking at her. She got mad if I closed my eyes, this was around 3:00am. It was a struggle; in essence, Matt and I had been up for 22 hours almost. And the pulse ox monitor would beep every time her levels dropped below 85. The machine was going off a lot. The low oxygen levels could have been from the morphine IV and the injection she had during her surgery and the valium she had been given for muscle spasms. Those drugs can lower the respiratory system. It could also be because of the blood loss she had.

Our first night was a little rough, at one point her pain was really bothering her and she was due or ready to have more pain meds. We had beeped the nurse and asked for it but it was an hour before she came in. She didn’t want to give the pain meds either which I didn’t understand. We were not a fan of this nurse, her communication skills were not the greatest. I found I had to take the lead and ask for things that I would have thought would have been brought up by her initially. The rest of the nurses were wonderful and very very helpful.

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Day two of recovery coming soon….

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?