Pre-op Visit

We left for St. Louis on Wednesday, December 11th after school (a 5 1/2 hour drive from our home) because our first appointment on the 12th was set at 8 am.  We had a productive, long,  and busy day on December 12th.  At 8 am Danielle had blood drawn. We then walked to another part of the hospital for pre-op x-rays and what is called a Dier scan.  At 10 am she went for a Pulmonary Function Test to check the function of her lungs.

PFT testing

At 12 pm she had a CPAP appointment at another part of the hospital.  Here we met with the anesthesiologist. They told us many things to expect.. Here are 2 of the many important points to remember:   1. Danielle will be VERY emotional after surgery from the anesthetics. She may be giddy with laughter at one moment then upset and teary the next.  2. DO NOT look in the mirror for 2 days after surgery.  She will be laying on her tummy with her head slightly tilted down and her face will be very swollen and puffy.  The anesthesiologist said that girls always want to see and then always end up bawling.  So STAY AWAY from the mirror for a couple of days. They also told us that this is a major surgery and that we really have an amazing doctor!

We then went for an MRI at 2 pm, and thank goodness Danielle asked how long it would take because I really had no idea.  The technician told her 45 minutes to an hour.  I was given earplugs and sat in the corner. Good thing Danielle is not claustrophobic - she did a great job. After the MRI, we were scheduled to see Dr. Lenke at 4:30.  

At our visit with Dr. Lenke we once again discussed the kyphosis. He was a bit confused because in the x-ray Danielle had taken that morning, it showed her kyphosis had gone down 20 degrees and was now around 45 degrees. He said he had never seen it decrease that much in a matter of one month. He then asked Danielle what she had been doing or if something happened to cause it to straighten up. She didn't remember anything. Then he said, "The only thing I can think of is if she might have been leaning back when taking the x-ray." Then Danielle giggled and said, "Well I did stand up really straight when taking the x-ray which I didn't do last time. I didn't even think about it!" Then by just looking at her posture and remembering the x-rays from November, he knew it would be best to fix it but it was up to us. We all agreed that it would be best to address everything right now.  Dr. Lenke said that her incision would be longer and that surgery would take a bit longer, 5-6 hours. Dr. Lenke will be operating on Danielle's back from T4 to L2. We left the hospital that evening around 6:30pm. What a long day!

I would like to say that each and every person we talked to at St. Louis Children's hospital were kind, caring, informative, and helpful.  When we were trying to get from place to place on December 12th, if we looked the least bit lost someone would ask if we needed help getting somewhere. Dr. Lenke's team have all been kind, caring and helpful as well.  Talking with us patiently and addressing our questions when we visited and when I have called.  Dr. Lenke has a group of doctors following him most of the time.  These are not interns but doctors that have come to observe his techniques.  He has also developed some of the tools he uses in surgery.  He is so compassionate and caring.  I hate that Danielle's scoliosis has come to this point but I am so pleased that we found Dr. Lenke.  He is amazing.  We were told that many times throughout the day in different areas of the hospital. It has made things so much easier on us and even Danielle. 

Please keep Danielle in your prayers.  We pray that surgery is a success and her recovery goes well.  Also, please pray for Dr. Lenke and his team of doctors and nurses during her surgery and time in the hospital. Also, so they can continue to heal and help so many people.

A Trip to St. Louis

We arrived at St. Louis Children's hospital on November 14th for a 2 pm appointment for more x-rays. We were to see Dr. Lenke at 3:30.  After getting x-rays, we were waiting in Dr. Lenke's office and Namoi came to tell us that he had a VERY complicated surgery that morning. He was still in surgery and they were not sure when we would see the doctor but we would be delayed at least 2 hours (We were just glad they didn't send us home!). She also asked for the x-rays from KU.  Apparently, they had only received the doctor's report and no x-rays.  ANOTHER MIRACLE....... Dr. Lenke accepted Danielle's case without even seeing her x-rays! God is so GOOD!

Putting on a hospital gown for the first time and ready for x-rays! She will definitely have to get used to this.

We saw Dr. Lenke at around 6 pm.  After viewing Danielle's x-rays he informed us that her curve was now at 60 degrees.  Not only had it increased 8 degrees since April, we found out she also has kyphosis in her upper back.  Kyphosis is a curve in the thoracic or upper part of the spine.  The most common symptoms with abnormal kyphosis are the appearance of poor posture with a hump appearance that can cause muscle fatigue and back pain.  Dr. Lenke then told us about he surgery he would perform. He would make an incision down the center of Danielle's back.  Making an incision down the center of the back (and not through the side/ribs) is less risky and patients heal more quickly.  He would scrape some of her spine and use a cadaver bone.  He will straighten the curve by using the scraped bone fragments and the cadaver bone. He will then use rods and screws.  The rods and screws will be in place permanently and serve as a brace. During the healing process the cadaver bone and her bone fragments will fuse her spine.  If he corrects the kyphosis he will have to go up higher on her spine.  At this point he wasn't sure if he would address the kyphosis or not?  He wanted to take a closer look at all her x-rays.  He thought that correcting only the curve might make the kyphosis worse and the rods would stop right in the center of her kyphosis causing her spine to just bend over the rods. Correcting the kyphosis will not limit her mobility more than if he were to not correct it, it would just be a longer surgery and longer recovery time.  Surgery will last anywhere from 5-6 hours.  Danielle will spend 1-2 days in ICU and another 5-6 days in the hospital.  She will then be home for 4-6 weeks before returning to school.  Dr. Lenke told Danielle that for 4 weeks after surgery she will wonder why on earth she did this. She will be in a tremendous amount of pain (a much different type of pain she is in now) and recovery will be slow and steady. This is a major surgery. For the first four months she is to do no bending, lifting, twisting or squatting. She is to lift no more than 10 pounds for 4 to 6 months.  After meeting with the doctor, we met with Melissa Pape, BSN, RN to schedule surgery.  We were given 4 dates to go home and discuss and get back with them within a week.  Our four dates were February 13, March 12, May 20, or June 3, 2014.  We left the hospital at 8pm.  Once again we had much to discuss and think about.



Dr. Lawerence Lenke M.D. practices at Washington University in St. Louis and is an Orthopedic Surgeon  for St. Louis Children's Hospital and does adult surgery at Barnes-Jewish Hospital.  He is an AMAZING doctor!  You can find out more information about him and his team at this link:
 spinal-deformity-surgeon.com/

I have also provided a link on the side of my blog!

Our Decision

After much discussion, and Danielle talking to friends and looking at posts on YouTube of other girls who have gone through a similar surgery, she finally decided the sooner the better. I called Melissa on November 19th and told her we would take the February 13th date.  I also asked that if anything opened up sooner we would take it.  Dr. Lenke deals with some major spinal deformities and I hated to even ask to be moved up to an earlier date, seeing the needs of others in the waiting room.  Once again our prayers were answered..... Melissa called us just before Thanksgiving and told us that they had an opening on January 7th.  So.... we are set for surgery on January 7th.  We set up appointments for pre-op and lots of tests on December 12th. We would see Dr. Lenke again that day.

Answered Prayers!!

It is late October 2013 and Danielle's back is hurting all the time.  Doug has asked if I contacted the doctor he found through researching the internet in St.Louis Missouri,  Dr. Lawerence Lenke?  I did contact them and his assistant told me to send information and Dr. Lenke would look over x-rays and existing doctor notes and then he would either accept or decline Danielle's case.  After acceptance there would be a 4 to 6 month wait to get an appointment with Dr. Lenke.  Dr. Lenke is ranked as one of the top 10 orthopedic doctors in the NATION.  So I'm thinking this isn't going to happen...... we really don't have 6 months to wait for surgery.  Danielle is planning to go off to college in the fall and is interested in joining a sorority.  So I basically gave up on being able to see Dr. Lenke and did not send Danielle's records to his office.  Doug was very disappointed that I gave up on Dr. Lenke so on October 21st, I called Dr. Burton's office with the University of Kansas (the last specialist we saw in April) and asked that they send all of Dr. Burton's notes and x-rays to Dr. Lenke's office.  I called Dr.Lenke's office on the 24th to see if they had received any information.  They had not.  On the 28th of October I called again and they had received her files and they would get back to me.  In the meantime I called Dr. Burton's office to see if I could set up an appointment to discuss surgery in January for Danielle.  I began to pray the rosary every night waiting for a miracle to happen.  Would we get in to see Dr. Lenke, or would Dr. Burton be our answer? Whatever the answer, I would accept it.  On Tuesday November 12 Naomi  from Dr. Lenke's office called.........."I have good news for you!  First of all Dr. Lenke has looked over Danielle's files and he has accepted her as a patient. Second......we have had a cancellation on Thursday at 3:30.  Can you be here in St. Louis on Thursday?" My response....."This Thursday the 14th?  YES!"  Naomi then proceeded to tell me that cancellations are unheard of with Dr. Lenke because people wait so long to see him.  So miracle #1 - Dr. Lenke accepted Danielle's case. Miracle #2 - we get to see him in 2 days.  Miracle #3 - out of all the cases that he had to chose from they chose to call us!  WOW!  I was totally overwhelmed.  Naomi did tell us to be sure to bring our x-rays from KU down.  I didn't think a thing about it at the time.

Where it all Began

This is the story of my daughter Danielle's battle with scoliosis.  Danielle was diagnosed with scoliosis in the fall of 2010.  She has one thoracic curve and it began with a curve of 36 degrees. Surgery is typically recommended for curves ranging from 40-45 degrees.  So we visited Children's Mercy in Kansas City, Missouri.  They recommended bracing, but we chose not to.

We found a doctor in Green Bay, Wisconsin (a mere 12 hour drive away) at the Posture and Spine Care Center.  There we tried alternative strategies to treat Danielle's scoliosis.  We used weights and balances and traction.  We were treated at this center for 2 years.  At the beginning, these treatments helped and her curve was reduced to 19 degrees.  At our first visit we were there for 2 full weeks.  She did treatments all day long from 8 am to 4:30 pm with a 2 hour lunch break.  Once the 2 weeks were over, we were sent home with weights and a traction chair which she did 2-3 times daily (30 minutes in the chair and 20 minutes with the weights). We then returned in July for a week long visit.  Then again in the fall of 2011 for 4 days. When we returned in May of 2012 her curve had became very aggressive and considerably worse.  She was experiencing a tremendous amount of pain.  We returned to Green Bay in May, August and then again for the last time in November of 2012.  Danielle's pain continued and I could see that her curve was continuing to get worse even with the daily exercises prescribed by the doctor in Green Bay.

The night before treatments in Green Bay

 

4-11 The traction chair in Green Bay

1-12 At home weights

Danielle in the traction chair at home

10-10-11 x-ray (back view)

Summer 2012 (notice her uneven shoulders and waist band)

Feb. 2012 Danielle's 16th birthday

5-25-12 x-ray (back view)

11-13-12 x-ray (back view)

On April 11, 2013 we chose to see Dr. Douglas Burton at the University of Kansas Hospital Comprehensive Spine Center.  Danielle's curve had increased to 51 degrees.  Dr. Burton said that Danielle basically had 2 choices at this point......she could live with the idopathic scoliosis curve (curve from an unknown cause) for the rest of her life or she could have surgery.  He stated that her curve would probably increase 1-2 degrees per year for the rest of her life. He also stated that surgery may or may not decrease her back pain. If we chose the path of surgery she would be out of sports for a year.  Dr. Burton stated that he would make an incision on her side and go to the back through the rib cage.  Surgery would take 6-8 hours.  WOW! We left with a lot to think about.   Her dad continued to search on the computer for different docotors. We thought we should get another opinion.  In May, he found a doctor in Austin, Texas who does a non-invasive scoliosis surgery with 3 small incisions.  I thought my prayers were answered!! This would require less recovery time because fewer muscles are involved.  This doctor looked at Danielle's x-rays and sadly told us she was not a candidate for his surgery because of the location of the curve.

KC x-ray 4-11-13 (front view)

Danielle has what I call a high tolerance for pain.  She really doesn't complain about her back hurting too much.  She was beginning to take ibuprofen and tylenol more often. Neither really did much to relieve her pain.  Danielle has played travel softball since the age of 8 and LOVES it.  She plays third base and is one tough defensive player as well as a threat at the plate!!  We decided for sure that she would NOT do anything until her summer softball or her SENIOR year of fall softball was over.  So she discontinued the at home exercises and lived with the pain.  I can think of several occasions after playing 4 or 5 games in one day getting into the Yukon and asking how her back was and she would answer, "Are you seriously asking me that?"  There have been many occasions that I would glance back at her after a big tournament exhausted and leaning back in her seat with silent tears rolling down her face.  One of her good friends once told me "I don't think anybody has any idea what she goes through every day." She had a successful summer softball with a National Championship and State Championship trophy.  We are so proud, especially her dad who helped coach the team.  Her fall team was defeated in district play but Danielle had a wonderful high school softball career!  Softball was over at the end of October and Danielle was experiencing a ton of pain every day.  She began to talk about surgery.