Guest guest Posted October 8, 2009 Report Share Posted October 8, 2009 Jackie: I know, getting the right AFOs can be a major challenge. I ended up w/ Hanger. They are of course nation wide. I used an ofc. in Portland, OR because of it's close proximity to my residence. Other than some minor tweaking they have worked well. I am 57, only worn AFOs for 4 years and still have strong quads and hips.....so as you know, every challenge is individual. Maybe worth looking into. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 9, 2009 Report Share Posted October 9, 2009 Hi Jackie, The footplate of the Blue rocker brace is not very flexible, but it is more flexible than Helios. The good thing with Blue rocker is: You can try it, but if you don't like it, you don't have to buy it. It's off the shelf, so you can just return them. You need: custom made insoles and wide shoes before you try the Blue rocker. If it doesn't feel good with them at once, then they are probably not good for you. For me it was an immediate relief and good feeling. Yes, I am still a bit unsteady, but I can walk for hours in the Blue rockers, and I can stand in queues or stand chatting, so I would say they changed my life. A bit of a problem still with very uneven ground like steep uphill/downhill and stairs (need a leader to hold onto to be able to use stairs). Also tricky to walk on sandy beaches. (But then I couldn't do any of this without either.) Good luck! Beata ________________________________ From: Jackie Sachs <jackiesachs@...> Sent: Thu, October 8, 2009 7:11:33 PM Subject: need help with braces I will start this post with saying I am EXTREMELY frustrated with this whole bracing thing. I got the helios 3 years ago and have never been able to walk in them. I have weak quads and very weak hips, so I waddle When I walk. The hips could not seem to support my legs when walking in the helios. I have been wearing AFOs for 25 years, so I am not uneducated in this, it just seems as the body changes, I am getting more and more confused. I called Bader Orthotics in Tampa as recommended by someone on this site. Really liked him and he is very knowledgable. He has his own patented brace called The Noodle, but he still has you come in, casts your foot and custom fabricates it for you specifically, just like Ortho Rehab, but only costs $2000 (a bargain compared) Well, as fate would have it, not covered by my insurance and after spending $12,000 on Helios, not looking to spend more than $500 out of pocket. Called Allard and had them send me info on Blue Rocker, which seems to be my best option right now. Don't love the idea of going off the shelf unless the orthotist is very knowledgable with CMT and my specific weaknesses. Any feedback on Hanger Orthotics??? ??? What about Otto Bock where they seem to have a KAFO (which is actually harder for me to walk in due to non existant quads and weaker hips) Holli from Texas: Would love to hear more from you about your experience as I saw you posted on HNF regarding the helios and the blue rockers. Beata: Do you ever feel unsteady in the Blue Rockers? Is the foot plate flexible? Bader was concerned that these braces might still be too rigid for me. Any feedback would be appreciated. I am looking to make a decision in the next 2 weeks so I can have these before end of year and my HUGE deductible starts all over again! Thanks Jackie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 9, 2009 Report Share Posted October 9, 2009 I didn't have a good experience with Hanger (Minnesota) either. Geri Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 9, 2009 Report Share Posted October 9, 2009 Thanks; this is what I was afraid of since they just seem to be a huge conglomerate which is why I like orthotists that work for themselves and are knowledgable. I'M SO FRUSTRATED! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 9, 2009 Report Share Posted October 9, 2009 I'm frustrated too........set of 3,000 braces sitting in my closet, that I can't wear! Ins. pd some but I still am paying on my part of the bill.In the mean time I'm with out shoes or braces. Have been in slippers for a long time,also healing a sore on my ankle....right where the braces would be. As I have said before the shoes they got me are a five and half, I take a one and half and the metal braces are permentley in my shoes...Lots of fun to put on! My shoes and braces are Heavy and worthless, I can not wear them.I'm sick about it too. Geri I'M SO FRUSTRATED! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 9, 2009 Report Share Posted October 9, 2009 Jackie ~ For what it's worth. I didn't have a very good experience with Hangar in Las Vegas. The orthotists never asked me to stand or walk! As I sat in his office he casted me and sent me on my way. When I inquired about the other off the shelf bracing available he said " they won't work for me " . He mentioned that he had seen ONE other person with CMT in his career. An expert that does not make....I was not comfortable with his advice and did not follow through with ordering their AFOs. I have an old pair of these in the closet that never worked for me already. I have found that wearing a high-top sport shoe gives me additional support around the ankles. If you look on line they have some really cool and colorful styles. PONY shoes make a black velvet and patent pair hi-top, they are my dress shoes! I wish there was a brace store that you could go in and try them all out like shoes! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 10, 2009 Report Share Posted October 10, 2009 Gosh Jackie, $12,000 for Helios? Does that man who recommends or builds those guarantee them? Why do they work better then off the shelf? Kim Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 10, 2009 Report Share Posted October 10, 2009 I had a very bad experience with hanger sf Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 12, 2009 Report Share Posted October 12, 2009 Hi Kim, I have got Helios too, (same cost) but for me they don't work. I like my off the shelf Blue Rocker braces a lot more. I have tried to figure out why I don't like my Helios, but I can't really grasp it. For me they are too rigid, too troublesome to put on and they limit my movement more than they help. But this is individual and very hard to predict. The man who made them can only guarantee that you will be able to walk in them (which I can) but not that you will like them! Beata ________________________________ From: Kim Kessing <kkes@...> Sent: Sat, October 10, 2009 2:33:18 AM Subject: Re: need help with braces Gosh Jackie, $12,000 for Helios? Does that man who recommends or builds those guarantee them? Why do they work better then off the shelf? Kim Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 12, 2009 Report Share Posted October 12, 2009 here is his website where he explains how and why they work for CMT http://www.ordesignslv.com/helios.php Re: need help with braces  Gosh Jackie, $12,000 for Helios? Does that man who recommends or builds those guarantee them? Why do they work better then off the shelf? Kim Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 12, 2009 Report Share Posted October 12, 2009 , Thanks for the information. That is what I was afraid of. It seems like Hangar mass hires orthotists and i would rather go to one who is passionate about their job and helping others. I used to always wear high tops and they were my shoe of choice. Unfortunately, that is not enough for me and without braces, i would not even be able to wear high tops and lift my foot, as they would be heavy on my feet. I do agree with you about the braces. Wouldn't it be nice to be able to go into one place and try on and see. Although a lot of people would end up choosing wrong ones, but i think i know enough now that i could find what would work. Laine and I have discussed what type of brace would work for us and now it is up to us to find someone who will listen! Jackie Re: need help with braces Jackie ~ For what it's worth. I didn't have a very good experience with Hangar in Las Vegas. The orthotists never asked me to stand or walk! As I sat in his office he casted me and sent me on my way. When I inquired about the other off the shelf bracing available he said " they won't work for me " . He mentioned that he had seen ONE other person with CMT in his career. An expert that does not make....I was not comfortable with his advice and did not follow through with ordering their AFOs. I have an old pair of these in the closet that never worked for me already. I have found that wearing a high-top sport shoe gives me additional support around the ankles. If you look on line they have some really cool and colorful styles. PONY shoes make a black velvet and patent pair hi-top, they are my dress shoes! I wish there was a brace store that you could go in and try them all out like shoes! Â Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 12, 2009 Report Share Posted October 12, 2009 Geri, Was this your first pair of AFOs? Where did you get them? It may be that it was too much bracing for you at this point. Can they do anything to help you? Do they know your situation? You might be surprised at what they might do for you if you shoot them an email or call. Jackie <I'm frustrated too........set of 3,000 braces sitting in my closet, that I can't wear! > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 12, 2009 Report Share Posted October 12, 2009 No this was my 3rd pr. of AFos, the others were plastic, the second pr. of plastic AFOs made me brake out even with log socks and also made me sweat terrible Got my last AFOs at a place call Grate Steps.Like I said the shoes are a five and a half and I take a one and a half. I cant deal with that size difference, they thought it would be ok because they fit in weith. The Ins will not pay for custom made shoe but thy will pay a good price for something that don't fit! They are also way to hevey for me, I hate them! Geri Geri, Was this your first pair of AFOs? Where did you get them? It may be that it was too much bracing for you at this point. Can they do anything to help you? Do they know your situation? You might be surprised at what they might do for you if you shoot them an email or call. Jackie <I'm frustrated too........set of 3,000 braces sitting in my closet, that I can't wear! > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 13, 2009 Report Share Posted October 13, 2009 Thanks Beata- That is crazy. When I read the post regarding AFOs and from my own experience how I relyed on my guy at UTSW not only to listen to my story but to begin with the least intense and cheapest products. You know do no harm. I have certainly spent some big bucks over the last few years on my health but I don't have anything that has cost over $1,000 and doesn't work! I wish there was a flow chart of the different AFO options and it was more standardized then it is. Kim Hi Kim, I have got Helios too, (same cost) but for me they don't work. I like my off the shelf Blue Rocker braces a lot more. I have tried to figure out why I don't like my Helios, but I can't really grasp it. For me they are too rigid, too troublesome to put on and they limit my movement more than they help. But this is individual and very hard to predict. The man who made them can only guarantee that you will be able to walk in them (which I can) but not that you will like them! Beata ________________________________ From: Kim Kessing <kkes@... <mailto:kkes%40swbell.net> > <mailto:%40> Sent: Sat, October 10, 2009 2:33:18 AM Subject: Re: need help with braces Gosh Jackie, $12,000 for Helios? Does that man who recommends or builds those guarantee them? Why do they work better then off the shelf? Kim Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 13, 2009 Report Share Posted October 13, 2009 Hi, my name is Amy. I have been reading all of yalls talk about braces. I dont know if yall can see my braces. They go all the way up my legs. I did not have a choice. It was these or a wheelchair. I want to walk. They are titanium. Very expensive. I depend on God and my spouse for support!!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 19, 2009 Report Share Posted November 19, 2009 Jackie, What ever happened with the helios braces from vegas that you could never walk in? did mitch say he would make them over for you? do you get a refund? i wonder if this has happened to anyone else? i hope it is good news! Laine Quote Link to comment Share on other sites More sharing options...
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