I really hope this article is able to help somebody that has been given the misfortune of being diagnosed with Cauda Equina Syndrome. I know I sure would have appreciated seeing one.
As if being diagnosed with some “rare” off the wall back injury isn’t enough, I remember the Dr. telling me that I would most likely need an Ankle Foot Orthotic (AFO) brace to help me walk. I absolutely did not know what he was talking about!!!
I mean, seriously! I just had a major operation on my back, and now I can’t even walk. I am doped to the gills, and yes… I have the horrific back pain that your Physician Assistant kept telling me that I would have.
For starters, it would have been nice to elaborate a bit on what an AFO brace is, which by the way….AFO stands for Ankle Foot Orthotic. Makes more sense that way, huh!?
I don’t know how your Dr. brought it up to you, but that’s how my Dr. told me. I had asked the Physician Assistant for the prescription for the AFO and he told me that “you really don’t want that, because people say it hurt’s their feet.” Well, yes, I did want it.
The Dr. said I would need it to help me walk again, so I pointed out to him the fact that my foot is completely numb now. I hardly think anything is going to hurt it!! On my third visit there, once again I asked the PA to write me the AFO prescription, and he finally did. After this nonsense, it was the last visit I had there.
I would also like to add, that this is the same PA that told me “Cauda Equina Syndrome is not really that rare.” I asked him “what search engine do you use?”
I went to a podiatrist that took measurements of my foot, and a cast. They said to go home, and they would deal with the insurance company. It took about two months, and then I got a phone call that my brace was in.
I was told to bring a pair of shoes that were lace up and kind of wide with me. I was all excited like a kid in a candy store, but that was short lived. You’ll see why in a moment......This is the AFO brace that was made for me.
I went into the back room, and the shoe fitter (I have no idea what he was), put the brace in my sneaker that I brought, and used some sort of funky looking shoe horn so that my foot slid right into the shoe with the brace, and it hurt like hell!! It was way too tight!!
This was actually a sneaker that was way too big for me already, so I knew none of my shoes were going to work with this. Then he told me that I would probably need an orthotic shoe of some sort to wear with it.
This is the orthotic shoe that I wore with it…
And this is what it looks like when I wore it.
Luckily, my left foot doesn’t have foot drop, so I found a shoe to wear that was almost as high up as the orthotic shoe that I had to wear. This alone was not good for my back, because now I’m walking kind of crooked, but that’s all I had to go with.
Nobody in physical therapy said anything to me, and no other Dr. had any words of wisdom, so I practiced walking around the house just to get my balance. I didn’t wear it that much because it didn’t fit in any of my shoes, and it was making me walk crooked, but it never hurt my foot.
Fast forward into nearly my second year of trying to cope with CES, and this walking thing is really getting on my nerves, so I turned to Google, and started looking up AFO braces.
I just really wanted to be able to walk and be able to wear the same shoe on both feet!! I don’t know what type I need, I don’t know if you’re supposed to have a Dr. suggesting these to you, because I certainly have not. I am just trying to correct my walk and feel kind of normal.
So I came across this AFO spring leaf brace. It really is amazing!!
It is light weight, and not big and bulky like the one that they made for me. I kind of wonder why they even wasted their time….
Anyhow, this fits into almost all of my closed shoes, and I love it!! It supports my ankle, and I like how it is a light color.
I have been wearing this and walking all over the place. I have always had weak ankles, and for me, I really like to wear this with a pair of high top sneakers that I have.
The problem that I ran into with the AFO leaf brace, and other’s like it, is that my wardrobe was limited. During the cooler months I was able to wear the leaf brace with a long dress, and a big sweater over it. Then I donned a pair of shoes that kind of looked like army boots. I got sick of wearing jeans all of the time too.
If I wear a sock, I can wear the brace with my booties at night. This way I can walk around the house, somewhat right, without having to wear lace up shoes when I just want to be comfortable. I highly recommend this brace, as it has done wonders for me.
The only problem is that I would like to be barefoot in the house, and I’d like to be able to wear a pair of sandals. So, I went back to Google, and searched for a brace that I can wear with sandals, and I found this brace.
This is by far the best brace that I have found. If your ankle rolls, this will not work for you. As you can see, there is no support for the ankle. My ankle is just really weak when it comes to walking, and I can’t lift my foot up properly. This helps with that.
I am able to wear a few of my sandals with it, and to walk barefoot!!
There is a cuff that you wear around your ankle, and two separate pieces. One piece you put around your foot and then it clasps to the cuff on your ankle. This is the piece that you wear to be barefoot or with sandals. The second piece is clear and you tie your shoelaces through it, and then clip it to the cuff on your ankle. I am so glad I didn’t throw half of my shoes away.
I definitely love the barefoot part!! I can also wear my house booties with it. I do walk a bit slower with this brace, because the ankle support isn’t there, but I feel like this will build my ankle up to get stronger. How could it not? I’m using my ankle more… I use this brace the most, but on days that I just want to get in and out of somewhere, I use the AFO spring leaf for the support.
The only problem that I am starting to have with this brace is with the ankle cuff. The straps are beginning to not want to stay closed on the cuff. Perhaps down the road I will have to improvise. We shall see.
For the most part, I have been on my own with this. I practice walking every day in the house. My husband had put hand rails up around the house after my surgery, and I have noticed that I’m relying on them a bit too much. If I’m walking down the hallway I grab the walls, and am forever holding on to things, but it’s becoming a bad habit. I am working on correcting it.
It has been nearly two years of walking crooked and the left side of my back was getting pretty sore. With this brace I can feel myself walking straighter, and my muscles are so darned sore because now I don’t seem to have the lean to the left, and it is as if I am retraining my body all over again.
I always exercised my feet every day while I was waiting for my first brace to be made, I still do. I recall the nurse at the Dr.’s office telling me “if you don’t use it, you lose it.” Who knew tracing the A, B, C’s with my feet would become such an essential part of my day, every day?
What I was not told is the fact that while using the brace to help me walk, it also helped some of the muscles in my foot to become nearly useless.
I noticed one day after using it for awhile that my foot wasn’t working as much in certain places as it was before I started using it.
So while I am now starting to walk straighter, my foot has lost significant use. It is trying to work, but I don’t think it will ever work properly again.
The part that goes around your foot is soft, and those muscles can still work. If I had started out with this while my foot was still working, I believe I would still have feeling in it, and more use of it than I do now.
Perhaps if the Dr.’s had been a little more caring, and could have advised me earlier on, I wouldn’t be as bad at walking.
I could feel my foot after the surgery, but I was unable to even start walking until my sixth month in. When I came home from the surgery I was not in pain like before, but my feet were like two big balloons and I might as well of had no ankles. My legs were swollen, and they didn’t work.
To top it off, none of the Dr.’s that I’d seen had an answer for the swelling or when it would even go down. One Dr. told me it may never go away. In fact, I still have the swelling behind my right thigh and butt cheek.
Perhaps you can elaborate more on what your Dr.’s and surgeons advised you to do for the foot drop, as I would love to know!!
For anyone else that is in the same boat, I really hope that I was able to help someone out on my journey of living with CES.
It truly is a learning experience on how to live again.