Guest guest Posted August 31, 2004 Report Share Posted August 31, 2004 Welcome to the group! I just thought I would also throw in my two cents and advise you to please at least postpone, if not cancel this surgery. A tenotomy is a simple in office procedure that involves cutting the Achilles Tendon. The incision is so small that it doesn't even require stitches. Any surgery that involves pins is going to leave scar tissue and could potentially cause problems later in life. Many, many children have had clubfoot surgery and grow up to live normal, pain free lives, but there are also many stories of children who have had clubfoot surgery and are not so lucky. I personally know a man who had infant clubfoot surgery and suffers terrible pain to this day at age 38 because of it. He only had one surgery and his feet were considerred to be corrected, but he still lives with pain. The Ponseti Method can correct 95% of clubfeet without surgery (other than the in office tenotomy) and, in my humble opinion, is worth every mile driven to see a qualified doctor. My daughter was born with a severe left clubfoot, and we were told she would require surgery by three different doctors. We took her from Pennsylvania to Iowa city to see Dr. Ponseti and she now has a fully corrected, functional, pain free foot. At almost three years of age she is able to do anything any other child can do and it is very difficult to tell her clubfoot from her normal foot. She has a slight size difference, but that is considered normal in clubfoot and it's not even enough to warrant different size shoes. Please consider all of your options before going through with the surgery. As someone else said, if you postpone, nothing will be lost by rescheduling later. If you go ahead with surgery now, you can't undo it later. Good luck! Jen & Livie (10-18-01 severe left clubfoot) Re: I'm new > Welcome to the board!!! What state are you located in? Maybe there > is a Ponseti doctor relatively close or not too long driving > distance. I recommend a 2nd opinion as soon as you can. Most > persons on this board will probably agree that no surgeries is the > way to go. What type of casting was done? Did they change the casts > every week? The achilles tendon surgery (tenotomy)is common with the > Ponseti method also, but most of the time it is the only one. Some > persons drive up to 10 hours (or more)just to see an authorized > Ponseti doctor. If you can prevent future surgeries and future > potential feet problems it is well worth the trip. Friday is close > by, but maybe you can postpone the surgery so you can do further > research. Please let us know what you decide and keep us posted. > Good luck to your little one! > P.S. It is not too late to start the Ponseti method now. Thanks for the welcome. We live in Maine and the closest trained Ponseti doctors are in Massachusetts. It's not that far, but if we have to go weekly it is. They changed his casts weekly and his legs and feet are much improved. The problem is his achilles tendons are both too tight and the bones in his feet are misaligned. This is what they'll be fixing with the surgery. How is this surgery different from the tenotomy? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 31, 2004 Report Share Posted August 31, 2004 Welcome to the group! I just thought I would also throw in my two cents and advise you to please at least postpone, if not cancel this surgery. A tenotomy is a simple in office procedure that involves cutting the Achilles Tendon. The incision is so small that it doesn't even require stitches. Any surgery that involves pins is going to leave scar tissue and could potentially cause problems later in life. Many, many children have had clubfoot surgery and grow up to live normal, pain free lives, but there are also many stories of children who have had clubfoot surgery and are not so lucky. I personally know a man who had infant clubfoot surgery and suffers terrible pain to this day at age 38 because of it. He only had one surgery and his feet were considerred to be corrected, but he still lives with pain. The Ponseti Method can correct 95% of clubfeet without surgery (other than the in office tenotomy) and, in my humble opinion, is worth every mile driven to see a qualified doctor. My daughter was born with a severe left clubfoot, and we were told she would require surgery by three different doctors. We took her from Pennsylvania to Iowa city to see Dr. Ponseti and she now has a fully corrected, functional, pain free foot. At almost three years of age she is able to do anything any other child can do and it is very difficult to tell her clubfoot from her normal foot. She has a slight size difference, but that is considered normal in clubfoot and it's not even enough to warrant different size shoes. Please consider all of your options before going through with the surgery. As someone else said, if you postpone, nothing will be lost by rescheduling later. If you go ahead with surgery now, you can't undo it later. Good luck! Jen & Livie (10-18-01 severe left clubfoot) Re: I'm new > Welcome to the board!!! What state are you located in? Maybe there > is a Ponseti doctor relatively close or not too long driving > distance. I recommend a 2nd opinion as soon as you can. Most > persons on this board will probably agree that no surgeries is the > way to go. What type of casting was done? Did they change the casts > every week? The achilles tendon surgery (tenotomy)is common with the > Ponseti method also, but most of the time it is the only one. Some > persons drive up to 10 hours (or more)just to see an authorized > Ponseti doctor. If you can prevent future surgeries and future > potential feet problems it is well worth the trip. Friday is close > by, but maybe you can postpone the surgery so you can do further > research. Please let us know what you decide and keep us posted. > Good luck to your little one! > P.S. It is not too late to start the Ponseti method now. Thanks for the welcome. We live in Maine and the closest trained Ponseti doctors are in Massachusetts. It's not that far, but if we have to go weekly it is. They changed his casts weekly and his legs and feet are much improved. The problem is his achilles tendons are both too tight and the bones in his feet are misaligned. This is what they'll be fixing with the surgery. How is this surgery different from the tenotomy? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 31, 2004 Report Share Posted August 31, 2004 I'd like to add my hello and welcome to the others. I'd also like to add my voice to the chorus saying to delay the scheduled surgery. I hope it doesn't feel like we're ganging up on you, but your message is one of the reasons I still hang around this message board!!8) My son is now 4 years old and finished with treatment (Ponseti) so many of the issues others are currently facing are behind us. But my heart aches to hear of babies heading into surgery and a lifetime of foot trouble when it is unnecessary in most cases. As I watch my surgery free little guy running around, and remember what his newborn feet looked like, I just want to encourage you to travel as far as you need to go to at least get that second opinion from a Ponseti trained physician. Then you'll know that you've gathered your information and made the best decision for your baby. Many people on this site have travelled huge distances for their kiddos and I have never heard one regret--just a lot of thankfulness!!! Let us know if we can help you in any way. We've all been at this decision-making point and know how hard it is. So many here have a wealth of information and will be able to provide you with an education about clubfoot like you'll never find anywhere else!!! 8) and Evan 8-17-00, bcf > My son was born with both feet clubbed and is scheduled to have > surgery this Friday. He'll had a achilles tendon release, but also > needs pins in his feet because the bones in his feet are not lined up > properly. I'm nervous about the surgery and how much pain he might be > in afterward, he's nine months old. I'm also concerned that he may > have muscle weakness and sore feet later in life, I just learned > about this after reading about the Ponseti method. No one in our > state uses the Ponseti method, although my son has had casts on his > feet since birth, so that sounds the same. > > Can you give me any words of wisdom for the surgery? Things to be > aware of ahead of time? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 31, 2004 Report Share Posted August 31, 2004 I'd like to add my hello and welcome to the others. I'd also like to add my voice to the chorus saying to delay the scheduled surgery. I hope it doesn't feel like we're ganging up on you, but your message is one of the reasons I still hang around this message board!!8) My son is now 4 years old and finished with treatment (Ponseti) so many of the issues others are currently facing are behind us. But my heart aches to hear of babies heading into surgery and a lifetime of foot trouble when it is unnecessary in most cases. As I watch my surgery free little guy running around, and remember what his newborn feet looked like, I just want to encourage you to travel as far as you need to go to at least get that second opinion from a Ponseti trained physician. Then you'll know that you've gathered your information and made the best decision for your baby. Many people on this site have travelled huge distances for their kiddos and I have never heard one regret--just a lot of thankfulness!!! Let us know if we can help you in any way. We've all been at this decision-making point and know how hard it is. So many here have a wealth of information and will be able to provide you with an education about clubfoot like you'll never find anywhere else!!! 8) and Evan 8-17-00, bcf > My son was born with both feet clubbed and is scheduled to have > surgery this Friday. He'll had a achilles tendon release, but also > needs pins in his feet because the bones in his feet are not lined up > properly. I'm nervous about the surgery and how much pain he might be > in afterward, he's nine months old. I'm also concerned that he may > have muscle weakness and sore feet later in life, I just learned > about this after reading about the Ponseti method. No one in our > state uses the Ponseti method, although my son has had casts on his > feet since birth, so that sounds the same. > > Can you give me any words of wisdom for the surgery? Things to be > aware of ahead of time? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 31, 2004 Report Share Posted August 31, 2004 I'd like to add my hello and welcome to the others. I'd also like to add my voice to the chorus saying to delay the scheduled surgery. I hope it doesn't feel like we're ganging up on you, but your message is one of the reasons I still hang around this message board!!8) My son is now 4 years old and finished with treatment (Ponseti) so many of the issues others are currently facing are behind us. But my heart aches to hear of babies heading into surgery and a lifetime of foot trouble when it is unnecessary in most cases. As I watch my surgery free little guy running around, and remember what his newborn feet looked like, I just want to encourage you to travel as far as you need to go to at least get that second opinion from a Ponseti trained physician. Then you'll know that you've gathered your information and made the best decision for your baby. Many people on this site have travelled huge distances for their kiddos and I have never heard one regret--just a lot of thankfulness!!! Let us know if we can help you in any way. We've all been at this decision-making point and know how hard it is. So many here have a wealth of information and will be able to provide you with an education about clubfoot like you'll never find anywhere else!!! 8) and Evan 8-17-00, bcf > My son was born with both feet clubbed and is scheduled to have > surgery this Friday. He'll had a achilles tendon release, but also > needs pins in his feet because the bones in his feet are not lined up > properly. I'm nervous about the surgery and how much pain he might be > in afterward, he's nine months old. I'm also concerned that he may > have muscle weakness and sore feet later in life, I just learned > about this after reading about the Ponseti method. No one in our > state uses the Ponseti method, although my son has had casts on his > feet since birth, so that sounds the same. > > Can you give me any words of wisdom for the surgery? Things to be > aware of ahead of time? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 31, 2004 Report Share Posted August 31, 2004 The problem is his achilles tendons are both too tight and > the bones in his feet are misaligned. This is what they'll be fixing > with the surgery. Hi, and welcome. We are glad you found the group! I just wanted to reiterate what the others have said, and also say, that the 'misaligned bones' they are telling you about no doubt is what you would find in any uncorrected clubfoot. That just means that the casting that they have done hasn't been successful. It doesn't mean it can't be, if done properly. Your baby is still young enough that you can try Ponseti method casting, which is compeltely different from 'traditional' casting, and is successful in more than 90% of cases, no matter how severe. Many, many of us went through ineffective casting with first doctors, and saw the difference firsthand. We, too, were told by our first doctor that casting hadn't worked completely, and that our child would need surgery with pins, etc. At that point, we followed our gut feeling that this wasn't the best outcome we could have, and went halfway across the country to Iowa. Once there, all it took was a couple of casts, done in a completely different (and painless) way, and our daughter's foot was corrected. She is now 4 yrs old, and has a beautiful, straight, completely functional foot. We don't mean to overhwelm you with unsolicited advice, but want you to have the chance to investigate your options before you go ahead with the major surgery, which can't be undone. It has been found that a nonsurgically treated foot is much less likely to be stiff and painful later in life. If you have any questions we can help with, such as how you might manage going somewhere else for another opinion (many of us have done it!) please ask away. It might seem impossible to contemplate changing course, but it CAN be done.. and you would be surprised how easily, even if it means going to Iowa for a couple of weeks. Here is the main site for info: http://www.vh.org/pediatric/patient/orthopaedics/clubfeet/index.html Here is a site showing babies whose first treatment was unsuccessful, who then switched methods: http://www.lifebridgehealth.org/sinaibody.cfm?id=1530 Here is a very detailed site with photos of a child's progress from beginning to end. Her doctor is in NYC: http://hometown.aol.com/vc11/week6.htm Here's a roundup of many different sites and journal info, etc. http://pages.ivillage.com/ponseti_links/ Hope this helps. We're interested and want to help if we can. and Claire Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 31, 2004 Report Share Posted August 31, 2004 I have to agree with what others are saying. My daughters bones weren't aligned either but the Ponseti Method took care of that after having the tenotomy done. You would never know by looking at the x-rays that hers were misaligned unless you were to look at the first set of x-rays and do a comparison. -- In nosurgery4clubfoot , " onemorebb " wrote: > My son was born with both feet clubbed and is scheduled to have > surgery this Friday. He'll had a achilles tendon release, but also > needs pins in his feet because the bones in his feet are not lined up > properly. I'm nervous about the surgery and how much pain he might be > in afterward, he's nine months old. I'm also concerned that he may > have muscle weakness and sore feet later in life, I just learned > about this after reading about the Ponseti method. No one in our > state uses the Ponseti method, although my son has had casts on his > feet since birth, so that sounds the same. > > Can you give me any words of wisdom for the surgery? Things to be > aware of ahead of time? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 31, 2004 Report Share Posted August 31, 2004 I have to agree with what others are saying. My daughters bones weren't aligned either but the Ponseti Method took care of that after having the tenotomy done. You would never know by looking at the x-rays that hers were misaligned unless you were to look at the first set of x-rays and do a comparison. -- In nosurgery4clubfoot , " onemorebb " wrote: > My son was born with both feet clubbed and is scheduled to have > surgery this Friday. He'll had a achilles tendon release, but also > needs pins in his feet because the bones in his feet are not lined up > properly. I'm nervous about the surgery and how much pain he might be > in afterward, he's nine months old. I'm also concerned that he may > have muscle weakness and sore feet later in life, I just learned > about this after reading about the Ponseti method. No one in our > state uses the Ponseti method, although my son has had casts on his > feet since birth, so that sounds the same. > > Can you give me any words of wisdom for the surgery? Things to be > aware of ahead of time? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 31, 2004 Report Share Posted August 31, 2004 I have to agree with what others are saying. My daughters bones weren't aligned either but the Ponseti Method took care of that after having the tenotomy done. You would never know by looking at the x-rays that hers were misaligned unless you were to look at the first set of x-rays and do a comparison. -- In nosurgery4clubfoot , " onemorebb " wrote: > My son was born with both feet clubbed and is scheduled to have > surgery this Friday. He'll had a achilles tendon release, but also > needs pins in his feet because the bones in his feet are not lined up > properly. I'm nervous about the surgery and how much pain he might be > in afterward, he's nine months old. I'm also concerned that he may > have muscle weakness and sore feet later in life, I just learned > about this after reading about the Ponseti method. No one in our > state uses the Ponseti method, although my son has had casts on his > feet since birth, so that sounds the same. > > Can you give me any words of wisdom for the surgery? Things to be > aware of ahead of time? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 31, 2004 Report Share Posted August 31, 2004 I am just going to add my two cents here. I COMPLETELY AGREE WITH A 2ND OPINION! Surgery is not reversible. The " misaligned bones " are a part of clubfoot. Aligning them is one of the main goals of treatment, if not the main medical goal. From what I was told by our Ponseti Dr., The bones are not aligned because of the way the tendon is pulling them and this is normal in uncorrected clubfoot. Stretch the tendons and WHA-LA! The bones align properly allowing the foot to bend almost normally. When I finally took my daughter to a Ponseti Certified doctor, her bones were not aligned and therefore her foot still did not bend properly..much to my surprise. He corrected it with 2 casts. Yes, I said 2 casts, Ponseti style (don't misunderstand, these were not the only 2 casts she ever had but they were the last ones!). It sounds to me like your doctor is trying to make you feel like your case of clubfoot is more severe than normal if he is citing " misaligned bones " as the reason for surgery. It's not a good enough reason. Just to re-iterate what has already been said here, it sounds like the casting has not been done properly. Even if you have to go every week, it will only be for a few more times. After the brace you probably won't even have to see the doc every month. Sorry to repeat what has already been said. I am just rooting for you to make the drive and get another opinion. Freeman Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 31, 2004 Report Share Posted August 31, 2004 I am just going to add my two cents here. I COMPLETELY AGREE WITH A 2ND OPINION! Surgery is not reversible. The " misaligned bones " are a part of clubfoot. Aligning them is one of the main goals of treatment, if not the main medical goal. From what I was told by our Ponseti Dr., The bones are not aligned because of the way the tendon is pulling them and this is normal in uncorrected clubfoot. Stretch the tendons and WHA-LA! The bones align properly allowing the foot to bend almost normally. When I finally took my daughter to a Ponseti Certified doctor, her bones were not aligned and therefore her foot still did not bend properly..much to my surprise. He corrected it with 2 casts. Yes, I said 2 casts, Ponseti style (don't misunderstand, these were not the only 2 casts she ever had but they were the last ones!). It sounds to me like your doctor is trying to make you feel like your case of clubfoot is more severe than normal if he is citing " misaligned bones " as the reason for surgery. It's not a good enough reason. Just to re-iterate what has already been said here, it sounds like the casting has not been done properly. Even if you have to go every week, it will only be for a few more times. After the brace you probably won't even have to see the doc every month. Sorry to repeat what has already been said. I am just rooting for you to make the drive and get another opinion. Freeman Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 31, 2004 Report Share Posted August 31, 2004 I am just going to add my two cents here. I COMPLETELY AGREE WITH A 2ND OPINION! Surgery is not reversible. The " misaligned bones " are a part of clubfoot. Aligning them is one of the main goals of treatment, if not the main medical goal. From what I was told by our Ponseti Dr., The bones are not aligned because of the way the tendon is pulling them and this is normal in uncorrected clubfoot. Stretch the tendons and WHA-LA! The bones align properly allowing the foot to bend almost normally. When I finally took my daughter to a Ponseti Certified doctor, her bones were not aligned and therefore her foot still did not bend properly..much to my surprise. He corrected it with 2 casts. Yes, I said 2 casts, Ponseti style (don't misunderstand, these were not the only 2 casts she ever had but they were the last ones!). It sounds to me like your doctor is trying to make you feel like your case of clubfoot is more severe than normal if he is citing " misaligned bones " as the reason for surgery. It's not a good enough reason. Just to re-iterate what has already been said here, it sounds like the casting has not been done properly. Even if you have to go every week, it will only be for a few more times. After the brace you probably won't even have to see the doc every month. Sorry to repeat what has already been said. I am just rooting for you to make the drive and get another opinion. Freeman Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 31, 2004 Report Share Posted August 31, 2004 > What state are you in? Please know that at 9 months your child could still > be corrected with the Ponseti Method and avoid surgery. The casts applied in > the Ponseti Method are nothing like the traditional casting your son has > propably had. Your childs feet can be corrected it is not too late. We > would love to assist you if you decide to take the nonsurgery route. Let us > know. > > Thanks . We live in Maine and after looking at the list of physicians on Dr. Ponseti's website the closest would be in Boston, MA. I'm not sure our insurance would cover this, but I'll look into it tomorrow. I could use all the help I can get, I can't believe I never heard of this before yesterday. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 31, 2004 Report Share Posted August 31, 2004 > Welcome to this board! I can only imagine how nervous you must feel > about an impending surgery. Many others on this board started the > Ponseti method later as an alternative to impending surgeries > suggested by their original (non Ponseti) doctors. Just know that it > is not too late to seek a second opinion prior to going through with > the surgery. There are Shriners Hospitals (whose services are free) > that have qualified Ponseti doctors. Also, Dr. Ponseti himself will > answer emails if you have any questions or need a recommendation for > a doctor close to you. There are organizations such as Angel Flights > that offer free flights for those in need of medical services as well > as organizations like The Mc House that will provide > accomodations during treatment for a small fee. > > There may be doctors in your state who are in fact practicing the > Ponseti Method but are not yet listed on Dr. Ponseti's website. > Please let us know where you are located so that we can help steer > you in the right direction. > > Daiga and Owen, 02/04/03 > Unilateral LCF, FAB 14/24 I'm in Maine. Do you know if there are any doctors here practicing the Ponseti Method? I didn't know Shriner's Hospitals were free. There is one in Massachusetts with a practicing doctor, we could go there. Thanks so much for the advice. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 31, 2004 Report Share Posted August 31, 2004 > Um, cancel the surgery and look for a Ponseti approved doctor who can examine the feet and give another opinion??? Drastic, but it's a viable option that I would jump at knowing now what I didn't know then. Not all casting is equal, and nine months of casting is way off base. There are many agencies who can help you travel to a Ponseti doctor, or even Dr. Ponseti himself prior to agreeing to this operation. Delaying the surgery by a few weeks won't matter a whole lot would it, to give you time to research your options? I keep saying it but it's true - I went through a very bad treatment process with my 1st son's club feet and my ignorance was to blame. He wore casts for 6 months, then some other stuff. He pays the price every day for my own ignorance. My 2nd son had cf too and I went directly to Dr. Ponseti who fixed him in a matter of a few weeks. Please look further before you agree to all this. > > sincerely, > s. Thanks. I think that's what we're going to do. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 31, 2004 Report Share Posted August 31, 2004 > Hi, and welcome. We are glad you found the group! > > I just wanted to reiterate what the others have said, and also say, > that the 'misaligned bones' they are telling you about no doubt is > what you would find in any uncorrected clubfoot. That just means that > the casting that they have done hasn't been successful. It doesn't > mean it can't be, if done properly. > > Your baby is still young enough that you can try Ponseti method > casting, which is compeltely different from 'traditional' casting, > and is successful in more than 90% of cases, no matter how severe. > Many, many of us went through ineffective casting with first doctors, > and saw the difference firsthand. > > We, too, were told by our first doctor that casting hadn't worked > completely, and that our child would need surgery with pins, etc. At > that point, we followed our gut feeling that this wasn't the best > outcome we could have, and went halfway across the country to Iowa. > Once there, all it took was a couple of casts, done in a completely > different (and painless) way, and our daughter's foot was corrected. > She is now 4 yrs old, and has a beautiful, straight, completely > functional foot. > > We don't mean to overhwelm you with unsolicited advice, but want you > to have the chance to investigate your options before you go ahead > with the major surgery, which can't be undone. It has been found that > a nonsurgically treated foot is much less likely to be stiff and > painful later in life. > > If you have any questions we can help with, such as how you might > manage going somewhere else for another opinion (many of us have done > it!) please ask away. It might seem impossible to contemplate > changing course, but it CAN be done.. and you would be surprised how > easily, even if it means going to Iowa for a couple of weeks. > > Here is the main site for info: > http://www.vh.org/pediatric/patient/orthopaedics/clubfeet/index.html > > Here is a site showing babies whose first treatment was unsuccessful, > who then switched methods: > http://www.lifebridgehealth.org/sinaibody.cfm?id=1530 > > Here is a very detailed site with photos of a child's progress from > beginning to end. Her doctor is in NYC: > http://hometown.aol.com/vc11/week6.htm > > Here's a roundup of many different sites and journal info, etc. > http://pages.ivillage.com/ponseti_links/ > > Hope this helps. We're interested and want to help if we can. > > and Claire Thank you so much for the websites, they are so helpful. It's a little overwhelming right now, but I'm so glad to have found out about this method before we went through surgery. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 31, 2004 Report Share Posted August 31, 2004 Take the drive just once for a second opinion. All casting is definitely not equal. 's bones were misaligned in his feet also, but his Ponseti qualified Dr. took care of this with casting. I know we seem rather passionate, but many of us were told their child would have to have surgery. My son is now 3 and running all over the place. Good luck to you. Pam and (8-12-01) > > Welcome to the board!!! What state are you located in? Maybe > there > > is a Ponseti doctor relatively close or not too long driving > > distance. I recommend a 2nd opinion as soon as you can. Most > > persons on this board will probably agree that no surgeries is the > > way to go. What type of casting was done? Did they change the > casts > > every week? The achilles tendon surgery (tenotomy)is common with > the > > Ponseti method also, but most of the time it is the only one. Some > > persons drive up to 10 hours (or more)just to see an authorized > > Ponseti doctor. If you can prevent future surgeries and future > > potential feet problems it is well worth the trip. Friday is close > > by, but maybe you can postpone the surgery so you can do further > > research. Please let us know what you decide and keep us posted. > > Good luck to your little one! > > P.S. It is not too late to start the Ponseti method now. > > > Thanks for the welcome. We live in Maine and the closest trained > Ponseti doctors are in Massachusetts. It's not that far, but if we > have to go weekly it is. > > They changed his casts weekly and his legs and feet are much > improved. The problem is his achilles tendons are both too tight and > the bones in his feet are misaligned. This is what they'll be fixing > with the surgery. > > How is this surgery different from the tenotomy? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 1, 2004 Report Share Posted September 1, 2004 > I am just going to add my two cents here. I COMPLETELY AGREE WITH A 2ND > OPINION! Surgery is not reversible. > The " misaligned bones " are a part of clubfoot. Aligning them is one of the > main goals of treatment, if not the main medical goal. From what I was told by > our Ponseti Dr., The bones are not aligned because of the way the tendon is > pulling them and this is normal in uncorrected clubfoot. Stretch the tendons > and WHA-LA! The bones align properly allowing the foot to bend almost normally. > When I finally took my daughter to a Ponseti Certified doctor, her bones > were not aligned and therefore her foot still did not bend properly..much to my > surprise. He corrected it with 2 casts. Yes, I said 2 casts, Ponseti style > (don't misunderstand, these were not the only 2 casts she ever had but they were > the last ones!). > It sounds to me like your doctor is trying to make you feel like your case of > clubfoot is more severe than normal if he is citing " misaligned bones " as the > reason for surgery. It's not a good enough reason. > Just to re-iterate what has already been said here, it sounds like the > casting has not been done properly. Even if you have to go every week, it will only > be for a few more times. After the brace you probably won't even have to see > the doc every month. > Sorry to repeat what has already been said. I am just rooting for you to make > the drive and get another opinion. > > Freeman Thanks . I'm cancelling the surgery today and we're going to give the Ponseti method a try. I certainly don't want to subject my baby to surgery needlessly. Thanks for everyone's feedback. If anyone knows anything about the doctors in Massachusetts, please let me know. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 1, 2004 Report Share Posted September 1, 2004 > I am just going to add my two cents here. I COMPLETELY AGREE WITH A 2ND > OPINION! Surgery is not reversible. > The " misaligned bones " are a part of clubfoot. Aligning them is one of the > main goals of treatment, if not the main medical goal. From what I was told by > our Ponseti Dr., The bones are not aligned because of the way the tendon is > pulling them and this is normal in uncorrected clubfoot. Stretch the tendons > and WHA-LA! The bones align properly allowing the foot to bend almost normally. > When I finally took my daughter to a Ponseti Certified doctor, her bones > were not aligned and therefore her foot still did not bend properly..much to my > surprise. He corrected it with 2 casts. Yes, I said 2 casts, Ponseti style > (don't misunderstand, these were not the only 2 casts she ever had but they were > the last ones!). > It sounds to me like your doctor is trying to make you feel like your case of > clubfoot is more severe than normal if he is citing " misaligned bones " as the > reason for surgery. It's not a good enough reason. > Just to re-iterate what has already been said here, it sounds like the > casting has not been done properly. Even if you have to go every week, it will only > be for a few more times. After the brace you probably won't even have to see > the doc every month. > Sorry to repeat what has already been said. I am just rooting for you to make > the drive and get another opinion. > > Freeman Thanks . I'm cancelling the surgery today and we're going to give the Ponseti method a try. I certainly don't want to subject my baby to surgery needlessly. Thanks for everyone's feedback. If anyone knows anything about the doctors in Massachusetts, please let me know. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 1, 2004 Report Share Posted September 1, 2004 > I am just going to add my two cents here. I COMPLETELY AGREE WITH A 2ND > OPINION! Surgery is not reversible. > The " misaligned bones " are a part of clubfoot. Aligning them is one of the > main goals of treatment, if not the main medical goal. From what I was told by > our Ponseti Dr., The bones are not aligned because of the way the tendon is > pulling them and this is normal in uncorrected clubfoot. Stretch the tendons > and WHA-LA! The bones align properly allowing the foot to bend almost normally. > When I finally took my daughter to a Ponseti Certified doctor, her bones > were not aligned and therefore her foot still did not bend properly..much to my > surprise. He corrected it with 2 casts. Yes, I said 2 casts, Ponseti style > (don't misunderstand, these were not the only 2 casts she ever had but they were > the last ones!). > It sounds to me like your doctor is trying to make you feel like your case of > clubfoot is more severe than normal if he is citing " misaligned bones " as the > reason for surgery. It's not a good enough reason. > Just to re-iterate what has already been said here, it sounds like the > casting has not been done properly. Even if you have to go every week, it will only > be for a few more times. After the brace you probably won't even have to see > the doc every month. > Sorry to repeat what has already been said. I am just rooting for you to make > the drive and get another opinion. > > Freeman Thanks . I'm cancelling the surgery today and we're going to give the Ponseti method a try. I certainly don't want to subject my baby to surgery needlessly. Thanks for everyone's feedback. If anyone knows anything about the doctors in Massachusetts, please let me know. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 1, 2004 Report Share Posted September 1, 2004 It sounds as though you have made up your mind about choosing the Ponseti method and canceling surgery. Don't be upset with yourselves. Many of us were in the same boat. What if we did this, and only if we had known, how come we didn't reasearch before, etc. But you have now and that is the important thing. You move forward from here and try not to dwell on the past. Although it is very difficult because I am in that situation now. We were using the Ponseti method from day one, but our first doctor wasn't quite practicing it correctly. All the red flags were there, but we were naive and continued with him until she was 5 months. We have recently switched to Dr. Herzenberg in Baltimore and we couldn't be happier. Everyday, I say to myself if only I had known, etc, etc. I am still apologizing to my daughter for making her start all over again, but it is much better than the alternative in the long run and knowing that helps me get through this transition. So don't be so hard on yourselves and you will get through this. Good luck and keep us posted. and bcf 3/2/04 (2nd cast, 2nd go-around) > > Welcome to the board!!! What state are you located in? Maybe > there > > is a Ponseti doctor relatively close or not too long driving > > distance. I recommend a 2nd opinion as soon as you can. Most > > persons on this board will probably agree that no surgeries is the > > way to go. What type of casting was done? Did they change the > casts > > every week? The achilles tendon surgery (tenotomy)is common with > the > > Ponseti method also, but most of the time it is the only one. Some > > persons drive up to 10 hours (or more)just to see an authorized > > Ponseti doctor. If you can prevent future surgeries and future > > potential feet problems it is well worth the trip. Friday is close > > by, but maybe you can postpone the surgery so you can do further > > research. Please let us know what you decide and keep us posted. > > Good luck to your little one! > > P.S. It is not too late to start the Ponseti method now. > > > Thanks for the welcome. We live in Maine and the closest trained > Ponseti doctors are in Massachusetts. It's not that far, but if we > have to go weekly it is. > > They changed his casts weekly and his legs and feet are much > improved. The problem is his achilles tendons are both too tight and > the bones in his feet are misaligned. This is what they'll be fixing > with the surgery. > > How is this surgery different from the tenotomy? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 1, 2004 Report Share Posted September 1, 2004 I am so pleased/relieved you have made the decision to cancel the surgery! Please keep us updated on who you decide to see and how everything goes. I saw another e-mail on the board with a doctor in Boston practicing the method. If you ever have questions, we are all here for you and your family!!! Louisa 6-27-99 Zoe 2-22-04 Right Clubfoot FAB 18/7 > > I am just going to add my two cents here. I COMPLETELY AGREE WITH > A 2ND > > OPINION! Surgery is not reversible. > > The " misaligned bones " are a part of clubfoot. Aligning them is > one of the > > main goals of treatment, if not the main medical goal. From what I > was told by > > our Ponseti Dr., The bones are not aligned because of the way the > tendon is > > pulling them and this is normal in uncorrected clubfoot. Stretch > the tendons > > and WHA-LA! The bones align properly allowing the foot to bend > almost normally. > > When I finally took my daughter to a Ponseti Certified doctor, her > bones > > were not aligned and therefore her foot still did not bend > properly..much to my > > surprise. He corrected it with 2 casts. Yes, I said 2 casts, > Ponseti style > > (don't misunderstand, these were not the only 2 casts she ever had > but they were > > the last ones!). > > It sounds to me like your doctor is trying to make you feel like > your case of > > clubfoot is more severe than normal if he is citing " misaligned > bones " as the > > reason for surgery. It's not a good enough reason. > > Just to re-iterate what has already been said here, it sounds like > the > > casting has not been done properly. Even if you have to go every > week, it will only > > be for a few more times. After the brace you probably won't even > have to see > > the doc every month. > > Sorry to repeat what has already been said. I am just rooting for > you to make > > the drive and get another opinion. > > > > Freeman > > > Thanks . I'm cancelling the surgery today and we're going to > give the Ponseti method a try. I certainly don't want to subject my > baby to surgery needlessly. Thanks for everyone's feedback. If anyone > knows anything about the doctors in Massachusetts, please let me know. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 1, 2004 Report Share Posted September 1, 2004 OK first of all let me say we're not trying to gang up on you or beat you up - your child is your child, your decison is your's to make and we respect that. With that said however, I have to say the rest of this, and while it may end up lengthy, please stay with me: I live in mid-eastern Oklahoma. We drove to Iowa City, Iowa to have our infant treated by Dr. Ponseti. That's a 10 t0 12 hour drive one-way depending on traffic and how well the kids travel that particular day. We load a cooler full of cheap pops and lunch meat then hit the road. All we buy is gas. Everett is my 11 month old son. We took him to Iowa City and stayed at the Mc House for three weeks - that is how long it took to go through a series of 5 casts. At that point he had the tenotomy people on here mention - it was a very minor thing done in about three minutes at the office with only local numbing on the heel area. My dh stayed in and watched. Then we came home with that last casts on and Everett wore those for an additional 3 weeks while his heel healed. Then we went in to the DBB. It was that simple. I " home schooled " my older child from the RMD house so he wouldn't get behind in his lessons at school. After the DBB begins, we go back to Iowa City every 3 months for a few visits, and now we go every 6 months or so for check ups only. We leave one day and come home the next day. I need to tell you about . He was born with clubfeet also, he's 6 years old now. He wore casts for 6 months and his doctor wanted to operate. He wanted to use Botox and all kinds of crap because frankly he wasn't getting any results. Why? Because he was a moron who had no business treating club feet. I was a moron too. I didn't question him. For all those months my baby went through hell. The casting was done wrong so it was all very painful. Not only that, but the doctor was doing more harm than good during those months. He was actually damaging 's clubfeet. After 6 months this doctor said " Well lets try physical therapy. " So endured about 18 months of physical therapy and AFO braces and meanwhile his feet were all balled up and crooked as ever so he couldn't walk, he could only hobble and fall down and cry with pain cuz his feet hurt him and his back hurt from wrenching it trying to walk, from the black eyes he got falling against corners and tables and every thing else. He lived on Motrin and Tylanol. And ignorant stupid me, I thought this was the way club feet was supposed to be. I STILL didn't ask enough questions. At nearly 2 yrs. old the doctor decided to operate. I had a very bad gut feeling about it. I didn't know much how to use the internet at that time but I muddled through an found this board only 2 months after it had been formed. They convinced me to send photos of to Dr. Ponseti. I did. Ponseti called me on the phone at home and said, " I need to see him as soon as possible, don't wait, just come - you find a way here and I'll see him when you get here. " No appointment, nothing, just COME NOW. So the board here told me about Angel Flights, I called them. In a week after talking to Dr. Ponseti my baby and I were on board this little plane flying to Iowa. It took a lot of doing, from Feburary to September of the year 2000, several Angel Flight trips back and forth, lots of time at the Mc House, but by the time Dr. Ponseti was finished, my son could run....remember he couldnt' even walk when we started. His feet will never be good - they suffered too much damage prior to finding the right doctor, but what Ponseti did was a lot of casting adjustments leading up to the ATTT operation which is a very MINIMAL procedure of taking one tendon and re-anchoring it in a new place. That's it. No bones were cut or broken, etc. like many surgeries do. I understand your child has a bone-alignment problem which is more complicated, but PLEASE consider talking to Dr. Ponseti about all this first. He is the Master of club feet in babies. He is SO good, he is so kind, so sweet, so generous. He doesn't let a baby cry. If the baby cries he stops work till the baby is happy. For 50 odd years he has devoted himself to club feet babies and I'm betting he's seen a case like yours before and may have insite. He at least has the experience your current doctor can't have by sheer time and devotion to one area of science. The Mcdonald houses charge a minor fee, but if you can't pay, they don't force you to. There is food there, free laundry, soap, shampoo, toilet paper, you name it. Shriners has a few Ponseti qualified doctors and they provide transportation and perhaps housing, I'm not sure. You may have to travel a long distance for this, but that's OK. If we on this board did not believe so strongly in the work of Dr. Ponseti we wouldn't be here day after day giving our testimony - it's the only way I really have to give back and make a silver lining around 's poor dark cloud of bad medical care years ago and some of the problems he still has today from it. What they say is true - if you do surgery now it cannot be reversed. Give it time - explore your options, keep an open mind. Your baby only has two feet and has to spend the rest of his life standing on those feet. Go put pebbles in your shoes today and spend the day walking on sore feet - like a pair of shoes your child will never ever be able to remove - to get an idea of what it'll be like to live on sore feet the rest of your entire life. If we didn't love you and didn't care we wouldn't bother spending our time here today. I owe both my son's ability to walk to Dr. Ponseti. s. number23@... Thanks for the welcome. We live in Maine and the closest trained Ponseti doctors are in Massachusetts. It's not that far, but if we have to go weekly it is. They changed his casts weekly and his legs and feet are much improved. The problem is his achilles tendons are both too tight and the bones in his feet are misaligned. This is what they'll be fixing with the surgery. How is this surgery different from the tenotomy? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 1, 2004 Report Share Posted September 1, 2004 Please don't let insurance stop you from getting the best care. The Ponseti Method is so much cheaper than the nine months of payments you've already spent, and much cheaper than the operation they are proposing. Ponseti will work with you on payment plans. s. Re: I'm new > What state are you in? Please know that at 9 months your child could still > be corrected with the Ponseti Method and avoid surgery. The casts applied in > the Ponseti Method are nothing like the traditional casting your son has > propably had. Your childs feet can be corrected it is not too late. We > would love to assist you if you decide to take the nonsurgery route. Let us > know. > > Thanks . We live in Maine and after looking at the list of physicians on Dr. Ponseti's website the closest would be in Boston, MA. I'm not sure our insurance would cover this, but I'll look into it tomorrow. I could use all the help I can get, I can't believe I never heard of this before yesterday. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 1, 2004 Report Share Posted September 1, 2004 Oh you just gave me goose bumps!!!!! I'm so happy! s. Thanks. I think that's what we're going to do. Quote Link to comment Share on other sites More sharing options...
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