Elita Scoliosis History

(Written in Seattle on June 28, 2010 by Djuana)

Our daughter, Elita, was diagnose scoliosis 2 (two) years ago, when her age was 10 years three months, her standing x-ray on March 25, 2008 shows that the Lippman-cobb's angle was 50 degrees of thoracic curve (Th 5-12) and 35 degrees of lumbar curve (L1-5). Those curve form the backbone of our daughter resembles the letter "S". Then we took her to a Medical Rehabilitation Doctor who has a lot of experience with scoliosis patients. While we directly met with three of her patients whom has been proved to be effective with the treatments and had recovered from scoliosis, we feel confident to our choice that it was the right place for my daughter treatment on her scoliosis. According to her (the doctor) scoliosis patients who has over 45 degrees of thoracic curve should has required surgery, but since our daughter was only 10 years old so she did not recommend surgery because her body is still growing and the operation might be done by inserting metal rods to support the spine to make stabilize the back. The Rods will need to be lengthened as the child grows and this requires multiple surgeries. Those explanations made us not to find Orthopedic Doctor, because we assumed that Orthopedic Surgeon would recommend the same whereas we didn’t agree for the surgery.

The Medical Rehabilitation Doctor later recommended our daughter to wear a brace and doing physical exercise as much as two times a week in her clinic and every day in our house.

12 April 2008 was the first time our daughter to wear the brace, and her standing x-ray within the brace showed 30 degrees of Thoracic Curve, so there was a 20 degrees of correction on the Thoracic Curve within the brace compare to not wear the brace, and the correction for the Lumbar Curve was 9 degree. So it looked very promising to us, surely should with the requirement to be disciplined on wearing the brace everyday and had the physical exercise done seriously everyday. Since then our daughter wearing brace, despite feeling hurting her ribs and hot because of brace is made of a slightly hard material, but he wore it for 20-hours a day and doing physical exercise for 30-45 minutes every day at home, in addition to do the physical exercise for an hour time twice a week in the Medical Rehabilitation Clinic using the several gymnastics equipment.

After 8 months treatment and wearing the brace showed no improvement visually, we took our daughter to Chiropractic and had 16 sessions (two times a week) for the treatment there, despite being told by The Medical Rehabilitation Doctor there was no point to get there but we still do it. So at that time our daughter treated parallel (once a week to a medical rehabilitation clinic and twice a week to the chiropractic clinic).

But one and a half years later (age 11 years 8 months), the standing position x-ray on August 23, 2009 showed the deteriorating condition of the Thoracic Curve increases 12 degrees to be 62 degrees and the Lumbar Curve increased 6 degrees to be 41 degrees and within the brace the x -ray shows 53 degrees of Thoracic Curve and 35 degrees of Lumbar Curve.

Since then we look for another alternative, but not to the Orthopedic Doctor because we assumed it is definitely made to the operation, the alternative that we were looking for was how to heal without surgery.

Every night I prayed for our daughter healing and every Saturday and Sunday I searched on the Internet, finally I got a book entitled "Three-Dimensional Treatment for Scoliosis" written by Christa Lehnert-Schroth daughter of Katharina Schroth, who is the developer of Schroth Method Exercise, namely gymnastics / exercise which was developed specifically for people with scoliosis. Then we bought the book in the U.S. through Amazon.com, the book had been translated into English. After learning from the book, I found that this method looks very promising but due to my daughter should stay in Germany for at least three months so we were planning to wait until our daughter graduated from 6th grade primary school exam, which means to wait one more year.

While waiting I looked for another alternative again, endlessly every night I pray to Heavenly Father to lead us the way on our daughter healing, I finally found a clinic that handles scoliosis which is a branch office of Singapore located 1.5 hours from where we lived. The Clinic is handled by experts from abroad. For eight months our daughter being treated by using variety of medical equipment such as Electro Muscle Stimulation (EMS) and ultrasound and her bone was twisted to repair spine position, various exercises carried out and every night while praying I gave massage to her back in a manner that was taught by physician to loosen up her muscles so that not too stiff. Because she felt tired easily and feel sore when the muscle is too stiff. From twice a week until once a week we took her to the treatment, but the results were not satisfactory.

Beginning in January 2010 for the umpteenth time I searched again on the Internet to see if I can find a way of healing scoliosis without surgery. I hoped to find Schroth Method Exercise in English-speaking countries and a really effective brace for scoliosis. We strongly made a decision at the time of May / June after the school holidays we will bring our daughter to seek help abroad, but we still did not expect to have surgery, as when searching the Internet I found a lot of stories that told how the pain was after surgery and how big the risk of spinal fusion / surgery and the failure of surgery might result a total paralysis. At that moment it was probably because what I search was the solution without surgery that cause me couldn’t encounter the best way for severe scoliosis is Spinal Fusion.

Finally I found out there was a clinic in America treats scoliosis with Schroth Method Exercises  and brace specially developed to co-exist with the Schroth Method Exercise, named Rigo System Cheneau Brace, then I send an email to them where we knew we must stay a minimum of one month there for Schroth Method training and fitting the brace, beside we had to go back again every few months to fit in the brace. At my request, they recommended me to go to Australia for treatment with the Schroth Method Exercises with consideration that Australia is closer than America, but after having some emails with the Australian Therapists I was informed that there was no RSC brace in Australia. Then the Australian Therapist recommended me to Dr. Manuel Rigo in Spain, a professor who taught Schroth Method to him and to American Therapist at the Scoliosis Rehab as well. Dr. Rigo runs Barcelona Schroth School to teach the method in which the student has opened clinic in America and in Australia and possibly in other countries (but far as I know no one in Indonesia or Singapore and Malaysia). And Dr Rigo is the one who developed the RSC brace.

Every night I still continue to pray: "Lord Jesus, our Heavenly Father, please touch and heal my daughter and show me the way how to make my daughter heal …”

After I pray for such a long time finally I got my answer from my prayer, early in the morning on February 10th 2010 7:00 am, I met a friend at the hospital when I took the results of x-rays to be sent to Dr. Rigo in Spain. He recalled that his friend who is also our friend’s son had a scoliosis surgery 10 years ago in Seattle. Well, now God truly answered my prayers by giving us two choices, if the surgery would be the choice then call my friends for further information or went to Spain for the choice of Schroth Method Exercise and RSC Brace.

After we contacted our friends, we found out that the doctor who operated on their son 10 years ago named Dr. Theodore A Wagner, they still kept his business card but they forgot which hospital the surgery took place at that moment, they only remembered a hospital in Seattle. I tried searching on the Internet under the name of the Foundation listed on business cards but could not find the name of the Foundation. (Probably the name had been changed because it was 10 years ago). Two days (Saturday and Sunday) I searched and searched on the Internet by using a very slow computer's internet connection that frequently interrupted, so many times a web page problem could not shows any pages. It was not too difficult to find the doctor’s profile, but it was very takes time to find his email address, however I finally found Dr. Theodore A Wagner’s email address. I truly felt that God had led me to successfully find the email address of Dr. Wagner, because currently I was trying to find back the website which stated the email address but I had not managed to find it. It was very important that I could find his email address otherwise it would be very difficult to have a conversation with him through the phone due to the different time zone between Seattle and Jakarta beside it was not easy to have an English conversation at phone.

Then in one hand, I sent our daughter x-ray via email to Dr. Rigo in Spain on the other hand to Dr. Wagner in Seattle via email as well.

After examining our daughter’s x-ray, Dr Manuel Rigo gave us a recommendation to have a surgery but in case surgery was contraindicated for any reason or we though we need time to make decision then he would suggest immediate bracing and further specific exercises according to their Barcelona-Schroth school. He also told us that he could not promise anything sure but he could try to stabilize the curve in order to postpone the decision about operation in a way that in longer time the girl can decide by her selves what to do, whether to leave with this non operated scoliosis or to go under surgery.

At this time we were really confuse, what decisions should we make, Operation or go to Spain? There were so many considerations and concerns for both.

In the middle of being confuse and not knowing what to decide than we prayed to God:

" Lord Jesus, our Heavenly Father please, help us to make the best decision for our child, do not make us to decide by our own because we were really confused and do not know which one is the best for our daughter, therefore please open the way for us and lead us clearly and precisely, Surgery or Schroth Method ? Please lead us to the path that we are sure that it is the path you guide us through it …”

Finally we got a very definite answer from the wife of my friend whose child had scoliosis surgery 10 years ago in Seattle by Dr. Theodore A Wagner. She assured me that we do not have to worry about anything for the surgery performed by Dr Wagner, who was a very expert in scoliosis surgery ten years ago and should have been more than expert nowadays. Beside Dr Wagner is a very compassionate man and extraordinary attention to patient and patient’s family and his teams are also very experts in dealing with scoliosis patient after surgery. She was then told us that although the surgery carried out for five hours, in the 3rd day post surgery her son had walked already and only stayed in hospital for five days, a week after leaving the hospital he could walk to see the exhibition. Now her son is 23 years old and grew tall and active in various sports. And she told us how independent the child after the surgery which does not need to wear a very uncomfortable brace and no longer need to have a troublesome physical exercise every day. She also told how the surgery in Indonesia should be done many times and sometime the rod could became bend and broken and there was a friend of them who died at the age of thirties due to her scoliosis already reached to more than 100 degrees because the curve spine pressing her heart.

Thus, it was clear to us that God wanted us to Seattle for surgery by Dr Theodore A Wagner. But there were still so many constraints we had to face so that this surgery can be achieved. Therefore I still prayed every night, now my prayer was "Lord, if you really want us to have our daughter operated by Dr. Wagner then please open the road for us so that we are capable and able to do so, help us to overcome all of the obstacles that we are facing …”. In fact there were so many obstacles we were facing at that time, i.e. financially, my own health, my work, our daughter school and my mother was lying in a hospital.

At that time the results of x-ray dated 6 February 2010, showing the curve degree increases again to 11 degrees so had reached to 73 degrees of Thoracic Curve, while the lumbar curve reduced one degree to be 40 degrees, so within 6 months the curve progression was 11 degrees, which means 2 degrees per month on the average. That was why Dr Rigo wanted us to come to Spain for bracing as soon as possible and later in the summer for rehabilitation in case we refuse to have a surgery. In fact the progression of the curve is very quick, when x-ray was taken on 13 May 2010 in Seattle Children’s Hospital, the Thoracic curve had reached to 88 degrees.

Emailing with Dr. Wagner did not go smoothly, I sometimes had to wait for a week to get a reply on my email, understood that Dr. Wagner was extremely busy. And all of my questions about the scoliosis surgery none was answered, he just said that all questions would be answered when we were in Seattle and he only asked when we wanted to schedule a surgery. This made us feeling stress, how we could be sure to go all the way to Seattle for scoliosis surgery or spinal fusion without knowing anything about the surgery / spinal fusion. Fortunately, the Lord returns to guide us, the Lord showed me an article on the Internet, written by a 12 years old girl who had a spinal fusion at the University of Iowa Children's Hospital on May 1991, she told her spinal fusion experience and her 52 questions that has been equipped with the answer regarding her doubts and concern about scoliosis surgery, and after the child became an adult, she returned to continue her writings that told how happy she was after surgery. The article was very helpful to calm us and especially to our daughter. In fact most of her question was the question that we want to get the answer about.

That article can be read on this site . Beside I also found in the internet an article regarding scoliosis spinal fusion (surgery) written by Dr. Kit M Song M.D. at this site  and another article written by Dr. Theodore A Wagner at this site ,besides Dr. Wally Krengel, Chief, spine, of the Children's Hospital, sent me some literature on scoliosis usually given to the patient who will conduct scoliosis at Children's Hospital. So all of the questions about scoliosis surgery named as spinal fusion was now clear and had some picture to us.

Because I was so grateful that able to obtain all the information on the Internet made me promise I will as well write all my experiences into internet with the hope that my writing will give some information to the scoliosis patients in the future.

When the answer from Dr. Wagner was not clear whether he was willing to operate on our daughter in early May, my Mom was hospitalized on March 6, 2010 in which my mother eventually died in hospital on 10 April 2010 after lying down for one month in the hospital.

Thus in February, March and April 2010 was really a struggle of a very heavy month for me, besides the problem of my daughter and my mom, more over the problems in the office that was at the peak of a busy and a lot of problems occur that must be handled and settled with full concentration and focus. Every day I came to the office like a man dazed, forgetful no concentration, very quickly offended and always want to cry, difficulty sleeping on night, well, it came to the point that my boss was also angry at me.

Our daughter also felt very depressed, besides he had to worry about the operation, he also must be faced with a situation unlikely to pass the sixth grade because of graduation requirements must follow the “UAS” (Final School Examination). But thanks to the wise decision of the Principal and Teachers my child was finally released from these requirements with the consideration that her condition was likely could not postpone the surgery any longer.

Every night before bed I never forgot to pray to God asking for giving strength to my whole family, especially to me not to collapse, because my daughter and my mother also my jobs needs me. There were 56 emails I received from the date of 11 February 2010 until the last day before leaving for Seattle Dated May 9, 2010, and the email I sent them were 71 emails. Those emails were the communication between me and Dr. Wagner, Dr. Krengel and staffs of various department of  Seattle Children's Hospital and many of those emails were written in the middle of the night because of the time difference between Jakarta and Seattle. Fortunately the problem of a plane ticket, apartments and travel insurance as well as everything needed for the Seattle had been taken care by my husband.

Finally, one by one the problem solved and my beloved mother died on 10 April 2010 before we leave to Seattle, so we can go to Seattle on May 9th 2010 without any concern on my mother illness.

God’s help not stop only till here, God still with us, because at the time in email, our rented apartment Manager had planned to go to vacation so we would only met with her staff who hold the key to apartment, but there was some reasons that made her delay the vacation. This sound like the delay was arranged by God especially to wait for our arrival at Seattle because she eventually left for the vacation one day after our arrival, so we had time to meet her who was very kind to serve us properly and show us the environment around the apartment by her car, she showed us where to eat and places to shop for everyday needs.

Beside that when we were at the hospital, our interpreter was a former priest who was very kind and had been willing to lend us some cooking device and also took us shopping for vegetables in the Asian market, and thanks to the interpreter who got us acquaintance with GKI Seattle Church, and here we may reconcilable with kind hearted God's servants and members of the church, so many church members came visiting us at the hospital with a lot of food and of course pray for us too.

It Is beyond our expectation that the Lord has introduced us to a couple husband and wife of the church member who were very much helped us, they were willing to lend us some sleeping device, even every Saturday they willing to spent their precious time to take us shopping for daily necessities and also take us around Seattle, besides God also sent our daughter School Headmaster’s brother and brother-in-law who we newly met in Seattle to help us, they also had been willing to spend their precious time every Wednesday to take us sightseeing and shopping and also lend us some eating device. With these situation we are not lonely living in the city of Seattle for two months. What will we become if no one helps us living in the city of Seattle without a car.

In addition to the prayer we delivered every night before bed, there were so many prayers being said  by our family member, teachers and classmates of our children, every morning they brought the morning prayer for the heal of our daughter and prayed so that our daughter be strengthened and not be afraid to face surgery who feel scared and worried. Our siblings and our friends also brought a lot of prayers for us, some brought the pray in their church and some by individually.

I believe that it was cause by so many prayers from those people that we can arrived in Seattle with a very successful surgery results and extraordinary meet with all the people who are ready to help us. This surgery brings a very successful outcome so that the doctor himself felt very proud of it. Currently the spine of our daughter is almost straight, but there is a little curvature in the thoracic due to balance on her shoulder. Actually scoliosis surgery is risky and scary, but if handled by a good surgeon and a skillful team of experts then it is absolutely not scary.

Our daughter underwent T2-L3 posterior spinal fusion on May 20, 2010 with the diagnosis of Type 5 Lenke scoliosis (severe thoracic curve) at Seattle Children Hospital by Dr Theodore A Wagner. Our daughter was brought to the operating room and given a general anesthetic at 13:00 o’clock, operation time took six hours, incision started on 14:15 and the procedure completed on 20:15 but our daughter was taken to the patient room at around 23:00. The next day at 10:00 a.m. our daughter had been trained to sit on the edge of the bed for about 5 minutes, on day two had got out of bed to sit in a chair for about 45 minutes, on day three she already been able to get up and down the bed for 3 times and sat in a chair for several hours, day 4 had learned to walk in the pathway outside the patient room and day five had been discharged from the hospital, day 7 was able to walk about 50 meters outside apartment and lie to the right and left side of her sleeping position without assistance and most amazing things that on day 14 after the spinal fusion my daughter was not taking any pain medicines nor any drug and she could walk for about 2.2 km (1.4 Miles). As a matter of fact our daughter spinal fusion is a very big and complicated surgery procedures, spinal fixation hardware has been placed from upper thoracic to lumbar spine, 25 pieces polyaxial titanium screws that were 35 mm long each were tapped to her spine. Those screws are tied together with an alloy rod and the cartilage and joints between the vertebrae was removed and placed by bone graft (extra bone) from the bone bank. Dr. Wagner said that the parts of the spine that are fused will stop growing but the child still growing from the other parts that are not fused, meaning that she still can growth, able to do all of the sport she likes, bending her body, able to be pregnant and delivery children. Those are really very amazing, that shows to us how wonderful that God can create such people that can do all of this.

We are very grateful to Dr Theodore A Wagner, who had given our daughter opportunity to come to Seattle Children’s Hospital to be operated by him and also to the entire team of  Seattle Children's Hospital which had been carefully and patiently take care of our daughter very well with their respective expertise. Dr Wagner explained all of our questions in details and he is exactly the man described by my friend who had her son operated 10 year ago. He is a fatherly figure who really is a compassionate man, patient and very friendly, he also can feel what our feeling while our daughter is on the surgery. Recalled that a serine calls for doctors that indicated someone was in danger in the recovery room when our daughter was on the same recovery room, he immediately came out from the recovery room that far enough from our waiting room, to tell us that was not our daughter which made me cried.

One thing that makes us extremely satisfied and grateful when we heard our daughter was saying that right now (1 month post surgery) she was more comfortable and fresher than before the surgery and importantly our daughter said she do not feel anything interfere with her movements, even she said it was like no surgery at all.

Before I am finishing my article, I want to say that the city of Seattle is a city that is much cooler than the city of Jakarta, but the warmth of its people make us feel warm in Seattle so that it does not seem long for us to stay in Seattle for over two months and soon we will return to Indonesia..

We hope the Lord will continue to work and blessing our daughter to pass the recovering period of six-month, because this period is a vulnerable time for healing our daughter spine which outside she had recovered entirely but inside should wait for about 4 to 6 months. We surely expect that Lord would also accompany us on the way back to Jakarta.

Our whole family is very grateful to God who has blessed us and guard our family, especially to our daughter, but we do not know how to repay the kindness of people who have helped us both in Seattle and in Indonesia. All we can do is to pray for them that God will also bless, lead and guard all those people who have helped us and I hope my writing can be useful for patients suffering from scoliosis that requires information about scoliosis. Amen.

THE END (^.^) (^.^)