Thanks for all the help everyone!
AILEA: WOW! I'm getting so much info. here. So do I understand that your daughter had a 38 curve in 2004 and a 25 curve in 2009 after only bracing her for that time? She has not had the surgery and did not do any exercise program or Schroth program? She wore the brace faithfully, and her curve actually got better?This is what I'm hoping for, but I may have misunderstood what you wrote.I was told by the doctors and by many people that her curve would never improve from what it is now.What do you attribute your daughter's success to?I'm just curious about all of the cases I read here.Yours is a case that gives me hope again!I am finding out that all of you who have responded to me are so kind and so helpful. I really appreciate the kind words and the support. I really needed it.
MAMAMAX AND FLERC: You both mentioned the alternative program that I was thinking of trying after I get a second opinion. I actually spoke to Dr. Moramarco in Woburn, MA. I liked what I heard! I was so happy to see someone who actually knew about this Dr. I don't want to go to a quack! I thought I would get one more opinion to see what these x-rays are actually reading. Is it 31 and 33 or 41 and 48? Then I would decide where to go from there. We are bracing right now and we would like to try this Schroth program with Dr. Moramarco. My daughter would like to try it too. As I have said before, she really does not want the surgery! She is being so good about this brace. I've read alot of posts that mention the children not being able to tolerate the brace. I hope I'm not speaking too soon, but she really is being good about it.Everyday-22 hours a day-tightening it beyoond the markings that they told her to. They suggested that she "try" to get beyond the markings before her next appointment, and within the first 2 weeks she has made sure it is as tight as she can pull it!She never complains about that, but she does always say that she does not want that surgery.I hope I haven't scared her too much,by trying to find an alternative solution. I'm really worried about that!
FIREFLYMD: I'm not really sure about what the VBS stapling is.Could you explain? I know you said you tried everything to avoid surgery too, but ended up with that option. You also mentioned a doctor in Boston. That is the area I am in. Children's Hospital is the place we were sent to first. My second opinion at the end of this month will be at Mass. General Hospital. I'm not sure which hospital to go with either. I have many people tell me Children's is the best, then I have others tell me Mass. General.Do you have an opinion on these two? You seem to have traveled very far to find the right doctor for you. You went to different states. Is that what most people do? I just figured Boston has so many good hospitals I would be fine choosing among them. But it seems that I may be wrong. Should I be going elsewhere?
SNOOPY:Thanks for the info. on Spinekids. I asked my daughter to try it and she said "NO WAY". As I said before she's good about the brace, but not so good about the whole scoliosis thing. I think she 's just not ready to face it yet. I'm still struggling myself as you can all tell. I just hope I haven't scared her too much. I've tried to not give her too much info. about the surgery, because I don't want to scare her. Maybe it would be better for her to learn it all. I think she still needs a little more time though. Treading carefully at the moment!
GRYFFINDOR: I love your screen name. We are big Harry Potter fans!I also loved your comment about your husband sticking his head in the sand.I have no support from mine. He hasn't been to any of these appointments with me. Although, I never expected any of the appointments to be as devastating as they turned out to be. So I'll be fair to him. He does want to be at all of the upcoming appointments.His opinion is "If she needs the surgery, she needs it. You need to deal with that!" He doesn't even know what the surgery entails, because every time I try to tell him about how severe the surgery is and how long the recovery is, he won't listen. He doesn't want to know anything. His feeling is "Why worry about something you can't control?"I'm the complete opposite. I want to know everything about it, so I can make an educated decision! It's driving me crazy! Thank God I was told about this forum, so I can at least bounce things off of you all, learn about your stories, and at least have some input from someone else going through the same things as us. My husband wants nothing to do with this either.Anyway, I'm so sorry to hear about your problems with the school. I can't believe they would do that to you even after you had doctor's notes about the situation. Again, I feel that this is a problem, that most people don't understnd the severity of this disease!Does your school have any idea how upsetting this is emotionally for your family?How painful it is for your daughter?How difficult and long the recovery will be for her?Oh My Gosh! They are a school, and should be educated on this.All schools should be made aware of this!POOKA did say that it is a very low percentage of children that actually end up with the surgery, but still I think the education should be out there as it is for other obscure childhood diseases, especially in a school!I hope this all works out for you. I hope the surgery goes well for your daughter too. I'm glad she wants it. I don't know how or when a child reaches that point of acceptance, but I hope if my daughter has to have it, she can find peace with it too. Good Luck!
CONCERNEDDAD: Thanks so much for the charts and sharing your story.So your daughter had no brace, no exercise program, and no progression. That sounds great to me.You also sound very gutzy and lucky!I am glad your daughter made out so well! Your charts have made it clear to me that the odds are stacked against my daughter.But I still have hope!I have a huge issue with the discrepency between the x-rays(31 and 33 or 41 and48).I also question that Risser of 1. As I said she just started her period. The doctor did take a hand x-ray and told me that all of her joint bones were closed except for the tips of her fingers. That meant she had a "little" growth left. That was my understanding of it. I had no idea what a Risser of 1 meant. Again thanks for that chart! I'm not a doctor, but I would think she would be at a Risser higher than 1. My family is very petite. Do doctors take that into consideration? My daughter is the same size as me(5feet). All the women in my family are about that size. When I was 14 I was about 5 feet tall and 90 pnds. My daughter is 5 feet tall and 85 pnds. I stayed that way all through high school. Does this matter? The doctors never asked me about any of that. They did ask how tall my husband was. He is 6ft. tall. The doctor said my daughter should be about 5-5. I don't know about that! The pediatrition always estimated my boys to be about 5-8 or 5-9. They are 17(twins) and they are done growing and they are 5-5!I doubt their little sister is going to be bigger than them. She is very petite, as I was.What do you think? Does any of this matter? I do appreciate your input.
Again, thank you to all of you for helping me sift through all of the info.
Chris
AILEA: WOW! I'm getting so much info. here. So do I understand that your daughter had a 38 curve in 2004 and a 25 curve in 2009 after only bracing her for that time? She has not had the surgery and did not do any exercise program or Schroth program? She wore the brace faithfully, and her curve actually got better?This is what I'm hoping for, but I may have misunderstood what you wrote.I was told by the doctors and by many people that her curve would never improve from what it is now.What do you attribute your daughter's success to?I'm just curious about all of the cases I read here.Yours is a case that gives me hope again!I am finding out that all of you who have responded to me are so kind and so helpful. I really appreciate the kind words and the support. I really needed it.
MAMAMAX AND FLERC: You both mentioned the alternative program that I was thinking of trying after I get a second opinion. I actually spoke to Dr. Moramarco in Woburn, MA. I liked what I heard! I was so happy to see someone who actually knew about this Dr. I don't want to go to a quack! I thought I would get one more opinion to see what these x-rays are actually reading. Is it 31 and 33 or 41 and 48? Then I would decide where to go from there. We are bracing right now and we would like to try this Schroth program with Dr. Moramarco. My daughter would like to try it too. As I have said before, she really does not want the surgery! She is being so good about this brace. I've read alot of posts that mention the children not being able to tolerate the brace. I hope I'm not speaking too soon, but she really is being good about it.Everyday-22 hours a day-tightening it beyoond the markings that they told her to. They suggested that she "try" to get beyond the markings before her next appointment, and within the first 2 weeks she has made sure it is as tight as she can pull it!She never complains about that, but she does always say that she does not want that surgery.I hope I haven't scared her too much,by trying to find an alternative solution. I'm really worried about that!
FIREFLYMD: I'm not really sure about what the VBS stapling is.Could you explain? I know you said you tried everything to avoid surgery too, but ended up with that option. You also mentioned a doctor in Boston. That is the area I am in. Children's Hospital is the place we were sent to first. My second opinion at the end of this month will be at Mass. General Hospital. I'm not sure which hospital to go with either. I have many people tell me Children's is the best, then I have others tell me Mass. General.Do you have an opinion on these two? You seem to have traveled very far to find the right doctor for you. You went to different states. Is that what most people do? I just figured Boston has so many good hospitals I would be fine choosing among them. But it seems that I may be wrong. Should I be going elsewhere?
SNOOPY:Thanks for the info. on Spinekids. I asked my daughter to try it and she said "NO WAY". As I said before she's good about the brace, but not so good about the whole scoliosis thing. I think she 's just not ready to face it yet. I'm still struggling myself as you can all tell. I just hope I haven't scared her too much. I've tried to not give her too much info. about the surgery, because I don't want to scare her. Maybe it would be better for her to learn it all. I think she still needs a little more time though. Treading carefully at the moment!
GRYFFINDOR: I love your screen name. We are big Harry Potter fans!I also loved your comment about your husband sticking his head in the sand.I have no support from mine. He hasn't been to any of these appointments with me. Although, I never expected any of the appointments to be as devastating as they turned out to be. So I'll be fair to him. He does want to be at all of the upcoming appointments.His opinion is "If she needs the surgery, she needs it. You need to deal with that!" He doesn't even know what the surgery entails, because every time I try to tell him about how severe the surgery is and how long the recovery is, he won't listen. He doesn't want to know anything. His feeling is "Why worry about something you can't control?"I'm the complete opposite. I want to know everything about it, so I can make an educated decision! It's driving me crazy! Thank God I was told about this forum, so I can at least bounce things off of you all, learn about your stories, and at least have some input from someone else going through the same things as us. My husband wants nothing to do with this either.Anyway, I'm so sorry to hear about your problems with the school. I can't believe they would do that to you even after you had doctor's notes about the situation. Again, I feel that this is a problem, that most people don't understnd the severity of this disease!Does your school have any idea how upsetting this is emotionally for your family?How painful it is for your daughter?How difficult and long the recovery will be for her?Oh My Gosh! They are a school, and should be educated on this.All schools should be made aware of this!POOKA did say that it is a very low percentage of children that actually end up with the surgery, but still I think the education should be out there as it is for other obscure childhood diseases, especially in a school!I hope this all works out for you. I hope the surgery goes well for your daughter too. I'm glad she wants it. I don't know how or when a child reaches that point of acceptance, but I hope if my daughter has to have it, she can find peace with it too. Good Luck!
CONCERNEDDAD: Thanks so much for the charts and sharing your story.So your daughter had no brace, no exercise program, and no progression. That sounds great to me.You also sound very gutzy and lucky!I am glad your daughter made out so well! Your charts have made it clear to me that the odds are stacked against my daughter.But I still have hope!I have a huge issue with the discrepency between the x-rays(31 and 33 or 41 and48).I also question that Risser of 1. As I said she just started her period. The doctor did take a hand x-ray and told me that all of her joint bones were closed except for the tips of her fingers. That meant she had a "little" growth left. That was my understanding of it. I had no idea what a Risser of 1 meant. Again thanks for that chart! I'm not a doctor, but I would think she would be at a Risser higher than 1. My family is very petite. Do doctors take that into consideration? My daughter is the same size as me(5feet). All the women in my family are about that size. When I was 14 I was about 5 feet tall and 90 pnds. My daughter is 5 feet tall and 85 pnds. I stayed that way all through high school. Does this matter? The doctors never asked me about any of that. They did ask how tall my husband was. He is 6ft. tall. The doctor said my daughter should be about 5-5. I don't know about that! The pediatrition always estimated my boys to be about 5-8 or 5-9. They are 17(twins) and they are done growing and they are 5-5!I doubt their little sister is going to be bigger than them. She is very petite, as I was.What do you think? Does any of this matter? I do appreciate your input.
Again, thank you to all of you for helping me sift through all of the info.
Chris
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