We got a call from A's doctor today, and her surgery is scheduled for November 20th. (That gives me 6 months to plan and save for my getaway. Just kidding. Kinda.)
What we have now decided to do is to put in a titanium rib. There was a story in Reader's Digest a couple of months ago about it. It is fairly new, but appears to be our best option at this point.
There is a website, www.veptr.com, which gives info on it. There are pluses and minuses with it. The main plus is that the surgery will not go near her spinal cord, nor her spine. The device attaches to her ribs/hip. It is also not permanent, which the fusion would have been.
The biggest minus is that the device has to be adjusted every SIX months. That means surgery every six months until she is done growing, which will be when she's 14 or 15. And it's not out-patient. It is put-to-sleep surgery. So we're looking at 20 surgeries over the course of her childhood. At that point, then we will look at fusion.
It really is a whole lot more in depth than what I've described. (I still don't understand it all, but I feel good about the decision. Still don't want to do anything but run away, but that's not the greatest option either.) I'm just trying to give you the highlights. It really is the best option that we have for treatment right now. My hope is that something new will come along that is even better while we are buying her some time. Obviously my #1 choice would be that God would just heal her. It definitely would not be a miracle wasted.
Thursday, May 10, 2007
Thursday, March 1, 2007
Scoliosis - the early days
We took A back to her doctor yesterday. We were scheduled to go in May, however, we have noticed significant change over the past few months, so we were able to get in earlier.
Both of her curves have progressed a great deal. Her major curve went from 69 degrees last February to 84 degrees now. Her compensatory curve, which is the one in her lower back, has also increased, but that is really because her body is still trying to keep everything in line. Her lower curve is in the 40s now.
This really was not a surprise since we had watched how she has changed. What was a surpise was the course of treatment he is now recommending.
Up until now, the best course of action was going to be go in and try to remove some bad vertebrae, fuse the area that is curving and place rods in her spine. This obviously would be a permanent procedure.
He is now recommending another option, which would be to place a device in her called a "titanium rib". It is also called a VEPTR, which stands for Vertical Expandable Prosthetic Titanium Rib.
The VEPTR is a fairly new thing, only approved by the FDA in 2004. It is used to expand the rib cage to allow the lungs adequate room to grow. That is really the main concern for Abigail, that because of the way her spine is rotating and curving, there will be stress placed on the lungs.
There are only a handful of doctors in the country that are approved, or have used it. Our doctor has done two of these procedure (not sure if they were at Baptist or not), and has 3 in line ahead of A.
There are pros and cons with the new option. The main pro is that there is not a significant risk with the surgery, as with the other option. They really will not be near the spine if they use the VEPTR. There are minor risks, but just the basics that come with every surgery.
The cons are that it is not a "one surgery and we're done". The VEPTR has to be expanded every 6 months, basically for the next 10 or so years, until her trunk is done growing. So we are looking at potentially 20 or more surgeries just for expansion. Who knows what that means as far as insurance goes. I have the feeling that she will reach a lifetime max fairly quickly.
So we probably have more questions than answers at this point. I just wanted to give you all an update on where we're at right now.
If we go the VEPTR route, then he would like to do the surgery w/in 6 to 12 months. We are thinking fall of this year. He is still forming his team that will be doing these procedures with him, and it sounds like it is more entailed because of the newness of the procedure.
Both of her curves have progressed a great deal. Her major curve went from 69 degrees last February to 84 degrees now. Her compensatory curve, which is the one in her lower back, has also increased, but that is really because her body is still trying to keep everything in line. Her lower curve is in the 40s now.
This really was not a surprise since we had watched how she has changed. What was a surpise was the course of treatment he is now recommending.
Up until now, the best course of action was going to be go in and try to remove some bad vertebrae, fuse the area that is curving and place rods in her spine. This obviously would be a permanent procedure.
He is now recommending another option, which would be to place a device in her called a "titanium rib". It is also called a VEPTR, which stands for Vertical Expandable Prosthetic Titanium Rib.
The VEPTR is a fairly new thing, only approved by the FDA in 2004. It is used to expand the rib cage to allow the lungs adequate room to grow. That is really the main concern for Abigail, that because of the way her spine is rotating and curving, there will be stress placed on the lungs.
There are only a handful of doctors in the country that are approved, or have used it. Our doctor has done two of these procedure (not sure if they were at Baptist or not), and has 3 in line ahead of A.
There are pros and cons with the new option. The main pro is that there is not a significant risk with the surgery, as with the other option. They really will not be near the spine if they use the VEPTR. There are minor risks, but just the basics that come with every surgery.
The cons are that it is not a "one surgery and we're done". The VEPTR has to be expanded every 6 months, basically for the next 10 or so years, until her trunk is done growing. So we are looking at potentially 20 or more surgeries just for expansion. Who knows what that means as far as insurance goes. I have the feeling that she will reach a lifetime max fairly quickly.
So we probably have more questions than answers at this point. I just wanted to give you all an update on where we're at right now.
If we go the VEPTR route, then he would like to do the surgery w/in 6 to 12 months. We are thinking fall of this year. He is still forming his team that will be doing these procedures with him, and it sounds like it is more entailed because of the newness of the procedure.
Tuesday, October 10, 2006
Scoliosis - the early days
Our doctor's appointment today was not what we hoped for, but what we slightly expected from watching the change in A's back over the past few months.
Her curve has progressed an additional 6 degrees, and Dr. Shilt says that it is a good indication that it will only continue to worsen. The plan now is to come back on three months (May 5) and do another set of x-rays to see where we are at. If all goes as he anticipates (based on what the last three months showed) we will be doing another CT scan after that, and then schedule the surgery. His desire is that she get older and bigger so he can use hardware (rods) to stabilize what he does in surgery, so we are really just trying to buy her some time.
Her rotation of the spine has really begun to worsen, which is a concern because of the stress that it can put on the lungs. He said that more than likely we are looking at a summer-time surgery. I'd love to push it to the fall, but we'll see what God has in mind.
Her curve has progressed an additional 6 degrees, and Dr. Shilt says that it is a good indication that it will only continue to worsen. The plan now is to come back on three months (May 5) and do another set of x-rays to see where we are at. If all goes as he anticipates (based on what the last three months showed) we will be doing another CT scan after that, and then schedule the surgery. His desire is that she get older and bigger so he can use hardware (rods) to stabilize what he does in surgery, so we are really just trying to buy her some time.
Her rotation of the spine has really begun to worsen, which is a concern because of the stress that it can put on the lungs. He said that more than likely we are looking at a summer-time surgery. I'd love to push it to the fall, but we'll see what God has in mind.
Saturday, May 6, 2006
We took A back to see her specialist this afternoon at Baptist Hospital.
For a brief recap, this whole roller coaster ride started last May with a diagnosis of congenital scoliosis. At that time, A's curve measured at somewhere between 50-55 degrees. In November, we saw our current doctor and he wanted to monitor her progress before doing surgery. We saw him again in February, and her curve progressed 5-6 degrees in those 3 months. At that point he felt that her curve would continue to progress, and that when we returned today, we would be starting the process of surgery.
My prayer has been that we would go in, and that the curve would have not progressed, and he would let us come back at the end of summer. Isn't it funny how God wants so much more than what we pray for?
A's curve has remained the same, and he continues to only see approximately a 5-6 degree change since November. He said that he would like to see her back in ONE YEAR to check her progress. L and I both had to ask him to clarify that, which he did.
Now he did say that if we were to notice a significant difference in her back, then by all means, we should call and bring her in earlier. He really does want to try and buy her as much time as he can before he has to do such a serious and permanent operation.
So that is where we stand. Very humble and grateful to our God for answering our prayers 4 times over what we had asked.
For a brief recap, this whole roller coaster ride started last May with a diagnosis of congenital scoliosis. At that time, A's curve measured at somewhere between 50-55 degrees. In November, we saw our current doctor and he wanted to monitor her progress before doing surgery. We saw him again in February, and her curve progressed 5-6 degrees in those 3 months. At that point he felt that her curve would continue to progress, and that when we returned today, we would be starting the process of surgery.
My prayer has been that we would go in, and that the curve would have not progressed, and he would let us come back at the end of summer. Isn't it funny how God wants so much more than what we pray for?
A's curve has remained the same, and he continues to only see approximately a 5-6 degree change since November. He said that he would like to see her back in ONE YEAR to check her progress. L and I both had to ask him to clarify that, which he did.
Now he did say that if we were to notice a significant difference in her back, then by all means, we should call and bring her in earlier. He really does want to try and buy her as much time as he can before he has to do such a serious and permanent operation.
So that is where we stand. Very humble and grateful to our God for answering our prayers 4 times over what we had asked.
Friday, November 4, 2005
Scoliosis - the early days
We took A to see Dr. Jeffrey Shilt at Baptist Hospital today. His opinion was as follows:
The diagnosis is the same as what we have been given before. His standard of treatment for congenital scoliosis is a bit different from the other doctors, and was actually a little encouraging. He recommended that we not do anything at this point, and bring her back in three months (Feb. 10th). We will do another x-ray (she had one today) to see if her curve has progressed. He likes to see a change of 10 degrees before he does surgery, no matter what the degree of the curve when the process begins. He is in no way trying to get our hopes up that she won't require surgery. That is pretty much a given unless God chooses to intervene. What he is trying to do is to buy her some time. He was very thorough in his explanation of treatment, and did discuss what he would do surgically if/when her curve progresses. He would like to be a little more aggressive in the surgery, but only to the point that she could take it. Basically what that means is this: If he is in there doing fusion surgery, he will try and take out the wedge shaped vertebrae while he's in there to get some correction of curve. (No one up to this point has given us any hope that there would be correction of the curve.) What he means by "if her body can take it" is that he will do as much as he can do, as long as there is no risk of paralysis or significant blood loss. He said he approaches this type of surgery wanting to hit a homerun, meaning total correction of the curve, but knows that he may only get to first or second base.
The diagnosis is the same as what we have been given before. His standard of treatment for congenital scoliosis is a bit different from the other doctors, and was actually a little encouraging. He recommended that we not do anything at this point, and bring her back in three months (Feb. 10th). We will do another x-ray (she had one today) to see if her curve has progressed. He likes to see a change of 10 degrees before he does surgery, no matter what the degree of the curve when the process begins. He is in no way trying to get our hopes up that she won't require surgery. That is pretty much a given unless God chooses to intervene. What he is trying to do is to buy her some time. He was very thorough in his explanation of treatment, and did discuss what he would do surgically if/when her curve progresses. He would like to be a little more aggressive in the surgery, but only to the point that she could take it. Basically what that means is this: If he is in there doing fusion surgery, he will try and take out the wedge shaped vertebrae while he's in there to get some correction of curve. (No one up to this point has given us any hope that there would be correction of the curve.) What he means by "if her body can take it" is that he will do as much as he can do, as long as there is no risk of paralysis or significant blood loss. He said he approaches this type of surgery wanting to hit a homerun, meaning total correction of the curve, but knows that he may only get to first or second base.
Friday, October 7, 2005
Scoliosis - Surgery Cancelled
A's surgery that was scheduled for Monday has been cancelled. We did go to Charlotte on Wednesday for the pre-op appt. at the hospital and we did meet with the doctor as well.
There was a change in the course of action that the doctor wanted to take, and neither L nor I were comfortable in proceeding with the surgery at this time. Four days was just not enough time for us to research and process the new information from the doctor. We both want to get even another opinion before we progress further.
We are living on an emotional roller coaster, but have seen the Lord's hand through it all. Wednesday night after we returned home, the story on the news was that Baptist Hospital and Blue Cross/Blue Shield have reached an agreement, and those with BC/BS are able to use the doctors again at Baptist as an in-network provider. This allows us to now see the specialist at Baptist, and to possibly have her surgery at Baptist as well.
We have an appointment with the pediatric orthopedic specialist at Baptist on November 4. We have talked to his office a few times, and he will be able to give us a surgical opinion on that date, and it will not be a long drawn out process. Her condition is not life-threatening, but it must be done soon in order for her curve to not progress.
There was a change in the course of action that the doctor wanted to take, and neither L nor I were comfortable in proceeding with the surgery at this time. Four days was just not enough time for us to research and process the new information from the doctor. We both want to get even another opinion before we progress further.
We are living on an emotional roller coaster, but have seen the Lord's hand through it all. Wednesday night after we returned home, the story on the news was that Baptist Hospital and Blue Cross/Blue Shield have reached an agreement, and those with BC/BS are able to use the doctors again at Baptist as an in-network provider. This allows us to now see the specialist at Baptist, and to possibly have her surgery at Baptist as well.
We have an appointment with the pediatric orthopedic specialist at Baptist on November 4. We have talked to his office a few times, and he will be able to give us a surgical opinion on that date, and it will not be a long drawn out process. Her condition is not life-threatening, but it must be done soon in order for her curve to not progress.
Thursday, July 28, 2005
Scoliosis - the early days - Charlotte
We went back to the doctor in Charlotte yesterday and saw A's CT scan. It was absolutely amazing technology, and did confirm what everyone has told us. I wish we had been given the chance to do this testing from the beginning, but I know the other things were necessary as well.
She does have two different vertabrae that are formed in the shape of a wedge or pie, and there are three that are fused together on one side. (I think those look like one big blob.) He will be fusing five of her vertabrae together on one side, and will probably place some rods in there to stabilize it as well. She may wear a brace, and possibly a body cast after surgery. (I told L that if they have to put her in a body cast, I'm going to ask them to put a cast on her baby doll as well.) Alot of that depends on what type and how many rods he can get in there (since she is a small person, it may be limited). There are certain things that he really could not answer definitively until the actual surgery.
We do know that her hospital stay should be from 3-5 days depending on how things go. As far as when, we still don't have a definite answer, but should hear from the surgery scheduler any time after 14 days. (Apparently it takes that long for them to verify that we do have insurance and they will get paid - eventually.) The dr. is not available until mid-Sept. but we are leaning toward early to mid-October. We would like to go to the beach and participate in the fair before this, since life will be limited for A after the surgery. The closer we can wait to colder weather, the better, since playgrounds and the like will be off limits.
She does have two different vertabrae that are formed in the shape of a wedge or pie, and there are three that are fused together on one side. (I think those look like one big blob.) He will be fusing five of her vertabrae together on one side, and will probably place some rods in there to stabilize it as well. She may wear a brace, and possibly a body cast after surgery. (I told L that if they have to put her in a body cast, I'm going to ask them to put a cast on her baby doll as well.) Alot of that depends on what type and how many rods he can get in there (since she is a small person, it may be limited). There are certain things that he really could not answer definitively until the actual surgery.
We do know that her hospital stay should be from 3-5 days depending on how things go. As far as when, we still don't have a definite answer, but should hear from the surgery scheduler any time after 14 days. (Apparently it takes that long for them to verify that we do have insurance and they will get paid - eventually.) The dr. is not available until mid-Sept. but we are leaning toward early to mid-October. We would like to go to the beach and participate in the fair before this, since life will be limited for A after the surgery. The closer we can wait to colder weather, the better, since playgrounds and the like will be off limits.
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