We had a good trip to Philadelphia. A did great on the ride up and we stayed at the Ronald McDonald House in Wilmington, Delaware on Tuesday night. We went in to Phila. on Wednesday morning for her appt.
The doctor we saw was very thorough, and looked at her, her x-rays and MRI. His opinion was similar to that which received in Chapel Hill, except much more extensive. He does feel that she needs surgery, but a more in-depth surgery than what had been described to us earlier. He wants to fuse 5 of her vertebrae, but go in from the sides and from the back, and possibly the front. He wants us to get a CT scan, which he thinks is better for looking at the spine than the MRI, and then come back to Phila. in July to see the doctor who would actually do the surgery.
He did share with us two other options for surgery, but they were more high-risk, and did not guarantee any better results. One of those would involve re-sectioning the vertebrae that are fused together (with the possibility of them refusing) and may only correct her curve by 5- 10 degrees. The other option involved putting "growth rods" in her spine. As best as I can understand, there is no low-risk way to correct her curve, we can only stop it where it is at.
Our next appointment is with a specialist in Charlotte, next Wednesday, July 6. We would go back to Philadelphia on Friday, July 22 if that is the route we want to take. I think L and I both would rather have her surgery in NC, but we will just wait and see.
Thank you all for your emails and prayers. I know that I witnessed a miracle when I saw a 21 month old ride for 8 hours and did not cry one bit. (She did make up for it that night when she did not want to go to sleep in her pack-n-play, but that was OK.)
A side note to the story is how wonderful the Ronald McDonald House is. We tried to get in the house in Phila. but they were full, so we called the house in Delaware. (Our other option was a house in Camden, NJ, but I had just heard a report on the news that described Camden as the worst city in the country as far as crime, so.....) The house we stayed in has 50 rooms. It's basically a really nice hotel, but with a homey feel to it. There was a dining room, kitchen, living room, library, playroom - you get the picture. We arrived at 5:00 and were told that dinner would be ready at 5:30. Dinner is provided to the families each night, if you like what they are having. I'm thinking that different groups come in and fix it. There was a "treasure chest" room that each child could go in and pick out a new toy as a prize. The cost to us to stay that one night was $15.00. The only thing we had to do was clean our room as we were checking out.
So, the next time you go through the drive-thru at McDonalds and you see that little plexiglass box asking for donations to the Ronald McDonald house, know that it is money well spent. If your SS class or other group needs a service project, there is a house in W-S near Brenner's Childrens Hospital that I'm sure could give you a list of things they need done. I did go to their website last night and they have a wish list on there.
Thursday, June 30, 2005
Monday, June 6, 2005
Scoliosis - the early days
We took A back to the dr. in Chapel Hill last Thursday to get the results of her MRI and renal ultrasound.
Her kidneys and bladder were fine, as well as her spinal cord. The MRI confirmed what the dr. saw on the x-rays, which is several of her vertabrae are fused together on one side which is causing her curve. His recommendation is to do minor surgery now by going in through her back and fusing those same vertabrae on the opposite side, and also fusing one above and one below the curve. This will merely "arrest" the curve, and will not correct it.
She will require more surgeries later, but he can't tell us how many, what type or when, which is extremely frustrating. Maybe he really won't know until she grows more.
We are scheduled to see a specialist in Charlotte on July 6 to get his opinion. The doctor in Chapel Hill said we needed to do the surgery he is proposing in the next couple of months, so we'll see what the guy in Charlotte says we should do.
Please continue to pray for God to give us wisdom on how to proceed, and that He will make it clear to us what is the best for A.
Her kidneys and bladder were fine, as well as her spinal cord. The MRI confirmed what the dr. saw on the x-rays, which is several of her vertabrae are fused together on one side which is causing her curve. His recommendation is to do minor surgery now by going in through her back and fusing those same vertabrae on the opposite side, and also fusing one above and one below the curve. This will merely "arrest" the curve, and will not correct it.
She will require more surgeries later, but he can't tell us how many, what type or when, which is extremely frustrating. Maybe he really won't know until she grows more.
We are scheduled to see a specialist in Charlotte on July 6 to get his opinion. The doctor in Chapel Hill said we needed to do the surgery he is proposing in the next couple of months, so we'll see what the guy in Charlotte says we should do.
Please continue to pray for God to give us wisdom on how to proceed, and that He will make it clear to us what is the best for A.
Thursday, May 26, 2005
Scoliosis - the early days
We did go to Chapel Hill yesterday for the MRI and renal ultrasound. Everything went great.
She was given an oral medication that put her to sleep and they did not have to give her an IV. The MRI only took about 45 minutes to do the length of her spine. They allowed L and I to be in the "vault" with her which surprised me. It took her about 2 hours to wake up from start to finish.
The "sleepy" medicine did make her seem drunk, and she had no control over her motor skills for several hours. That did make her mad because she really wanted to get down and play but she would just fall over.
The renal ultrasound showed that she does have two kidneys, but other than that I don't know what I was looking at on the screen.
We are scheduled to go back to the ortho specialist on Thursday, June 2 to learn what the tests showed.
She was given an oral medication that put her to sleep and they did not have to give her an IV. The MRI only took about 45 minutes to do the length of her spine. They allowed L and I to be in the "vault" with her which surprised me. It took her about 2 hours to wake up from start to finish.
The "sleepy" medicine did make her seem drunk, and she had no control over her motor skills for several hours. That did make her mad because she really wanted to get down and play but she would just fall over.
The renal ultrasound showed that she does have two kidneys, but other than that I don't know what I was looking at on the screen.
We are scheduled to go back to the ortho specialist on Thursday, June 2 to learn what the tests showed.
Wednesday, May 25, 2005
Scoliosis - the early days
Dear Friends,
Here is the latest update on A. We met with the specialist in Chapel Hill yesterday and he did confirm that she has congenital scoliosis (which means she was born with it.)
The next step is to have an MRI which will show much more detail than an x-ray, and also a renal ultrasound. (The ultrasound is to look at her kidneys, and see if there are any problems there.) Apparently when you have congenital scoliosis, there is a great chance of only having one kidney.
We will go back to Chapel Hill for these tests tomorrow, Wednesday, May 25th. Her MRI is scheduled for 9:30 and the ultrasound is scheduled for 2:30. She will have to be put to sleep for the MRI which could last for up to two hours. The ultrasound will be no different than what we have when we are pregnant.
Please pray that her body responds well to the anesthesia, and that the ultrasound will not be traumatic for her.
We will go back to the specialist on Thursday, June 2 to discuss the results of the MRI, and to hear his opinion on what should be done next.
After viewing the x-rays, he felt like the first step should be to fuse a few of her vertibrae at the "pivot" point, which is where the curve and twist begin. He said this would be more "mild" or "minor" compared to what we may still have to do in the future. After doing this step, we would wait and see how it progresses. I don't think this is the route we want to go because fusion stops growth in that area.
We do have an appt. with a specialist in Charlotte on July 6 to get another opinion, but we are beginning to seek out other options in other parts of the country. Please pray that God will show us who He would have do the surgery and will make it clear to us where to go next.
Here is the latest update on A. We met with the specialist in Chapel Hill yesterday and he did confirm that she has congenital scoliosis (which means she was born with it.)
The next step is to have an MRI which will show much more detail than an x-ray, and also a renal ultrasound. (The ultrasound is to look at her kidneys, and see if there are any problems there.) Apparently when you have congenital scoliosis, there is a great chance of only having one kidney.
We will go back to Chapel Hill for these tests tomorrow, Wednesday, May 25th. Her MRI is scheduled for 9:30 and the ultrasound is scheduled for 2:30. She will have to be put to sleep for the MRI which could last for up to two hours. The ultrasound will be no different than what we have when we are pregnant.
Please pray that her body responds well to the anesthesia, and that the ultrasound will not be traumatic for her.
We will go back to the specialist on Thursday, June 2 to discuss the results of the MRI, and to hear his opinion on what should be done next.
After viewing the x-rays, he felt like the first step should be to fuse a few of her vertibrae at the "pivot" point, which is where the curve and twist begin. He said this would be more "mild" or "minor" compared to what we may still have to do in the future. After doing this step, we would wait and see how it progresses. I don't think this is the route we want to go because fusion stops growth in that area.
We do have an appt. with a specialist in Charlotte on July 6 to get another opinion, but we are beginning to seek out other options in other parts of the country. Please pray that God will show us who He would have do the surgery and will make it clear to us where to go next.
Friday, May 20, 2005
Congenital Scoliosis
I have decided to chronicle my girl's journey with scoliosis on this site as well. I have a CaringBridge page that I mainly use for that purpose, but I really hope someone who is beginning this journey will find this site, and it will be helpful to them. But most of all, I want it to show that there is hope.
A was diagnosed with congenital scoliosis in May, 2005. She was 20 months old. This is a pic of her very first x-ray.
Definitely not the look we would have like it to have.
So what is Congenital Scoliosis? Here are some FAQs about it found on a scoliosis website.
Q: What is the definition of congenital scoliosis?
A: Doctors would describe it as a condition due to congenitally anomalous vertebral development, but it's easier to say it is a curvature of the spine caused by birth defects in the spine itself.
Q: What sorts of birth defects cause congenital scoliosis?
A: The most common birth defect is called hemivertebra, which means half of one side of a vertebra forms while the other side doesn't. Another defect is called a unilateral bar, a condition where you will find three to four vertebrae "stuck"or fused together on one side. At present, no one knows what causes these defects.
Q: In the case of a hemivertebra, how does it create a curvature?
A: All growing bones have growth centers, but if you're born with half a bone on one side and the other side is missing, the side with the growth center will grow faster than the other, and you end up with a curvature.
Q: When are doctors most likely to see signs of congenital scoliosis in children?
A: We seldom see it at birth unless an x-ray has been taken for some other purpose, such as pneumonia, or unless the child is born crooked. I have seen a few children a week old who had 40º-50º curves, but that's fairly rare. More than likely, we'll see it show up later in life—for example, in a teenager who's going through the growth spurt.
Q; In the case of the teenager, how would you know the youngster had congenital scoliosis and not idiopathic scoliosis?
A: When you look at an x-ray and see abnormal bone, you know it's congenital. With idiopathic scoliosis, you won't see any abnormal bone. As your readers will recall, idiopathic means a disorder that has no known cause.
Q: How many individuals in the U.S. population are affected by congenital scoliosis?
A: Congenital scoliosis is not a common problem: approximately one person in every 10,000 is affected, and that number has remained fairly stable over the years.
Q: How far would a congenital curve have to progress for you to begin thinking about treating it?
A: There is no magic number of degrees—quite different from idiopathic. If it's progressing, it needs treatment!
Q: Would you tell us about the treatments that are available for those whose curves get to that point?
A: Treatment of congenital is quite different from treatment of idiopathic scoliosis. For example, with congenital, bracing seldom works; the bones themselves are crooked or deformed, and a brace on the outside simply can't affect a discrepancy on one side or the other of the vertebral column. The only treatment that works is surgery.
Q: What other problems might one find in conjunction with congenital scoliosis?
A: Congenital scoliosis patients tend to have other problems as well, such as kidney dysfunctions or urinary tract abnormalities. In fact, 25%-30% of patients have kidney-bladder problems as well. 40% of patients have other anomalies of spinal cord development. 10% have congenital heart problems.
Q: Is there pain associated with congenital scoliosis?
A: No.
Q: Can physical therapy help reduce or stabilize a congenital curvature?
A: This has been tried, but no, it doesn't help at all.
A's curve is mainly from a couple of defects in her spine. She has a unilateral bar, which is basically 3 vertabrae that did not separate on one side, but did on the other. She also has two hemi-vertabrae, which are kinda like little triangle shaped pieces. My best description is that a portion of her spine looks like a puzzle.
The next few posts will show our early travels in seeking answers and how God led us every step of the way.
A was diagnosed with congenital scoliosis in May, 2005. She was 20 months old. This is a pic of her very first x-ray.
Definitely not the look we would have like it to have.
So what is Congenital Scoliosis? Here are some FAQs about it found on a scoliosis website.
Q: What is the definition of congenital scoliosis?
A: Doctors would describe it as a condition due to congenitally anomalous vertebral development, but it's easier to say it is a curvature of the spine caused by birth defects in the spine itself.
Q: What sorts of birth defects cause congenital scoliosis?
A: The most common birth defect is called hemivertebra, which means half of one side of a vertebra forms while the other side doesn't. Another defect is called a unilateral bar, a condition where you will find three to four vertebrae "stuck"or fused together on one side. At present, no one knows what causes these defects.
Q: In the case of a hemivertebra, how does it create a curvature?
A: All growing bones have growth centers, but if you're born with half a bone on one side and the other side is missing, the side with the growth center will grow faster than the other, and you end up with a curvature.
Q: When are doctors most likely to see signs of congenital scoliosis in children?
A: We seldom see it at birth unless an x-ray has been taken for some other purpose, such as pneumonia, or unless the child is born crooked. I have seen a few children a week old who had 40º-50º curves, but that's fairly rare. More than likely, we'll see it show up later in life—for example, in a teenager who's going through the growth spurt.
Q; In the case of the teenager, how would you know the youngster had congenital scoliosis and not idiopathic scoliosis?
A: When you look at an x-ray and see abnormal bone, you know it's congenital. With idiopathic scoliosis, you won't see any abnormal bone. As your readers will recall, idiopathic means a disorder that has no known cause.
Q: How many individuals in the U.S. population are affected by congenital scoliosis?
A: Congenital scoliosis is not a common problem: approximately one person in every 10,000 is affected, and that number has remained fairly stable over the years.
Q: How far would a congenital curve have to progress for you to begin thinking about treating it?
A: There is no magic number of degrees—quite different from idiopathic. If it's progressing, it needs treatment!
Q: Would you tell us about the treatments that are available for those whose curves get to that point?
A: Treatment of congenital is quite different from treatment of idiopathic scoliosis. For example, with congenital, bracing seldom works; the bones themselves are crooked or deformed, and a brace on the outside simply can't affect a discrepancy on one side or the other of the vertebral column. The only treatment that works is surgery.
Q: What other problems might one find in conjunction with congenital scoliosis?
A: Congenital scoliosis patients tend to have other problems as well, such as kidney dysfunctions or urinary tract abnormalities. In fact, 25%-30% of patients have kidney-bladder problems as well. 40% of patients have other anomalies of spinal cord development. 10% have congenital heart problems.
Q: Is there pain associated with congenital scoliosis?
A: No.
Q: Can physical therapy help reduce or stabilize a congenital curvature?
A: This has been tried, but no, it doesn't help at all.
A's curve is mainly from a couple of defects in her spine. She has a unilateral bar, which is basically 3 vertabrae that did not separate on one side, but did on the other. She also has two hemi-vertabrae, which are kinda like little triangle shaped pieces. My best description is that a portion of her spine looks like a puzzle.
The next few posts will show our early travels in seeking answers and how God led us every step of the way.
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