Guest guest Posted August 1, 2006 Report Share Posted August 1, 2006 , I hear AFOs for a CMTer are very hard to make. Each case is different, we all balance differently etc. Your doctor probably had a fight with his wife and hated all women that day Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 2, 2006 Report Share Posted August 2, 2006 Hi , Just reading about your doc and his rudeness over and AFO made me want to scream! Is this man a Certified Orthotist? They have certain professional standards, and my orthotist Stefan Moser at Swiss Balance works with me so hard to make absolutely, positively SURE that my orthotics fit well inside my shoes and he always says " if you need any adjustments, please do not hestitate to let me know " . I almost hate to suggest another Orthotist to you, but maybe another one would be more knowledgeable. Orthotists have MANY small size shoes to fit with orthotics or AFOS. Or even what about a small size New Balance, , Ecco, or Mephisto shoe? Hang in there. Don't give up, there ARE solutions. ~ Gretchen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 2, 2006 Report Share Posted August 2, 2006 Gretchen, I felt like he just didn't care. He is suppose to be the best orthotist in my state. He used to practice in California. He said " a size six is the smallest I offer in a shoe " . I questioned him on his patients that are children and what he does to help them with shoes. He never responded. --- gfijig <fijiwigged@...> wrote: > Hi , > > Just reading about your doc and his rudeness over > and AFO made me want > to scream! Is this man a Certified Orthotist? They > have certain > professional standards, and my orthotist Stefan > Moser at Swiss Balance > works with me so hard to make absolutely, positively > SURE that my > orthotics fit well inside my shoes and he always > says " if you need any > adjustments, please do not hestitate to let me > know " . > > I almost hate to suggest another Orthotist to you, > but maybe another > one would be more knowledgeable. Orthotists have > MANY small size shoes > to fit with orthotics or AFOS. Or even what about a > small size New > Balance, , Ecco, or Mephisto shoe? > > Hang in there. Don't give up, there ARE solutions. > > ~ Gretchen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 2, 2006 Report Share Posted August 2, 2006 , I wonder how much he actually knows about CMT and peripheral neuropathy. Something had him in a bad mood. That's the first time he has acted that way. --- MommyToAdam@... wrote: > , > > I hear AFOs for a CMTer are very hard to make. Each > case is different, we all balance differently etc. > Your doctor probably had a fight with his wife and > hated all women that day > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 2, 2006 Report Share Posted August 2, 2006 Thanks . I wear shoes from the kids department. It sucks too! They look like kids shoes. It's embarassing to wear out in public. I don't think I'm going back to this doctor. The only problem is that there's not much choice around here. I drive an hour and a half to see my neurologist and pain clinic. --- Kruser <tigerboy@...> wrote: > , > > I too have a small foot. I wear a 6, but my shoes > to accommodate > my AFOs are a 7 1/2. My orthotist offered shoes for > me to purchase, but I went to a shoe store that > carried New Balance and have been wearing them ever > since. The professional at the shoe store made very > sure that I had a good fit. The only thing I went > back to the orthotist for is that we actually took > the pad from the NB shoe and trimmed it down. He > then glued it right into the plastic part of the > brace, which offers me the most " padded " comfort I > can get. I have a good orthotist, but his shoe > selection just didn't interest me. Don't let the > doctor dump on you. I had a neurologist that I had > been with for 7 years that did that to me ONCE. It > only took once for him to be rude and condescending > to me and I fired him! > > Remember, they're working for you and it's because > of you and others like you that they're in business. > > > K. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 6, 2006 Report Share Posted August 6, 2006 , I am soo sorry for you. It is bad enough that the Dr. we have to work with don't know anything about CMT or so limited that we give them more info than they give us. At least that is howu I feel. I am very fortunate that my orthotist has been more help and support to me than the Dr. - even the neurologist - who seems to have forgotten that I am a patient of his. If it weren't for , I think this whole experience of CMT and AFOs would have been just too much. I was interested in these posts due to " shoe/foot size " I too, have a small foot. Was a size 6 BEFORE AFOs. Now I have to go into a 7-7 1/2 depending on the shoe. I would LOVE to wear children's shoes as they are wider than adult shoes, BUT I can't find a size 5 very often which is equivalent to a size 7 ladies. I am pleased with my AFOs as I can now walk. My foot drop and fatique in the feet/legs was horrendous until the AFOs I wear them all the time althought the atrophying of the lower calve muscles is more prounounced since wearing the AFOs. I am interested in shoes as I have a difficult time finding shoes to fit the AFOs. I also have a lift put on the shoes to keep my feet from rolling outwards, so I must have a good shoe. I have 3 pairs of shoes I can no longer wear because the lift can not be put on them. I do wear them on occassion, as my " good " shoes are a wee bit tight. Yes got mad at me. What can I do the shoe store suggested going into men's shoes. I don't want to look like BOZO the clown and besides if the shoes get too long won't I be at just as much risk of falling due to tripping over the ends of the toes? Ahh life is great eh? We keep looking and trying best of luck to you and also any of you who are struggling with finding shoes that fit. Patticia (In Bowden - Canada) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 13, 2006 Report Share Posted August 13, 2006 Hi Elaine, You have every right to have your orthotist adjust your AFO until you can wear it as much as you need to - without having it hurt! Some orthotists will try to use 'generic' or 'off the shelf' AFOs and somehow 'modify' them only slighty to serve the needs of many. Persons with CMT are not the only ones with footdrop. Footdrop is characteristic of ALS and Frederich's Ataxia, for example. You absolutely must demand this orthotist measure you correctly, check for worn/wearing spots, and ask him/her WHY it hurts. Express your disatisification, even write it in a letter if you have too. If this orthotist cannot meet your needs 100%, find another one, and report the former orthotist to the certifying organization. Does your orthotist belong to this organization, and just how many CMT clients does he/she have? http://cpeds.org You can also find another orthotist through this site. In essence, be assertive, agressive, and OK, " ballsy " if you have to. You deserve an AFO that fits, offers the support you need, where you can get adjustments 'as needed', and not have one that hurts at all! ~ Gretchen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 13, 2006 Report Share Posted August 13, 2006 Elaine- You are absolutely right in going back to have your leg brace adjusted. I've been wearing AFOs for along time and mine are so comfortable. I think sometimes it all starts in how our legs are positioned during casting(molding). Any sore spots can usually be fixed pretty easy. You as the patient have to be comfortable. Too bad he gets tired of seeing you........ ask about maybe having a redo?? Good luck. Barb Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 13, 2006 Report Share Posted August 13, 2006 Elaine: Where does it hurt? Is it due to pressure or does it feel like a muscle strain? Dos the AFO have a heel cup? I have had 2 AFOs fitted to my left leg and both required modifications over time. Most of the tweaks occurred in the first weeks (I was in the office so much they offered me my own cubicle) but some adjustments were -- and are being -- made as my leg assumes it's beautiful, hairless champagne flute shape. --Larry Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 13, 2006 Report Share Posted August 13, 2006 Hi there, It bothers me mostly after it is taken off and right of the bottom of my foot by the big toe... I guess that is the ball of my foot, or right beside it. It the few adjustments he has made it is actually now even contours my foot and a second man came out last time to try something and said if this doesn't work likes do a recast... So that is what I am going to say tomorrow in calling. I can wear it, but one edge of it looks like it is going to make a whole in my shoes on the side.. It is now to weird. Thanks for responding. It is definietly where the pressure point is and it is not hitting that area right. Elaine Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 13, 2006 Report Share Posted August 13, 2006 Hi Barb, That's what I am going to ask for a redo, cause the way it is now, better walking in it, but it is so out of position of my foot, looks like the side might even make a whole in my shoe. Thanks. Elaine Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 13, 2006 Report Share Posted August 13, 2006 Gretchen, Thanks so much for your support and everyone elses. I am an assertive person when I need to be, and now is the time, because what it does is great, it just doesn't fit right and is going to ruin my shoes. I'll keep you posted. Elaine Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 7, 2006 Report Share Posted October 7, 2006 Hi everyone, I am trying ,after 4 months, a new Orthotist to make a new AFO for my left foot... Foot drop. I have had two previous AFOs made by a differen person but he just didn't know how to slove the problem of the foot plate and the way I walk. Totally frustrated I went to this new Orthotist. My question is those of you that have AFOs is the foot plate the length of your foot, and how high up on the calf of your leg does it come? I really need your input. I want one to fit and be comfy so bad. The new orthotist I am now using is soooooooooooo much more approachable regarding my needs and comfort. Thank You to all. Elaine in Florida Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 8, 2006 Report Share Posted October 8, 2006 Hello Elaine, For height, comfortably below the knee has been the course for me using three different orthotists. I am forced to wear knee length socks because there needs to be something covering the shin where the retention strap rubs on the front part. As for the front pad some go all the way forward and some stop at the ball of the foot. I prefer to have it all of the way forward. One thing to watch out for is the tendency to wrap it around the heel and the ball of the foot. This is bogus as you lose stability due to the roundness laterally. They can build it up to have a flat surface under the foot which matches the flat surface inside the shoe. That gives the maximum lateral stability which we sorely need. Another consideration is the presence of Varus Heel. If there is any tendency for the heel to curve to the inside, this has to be corected by the padding in the AFO. I would go so far as to say this is necessary even if Varus Heel is not present. The future may well bring this on for us as well. Catching it early on is very important. If there is any tendency toward a " weak " ankle (history of sprains and strains) by all means include the side support of the ankle. EdM from NH Quote Link to comment Share on other sites More sharing options...
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