Guest guest Posted February 28, 2000 Report Share Posted February 28, 2000 Barb, What part of the country are you from??? Creating the proper AFO/brace is both a scientific achievement and an art form. We have an orthotist here at Duke Hospital who is a master. I went home with my plastic AFOs the same day I was fitted for them, he even had the shoes in stock to fit them into (New Balance). (It probably helps that this same orthotist works with athletes from the Duke and UNC Chapel Hill university teams to fit orthotics for sports injuries and support while playing... These schools demand the best.) While it took me a couple weeks to get used to the feel of them, I now feel like my legs are " naked " without them. I was referred to this orthotist through the MDA clinic at Duke Hospital. MDA should pick up the balance of the charge after any insurance you have is paid out on them - however you MUST go through an MDA clinic for evaluation and treatment in order to get MDA benefits. Let us know where you are from - someone on this list may have a " master " brace maker close enough to make it worth your while to make an appointment with or without MDA. Ruth >From: classicb@... >Reply-To: CMTUS (AT) onelist (DOT) com >To: CMTUS (AT) onelist (DOT) com >Subject: AFO'S >Date: Fri, 25 Feb 2000 19:19:14 PDT > >From: classicb@... > >Hi Everyone, >Sorry that I haven't been one to get into the conversations, but I have >enjoyed >reading what everyone else has to say. I was reading today regarding the >orthos >and this really struck a nerve. Let me tell you what I've been going thru >for >the past 2 years. I have CMT 2 as far as they can tell, so I require >braces >for both legs. My first set took me almost 1 year for them to figure out >my >needs, which much to my disappointment left me with the steel braces >attached >to my New Balance shoes, which have never been totally comfortable, but >enough >to give me balance and I figured with abit of discomfort it was worth the >freedom >of not falling and not feeling too tired of trying to walk with the feet >turning >out. So now these braces and shoes have outlived their use, as they are >beginning >to hurt.So back to the " brace man " for a new pair. Since last August, he >has >tried to duplicate to some degree the last pair, and finally gave up and >sent >me to another office " as a favor " to see if his co-worker could perhaps >make >plactic AFO's.. I just came back today and they hurt so bad-so his excuse >was >that I have such senative pressure points, not to mention that I could >hardly >walk in the shoes without the feet turning over. He saids he'll try to put >straps on the bottom of the AFO's and that should hold my ankles in. What >a >mess... He doesn't want to even try to reduplicate the steel ones, which >I'm >trying to tell him that if he could with some modifications, than I would >be >happy. So for now, I'm at his mercy to see what he's going to do with the >plastic >ones. Everytime I think I'm going to get some answers and help, I have to >start >at square one again. I have to keep counting my blessings and than go back >in for the fight.. My question is that with MDA do they charge or do you >donate >money? This may be my next step, but wanted some input. When I heard about >Gretchen's, >Stefan Moser and how fast that was completed I think there has to be people >that know what they're doing, and I have to just keep going till I find the >right one, but sometimes you just get tired. I'm sure you all know what I >mean. > Look forward to some responses... Thanks! > >Barb > ______________________________________________________ Get Your Private, Free Email at http://www.hotmail.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 28, 2000 Report Share Posted February 28, 2000 My daughter's AFO's were also made by Cascade Prosthetics and Orthotics. Her first pair were ok, but did not articulate (hinge at the ankle) so she felt stiff in them. Her second pair is hinged and she like them MUCH better. (How do I know this since a kid generally doesn't like any kind of brace??? Well, she keeps this second pair on longer!!!!!) A physical therapist at the MDA clinic took the molds and sent them off to Cascade. The turn-around time is 2-3 weeks unless there is a RUSH requested by the doctor/orthotist/therapist. As I mentioned in a previous post, my own AFOs were made by an orthotist on staff at Duke and I received them the same day. Either way, we have both received an AFO that suits our needs. (although it took two trys to find the style that suited my daughter better...) Ruth >From: jacee17@... >Reply-To: CMTUS (AT) onelist (DOT) com >To: CMTUS (AT) onelist (DOT) com >Subject: Re: AFO'S >Date: Sat, 26 Feb 2000 18:52:02 EST > >From: jacee17@... > >In a message dated 2/25/00 7:22:17 PM Pacific Standard Time, >classicb@... writes: > ><< Stefan Moser and how fast that was completed I think there has to be >people > that know what they're doing, and I have to just keep going till I find >the > right one, but sometimes you just get tired. I'm sure you all know what >I >mean. > Look forward to some responses... Thanks! > > Barb > >> >Adam first AFOs were excuse the language CRAP! I have since then found >someone that makes the perfect . She pads and molds them to your feet then >sends them off to cascade. Adam has been so comfortable since going to >. >Keep looking for someone who knows what they are doing. > > ______________________________________________________ Get Your Private, Free Email at http://www.hotmail.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 28, 2000 Report Share Posted February 28, 2000 My daughter's AFO's were also made by Cascade Prosthetics and Orthotics. Her first pair were ok, but did not articulate (hinge at the ankle) so she felt stiff in them. Her second pair is hinged and she like them MUCH better. (How do I know this since a kid generally doesn't like any kind of brace??? Well, she keeps this second pair on longer!!!!!) A physical therapist at the MDA clinic took the molds and sent them off to Cascade. The turn-around time is 2-3 weeks unless there is a RUSH requested by the doctor/orthotist/therapist. As I mentioned in a previous post, my own AFOs were made by an orthotist on staff at Duke and I received them the same day. Either way, we have both received an AFO that suits our needs. (although it took two trys to find the style that suited my daughter better...) Ruth >From: jacee17@... >Reply-To: CMTUS (AT) onelist (DOT) com >To: CMTUS (AT) onelist (DOT) com >Subject: Re: AFO'S >Date: Sat, 26 Feb 2000 18:52:02 EST > >From: jacee17@... > >In a message dated 2/25/00 7:22:17 PM Pacific Standard Time, >classicb@... writes: > ><< Stefan Moser and how fast that was completed I think there has to be >people > that know what they're doing, and I have to just keep going till I find >the > right one, but sometimes you just get tired. I'm sure you all know what >I >mean. > Look forward to some responses... Thanks! > > Barb > >> >Adam first AFOs were excuse the language CRAP! I have since then found >someone that makes the perfect . She pads and molds them to your feet then >sends them off to cascade. Adam has been so comfortable since going to >. >Keep looking for someone who knows what they are doing. > > ______________________________________________________ Get Your Private, Free Email at http://www.hotmail.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 28, 2000 Report Share Posted February 28, 2000 Larry, I don't have a specific list myself but I think if we pooled all the recommendations from members of this list we could begin such a list. Gretchen, is that something we could keep on our main page???? I just know I have been happy with my AFO experience, and anyone in North Carolina or southern Virginia could get to the MDA clinic at Duke and get access to the people there that my daughter and I have seen. Ruth > >Reply-To: CMTUS (AT) onelist (DOT) com >To: CMTUS (AT) onelist (DOT) com >Subject: AFO's >Date: Mon, 28 Feb 2000 17:50:28 -0000 > > > >Hi All! > >Ruth, you were talking about a list of master othotists. Do you have >one listed in the Chicago area? I may need him/her, especially if >they can get them done in one day. I'm so tired of waiting for the >proper evaluation and treatment. I see the MDA for the first time >Mar 15 and I am really hoping to finally find out exactly what can be >done for me. I'm not so much impatient as I am interested in just >getting on with my life, which ever direction that may be. Thank you >all for all the info and input that I have gotten from you, which >amounts to volumes more that all the doctors I've seen. > >Larry > > >------------------------------------------------------------------------ >GET A NEXTCARD VISA, in 30 seconds! Get rates as low as 2.9% >Intro or 9.9% Fixed APR and no hidden fees. Apply NOW! >http://click.egroups.com/1/915/1/_/616793/_/951760232/ >------------------------------------------------------------------------ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 28, 2000 Report Share Posted February 28, 2000 Larry, I don't have a specific list myself but I think if we pooled all the recommendations from members of this list we could begin such a list. Gretchen, is that something we could keep on our main page???? I just know I have been happy with my AFO experience, and anyone in North Carolina or southern Virginia could get to the MDA clinic at Duke and get access to the people there that my daughter and I have seen. Ruth > >Reply-To: CMTUS (AT) onelist (DOT) com >To: CMTUS (AT) onelist (DOT) com >Subject: AFO's >Date: Mon, 28 Feb 2000 17:50:28 -0000 > > > >Hi All! > >Ruth, you were talking about a list of master othotists. Do you have >one listed in the Chicago area? I may need him/her, especially if >they can get them done in one day. I'm so tired of waiting for the >proper evaluation and treatment. I see the MDA for the first time >Mar 15 and I am really hoping to finally find out exactly what can be >done for me. I'm not so much impatient as I am interested in just >getting on with my life, which ever direction that may be. Thank you >all for all the info and input that I have gotten from you, which >amounts to volumes more that all the doctors I've seen. > >Larry > > >------------------------------------------------------------------------ >GET A NEXTCARD VISA, in 30 seconds! Get rates as low as 2.9% >Intro or 9.9% Fixed APR and no hidden fees. Apply NOW! >http://click.egroups.com/1/915/1/_/616793/_/951760232/ >------------------------------------------------------------------------ > > Quote Link to comment Share on other sites More sharing options...
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