Helios braces

[Guest guest]

Hello,

I was wondering who has Helios braces and how do they work for you?

Thanks,

Kay

[Guest guest]

Kay,

Heading out to Vegas to get them this Sat...I'll be sure to post a

report when I get back.

[Guest guest]

,

I also live in New Jersey. So what do you think of the Helios? Hope they worked

out for you.

[Guest guest]

JoAnn,

I am in the process of looking at the Helio braces and was surprised to hear

what you said. Did they back up the braces and why did they keep breaking? This

concerns me! That has been my experience with every brace I have had, custom or

pre-fab.

Jackie

[Guest guest]

Joann,

Who made your helios braces in Vegas?  I have them also and mine were made by

Mitch Warner.  I had them made originally from Jean- Neilsen in Vegas and

his were horrible and he would not fix them.  Then he skipped town and would not

answer my emails and alot of other people's emails and eventually after I

complained to the Board of Orthotics and got his license taken away I eventually

gave up on getting my money back from him and went to Mitch Warner who was great

and his braces were great and I have had mine for 4 years and they have not

broken at all.

Betty

[Guest guest]

Hello Betty,

How much were they and does insurance cover them? Also are they only available

in CA?

Andy

[Guest guest]

Everyone asking about Helios:

I did get them in 2001 in Las Vegas from Jean- Neilsen. They worked great in

the beginning. The leg part got stressed and he made me another pair. There were

2 others who got them along with me. One person keeps getting them fixed. The

other person and I couldn't get satisfaction from Jean- and we just gave up.

We didn't get them from Mitch. But we spent so much money with Jean-, we

couldn't afford Mitch's. MDA only pays so much.

We were heart-broken (devastated) when the braces didn't work for us -- 1 month

we're doing great -- 6 months later and the bar is cracked. It's very stressful

emotionally when you try something that's supposed to work, but doesn't. Maybe

the braces worked for other people, but not for us.

Any of you who are trying Mitch's braces, please let us know how it goes.

I didn't mean to upset anyone. I'm very sorry if I did.

JoAnn N.

[Guest guest]

Hi JoAnn,

You don't need to apoligize as I was not upset but I did not want Mitch to get a

bad rap for his braces from something Jean- did. Mitch's braces are nothing

like Jean-'s and he stands behind his work and is a great guy and very

knowledgeable about CMT.

Betty

[Guest guest]

Andy,

When I checked out these braces I found they were real expensive. I

don't think my insurance would pay that much for them. I asked my

orthotist about them and he was familiar with them. He thought they

were good but not anything new or so different to justify the high

cost. I think they were around $9,000 or something crazy like that for

a pair.

Bob

[Guest guest]

Andy,

They are $6000 per leg; insurance will cover depending on your insurance company

(this is what I am waiting on). Yes they are only available in CA and you have

to go for a week. He fits you on Monday and delivers final and makes adjustments

Thursday and Friday. I am possibly going July 23rd.

Jackie

[Guest guest]

Hi Andy,

I don't know how much they are now as I had gotten mine a couple of years ago. 

I had no insurance at the time so I paid out of pocket but I am sure that some

insurance companies would cover them, at least a portion of them.

I got mine in Las Vegas which is where Mitch Warner's company, Ortho Rehab

Design, is located. I had to stay out there for one week while he made them and

fitted them. You can go to the website just type in Ortho Rehab Design and it

comes up on and read about them. 

You should make the video that is listed on the website and have Mitch look at

it to see if the braces will help you as everyone is so different in their CMT

and deformities due to the CMT. 

Betty

[Guest guest]

Thanks much Betty

Andy

[Guest guest]

Thanks much Jackie, let me know how you made out

Andy

[Guest guest]

I apologize. Mitch (Warner) and Helios is in Las Vegas! I keep saying CA and I

really mean Las Vegas, Nevada!

Jackie

[Guest guest]

Jackie,

You say you are getting your helios in CA???  What is the name of the person you

are getting these braces from?  Is it Marmaduke Loke or Neilsen?  If

so, I would seriously reconsider getting braces from either of these men.

Betty

[Guest guest]

Thank you Betty; I am aware of these two through Gretchen and others with bad

experiences. I meant Mitch from Las Vegas, Nevada. I did speak with in

the last several months just to hear what his pitch was and he IS good at

sounding convicincing, but the proof is in the numbers!

Jackie

[Guest guest]

Hi Kay,

I'll have my Helios braces two years this July and I'm so happy I took the

chance on them. It's not an easy decision to come by as the price can be a huge

obstacle, but I was able to get some reassurance from before I booked

my appointment. She works with

Mitch and handles insurance issues and answers all your questions. They cost me

$6000 per leg and I was reimbursed 70% of the cost from my insurance company.

BTW, I believe Mitch has introduced a new line of Helios made with less

expensive material. I read this on

hnf-cure.org. The article mentions that the braces made with this material cost

about 50% less.

I'm in my mid 30's and was diagnosed with CMT at 5 so I've tried it all. These

braces have given me an incredible amount of stability.

The two areas where I've recieved the most benefit are:

Balance. I wasn't able to stand still without holding onto something. A stiff

wind would knock me over. With the helios this changed immediately. I can stand

on line for hours if need be (have already had to) and it takes a good shove to

knock me over. I live in NYC. Impossible to avoid bumping into people.

The other is pain relief. I broke my ankle 3 years ago and lived with incredible

pain. Doctors only solution was a full fusion and asked me to hold out as long

as I could as a full fusion at this age will only lead to further problems in

the future with every other joint in that leg.. Mitch assured me that the Helios

would stabilize my ankle to the point where I wouldn't need to consider the

surgery. He was right. I haven't taken a painful step since.

I've also noticed an increase in walking speed and better lateral movement.

The amazing thing about these braces is that they don't lose their intial

structural integrity. I've been wearing them an average of 12 hours a day for 2

years now and they feel the way they did when I first walked out of his office.

Hope this helps.

[Guest guest]

Wow, this is great news to hear. I am in the process of dealing w/ and

waiting for my prescription from doctor and planning on traveling out to Vegas

in July. It has been a very difficult decision due to the $$$, but there comes a

time when quality of life supercedes money. I would be thrilled if insurance

would cover 70%. I have worn braces for 20 years and now have to walk with a

cane and can't stand for more than 10 minutes. Thanks for confirming what I have

heard over and over again.

Jackie

[Guest guest]

Hi Jackie

I have spoken to you before about Mitch's braces months ago,your insurance will

pay you just have to keep on there back,if they send you a check tell them it's

not enough and you will appeal, insurance companies will try to get away with

it, but if you stand strong you might get more $$$$$ I wish you all the luck in

the world and I am excited for you,just take it slow, tell Mitch I said hi.

Best of luck

Lainie

[Guest guest]

I just got back from seeing Mitch Warner at Ortho Rehab designs and

got the Helios braces. First of all, he is the most knowledgable

orthotist I have seen in the 25 years since I have had CMT. He is

patient and spent a lot of time with me.

My CMT is more unusual as most because in addition to balance issues and drop

foot, my quadriceps are " paralyzed " with only a trace of muscle. Due to that,

the progression of using the braces will be slower. He is having me work on

balance first, and I am able to stand for 1/2 hour without leaning on anything

at this point.

When I do attempt to walk in the braces, I am able to bend my knee (I usually

hyperextend my knees to walk) and I am no longer doing the hip hiking and

" waddle " .

He was actually pleased that I am having this type of progress with

my quads being so weak. It is hard work and frustrating, but anything

worthwhile is hard. I am feeling muscles that I forgot I had in other

parts of my body, specifically my abdomominal and shoulders, so at

least I know I am working body parts just by standing. My husband

says he has never seen be stand so straight and that my stance looks

" normal " . If anyone would like any additional information, feel free to write.

Jackie

[Guest guest]

How exciting, Jaci ! I'm happy for you...I have to make a appointment to have my

AFROS checked. I haven't had them on for a year now so needless to say I haven't

been doing very much walking. Kind of hate the thought of having shoes on. Mine

are older then dirt and so heavy. They were made years ago but that's all I

have! Can't find shoes size 1 1/2 and WIDE..enough..Good luck to ya.

Geri

[Guest guest]

The Helios braces that are offered through Ortho Rehab in Las Vegas are amazing.

However, if your insurance does not cover even a portion of the cost of the

$12,000 per pair, this cost can be far out of reach to many of us.

Las Vegas

@...: jackiesachs@...: Fri, 10 Oct 2008

10:59:47 -0400Subject: Re: You have CMT ohhh sorry we can't help

you........Hot Potato.........

Andy,I too at age 25 was told by a very renowned neuromuscular doctor at one of

the best known hospitals in the world that I have CMT and will probably be in a

wheelchair at age 40 and no need to go to physical therapy, just do what I do

naturally in a day, that is enough. I believed him and regret that I did not

push the exercise program more when I was younger. (47 years old now).Do you

have a department of vocational rehab in your state? When I was having

difficulty walking far in my office years ago, I went there and they came out

and did an evaluation of my workstation and then ordered me a scooter to use at

work, plus some ortho pillows and other stuff for when I am sitting at my

computer to keep my body from tiring. This was all paid for by the state. Also,

have you considered one of the 3 wheel walkers that has the seat to use at work.

Last night, I had my mother walk in my house with one and I was amazed at how

her gait improved. She walking walking fast and with her head and shoulders held

up and her confidence from losing balance improved greatly. Just try to use

those type of adaptive devices at work to allow you to continue working and save

your energy for your daughter.I know what you are going through. I was a working

single parent for 18 years and I could never have gone on disability for

healthcare and financial reasons.If your quads are fairly strong, you should

check out the Helios braces at Ortho Rehab Designs in Las Vegas. They work

wonders for balance and proper gait and Mitch will work with you for an entire

week to make sure the braces fit properly before he will allow you to go home!

If you quads are extremely weak, you may want to keep researching.Hang in

there!Jackie

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[Guest guest]

Why are Helios so cost prohibitive?

Amy Hodge    

[Guest guest]

Amy,

The cost is possibly due to the fact that ONLY one man makes them, and

has a patent on them. Another may be due to the use of carbon graphite.

I asked my orthotist Stefan about this and he told me that he could create the

same design and function, depending on the needs of the client. Stefan showed me

different types of AFOs, ones off the shelf, custom made ones, metal braces,

carbon graphite ones, SAFOs, ankle braces, and some others. There is no one

specific brace for CMT in general. And many other people with other gait needs

wear any type of these.

So far the maker of Helios is keeping his patent to himself; not

to mention the costs that people incur traveling to Las Vegas and

staying there for one week.

I know Helios work for some people, please understand I am

not 'bashing' them. It is unfortunate the price is so high and travel

is required.

Gretchen

[Guest guest]

Amy,

 

You should probably contact Mitch Warner direct at Ortho Rehab Designs.  He made

braces for me, they are expensive, but at the same time they let me walk

normally again.  Since getting them, my calf size has gone up a 1/2 " , and this

was something not expected.  Mitch is a nice person, and I know he has helped

other people with finance problems, as I referred a friend's son to him. 

 

He fits all types of braces, he showed me ones that work for CMT, that were not

carbon fiber, and they were far less expensive.  I chose the carbon fiber.

 

Sheila