13 year old Reaghan's scoliosis surgery
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Cause
My friend, Reaghan is 13yo and preparing for scoliosis surgery. She and her mother will be traveling from Kentucky to New York City for a newer non-fusion corrective surgery called Anterior Scoliosis Correction. The following is written by her mother:
Background
In Fall 2017, during a routine (10 year old) well-visit, Reaghan’s pediatrician recommended that she see a specialist for possible scoliosis. We immediately called a renowned Spine Center in Louisville, KY, and made an appointment. At first, it was a wait and see what happens type of situation. At the beginning of 2018, Reaghan was diagnosed with adolescent idiopathic scoliosis, with a mild upper and lower thoracic curve of 17 degrees each. It was determined that Reaghan would need to be seen every 4-5 months to evaluate the progression of her curve. Reaghan also began a rigorous physical therapy program to help combat any progression. At 11 years old, late 2018, Reaghan was fitted for a custom scoliosis brace, which was incredibly uncomfortable. In August of 2019, Reaghan’s upper thoracic curve had increased to approximately 32 degrees. By February 2020, her upper thoracic curve was measuring 36 degrees. Then Covid-19 happened. Her regular scheduled appointments were cancelled. In January 2021, at 13 years old, she was finally seen again. Her upper thoracic curve had worsened to 43 degrees and her lower thoracic curve measured 27 degrees. The doctor informed us that surgical correction was needed and began speaking to us about fusion surgery.
I immediately sought additional information about scoliosis surgery. We were able to find scoliosis support groups on Facebook where we learned about an alternative surgery to fusion. There is a non-fusion surgery called Vertebral Body Tethering (VBT). Unfortunately, this surgery is for immature spines, ie children who still have a lot of growing to do. Reaghan’s x-rays show that at this time she is almost fully matured and is not a candidate for VBT. Which brought incredible distress and anger that nothing about this option had been given to us. There were tears and lots of prayer in order for her (and I) to let that go.
Thankfully, we soon started hearing about a newer non-fusion surgery called Anterior Scoliosis Correction (ASC). This is also a vertebral body tethering surgery, but invented for more mature adolescent curves, idiopathic scoliosis, and more complex curves. Due to how new this surgery is there are only a handful of surgeons in the US performing it. After asking question after question and all of the amazing support and answers from those in the FB support groups, we narrowed it down to three doctors to possibly consult with. The overwhelming majority of people suggested a specific doctor in New York City. I could not let distance or money hinder me from finding out if Reaghan was a good candidate for this surgery. Once I communicated with his office we were given a consultation date of March 2, 2021.
At the consultation, after additional x-rays, we found that Reaghan’s upper thoracic curve had worsened to 53 degrees just from January 14. The good news, though, is that the doctor stated that “she is a great candidate for ASC.” I think the entire building heard Reaghan and my collective sigh of relief!
Reasons why I have chosen ASC non-fusion surgery for Reaghan: 1) This surgery will allow for more spine mobility. She is 13 years old and very active. She is currently playing for her middle school volleyball team, enjoys softball, hiking, etc. If this will help her remain as active as possible for as long as possible, I think it is a great option. 2) By going the tethering route we leave open the option for later decisions concerning her back. If needed she will be able to retether, or at her discretion as she ages she can choose a future fusion. 3) Recovery is quicker. She will be able get back to normal within months. 4) The surgery itself offers less bleeding, lower rates of complication, and less scaring.
Cost
Insurance:
-Estimated costs associated with the surgery will include the insurance deductible that has not been met yet. My portion of that will more than likely be around $1500.
-Along with that there will be a co-pay per day in the hospital, which I have been told will be about five days, pending pain management and/or other things.
-Anesthesiology and Radiology are separate bills (which I was not fully aware of) from the hospital bill, and I am still in the process of communicating with both of those departments.
Vehicle:
-I will have to park our vehicle in a parking garage while there. We paid $90 for two day parking when we were there for the consultation. That was with a hotel discount. I just downloaded the SpotHero app to help locate parking that won’t cost an arm and a leg.
-I will be driving from Kentucky out East. I have chosen to drive instead of fly because I will be taking the boys to stay with family in Delaware. We will need to bring their school supplies as well as all of Reaghan’s necessities for after surgery. It cost ~$250 in fuel to get from Kentucky to Delaware and back. I will also need to drive into New York City at least twice. Hopefully just once before the surgery for pre-op appointments, and again nine days after hospital discharge for a follow up appointment.
-Wanda, our Honda Odyssey, has more than 220,000 miles on her. I will have to take her in before our traveling to make sure she is in shape for another long drive.
Hotel:
-Reaghan and I will have to stay in NYC before her surgery, once our Covid-19 tests are taken. Our Covid-19 tests are scheduled for Tuesday, March 30. When we went to NY for her consultation our hotel for one night was $200. Again, I will be researching this more, but that was the cheapest I found at the beginning of March. We will have to stay in a hotel again before her follow up appointment a week after hospital discharge. On our drive back to Kentucky, which is roughly an 11 hour drive, we will split it into two 5.5 hour days. However, depending on her pain level, it might take us longer. We will stop for the night somewhere in West Virginia for sure.
Other things money will go toward:
-Food
-Additional items for Reaghan not listed on the wish list.
-My Covid-19 test(s): In Kentucky it cost me $50 for the visit and another $15 for the test (comprehensive and rapid). In Delaware (if needed- it was last time) a comprehensive test cost $145/rapid test is $75 for out-of-state individuals. I have not received my bill from the hospital in NYC yet for the test I had there. So, I honestly cannot tell you how much the next one will be just yet.
Appreciation
It is humbling to me the amount of love and support Reaghan and I have received already through words of encouragement and prayers. As a single mom it is easy to think I am carrying the weight of the world on my shoulders when it comes to my three children. When even one thing happens it is enough to spin my heart in a thousand directions, but something so big as back surgery makes it almost impossible to think straight. My gratitude to those who are willing to help us through this GoFundMe is immeasurable. I truly thank you!
Any funds not spent by the family for the above mentioned needs, will be placed in a medical savings account for Reaghan for any medical or health needs in the foreseeable future.
Please note that donations are gifts for the family to receive medical services and are not considered tax deductible.
To help get the word out, you can share this link to your Facebook Timeline!
My friend, Reaghan is 13yo and preparing for scoliosis surgery. She and her mother will be traveling from Kentucky to New York City for a newer non-fusion corrective surgery called Anterior Scoliosis Correction. The following is written by her mother:
Background
In Fall 2017, during a routine (10 year old) well-visit, Reaghan’s pediatrician recommended that she see a specialist for possible scoliosis. We immediately called a renowned Spine Center in Louisville, KY, and made an appointment. At first, it was a wait and see what happens type of situation. At the beginning of 2018, Reaghan was diagnosed with adolescent idiopathic scoliosis, with a mild upper and lower thoracic curve of 17 degrees each. It was determined that Reaghan would need to be seen every 4-5 months to evaluate the progression of her curve. Reaghan also began a rigorous physical therapy program to help combat any progression. At 11 years old, late 2018, Reaghan was fitted for a custom scoliosis brace, which was incredibly uncomfortable. In August of 2019, Reaghan’s upper thoracic curve had increased to approximately 32 degrees. By February 2020, her upper thoracic curve was measuring 36 degrees. Then Covid-19 happened. Her regular scheduled appointments were cancelled. In January 2021, at 13 years old, she was finally seen again. Her upper thoracic curve had worsened to 43 degrees and her lower thoracic curve measured 27 degrees. The doctor informed us that surgical correction was needed and began speaking to us about fusion surgery.
I immediately sought additional information about scoliosis surgery. We were able to find scoliosis support groups on Facebook where we learned about an alternative surgery to fusion. There is a non-fusion surgery called Vertebral Body Tethering (VBT). Unfortunately, this surgery is for immature spines, ie children who still have a lot of growing to do. Reaghan’s x-rays show that at this time she is almost fully matured and is not a candidate for VBT. Which brought incredible distress and anger that nothing about this option had been given to us. There were tears and lots of prayer in order for her (and I) to let that go.
Thankfully, we soon started hearing about a newer non-fusion surgery called Anterior Scoliosis Correction (ASC). This is also a vertebral body tethering surgery, but invented for more mature adolescent curves, idiopathic scoliosis, and more complex curves. Due to how new this surgery is there are only a handful of surgeons in the US performing it. After asking question after question and all of the amazing support and answers from those in the FB support groups, we narrowed it down to three doctors to possibly consult with. The overwhelming majority of people suggested a specific doctor in New York City. I could not let distance or money hinder me from finding out if Reaghan was a good candidate for this surgery. Once I communicated with his office we were given a consultation date of March 2, 2021.
At the consultation, after additional x-rays, we found that Reaghan’s upper thoracic curve had worsened to 53 degrees just from January 14. The good news, though, is that the doctor stated that “she is a great candidate for ASC.” I think the entire building heard Reaghan and my collective sigh of relief!
Reasons why I have chosen ASC non-fusion surgery for Reaghan: 1) This surgery will allow for more spine mobility. She is 13 years old and very active. She is currently playing for her middle school volleyball team, enjoys softball, hiking, etc. If this will help her remain as active as possible for as long as possible, I think it is a great option. 2) By going the tethering route we leave open the option for later decisions concerning her back. If needed she will be able to retether, or at her discretion as she ages she can choose a future fusion. 3) Recovery is quicker. She will be able get back to normal within months. 4) The surgery itself offers less bleeding, lower rates of complication, and less scaring.
Cost
Insurance:
-Estimated costs associated with the surgery will include the insurance deductible that has not been met yet. My portion of that will more than likely be around $1500.
-Along with that there will be a co-pay per day in the hospital, which I have been told will be about five days, pending pain management and/or other things.
-Anesthesiology and Radiology are separate bills (which I was not fully aware of) from the hospital bill, and I am still in the process of communicating with both of those departments.
Vehicle:
-I will have to park our vehicle in a parking garage while there. We paid $90 for two day parking when we were there for the consultation. That was with a hotel discount. I just downloaded the SpotHero app to help locate parking that won’t cost an arm and a leg.
-I will be driving from Kentucky out East. I have chosen to drive instead of fly because I will be taking the boys to stay with family in Delaware. We will need to bring their school supplies as well as all of Reaghan’s necessities for after surgery. It cost ~$250 in fuel to get from Kentucky to Delaware and back. I will also need to drive into New York City at least twice. Hopefully just once before the surgery for pre-op appointments, and again nine days after hospital discharge for a follow up appointment.
-Wanda, our Honda Odyssey, has more than 220,000 miles on her. I will have to take her in before our traveling to make sure she is in shape for another long drive.
Hotel:
-Reaghan and I will have to stay in NYC before her surgery, once our Covid-19 tests are taken. Our Covid-19 tests are scheduled for Tuesday, March 30. When we went to NY for her consultation our hotel for one night was $200. Again, I will be researching this more, but that was the cheapest I found at the beginning of March. We will have to stay in a hotel again before her follow up appointment a week after hospital discharge. On our drive back to Kentucky, which is roughly an 11 hour drive, we will split it into two 5.5 hour days. However, depending on her pain level, it might take us longer. We will stop for the night somewhere in West Virginia for sure.
Other things money will go toward:
-Food
-Additional items for Reaghan not listed on the wish list.
-My Covid-19 test(s): In Kentucky it cost me $50 for the visit and another $15 for the test (comprehensive and rapid). In Delaware (if needed- it was last time) a comprehensive test cost $145/rapid test is $75 for out-of-state individuals. I have not received my bill from the hospital in NYC yet for the test I had there. So, I honestly cannot tell you how much the next one will be just yet.
Appreciation
It is humbling to me the amount of love and support Reaghan and I have received already through words of encouragement and prayers. As a single mom it is easy to think I am carrying the weight of the world on my shoulders when it comes to my three children. When even one thing happens it is enough to spin my heart in a thousand directions, but something so big as back surgery makes it almost impossible to think straight. My gratitude to those who are willing to help us through this GoFundMe is immeasurable. I truly thank you!
Any funds not spent by the family for the above mentioned needs, will be placed in a medical savings account for Reaghan for any medical or health needs in the foreseeable future.
Please note that donations are gifts for the family to receive medical services and are not considered tax deductible.
To help get the word out, you can share this link to your Facebook Timeline!
Organizer and beneficiary
Monica Fulmer Kisselbaugh
Organizer
Elizabethtown, KY
Kimberly Neal
Beneficiary
