Guest guest Posted January 9, 2005 Report Share Posted January 9, 2005 Tom, I was diagnosed with CMT in 1993.I have had major re-construction on both feet. I could not put my feet flat on the floor.I always wore a 2 " heal. I never used braces, I opted for the surgery. My left foot was straightened, the Achilles tendon extended, etc and the right foot was done 8 months later. To see me now walking flat on the floor is a miracle. I have weakness in my legs and walk with a cane. I recently had surgery to correct hammer toes. My tendons under the toes were clipped so they would extend somewhat. Another success ! I have callous' on the bottom of my feet, and in August of this year a portion of my metatarcel bone was removed from the third toe on my right foot thus relieving pressure on the bottom of my foot. Hopefully no more operations..... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2005 Report Share Posted January 9, 2005 Tom, I had the same surgery done that you are going to have done. I had my right foot done in Nov. of 2002, and then had my left done in March 2003. I spent 3 months in a cast for each foot. I am so glad I had it done. I still can't go without wearing something on my feet, but I am sure your doctor will tell you this. I have an appointment in Feb. to go back and see about getting my toes straightened, I already had my big toes done and have screws in them. I also had my arches done, because they were really bad. I have a total of 13 screws and 3 plates in each foot, but don't let all of this get you down. I am 50 years young and am very active also. I just started getting into drag racing 4 wheelers. Hope to hear from you and best of luck to you. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2005 Report Share Posted January 11, 2005 Hello Tom Bates, My son ph is having the same surgery as you on Feb. 11th in Walnut Creek, California. That's in the Bay Area. He was diagnosed at 15 yrs old. The progression took hold within the last five years. Joe's been wearing leg braces for 5 yrs. and had probably the same option as you, but hung in as long as he could. He now must use a cane and will fall a lot without its use. Poor balance. The reason I write on his behalf is because he's also mentally retarded and unable to read or write. He's employed at the local movie theater and has been gainfullly employed for 13 years. Please keep us posted on your progress and we will also.....Hang in and Good luck!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2005 Report Share Posted January 21, 2005 , Did your surgery reduce the amount of pain you have in your feet? I am currently experiencing considerable pain and hope the surgery will eliminate most of it. Tom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2005 Report Share Posted January 21, 2005 Tom, All of my surgeries made my pain worse. I guess it depends on the person and type of surgeries. I had a sub talar fusion. I regret the surgery big time. Jen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 23, 2005 Report Share Posted January 23, 2005 Hi Tom, Considering the shape my feet were in before the surgery, the pain was just as ugly as they were. Since the surgery most of the pain is gone. The only pain I have now is, in my left big toe and the inside of my right foot. The only pain medication I have taken at all for my CMT is Tylenol and that was only after my surgery. If you have anymore questions or just want to talk about your surgery please feel free to e-mail me. I am on disability and with the weather we are having in New York I stay in the house alot on the computer. Take care, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 23, 2005 Report Share Posted January 23, 2005 Hi , Thamnks for that email about your ankle surgery. I just had it done 4 weeks ago and am in the middle of all the casts and the pain and the No Weight Bearing for 2 months. Today was a bad day. I am just sick of the pain and the cast and not being able to walk around. I just keep telling myself it WILL BE SO WORTH IT!!! My foot was so bad. It was rolling out and turning in and tripping me and the AFO was not helping me. The next AFO I was going to have to go to was just not something I could see myselg wearing. I am single and 39 and need to be able to do more in my life. Without having to always worry about falling. I am glad I picked this time of year to do it. I live in Wisconsin and we have had so much snow. At least I don't have to worry about walking on the ice or driving in the bad roads for awhile. Thanks again. I read someone else's email about how the surgery he had didn't workout for him. I am keeping my fingers crossed that it isn't the case for me. Bobbie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 23, 2005 Report Share Posted January 23, 2005 Hi Bobby, What all did you have done? I was house bound before my surgery, except for going to work. I didn't want people to see me, the way I walked, because of the stares I used to get. Now I get out as much as I can and strut my stuff. I still have to wear a brace on my right foot, but I don't care. I had my good days and bad days. Have you gone and gotten your stitches and staples out yet? To me it was all up hill after that. It was still ugly to look at but yet it was beautiful to because, it was straight like a normal foot. I cryed I was so excited. Please feel free to e-mail me. Take care Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2005 Report Share Posted January 24, 2005 Bobbie, It is worth it. The time goes by pretty fast when you look back. Stay positive. Set small goals for yourself while you are waiting. I read a few good books and spent lots of time with my daughter. Just make the most it. I have had the ankle surgery. My son just had an arch surgery. His foot looks great! One foot to go. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2005 Report Share Posted January 24, 2005 , My surgery is scheduled for 2-7-05--two weeks from today. The surgeon recommended this surgery three years ago, but I was not prepared psychologically to face it. Now, after wearing braces and seeing dramatic deterioration in three years, I am more than ready. My biggest concern, of course, is mobility, but the level of pain I experience presently is hard to bear and just in the last few days it feels like I tore something in my arch. I can only take a few steps without generating a searing pain that is really unbearable. Even with braces this new pain occurs. So, surgery here I come. Glad to hear that your surgery pain was manageable and that you can now " strut " . Stay warm and out of the snow. Thanks for the encouragement. Tom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 25, 2005 Report Share Posted January 25, 2005 Hi , 2 weeks ago I got the first cast off and they took all the stitches out of all 6 incisions. When they did the Xray to check on the position of the two 3 inch screws in my heel that incision started to bleed alot. So they steristripped all on them again and put on another cast. Next week I go back and he takes this cast off and puts on another one. But then it will be another 8 weeks I think before I can put any weight on it at all. Because of my weaknesses in my arms and legs I can't use crutches. So I have had to use a wheelchair. It has been snowy and cold so it is hard to get out. I am still in alot of pain. Mostly around where the heel incision must be. I am a rubberstamper so I am going to work on some cards and scrapbooking. I just am keeping my eye on the future. I know it will be worth it!! Thanks for asking. Bobbie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 28, 2005 Report Share Posted January 28, 2005 , Thanks for the feedback. I do just need to keep positive snd just remember how worth it will be! Thank, Bobbie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 28, 2005 Report Share Posted January 28, 2005 Hi Tom, I just had foot surgery to correct my foot from turning in and rolling out. If that makes sense. I was walking mostly on the outside of my foot but still tripping and falling alot. The AFO I was wearing was not helping and the callouses were terrible. I was supposed to also have this surgery 3 yrs ago and just couldn't bring myself to take the time off to go through it. I have 6 or 7 incisions where they did tendon transfers. He broke my heel and took a notch out of it so it would sit flat on the floor. He put in two 3 inch long crews to hold the ankle bones together. The surgery took 3 hrs instead of 1 1/2 hr like he thought. I had a spinal anesthetic instead of General anesthesia. So I was awake for the whole thing. It went great. My lungs are bad so General anesthesia would not have been an option for me. Know I have to be in a cast which they changes every 3 weeks for 2 months and be no weight bearing at all. I don't have the stength to use crutches so I am using a wheelchair. It is pretty painful but I know it is going to be so worth it. I will only have to wear a small brace/AFO for foot drop on it. Hang in there. Please keep me posted on how you are doing. What kind of surgery are you having? Anything similiar? Take care, Bobbie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 29, 2005 Report Share Posted January 29, 2005 Bobbie, is the ankle supposed to be functional after the recovery or is this a fusion? I have a similar problem. Where is your surgeon? Thanks, Dave Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2005 Report Share Posted January 31, 2005 , My orthopedic surgeon said he didn't think I needed the ankle fusion at this time. He thinks the tendon transfers and breaking the heel and resetting should make all the difference. I really trust him. I live in Wisconsin near Green Bay and he is in Appleton. If you have any other questions email me back. Bobbie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 1, 2005 Report Share Posted February 1, 2005 Bobbie, We are from the same area and would be interested in contacting you, I also have my doctors in Appleton. I am curious as to how many of the same problems we have. We may even share a doctor or two. Being so close to each other, we perhaps could share some ideas about what helps each of us, and help each other. Feel free to contact me at my e-mail address. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 1, 2005 Report Share Posted February 1, 2005 Hi , I would really like to email you. I am not sure how to do it without the whole group also seeing our email. Can you tell me how to do this. Thanks Bobbie **** Bobbie, just copy and paste 's email into a 'new message' for her. ~ Gretchen Quote Link to comment Share on other sites More sharing options...
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