Guest guest Posted August 15, 2005 Report Share Posted August 15, 2005 is one...just this week ..he's bilateral Cf and has had 17 sets of casts and the DBB a few weeks ago the dr told us that he wanted to do a soft tissue release and another tenotomy...and put in a pin in his foot...I don't really like the idea...but we are scheduled for this week. Anyone else had this? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 15, 2005 Report Share Posted August 15, 2005 is one...just this week ..he's bilateral Cf and has had 17 sets of casts and the DBB a few weeks ago the dr told us that he wanted to do a soft tissue release and another tenotomy...and put in a pin in his foot...I don't really like the idea...but we are scheduled for this week. Anyone else had this? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 16, 2005 Report Share Posted August 16, 2005 Hello and welcome to you and ! If you don't want to have surgery on your child's feet, then it's most likely that he won't need it. Many of us here were also told that our children needed surgery, but then we switched to a doctor who was trained in the Ponseti method (and using it correctly) and our children's feet were corrected without major surgery. I hope will see your post as she was in your exact situation not long ago- she first posted on this board less than 1 week before her son was to have surgery, but she postponed the operation, went to a different doctor, and never looked back. Can you tell us what region you live in so that we might help you find a doctor to give you a second opinion on 's feet? Since he is one year old, you'll want to find a doctor who is very experienced in treating older children. Don't feel pressured to go through with the surgery. There's no reason that you can't postpone it until you've had time to explore another opinion (or two). We're here to help you in your quest to get the best treatment for your son! Have you been to Dr. Ponseti's website to review the list of doctors there? http://www.vh.org/pediatric/patient/orthopaedics/clubfeet/index.html Regards, & (3-16-00, left clubfoot) p.s. you can read my daughter's story here: http://ponseticlubfoot.freeservers.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 16, 2005 Report Share Posted August 16, 2005 Hello and welcome to you and ! If you don't want to have surgery on your child's feet, then it's most likely that he won't need it. Many of us here were also told that our children needed surgery, but then we switched to a doctor who was trained in the Ponseti method (and using it correctly) and our children's feet were corrected without major surgery. I hope will see your post as she was in your exact situation not long ago- she first posted on this board less than 1 week before her son was to have surgery, but she postponed the operation, went to a different doctor, and never looked back. Can you tell us what region you live in so that we might help you find a doctor to give you a second opinion on 's feet? Since he is one year old, you'll want to find a doctor who is very experienced in treating older children. Don't feel pressured to go through with the surgery. There's no reason that you can't postpone it until you've had time to explore another opinion (or two). We're here to help you in your quest to get the best treatment for your son! Have you been to Dr. Ponseti's website to review the list of doctors there? http://www.vh.org/pediatric/patient/orthopaedics/clubfeet/index.html Regards, & (3-16-00, left clubfoot) p.s. you can read my daughter's story here: http://ponseticlubfoot.freeservers.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 16, 2005 Report Share Posted August 16, 2005 Hi, I just wanted to say that if you don't like the idea of surgery, it's not too late to go for a 2nd opinion with a Ponseti doctor. For a clubfoot that's not 'atypical', about 4-6 casts are all that's needed and most children (about 85% I think) need a tenotomy which is a minor procedure often performed under local anaesthetic. Soft tissue release and a pin in the foot sounds like surgery, and you are right to not like the idea. You're probably already aware that's the reason Dr Ponseti devised his technique. He found during a follow-up research project that many children who had had the soft tissue release and pins had painful, stiff feet, and even arthritis that developed after a while usually during adolescence and into adulthood. There are many parents in this group who were in the same position as you, and we switched to a " true " Ponseti doctor who straightened our children's feet without surgery. We were told by every surgeon in our country that would need full surgery with soft tissue release and pins at the age of 3 months. Luckily we found out about Dr Ponseti and flew from South Africa for treatment when was 10 weeks old. His feet were straight before his scheduled surgery date! When we returned home, 's previous doctor couldn't believe it when we showed him 's beautiful feet without any surgery. It took a while, but after about a year he started training in the Ponseti method too and he no longer operates on congenital clubfoot. I have had a website going for 2.5 years and many people in South Africa have cancelled surgery (one of them a day before) and had their children's feet straightened by a qualified Ponseti doctor. Luckily there are now a few in our country, so these parents have another choice of treatment. Please send all your questions and the people here in this will help you find another doctor near you if you decide to go for a 2nd opinion. Or we can give advice if you decide to go to the master himself, Dr Ponseti in Iowa City! Good luck and Born 24th Jan 2003, bilateral clubfoot, treated by Dr Ponseti in April 2003, now in his FAB 10-12 hours at night. Moss STEPS CHARITY www.clubfoot.co.za www.steps.org.za aaron is one...just this week ..he's bilateral Cf and has had 17 sets of casts and the DBB a few weeks ago the dr told us that he wanted to do a soft tissue release and another tenotomy...and put in a pin in his foot...I don't really like the idea...but we are scheduled for this week. Anyone else had this? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 16, 2005 Report Share Posted August 16, 2005 Hi, I just wanted to say that if you don't like the idea of surgery, it's not too late to go for a 2nd opinion with a Ponseti doctor. For a clubfoot that's not 'atypical', about 4-6 casts are all that's needed and most children (about 85% I think) need a tenotomy which is a minor procedure often performed under local anaesthetic. Soft tissue release and a pin in the foot sounds like surgery, and you are right to not like the idea. You're probably already aware that's the reason Dr Ponseti devised his technique. He found during a follow-up research project that many children who had had the soft tissue release and pins had painful, stiff feet, and even arthritis that developed after a while usually during adolescence and into adulthood. There are many parents in this group who were in the same position as you, and we switched to a " true " Ponseti doctor who straightened our children's feet without surgery. We were told by every surgeon in our country that would need full surgery with soft tissue release and pins at the age of 3 months. Luckily we found out about Dr Ponseti and flew from South Africa for treatment when was 10 weeks old. His feet were straight before his scheduled surgery date! When we returned home, 's previous doctor couldn't believe it when we showed him 's beautiful feet without any surgery. It took a while, but after about a year he started training in the Ponseti method too and he no longer operates on congenital clubfoot. I have had a website going for 2.5 years and many people in South Africa have cancelled surgery (one of them a day before) and had their children's feet straightened by a qualified Ponseti doctor. Luckily there are now a few in our country, so these parents have another choice of treatment. Please send all your questions and the people here in this will help you find another doctor near you if you decide to go for a 2nd opinion. Or we can give advice if you decide to go to the master himself, Dr Ponseti in Iowa City! Good luck and Born 24th Jan 2003, bilateral clubfoot, treated by Dr Ponseti in April 2003, now in his FAB 10-12 hours at night. Moss STEPS CHARITY www.clubfoot.co.za www.steps.org.za aaron is one...just this week ..he's bilateral Cf and has had 17 sets of casts and the DBB a few weeks ago the dr told us that he wanted to do a soft tissue release and another tenotomy...and put in a pin in his foot...I don't really like the idea...but we are scheduled for this week. Anyone else had this? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 16, 2005 Report Share Posted August 16, 2005 Hi I just saw your post and I just wanted to let you know that I think his doctor has to be doing something wrong. 17 set of casts is just not right at all, poor and you. I am so sorry for what you are going through. Where are you from? What doctor do you see? I urge you not to go forward with the procedure he is suggesting until you talk to another doctor. If you are worried (I know I always am) about insurance issues, etc maybe we can find a Shriner's near you for a " free " second opinion, etc. There is also Angel Flights which is free airfare. Please feel free to e-mail me if you would like to talk chele323232@... I really hope you trust your instincts and don't go ahead yet. You can always reschedule and just hold off until you talk to another doctor. I will be praying for you and hope you are able to cancel the surgery just until you recive another opinion. Good Luck! Michele Collin's story at http://www.geocities.com/chele323232 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 16, 2005 Report Share Posted August 16, 2005 Hi I just saw your post and I just wanted to let you know that I think his doctor has to be doing something wrong. 17 set of casts is just not right at all, poor and you. I am so sorry for what you are going through. Where are you from? What doctor do you see? I urge you not to go forward with the procedure he is suggesting until you talk to another doctor. If you are worried (I know I always am) about insurance issues, etc maybe we can find a Shriner's near you for a " free " second opinion, etc. There is also Angel Flights which is free airfare. Please feel free to e-mail me if you would like to talk chele323232@... I really hope you trust your instincts and don't go ahead yet. You can always reschedule and just hold off until you talk to another doctor. I will be praying for you and hope you are able to cancel the surgery just until you recive another opinion. Good Luck! Michele Collin's story at http://www.geocities.com/chele323232 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 16, 2005 Report Share Posted August 16, 2005 Hello I can see why you would be concerned about having a procedure done especially knowing that the Doctor wants to put pins in your little guys feet. I was in a situation that I thought we were going to have to do surgery and I got on this support group and put my story out there and everyone here was right in guiding me to start over with the casting (Ponsetti method.... done by a qualified doctor that does it to a 'tee'... not there own version of it!!!) I have been SO happy that I followed the advice that I got from this support group.... Please, Please listen to them and go get another opinion from a different Ponsetti doctor... I know it is alot of running around but it is well worth it in the long run because the affects of surgery are life long for your little guy... his little feet are so important and you don't want to have problems later from doing something that you could have avoided!! Best of luck to you and your family!! If you let everyone know where you are located you can bet you will have help finding a qualified doctor in no time!!! Cancel surgery until you have more time to research this!! Our prayers are with you .... teenertot wrote: is one...just this week ..he's bilateral Cf and has had 17 sets of casts and the DBB a few weeks ago the dr told us that he wanted to do a soft tissue release and another tenotomy...and put in a pin in his foot...I don't really like the idea...but we are scheduled for this week. Anyone else had this? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 16, 2005 Report Share Posted August 16, 2005 Hello I can see why you would be concerned about having a procedure done especially knowing that the Doctor wants to put pins in your little guys feet. I was in a situation that I thought we were going to have to do surgery and I got on this support group and put my story out there and everyone here was right in guiding me to start over with the casting (Ponsetti method.... done by a qualified doctor that does it to a 'tee'... not there own version of it!!!) I have been SO happy that I followed the advice that I got from this support group.... Please, Please listen to them and go get another opinion from a different Ponsetti doctor... I know it is alot of running around but it is well worth it in the long run because the affects of surgery are life long for your little guy... his little feet are so important and you don't want to have problems later from doing something that you could have avoided!! Best of luck to you and your family!! If you let everyone know where you are located you can bet you will have help finding a qualified doctor in no time!!! Cancel surgery until you have more time to research this!! Our prayers are with you .... teenertot wrote: is one...just this week ..he's bilateral Cf and has had 17 sets of casts and the DBB a few weeks ago the dr told us that he wanted to do a soft tissue release and another tenotomy...and put in a pin in his foot...I don't really like the idea...but we are scheduled for this week. Anyone else had this? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 16, 2005 Report Share Posted August 16, 2005 I just saw your post and I see you have already received several responses. I would also like to throw in from a different perspective, that of an adult who DID have clubfoot surgery as a baby. That one surgery usually leads to more to continue making other corrections, parents are often mislead by the doctors who claim that this will fix it but then they come back to say, well now we need to do this one more procedure. All in all, I had 4 surgeries which is minimal compared to some people I have talked to who have had on the upside of 15-20+. The other downside to surgery is the creation of scar tissue and the usual early onset of arthritis. I have a lot of pain and stiffness in my foot now as an adult. I would urge you to please seek a second opinion from a highly skilled Ponseti doctor. This support group has a lot of people from all over the country, if you let us know where you are located we will surely be able to help direct you to a well qualified doctor who can help your son. Thanks, > is one...just this week ..he's bilateral Cf and has had 17 sets > of casts and the DBB a few weeks ago the dr told us that he wanted to > do a soft tissue release and another tenotomy...and put in a pin in his > foot...I don't really like the idea...but we are scheduled for this > week. Anyone else had this? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 16, 2005 Report Share Posted August 16, 2005 I just saw your post and I see you have already received several responses. I would also like to throw in from a different perspective, that of an adult who DID have clubfoot surgery as a baby. That one surgery usually leads to more to continue making other corrections, parents are often mislead by the doctors who claim that this will fix it but then they come back to say, well now we need to do this one more procedure. All in all, I had 4 surgeries which is minimal compared to some people I have talked to who have had on the upside of 15-20+. The other downside to surgery is the creation of scar tissue and the usual early onset of arthritis. I have a lot of pain and stiffness in my foot now as an adult. I would urge you to please seek a second opinion from a highly skilled Ponseti doctor. This support group has a lot of people from all over the country, if you let us know where you are located we will surely be able to help direct you to a well qualified doctor who can help your son. Thanks, > is one...just this week ..he's bilateral Cf and has had 17 sets > of casts and the DBB a few weeks ago the dr told us that he wanted to > do a soft tissue release and another tenotomy...and put in a pin in his > foot...I don't really like the idea...but we are scheduled for this > week. Anyone else had this? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 17, 2005 Report Share Posted August 17, 2005 Since is one year old already, I would suggest to you that you consider flying to St. Louis, MO to have him seen by Dr. Dobbs at the Shriners Hospital there. Angel Flights is a volunteer pilot organization that would be able to help you get to St. Louis for treatment for free. Many families here have used Angel Flights and lots of families here are patients of Dr. Dobbs as well. The reason that I suggest Dobbs to you is that he is the closest of the *highly experienced* doctors. Since is already one, your best bet in the interest of time is to get to a doctor who is well-versed in the method and has treated older children with success. It's a fantastic perk that Dr. Dobbs practices at the Shriners as well. I know the thought of traveling for care may seem overwhelming to you- especially if you have other children, a full-time job, etc. But lots of families here have done it, some traveling across the world!, and we can help you figure out how to get your son in the best hands. Regards, & (3-16-00, left clubfoot) > > We live in Mississippi....south central..thinkthe > nearest shriner's is in Shreveport if I'm correct...we > don't know of all our resources that are available. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 17, 2005 Report Share Posted August 17, 2005 Since is one year old already, I would suggest to you that you consider flying to St. Louis, MO to have him seen by Dr. Dobbs at the Shriners Hospital there. Angel Flights is a volunteer pilot organization that would be able to help you get to St. Louis for treatment for free. Many families here have used Angel Flights and lots of families here are patients of Dr. Dobbs as well. The reason that I suggest Dobbs to you is that he is the closest of the *highly experienced* doctors. Since is already one, your best bet in the interest of time is to get to a doctor who is well-versed in the method and has treated older children with success. It's a fantastic perk that Dr. Dobbs practices at the Shriners as well. I know the thought of traveling for care may seem overwhelming to you- especially if you have other children, a full-time job, etc. But lots of families here have done it, some traveling across the world!, and we can help you figure out how to get your son in the best hands. Regards, & (3-16-00, left clubfoot) > > We live in Mississippi....south central..thinkthe > nearest shriner's is in Shreveport if I'm correct...we > don't know of all our resources that are available. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 17, 2005 Report Share Posted August 17, 2005 I couldn't agree more, you will find Dr. Dobbs to be an excellent and compassionate physician and I believe also the most highly skilled clubfoot doctor nearest to you. As said, it may seem daunting to travel but there are so many wonderful options available to help with this, there is also a Mc house near the Shriner's hospital in St. Louis. Best wishes, > > > > We live in Mississippi....south central..thinkthe > > nearest shriner's is in Shreveport if I'm correct...we > > don't know of all our resources that are available. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 17, 2005 Report Share Posted August 17, 2005 I couldn't agree more, you will find Dr. Dobbs to be an excellent and compassionate physician and I believe also the most highly skilled clubfoot doctor nearest to you. As said, it may seem daunting to travel but there are so many wonderful options available to help with this, there is also a Mc house near the Shriner's hospital in St. Louis. Best wishes, > > > > We live in Mississippi....south central..thinkthe > > nearest shriner's is in Shreveport if I'm correct...we > > don't know of all our resources that are available. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 17, 2005 Report Share Posted August 17, 2005 Another option may be Dr. sy in Atlanta. He did a great job with my daughter. Thanks, Re: aaron Since is one year old already, I would suggest to you that you consider flying to St. Louis, MO to have him seen by Dr. Dobbs at the Shriners Hospital there. Angel Flights is a volunteer pilot organization that would be able to help you get to St. Louis for treatment for free. Many families here have used Angel Flights and lots of families here are patients of Dr. Dobbs as well. The reason that I suggest Dobbs to you is that he is the closest of the *highly experienced* doctors. Since is already one, your best bet in the interest of time is to get to a doctor who is well-versed in the method and has treated older children with success. It's a fantastic perk that Dr. Dobbs practices at the Shriners as well. I know the thought of traveling for care may seem overwhelming to you- especially if you have other children, a full-time job, etc. But lots of families here have done it, some traveling across the world!, and we can help you figure out how to get your son in the best hands. Regards, & (3-16-00, left clubfoot) > > We live in Mississippi....south central..thinkthe > nearest shriner's is in Shreveport if I'm correct...we > don't know of all our resources that are available. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 17, 2005 Report Share Posted August 17, 2005 Another option may be Dr. sy in Atlanta. He did a great job with my daughter. Thanks, Re: aaron Since is one year old already, I would suggest to you that you consider flying to St. Louis, MO to have him seen by Dr. Dobbs at the Shriners Hospital there. Angel Flights is a volunteer pilot organization that would be able to help you get to St. Louis for treatment for free. Many families here have used Angel Flights and lots of families here are patients of Dr. Dobbs as well. The reason that I suggest Dobbs to you is that he is the closest of the *highly experienced* doctors. Since is already one, your best bet in the interest of time is to get to a doctor who is well-versed in the method and has treated older children with success. It's a fantastic perk that Dr. Dobbs practices at the Shriners as well. I know the thought of traveling for care may seem overwhelming to you- especially if you have other children, a full-time job, etc. But lots of families here have done it, some traveling across the world!, and we can help you figure out how to get your son in the best hands. Regards, & (3-16-00, left clubfoot) > > We live in Mississippi....south central..thinkthe > nearest shriner's is in Shreveport if I'm correct...we > don't know of all our resources that are available. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 17, 2005 Report Share Posted August 17, 2005 Another option may be Dr. sy in Atlanta. He did a great job with my daughter. Thanks, Re: aaron Since is one year old already, I would suggest to you that you consider flying to St. Louis, MO to have him seen by Dr. Dobbs at the Shriners Hospital there. Angel Flights is a volunteer pilot organization that would be able to help you get to St. Louis for treatment for free. Many families here have used Angel Flights and lots of families here are patients of Dr. Dobbs as well. The reason that I suggest Dobbs to you is that he is the closest of the *highly experienced* doctors. Since is already one, your best bet in the interest of time is to get to a doctor who is well-versed in the method and has treated older children with success. It's a fantastic perk that Dr. Dobbs practices at the Shriners as well. I know the thought of traveling for care may seem overwhelming to you- especially if you have other children, a full-time job, etc. But lots of families here have done it, some traveling across the world!, and we can help you figure out how to get your son in the best hands. Regards, & (3-16-00, left clubfoot) > > We live in Mississippi....south central..thinkthe > nearest shriner's is in Shreveport if I'm correct...we > don't know of all our resources that are available. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 17, 2005 Report Share Posted August 17, 2005 Another option may be Dr. sy in Atlanta. He did a great job with my daughter. Thanks, Re: aaron Since is one year old already, I would suggest to you that you consider flying to St. Louis, MO to have him seen by Dr. Dobbs at the Shriners Hospital there. Angel Flights is a volunteer pilot organization that would be able to help you get to St. Louis for treatment for free. Many families here have used Angel Flights and lots of families here are patients of Dr. Dobbs as well. The reason that I suggest Dobbs to you is that he is the closest of the *highly experienced* doctors. Since is already one, your best bet in the interest of time is to get to a doctor who is well-versed in the method and has treated older children with success. It's a fantastic perk that Dr. Dobbs practices at the Shriners as well. I know the thought of traveling for care may seem overwhelming to you- especially if you have other children, a full-time job, etc. But lots of families here have done it, some traveling across the world!, and we can help you figure out how to get your son in the best hands. Regards, & (3-16-00, left clubfoot) > > We live in Mississippi....south central..thinkthe > nearest shriner's is in Shreveport if I'm correct...we > don't know of all our resources that are available. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 17, 2005 Report Share Posted August 17, 2005 I would have to second what said. We have been seeing Dr. Dobbs for four years and he is a wonderful Dr. And he also has experience working with older kids. I know it sounds like a lot flying off or driving that far to see a doctor. But if you don't do it know you will always wonder what would have happened if you hadn't. Pam and (8-12-01) > > > > We live in Mississippi....south central..thinkthe > > nearest shriner's is in Shreveport if I'm correct...we > > don't know of all our resources that are available. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 17, 2005 Report Share Posted August 17, 2005 I would have to second what said. We have been seeing Dr. Dobbs for four years and he is a wonderful Dr. And he also has experience working with older kids. I know it sounds like a lot flying off or driving that far to see a doctor. But if you don't do it know you will always wonder what would have happened if you hadn't. Pam and (8-12-01) > > > > We live in Mississippi....south central..thinkthe > > nearest shriner's is in Shreveport if I'm correct...we > > don't know of all our resources that are available. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 17, 2005 Report Share Posted August 17, 2005 I would have to second what said. We have been seeing Dr. Dobbs for four years and he is a wonderful Dr. And he also has experience working with older kids. I know it sounds like a lot flying off or driving that far to see a doctor. But if you don't do it know you will always wonder what would have happened if you hadn't. Pam and (8-12-01) > > > > We live in Mississippi....south central..thinkthe > > nearest shriner's is in Shreveport if I'm correct...we > > don't know of all our resources that are available. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 17, 2005 Report Share Posted August 17, 2005 I would have to second what said. We have been seeing Dr. Dobbs for four years and he is a wonderful Dr. And he also has experience working with older kids. I know it sounds like a lot flying off or driving that far to see a doctor. But if you don't do it know you will always wonder what would have happened if you hadn't. Pam and (8-12-01) > > > > We live in Mississippi....south central..thinkthe > > nearest shriner's is in Shreveport if I'm correct...we > > don't know of all our resources that are available. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 18, 2005 Report Share Posted August 18, 2005 We also see Dr. sy in Atlanta and were pleased with his treatment. Please let me know if you have any questions. Louisa Rachael 6-27-99 Zoe 2-22-04 RCF FAB Nights > > > > We live in Mississippi....south central..thinkthe > > nearest shriner's is in Shreveport if I'm correct...we > > don't know of all our resources that are available. > > > > > > Quote Link to comment Share on other sites More sharing options...
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