Surgery?

[mynoritees]

ANY MOMS OPTED 2 HAVE SURGERY INSTEAD OF THE CASTING AND SHOES? IF SO HOW WAS IT?

[NightMarezMommy]

Sorry, I can't help you here...we are using the Ponseti Method. Though a tenotomy surgery is part of it, we didn't opt for the sole surgery approach. Maybe if I knew more about it, I would have opted for that option, I really just don't know. This is a scary thing for someone who still really knows clse to nothing about this!

[bradenlukemom]

My husband's parents opted for the surgery on his clubfoot 26 years ago and I can tell you today he is in so much PAIN because of it! We have fought so hard to avoid the surgery for our Luke and have gone through several Dr.'s and even a relapse at 15 months, BUT finally finding a Ponseti Certified Dr. and going through the Ponseti Method practiced as it SHOULD be has made all the difference in the world! We were told by one Dr. Luke needed the post remedial release on both feet to fix his bilateral clubbed feet and this was the only way, well, this was NOT true! He saw a Ponseti Dr., was re-casted and put in the Mitchells and has had beautiful CORRECTED feet ever since! My husband has tremendous pain in his foot, he wasn't able to play sports because it would hurt him after being on it running and such for more than an hours time. It has kept him from alot of activities he would have other wise loved to have participated in. He also will need another surgery on it before he turns 40 or he may become wheelchair or cane bound in his "golden years". I urge you to think very seriously before you choose this option. I see the pain it has caused my husband and even though it's a "quick fix", in the long run it proves different. He has no flexibility, Luke has great dorsiflex on the other hand and his feet are very loose. My husband's is stiff as a board! Just my two cents anway, but I would not choose this option unless it was the ONLY one you had! God Bless and best of luck to you!

[mamasherry79]

We did both. Casting did not work for my son.  I belive it hurt him more doing casting instead of doing surgery sooner. I honestly belive that If we would not have done surgery when we did my almost 4 year old son would not be walking.   I do not look down on anyone who choses casting. As a mother who has done both with no help with casts I was forced to do surgery. My sons surgen is the head of surgery at a childrens hospital and had also worked for many years in Shriners hospital. I trust him 100%  Mind you this was my sons 4th doctor by the time I found him help. This has made me lose faith in our doctors that I rarely trust what they tell me until I research it for myself and find the answers.  Here is a link to the hospital who did my sons surgery and its my story of my son.  Good luck!

http://www.childrensmercy.org/Content/view.aspx?id=4385 

[NightMarezMommy]

Well, months later, here I am again with an update. Casting and corrective shoes alone are not working very well in our case, so surgery it is. It is scheduled for May 27th. I'll come back and let you all know how it goes. Pray for Marilyn and wish us luck!

[jenmomof3]

Hi, if I remember correctly, you're seeing Dr. Pike, right? I have a friend who was told by Dr. Pike that her daughter needed an ankle capsulotomy.  The mom sought another opinion before consenting to the surgery.  The child did *not* need surgery at all even though her feet were very severe and she was over 1 year old.  I would highly recommend getting a second opinion before consenting to a major surgery since once it is done, you can't undo the scar tissue.  I would encourage you to join the yahoo group nosurgery4clubfoot if you're not a member already as there are lots of resources and information there.

Here's what the one mom that I know recently wrote about Dr. Pike:

contact me for more info...Dr PIke claims to be Ponseti trained, Dr. Ponseti and U of I have never heard of her. She was practicing in FL, and now CA.  She is very charming and convincing, but modifies (surgically) a great deal. Please get other opinions besides hers!

[cricketsmom05]

Please, please please seek a second opinion. It was my daughter that was seeing Dr. Leah Pike in 2005 in FL. We really liked her. She seemed to have a great bedside manner. She did her own casting (unlike many other docs in the office who had their techs do it), etc. She seemed very knowledgable about the Ponseti Method, and told us that Dr. Ponseti trained her. When we ended up at the ER following a cast that was set a 105 degrees, and my daughter wouldn't stop screaming (the cast that she had before was a mere 60 degrees), Dr. Pike immediately scheduled surgery (joint capsulotomy), claiming that casting just wasn't working. I knew from my research that this surgery was not part of Dr. Ponseti's protocol. I asked if the cast issue could have been due to such a drastic degree increase (degrees measured by ER on both that current cast and the cast prior that I brought in.) Dr. Pike told me that my daughter's was just a case that was not responding. I emailed Dr. Ponseti, because I knew once we went through with the surgery, I could never ever take it back. I heard back from him right away. Not only did he tell me not to let my daughter have the surgery the following week, but it turns out no one at The Unversity of Iowa had ever heard of Dr. Pike. She had not trained under Dr. Ponseti at all. I brought Dr. Pike this email at our appt a few days prior to the surgery, asking if we could hold off on the surgery. She became furious, and threw the piece of paper at me, and told me to go to Iowa. We did. Our daughter never needed the surgery. She is 4 years old now, and you would never know that this was part of her past. However, had we listened to Dr. Pike, the outcome would have been much different. We are now in CA, and there are many other Ponseti Certified and trained doctors here, including Ronald W. Smith, MD, at MCH in Long Beach. (Other local doctors that Iowa lists as recommedations are Lewis E. Zionts, MD in L.A. at Orthopaedic Hospital Outpatient Medical Center 213-742-1110, and Sean D. Early, MD in Santa Barbara 805-687-0865.)
Please just get a second opinion from one of them before you go ahead with the surgery. You have nothing to lose, I promise.