I do and have for 3 years and would just like to know if i am the only one out there that does or if there is anyone else that does. Mine is on my right leg and i have to have it on if i want to leave the house. I can feel my toes but cant move them.
Sorry I didn’t reply sooner–we’re on vacation.
Chari wore an AFO for probably 10 years. It was one giant pain in the butt. Hot in the summer, cold in the winter, gave her sores on her calfs, and required her to buy two pair of shoes to make the sizes work. Her’s was on the right side also. Her condition was called “foot drop”, and showed up after one embo.
Her right leg atrophied some also, and it really messed up her walking, and caused her back pain.
Probably about 2000, she went to a foot / ankle surgeon and after doing a lot of prodding/probing, said with a 50-50 chance he MIGHT be able to operate and correct the foot drop. Her foot dropped forward and to the right.
His plan was to do a Split anterior lateral transfer (I think is what it was called). He cut the ligament that went to the big toe, shortened it to raise her foot’s natural position, and split it to attach part of it to the outside top of her foot, to bring the twist back in line.
The only thing he would guarantee was he could get her in a SMALLER AFO. By this time, she was ready for it.
Her surgery went better than he expected and now she can walk without tripping over her foot. She no longer needs an AFO. She won’t every be able to run, or point her toes, etc, but who cares?
The other thing that was essential for her recovery was that AFTER the physical therapy was complete–they won’t continue treatment once you plateau a little–was that we found an excellent personal trainer.
The PT (almost equal parts angel and drill instructor) was good enough, she got access to the medical records, and saw which muscles still worked and which were toast. Then she went to work building up the existing muscles to compensate for the others. The results have been nothing short of a miracle.
I’m sure not all cases turn out this well, but if you haven’t, I would encourage you to talk with the best ankle/foot surgeon you can find to see if they can offer anything. It’s a tough struggle–12 wks in a cast, lots of therapy and personal training, but for us, the rewards are tremendous.
Hope this helps.
Ron
I am a 29 year old woman that has to wear AFOs on both legs. My legs and mucsles are bad, without the AFOs my feet were dragging, I dont have feelings in them so I didn’t realize until I had sores on my big toes. So I have to wear them as much as I can. I got light purple ones with butterflies so it wasnt as scary for my kids, or even me i guess. They do get sticky hot in heat and cold in the cold, so I got thin soft material and cut it to the shape of the AFO on both legs. I plan to put small velcro on them to hold it in place but for now I hold the material from the top slip my leg in velcro the straps and pull on the material so there are no wrinkles! It works too!!! As for the shoes, I miss flip flops and my converse chucks but thats ok because i can at least walk better! The important thing to remember is to strech and exercise the leg to help prevent muscle wasting (atrophy). You should be able to go to your doctor or local physical therapist and ask for a print off to show you how to do these streches/excersises, and you may have to buy a rubber work out band or find a loved one to help you do these! I wish you well and apologize for any typos!~Jessie
THANKS FOR ALL OF YOUR RESPONSES…I DO APPRECIATE THEM! I HAD TO START WEARING MY AFO AFTER I HAD MY BLEED AND BRAIN SURGERY. THE TONE IN MY LEG HAS MADE MY NERVES NOT WORK LIKE THEY ARE SUPPOSE TO. IF I DONT HAVE MY BRACE ON MY FOOT TURNS IN AND ROLLS MY ANKLE OUT. i GUESS THE HARDEST PART FOR ME IS THAT I CANT RUN AND JUMP AND PLAY WITH MY FAMILY LIKE I USE TO. I USE TO PLAY SOFTBALL. I WANT ALL THAT BACK BUT JUST DONT THINK IT WILL COME BACK. I CAN TELL MY LEG HAS SOME ATROPHY BUT NOT MUCH! I DO SOME EXERCISES WITH MY LEG. MY HAMSTRING IS THAT IS SHOT. IT WONT REACT TO ANYTHING. I PRAY EVERYDAY THAT IT WILL JUST WAKE UP ONE DAY AND WORK.
THANKS FOR ALL OF YOUR RESPONSES… GIVES ME SOMETHING TO STRIVE FOR!
i used leg brace in my right leg…i used wheelchair too…
Hi Tara,
I wear an ankle brace everyday and it is something that I along with my family have learnt to laugh about. Everywhere I go, everyone seem to ask as to what happened and all I say is that this is the aftereffects of surgery and leave it at that. It is quite entertaining when I have to dress up and have an ankle brace while I try to walk in my dress shoes…lol. I have no sensation on the back of my leg just above my ankle and of course with my weak lower right leg…its a must to keep the brace on if I were to go anywhere…so have courage and know that I am walking with you in-brace side by side okay.
o i do laugh about it daily with my family also!! they are always telling me MOM DONT FALL … and giggle!!! i am use to it and have been for 3 years… was just curious if anyone else wore one.
i get comments like… wow that is a mighty big bruise you ahve on your leg… ( BRACE IS GREEN CAMO!!!)
or they say wow that is a heck of a break to wear a brace that big …all i say is i wish i would have broke my leg!! i just get alot of staring !!! kinda gets old!! I have to wear tinny shoes because i cant move my toes… i cant keep anything on unless it is tied on… so i cnat wear dress shoes or flipflops… whick is the hardest part…
i manage though!!
Thanks for the reply
Liz Chamberlain said:
Hi Tara,
I wear an ankle brace everyday and it is something that I along with my family have learnt to laugh about. Everywhere I go, everyone seem to ask as to what happened and all I say is that this is the aftereffects of surgery and leave it at that. It is quite entertaining when I have to dress up and have an ankle brace while I try to walk in my dress shoes…lol. I have no sensation on the back of my leg just above my ankle and of course with my weak lower right leg…its a must to keep the brace on if I were to go anywhere…so have courage and know that I am walking with you in-brace side by side okay.
OMG i am so glad i just read your post.. I dont get on this site all that much anymore.. i should have alot sooner.. Thank you for the information. I am also tired of wearing an AFO.. i dont wear shorts or capri pants because i am very self concious about it. I do have one more question... is she paralyzed in her toes? I am .. i can feel everything but cant more them. My ankle also turns to the turns to the right because of tone..i get botox every 3 months but that doesnt seem to help any.
i will definately check into a ankle/foot surgeon and see what he can do for me.
thank you and i will definately check back sooner to see if you responded.
Tara
HI Tara,
Wow, an OLD post of mine. I think since that post, Chari has gotten a "Walk Aid" which is a device that stimulates leg muscles to assist in walking. It really helps her, but it was about $5,000. It's about the size of a small blood pressure machine that fits on the outside of her right knee.
Her toes were not paralyzed, just nerve damage to her right leg. The foot surgery corrected the foot drop, which made it MUCH easier for her to walk around the house. Before that, her right foot angled down and out. Surgery pretty well fixed that.
Best wishes,
Ron, KS
Hi Ron,
I am very interested to read about the Walk Aid. From their website I see that it is contra indicated for anyone who has seizures -- is this your experience?
Thanks,
Sophie
Good catch!
Chari's EEGs still show abnormal electrical activity, so she's still on anti-S meds. She's not had a seizure for many years though.
She met a lady who had gotten one for foot drop following a stroke, If I recall correctly. That lady had had great results.
Chari's neuro was totally negative about it initially. Said he didn't think it would help any, and not being covered by insurance, might be a waste of $$$. The Aid place did a lot of testing on Chari, even they weren't sure if or how well it would work, since she had the brain AVM and treatment.
She went to a place that dealt with them and was fitted for a "demo" unit. She literally test drove it for 2-3 weeks, liked it, and purchased a new one.
They do require maintenance: Normal sized Batteries in the unit go bad. The pads (sensors) that go on your knee have to be stored properly when not wearing it, and they require replacement every few months for around $50 (IIRC).
Hope this info helps.
Ron, KS
I asked about the Walk Aide from the place i get my AFO's made and they tried to fit me for one and told me that it wasnt strong enough to get my foot to turn the way it needed to. I still think she didnt try hard enough to make it work.. I would love to get rid of this Afo and be able to wear other shoes besides Tinnys all the time.
I will look into the foot surgery though.
Thanks
Tara