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Member
Posts: 40
| Hi. First I would like to say that I've read almost every story and it's amazing how strong all of your children are. They are all so beautiful and seem to all be fighters.
Last Friday we were told that my 9 month old daughter has congenital scoliosis and kyphosis w/ hemivertebrae, a couple fused ribs and a couple fused vertebrae. Of course over the weekend all I did was cry and research on the internet. The Dr. that we saw said that the best bet for her is to get a VEPTR. He told me about all the surgeries which totally freaked me out, but after reading all of your stories, I realize that it really does offer a better quality of life for so many children. We had a renal US done today which turned out great! Then we went to another orthopedic surgeon who told us that he thinks VEPTR is too much for such an otherwise healthy little girl. I was happy to hear that, but then it just confuses me more. Of course we'll be able to tell more once we have and MRI/CT done, but why are these two physician's opinions taken from the same XRay so different? I really don't want my child to have to go through unnecessary surgeries; however, I would hate to realize 10 years down the road that we made the wrong decision. I'm hoping to meet with Dr. Price who performs the VEPTR surgeries within the next couple of weeks and may even get another opinion from a spine doc at St. Louis Children's Hospital. Does anyone have any advice on what else I can do to make sure I make the right decision? I would appreciate any words of wisdom :).  |
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Veteran
Posts: 213
Location: Abingdon, VA | First of all, welcome to the site. The people on here are amazing and they all have so much to offer and are great support! It is just like having extended family.
I'm so sorry to hear about your stressful week! First of all...stop and take a deep breath!!!! Kids are very resilient and your daughter is like the rest of ours I am sure, tough as nails:) The two different opinions may be one doctor thinking into the future for what she may eventually need and the other may be thinking why talk about it now when she is so healthy, lets just think about it when the time comes. I suggest you go ahead with getting the third opinion and see what they suggest for now and for the future. I know it is scary and a lot of information, but the more information you get, the easier it is to make the decision. Also keep in mind that you don't have to make this decision over night, especially since your daughter sounds stable at this point. Take your time, investigate and think about it. |
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Extreme Veteran
Posts: 382
| I am so sorry to hear about your daughter and we all know what you are going through right now. You will find that different docs have different opinions. I know that this can be very confusing when doctors don't agree and you need answers. We got quite a few different opinions and I was very upset because I wanted to fix my daughter. I can say with confidence that seeing Dr. Price is a good idea. He will listen to your questions and answer them the best he can. He is very respectful of parents and he values this web site as a tool in dealing with kids like ours. He really listens. Good luck with the St. Louis docs, they are on the conservative side and are a bit reluctant to do VEPTR. To my knowledge, they have not actually done it here, BUT I could be wrong. I wish they would, it would be great for so many kids here. They know about my daughter, because she was actually seen at Shriners by Kieth Bridwell and DR. Dobbs works with him. Our first surgeries were with Dr. Campbell in TX and we actually met Dr. Price during one of her surgeries. When we found out he was doing VEPTR in KC we were very happy to go there since it is closer to home. Where do you guys live? We live in St. Louis and would be happy to meet if you come.
I hope you find the answers that will help your daughter, she sounds a lot like my daughter's case.
Peace,
Julie |
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Expert
Posts: 3243
 
Location: Utah | Welcome from us too. I agree with the others. You have to continue gathering information that is for Nadia's best interest, now and in the future. You probably feel like you've been hit by a Mack truck. However, if she's already 9 months old and you are just now finding the details, that means you have time to research and find the right answers for her. VEPTR may be the right option for her, but the timing may be down the road several or many years. Who knows? Only a well-trained VEPTR doc can tell you for certain. If you have ANY doc recommend fusion surgery for her, run away fast and don't look back. More studies are being done that show early fusion in kids who have thoracic scoliosis or chestwall anomalies leads to reduced lung function as adults. Quality of life is a big issue that must be taken into consideration. My son, Braydon, is now 12yrs old. He had his VEPTR implants done at age 6yrs old. He was an "older" patient at the time. He also had fusion surgery as an infant, so I speak from experience about avoiding fusion, if at all possible (there is a time and place for fusion, but for very young children, almost never). I look forward to getting to know your family and watching Nadia grow and develop. Keep us posted. |
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Extreme Veteran
Posts: 335
Location: Elizabethtown, PA | Hi Lisa,
I am glad you found the board and the VEPTR site helpful. I am so glad you found me on myspace and I am looking forward to getting to know you and your family and watching little Nadia grow. Blessings to you all.
Kim |
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Elite Veteran
Posts: 1076
Location: Silver Lake, Kansas | Welcome!
i agree with Julie, of course, since we see Dr. Price for surgeries in KC too. we started in Texas and were there almost 4 years. it took a really special place and a special doc for us to even consider mosing closer to home for surgeries. i say this just to echo that Dr. Price is a good man, a great man who put our kids #1 and really listens to us as parents and looks to us for information and guidance. he would give you an unbiased opinion about Nadia's needs. |
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Veteran
Posts: 179
| Doctors often have conflicting opinions because there aren't hard-and-fast checklists they can go down and prescribe a solution. The best you can do is seek out the smartest doctors, with the most open mind to options and alternatives, listen to what they say, and then research it for yourself! If you're comfortable pouring over medical literature, then you can be the most important 'second opinion' (don't be afraid to question or disagree with your doctors plans)
I agree with everyone else in saying a fusion is absolutely out of the question for any child that young. Sometimes you'll still get doctors, I guess the ones that work isolated and don't keep abreast of newer techniques, that still recommend things like that.
The followup VEPTR surgeries, I mean, yeah they're surgeries and things can and do go wrong from time to time, but for a lot of kids, they're in and out things.
Your second doctor, ask for a copy of his report. Or simply verbally ask again what kind of action he'd prescribe. It sounds like it was a little vague. I know sometimes I find it overwhelming when I'm sitting in the doctors office and trying think of all the questions I should ask. I like to read their reports afterwards. |
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Extreme Veteran
Posts: 599
Location: Southern California | Just wanted to chime in agreement with the others who've replied... Seek more information... The more options and opinions you may get makes the decision that much more confusing, but the bright side is that you do have choices... So, make the most informed choice possible by getting as much information and choosing for your child the best option that will offer the BEST long-term outcome.
Keep in mind that VEPTRS offer time... Time for growing, time for new less invasive technologies to be developed...
For us, our son was quite healthy as well when he got his VEPTR implants... But we never questioned the need for repeat surgeries, because at the time, this was the only option that addressed Alex's rib cage issues and offered the opportunity for growth for his rib cage, lungs/organs & spine... He's remained a healthy, active and bright kid -- because of his titanium ribs... |
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Extreme Veteran
Posts: 395
| Hi, I'm Elizabeth and my daughter Elizabeth(8) will soon have her 4th expansion of the VEPTR. She was diagnosed with congenital scoliosis at 7mos. of age. By age 3 her curve was 85 degrees and then she had a period of about 2 years where her curve stopped progressing and then just as she turned 5, we learned about and were referred for the VEPTR. At the evaluation I was TERRIFIED and very overwhelmed with everything, especially repeat surgeries. She had the surgery at age 6 and it was an answer to prayer for her. I then found myself asking "why couldn't we have learned of this option earlier in her life???"...and decided that the time must have been right for her when she had it done, as I had prayed and prayed for a miracle. Every child is different even though some of our kids have many similarities. You've been given some great advice, and in the end I bet you make the best choice for Nadia.
Best wishes to your family.
Elizabeth |
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Member
Posts: 40
| Thank you all for all for the warm welcome and good advice. I will continue to seek other physician opinions and research on my own. We should have the MRI&CT scheduled soon (hopefully within a week or two) and know more about Nadia's diagnosis then. We had a renal ultrasound and echo done and both turned out great--we are so thankful! Our original doc spoke to Dr. Price today and he has agreed to see Nadia (I think we'll see him one month after the MRI is scheduled). I also spoke with Dr. Lenske's office at St. Louis Children's Hospital who has agreed to see us also if we want an additional opinion. I'm so glad to hear those of you who have seen Dr. Price speak highly of him...from working at a hospital, I know that some surgeons get knife happy and it sounds like that is not the case for Dr. Price.
For PJCMD1, I live in Columbia (in between St. Louis & KC). Once all of this craziness settles and we know more about Nadia's diagnosis, I would LOVE to meet. I think it would definitly ease my mind :).
Thank you all again for your words of wisdom. Now I at least feel like I'm heading in the right direction.
---Lisa, Nadia's Mommy
PS-Carmell, you took the words right out of my mouth when you wrote "You probably feel like you've been hit by a Mack truck". That's EXACTLY how I feel. |
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Elite Veteran
Posts: 806
Location: Divide, Colorado | Welcome! Everyone has already given you the best advice - gather information first, and research it yourself. And remember, you have some time to make this decision. It doesn't have to be made today or tomorrow. And just to throw a little more onto the scale - if they say fuse, like Carmell said "run away and don't look back" - I'd have to tip the scale more in that direction as well. Feel free to ask questions here, that's why we're all here - for information and support! I can't wait to hear more about Nadia (love the name!) and how she's doing in the future! |
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Elite Veteran
Posts: 795
Location: Levelland, Texas | Welcome, I have to agree with everyone else research. I hope you find the answers you are looking for. I will have you in my prayers. |
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Regular
Posts: 72
Location: Monroe City, MO | To Julie from St. Louis and Lisa,
I live in a small town (Monroe City) in Missouri and we go to st. louis for all of our specialty doctors. We also go columbia quite often because my sister-n-law lives there. So, just to put my two cents in.... My daughter is 4 1/2 and we have been seeing Dr. Dobbs (Children's Hosp) since she was one. Kimberly has a severe curve (~90 degrees) but it's been pretty stable. We are scheduled for our first MRI/CatScan on Aug 18 to get a better view of what is going on. Anyway, my point is, Dr. Dobbs has done about 4 to 6 VEPTR surgeries and my daughter is a candidate for one as well. I think he is wonderful, very easy to talk to and will answer all my questions. For now, since he is so new at it, Dr. Campbell (San Antonio) or another guroo from California come to assist in his surgeries so that might be an option for you guys.
Good luck and feel free to contact me personally.
God Bless,
Mary |
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Extreme Veteran
Posts: 382
| Lisa, we would be glad to stop by on our way to KC next time we go. Eli has another surgery Nov. 30th and it would be great to meet you guys. You can contact me at [email protected]
We live in Webster Groves, about 15 min. from Children's Hospital. More people are familiar with Kirkwood though and we live 5 minutes from there (that's where Shawn Hornbeck was found...pass that apartment complex almost everyday that I've been able to drive...still freaks me out).
Good luck on your journey and remember to breath and stay focused. You have a great resource here, so you are not alone.
Peace,
Julie |
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Member
Posts: 40
| Kim's mom---Thank you for Dr. Dobb's name. Since I work at a BJC hospital, my insurance covers 100% of all hospital stays if the procedure is done at a hospital within the BJC network. It does kind of freak me out that he is SO young, but I would be comfortable if Dr. Campbell was there to assist. Of course we will pay whatever it takes to get my daughter the best care possible, but I must say it's a relief to hear that this is an option for us.
PJMD1-thank you for your email address. I will definitely be contacting you :). |
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Extreme Veteran
Posts: 382
| Mary, I wasn't trying to offend about the doctor's in St. Louis (Paula, my partner is one and we know many), but the majority of docs here want all the data first (the first 20 years of a study) and our kids are the data  so it may take awhile for VEPTR to catch on here. I think that it is great that a few are looking at VEPTR as a good thing, but still there are MANY who just want to fuse. We have a young ortho neighbor who knows Eli, and thinks that VEPTR is great, but he says that at all the conferences that it is brought up at here in St. Louis, the older orthos are opposed to this until the data is out. I'm not really a doctor basher and I think that these guys are great for doing it, but it's not exactly catching on like wild fire here. We would be the first in line at Children's if that was the case for sure. It would make life for Eli so much easier to be here in town for her surgeries that's for sure 
Peace,
Julie |
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Extreme Veteran
Posts: 382
| Mary, I wasn't trying to offend about the doctor's in St. Louis (Paula, my partner is one and we know many), but the majority of docs here want all the data first (the first 20 years of a study) and our kids are the data so it may take awhile for VEPTR to catch on here. I think that it is great that a few are looking at VEPTR as a good thing, but still there are MANY who just want to fuse. We have a young ortho neighbor who knows Eli, and thinks that VEPTR is great, but he says that at all the conferences that it is brought up at here in St. Louis, the older orthos are opposed to this until the data is out. I'm not really a doctor basher and I think that these guys are great for doing it, but it's not exactly catching on like wild fire here. We would be the first in line at Children's if that was the case for sure. It would make life for Eli so much easier to be here in town for her surgeries that's for sure
Peace,
Julie |
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Confused
