Which Knee Brace for CIDP?
AnonymousSeptember 5, 2008 at 11:28 pm
My wife’s falls are getting worse and now must get a knee brace to either spring her leg into the locked position as she walks, or manually locks in fully extended mode. Currently, if she has weight on her leg and the knee bends even a little, she goes down hard.
I hate to see her in a stiff leg brace without trying one that has stiffener bars to extend the leg, yet bend to sit. I keep thinking there must be one that when swinging the leg forward “springs” the leg locked, yet allows her to sit down bending it.
My problem is I have spent many hours looking for them and all I see are those to prevent the knee from extending and lateral movement.
I am very interested in your experiences with, or knowledge of, knee braces of this type.
AnonymousSeptember 6, 2008 at 2:44 am
I understand your problem with knee braces, would a walker be better? If her knee gives out that badly, and supports her poorly, a walker could do both.
One of the things we learn with CIDP is to take advantage of whatever tools we need. Grabbers help pick things up, walkers help us get around. Everything is a tool to help.
AnonymousSeptember 6, 2008 at 5:13 am
Hi, I have a tiny suggestion. If you can, can your wife be seen either by a rehabilitation doctor or go to a place that specializes in orthopnics? Since she has nerve and muscle problems, a knee brace on one side is going to make a big difference on the other leg and it is really hard to balance all this without making something worse. For example, it she has a straight leg brace, it might be really, really hard to stand up if the other side is weak because it takes a lot more strength to do this if the “bad” side cannot help. The other reason to get “professional” help is that it is terribly important to minimize the chance that the “bad” side gets weaker. This means that you want that knee to still have range of motion and still do some “work”. One has to think about now as well as the future in these illnesses. Yet another reason to get this made for her especially is that it is so important to have it fit right so that sores/sore places do not happen that she might not feel as well or heal as well as someone without CIDP and polymyositis.
You said that your wife has an excellent neurologist who has lots of unusual patients, so you probably could start there. Call to speak to him or someone at that office and explain that you wife is falling a lot more and having stability issues and a lot more trouble walking and you wanted to see if there was any bracing or support to help prevent falls. I was told by the people at the rehabilitation hospital where I went to make sure that any request emphasizes safety and uses “falls” because these are like key words. Also to say negative impacts that the problem has–such as that she is getting weaker or cannot safely get up herself to go to the bathroom–again using safety and an essential thing to do in life.
I went for braces for footdrop to a place that specializes in orthopics and they were great to think about how to support what needed supporting but not overdo what muscles/stability challenges these changes would make on the rest on me. A knee brace will affect hips and back, but more importantly people have to be strong enough to compensate for the changes that happen with braces. I have seen really good knee braces in my work with children with cancer, but I also have seen a lot of problems when things are not thought through enough considering the whole person and not just one joint. The most functional braces in this type situation that I have seen have a locking mechanism that one can put on and off (off to help with sitting and on with walking). I agree with Dick that other options like a walker should also be considered and tried to see in action which one works best for your wife.
WithHope for a cure of these diseases.
AnonymousSeptember 6, 2008 at 6:19 am
I agree with hope about seeing a rehab orthopedic. Sometimes they can make special braces for those in need of a different kind of brace. Sounds like she may have to have a special made kind.
It’s worth a shot in calling and asking about!
So sad to hear about your wife and I pray she gets better soon!
My mother had a problem falling with her knee alot many years ago and they did a knee replacement on her and after they did that it helped her alot. She too has a nerve damage problem in her legs! But the knee replacement made a change for her. Just depends on the patient too! I hope she get’s well soon!
AnonymousSeptember 6, 2008 at 3:21 pm
We saw her CIDP doc Thursday and he recommended a locking knee brace that unlocks to sit down. He said only wear it on the weakest leg because it’s hard to walk with both legs stiff. Problem is it depends on the day for which is weakest.
He agrees with trying a brace that pushes the knee into a locked position via stays or rods, etc but wrote the script in case we go the other way. If we can find one that she can wear on both knees I believe she will do well longer.
She’s had a walker for a while and uses it when things are bad, mostly when recovering from a fall as she is now. When not using the walker she uses a cane which is a big help and she no longer is self-conscious about it. She does really well on flat ground with the cane when she locks the knee as she puts weight on it. We think such a brace will help that even when she gets distracted.
She will most likely be in a chair someday, so she wants to do as much as she can in between. She is full of determination and will not go quietly into the chair.
AnonymousSeptember 7, 2008 at 1:49 am
Looks like I’m talking to myself again…. Don’t any of you use a knee brace?
Well, I haven’t stopped looking and after a month of searching I finally figured out why I can’t find what I need. Knee braces are mainly to prevent full extension which is just the opposite of what I’m looking for. However Polio Leg Braces are the same. With the Post-Polio disease recognition, has come some help. I found this article that got me all excited and then the link to Dynamic Bracing Solutions referred to in the article.
I’m still looking but thought perhaps someone on the forum might find help in this direction.
AnonymousSeptember 7, 2008 at 3:00 am
There are locking braces that will help your wife. I can’t remember the brand name, but I do know the one I was going to get was only available through a physatrist. My physatrist was recommended to me through my orthosurgeon. I’m not sure if you can get a name for one just by calling an ortho or not, its worth the try. The one I was going to get was the full leg length with a hinge at the knee that you could unlock to sit. I was told I would need one on each leg, to avoid muscle tension problems on the stronger leg. Since I was having alot of stability problems, knee weakness, muscle weakness etc I wasn’t a good candidate for the type my dr had in mind-they were too heavy for my hips and back to operate with, the muscles in the hips and back needed to be stronger in order for my legs to move properly. Along with foot drop, it would have been a total nightmare to walk with stiff legs that weighed 15pounds heavier(well maybe not that much, but it sure did seem like it at the time) Maybe a rollator would be easier for your wife to use. There is also a soft brace that you might look into, its called a j brace. Its really meant to keep the patella stable while walking, but I found it helped stablize my knee-not allowing it to fold under pressure. It is alittle hard to get on if the hands and arms are weak though-it takes muscle to pull it up because it is tight fitting-neoprene.
I hope you can find something that will work for your wife. Don’t give up! I can’t blame her for wanting to do as much as she can outside of the chair! Take Care.
AnonymousSeptember 7, 2008 at 2:28 pm
After my last post about striking the “mother lode” for CIDP braces, it turns out the one site I listed is the only one I found. I sent email for info re support for CIDP, and I expect a positive response as they state neuropathies in their applications.
Also, their website takes first place for long winded boring text. I kept wanting to paste it into Word and cut the dozen or so pages down to a couple paragraphs.
In amongst the blather, was good information like my wife locking her knee to walk is a bad thing as she will get a condition where the knee locks beyond vertical and braces don’t work right. That tells me we at least need a brace to stop the knee at vertical if the other doesn’t work out.
So, I’ll post more when I get a reply to me email. I’m going to stop looking until then – I need a break.
AnonymousSeptember 7, 2008 at 6:49 pm
I hope you get lucky for your wife and find the brace she needs! She sounds like my mom! My mom is so close to being in a wheel chair herself but refuses to give up! Let your wife do as much as she can. She sounds like a fighter and it trying so hard not to let her legs give into that wheel chair! She’s trying so hard and that I admire her for! I wish you and your wife my best and hope that she never see’s that chair! I will keep her in my prayers! Hugs!
AnonymousOctober 2, 2008 at 1:31 pm
I’m writing to pass along my latest discoveries regarding knee bracing. As a result of CIDP, my wife has lost 80-90% of her quadracept strength in both legs. If either knee starts to buckle she cannot control it and falls, causing damage.
It is always when walking that it happens, so I have been searching for a device to “force” or at least encourage full leg extension. She does not have the foot drop so I focused on knee devices. After many, many hours of searching with a lot of rabbit trails followed, I finally now know what I have been looking for. They are devices called Floor Reaction AFO (FRAFO). When weight is put on the foot in a normal stride, the device pushes against the upper shin to lock the knee. As weight comes off the pressure is released.
Once I found the right terms more options showed up. The literature for them even states they are for neurological conditions. I found them from Becker Orthopedic, Scheck and Siress, and others.
I also found a few Extension Assist KAFO devices. One with gas struts, another with a coil spring, a couple automatic locking KAFO’s electronic or mechanical. They all look heavy which is a concern for us. Some of these devices are called “Stance Control” KAFO’s which may not be reimbursed by insurance, but the info I found shows that FRAFO’s are.
If you are using a walker or chair but have some walking mobility, you may want to take a look. Just Google “Floor Response AFO” or “Ground Response AFO” (GRAFO). I hope this saves you the many hours I lost finding them.
AnonymousNovember 1, 2008 at 5:10 pm
The company in San Diego “Dynamic Bracing Solutions” does not take insurance. I did find a company in Las Vegas that manufactures very similar devices called Ortho Rehab Designs, [url]www.ordesignslv.com[/url], and they accept Medicare and probably some others (but not United Health Care).
I’m sharing this because it appears to be very beneficial for CIDP with quad atrophy. My wife has experienced knee buckling and uses a walker now. Their web site has this to say:
We design dynamic bracing for most types of neurological disorders that cause drop foot syndrome, and balancing problems:
* CMT Bracing
* Polio Bracing
* CVA Bracing
* MS Bracing
* MD Bracing
As well as many other neurological disorders.
The videos from the first site brought tears of hope to my wife and I and I just pray it works for us. I’ve spoken with the specialists at both companies and each was definite in their belief they can stabilize my wife’s legs.
Unfortunately we have to wait until she gets on Medicare in a few months, but at least we see an alternative to the walker and hopefully to the chair, at least for a very long time.
You must be logged in to reply to this topic.