Hi!
I was wondering if anyone would be able to share any experiences with me?
My mum has CIDP and has a ankle-foot orthoses (splint) but does not use it. I was wondering if this is common and if you do wear an orthoses what type (insole, splints, etc)?
I currently study Prothetics and Orthotics. I am doing a presentation soon on CIDP and would like to relate it to my course.
Any opinions and stories would be much appreciated!!
Thanks,
Melisa :)
An AFO is probably the most common device and as you know is used to prevent drop foot caused from weakened muscles that DORSIFLEX ( pull up) the foot. The AFO prevents falls by holding the foot up. I have been asked to get one but have resisted b/c my feet get stronger after IVIg.
I refused to wear AFO’s because of pride, I went through a stem cell transplant in March to halt my CIDP and for 4 months after I gave in and wore my AFO’s because my legs were weaker and I tripped a lot. They were the best thing ever to help me walk and now I have my strength back from results of my transplant and I’m back to normal.
Thanks everyone! I agree, orthoses don’t look great but they do a great job. Do any of you wear specialised shoes?
Also , mdolich would it be okay with you if I used that photo in my presentation?
My doctors now have my wearing shoes for diabetics to protect my feet even though I do not have diabetes. They look a lot like the shoes above except they are white. They are definitely a breeze to get on and off, although the weight took a little to get used to.
I wore a cheap orthodontic device for a foot-drop, prescribed by Kaiser ( Maui) that destroyed much of my leg: my knee went too far back, my hamstring stretched out of sync, my high-stepping gait was not helped and my gait suffered causing lower lumbar pain and aggravation. I also think the AFO caused a hernia. Eventually, I had to go to a customized and expensive afo (prescribed by different HMO) to correct these problems. However this new afo immobilized my ankle and the surrounding foot muscles were weakened. Now I'm getting 2x weekly physical therapy to bring back the strength and function that these afo's brought me. However, with the second afo I rarely trip, fall, etc.
This customized AFO ($1250) needed constant adjustment (heating up with a spelized hot air blower, then bending to fit my odd foot bones, however this in turn caused rubbing and blistering on other bones. I find that I am constantly having to pad different parts of the AFO with neopryn from an old wet-suit of mine, with black electrical tape to eliviate rubbing and blistering.
My current AFO is black, thick plastic with velcro. It looks like Darth Vader's lower leg and since I wear shorts here Hawaii 24/7 I get stares and kids asking if I know Darth Vader personally.
If my CIDP had been diagnosed when symptoms first appeared in 2001, I most likely would not have had the foot-drop and a life time of IvIG. I also have high arches and corrective inserts really help. I wear Birkenstocks for walking and Aqua Sphere (blue shark shaped fins) for swimming. In Hawaii, because of the constant oppressive heat and humidity, I need breathing shoes, sandals, tennis shoes and I get size 12 EE which allows my AFO to fit into shoes and this size gives me more surface area which helps my balance and stability.
Not wearing an AFO for a foot drop can cause severe problems, problems that can radiate all the way to the neck, believe me.
I wear Otto Bock AFOS with custom made orthotics. They are made of titanium steel. They are very light weight and comfortable. The really help me with with not tripping and stability. I wear them in New Balance shoes with rollbars .
I posted a pix if them on the photo gallery.
I too resisted Afo’s for foot drop, but when my P.T. cautioned me on the dangers of breaking something in a fall, and the potential resulting additional challenges, I agreed to try them. I have had neuropathy for 4 years and have tried about 5 or 6 different styles. I have a pair for my hiking boots,Ossur,AFO Light, and a pair for my ‘everyday’ shoes,Ottobock, Walk On Trimable.
I try to only wear them when I am leaving the house, so that I can maintain some better muscle tone by walking without them in the house. I wear socks and occasionally, slippers in the house. These AFO’s have lasted the longest of any of my AFO’s. They are flexible enough to make me work, but still provide some support as well as safety, preventing foot drop. Everyone is different, but I cannot recommend these enough. I do wear at least a 1/2 size larger, but wear them with nicer shoes as well as casual or athletic shoes.
I cannot thank you all enough for sharing your experiences! It is great to hear from so many people. I will definitely be sharing some of your stories with my class mates during my presentation. Thank you!
No choice for me. If I want to walk for any distance, I have to wear afo's. No choice in the matter. The damage was too great and was told that dead nerves do not regenerate with the hsct, only damaged nerves. I choose life over pride. So I currently wear a whitish afo. I would like to try some of the others out there but I live in a one stop light town in Northeast Michigan and there aren't any companies around here. I will have to check out some of the cities about an hour or so south to see. I, too, was dx late. I was paralyzed, and bedridden before any kind of treatment was given.
I wear custom afo braces as well for foot drop. It’s hard as a teenage girl because they are far from fashionable. I originally had off the shelf ones that went up the front of my shin but I found them to be making my knee hyperextention worse. My custom ones go up the back of my legs and definitely help to increase my balance and even my foot sensation.
The hospital made custom AFOs for me and I used them for the several months I spent in the hospital trying to learn how to walk again. That was while coming back from total paralysis and severe atrophy. Came home in a wheelchair and for the next few months, I used the AFOs for my physical and occupational rehab as well as walking in general. If I was out of the wheelchair, I used the AFOs. They really helped during that time, buy just like the chair, my walker, and my canes, I always viewed them as a transitional tool to get me walking on my own. Now they live on the floor in my closet, the wheelchair makes a comfy computer chair, and I only carry a cane on my walks when the coyotes are howling. They give me the creeps on a dark night walk. haha.
So glad your nerves were damaged and not dead. The damaged little buggers take quite some time to heal, but thank God they can be repaired. The docs at the U of M were hoping that the nerves that were dead in my feet and ankles, could somehow form new pathways that could take over the jobs of the dead nerves, or at least some of the extremely damaged ones could still regenerate if synapsis was possible. I so wish enough repair could take place so I could abandon the afo's. I really despise wearing them, daily. But I have to move on and quit feeling this way. I have to learn, somehow, to accept things... I guess it is what it is.
Jeff said:
The hospital made custom AFOs for me and I used them for the several months I spent in the hospital trying to learn how to walk again. That was while coming back from total paralysis and severe atrophy. Came home in a wheelchair and for the next few months, I used the AFOs for my physical and occupational rehab as well as walking in general. If I was out of the wheelchair, I used the AFOs. They really helped during that time, buy just like the chair, my walker, and my canes, I always viewed them as a transitional tool to get me walking on my own. Now they live on the floor in my closet, the wheelchair makes a comfy computer chair, and I only carry a cane on my walks when the coyotes are howling. They give me the creeps on a dark night walk. haha.