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Im new to foot drop - please Help me?
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Foot Drop is a support group. The goal of group is to share information, and connect with others dealing with foot drop. Foot Drop can be caused by stroke, back or spine injury and tumor.

Founded by FMDAdvocate on February 15, 2011
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Im new to foot drop - please Help me?

Hello,
I a 31 yr old girl from Scotland. I had an accident in Dec 2011 where glass cut the back of my thigh above my right knee and everything apart from my bone was transected including my sciatic nerve, which instantly caused foot drop in my right foot. I have no feeling from below my knee so everything is numb and there no movement in my foot it just flops from side to side like it doesnt belong to me.
After going through an 8hr surgery to reconnect the tissues and the nerve, i know it can take months if no years before the nerve will regenerate to my foot if atall, so I am trying to have the mind set that this is permanent for now and whats the best way to cope with it on a day to day basis.

Ive been given an orthotic from the hospital which was a ready made black leather ankle cuff which attached to my shoe laces and a strong rubber band pulls my foot upright. I still cant weight bare on my leg so havent tried it out yet.

I know there are so many other more subtle AFO's out there, ones I can hide insdie my show for example. As this is all new to me I cant help think about my vanity and how I would like to find something that will keep my foot up but that no one will see.
WHat about swimming and wearing sandals? Will I be able to snowboward again? So many questions are going through my mind right now.
Any expriences from others would be so appreciated right now, i feel so alone :(

thanks for any replies

Emma xx
12 Comments
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Avatar_m_tn
Hiya,

I'm Jenna, 27 from Wales. I slipped (2 years ago this April) and damaged the ligament and nerve in my knee. I've been living with foot drop in my right foot every since. For the first year (after being passed from pillar to post in the NHS system) none of the Doctors realised the extent of the damage to the nerve and thought it was simply 'shocked' and would come back to life in time. It was only last august that I finally had exploratory surgery to see what was wrong and at the same time the Doc saw that there was extensive nerve damage so performed a graft.

Because there was such a large chunk of nerve that needed replacing they harvested the sural nerve from the back of the same leg (I now have a very sexy scar running up the back of my leg :P) Because of the delayed time the surgery only has a 2 in 10 chance of working. I'm not expecting miracles and have pretty much resigned myself to the fact that I am going to be living with it for the rest of my life.

I was given the foot brace you have described as well. Its called a Foot-up. I still used it occasionally, but the orthotics people in the local hospital fitted me for a plastic brace which goes up the back of my calf to hold the foot in place. It was uncomfortable at first but now I prefer it to the Foot-up as it gives a lot more stability when walking. I feel more secure walking with it on. If your wearing long trousers you can't see it at all. I've done a hell of a lot of googling different AFO's that are out there, and will be more than happy to copy web pages to you that seem to have interesting ones on there. They are all so expensive though and its only the big clunky ones that you seem to be able to get for free through the NHS. There are some really amazing Carbon Fibre ones that I have seen online and saw a youtube clip of someone being able to sprint in one.

Anyway, I think I've waffled on enough now :) If you want to know anything else feel free to ask! I remember how hard it was finding out information on Foot drop in the beginning.

Take Care

Jen
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Avatar_f_tn
Hi Jen,

Thanks so much for replying to my questions :))) aplogies in advance for typing erors :)) his is an old lap top.

That was a reall shame about your injury :(  I bet you are quite annoyed with the docs that they didnt investigate your injury more :( I have read that the more time passes before surgery that can reduce the outcome and a graft more so, but did you notice any improvement atall, even any more skin sensations developing?
How about your nerve pain? The tingling pins and needles all all all the time :( Does it fade over the months? I hope when th nerve gets to a point when it decided right that it, I can regeneate anymore, I hope I dont fel it anymore, Im worried I wil be plagued with this for years to come?? Hows yours since your surgery in Aug?


I too have been googling loads about fot drop and nerve damage and from what I now know it ultimately it just comes down to time, patience and luck as to how our nerve decides to end up, 1 inch a month !!!

I know its still early days for me, its ony been 8 weeks since my surgery so I know I still have the hope that within 2 years I could get back some sensation, even movement, but I like you feel like the foot drop is something I am going to have for the rest of my life. Maybe Im being too neative at this stage thinking that way, but as the nerve has to grow from above my knww to my toes to get y ffot working again, I just cant imagine it will ever happen, the foot just flops about it just seems so impossible right now.
So I think it s better to assume the worst and try to make of the best of that then as I said before, anything more is a bonus :)

I know have my brace off and Im allowed to put light weight on my foot and to do some stretches until my physio appointment comes through any day now. My leg wont go straight atall just yet as my hamstring is so tight but i know the pysio will sort that, god help me :))

So I think i have wtched the you tube clip your referring to about the guy that sprinted with the afo on. Am I right in thinking you have 100% foot drop like me? Unble to even wiggle your toes or move your foot in anyway, basically paralysed?
I wandered while watching that video if that sort of afo would only work for someone who maybe only had partial foot drop i.e only loss of dorsi flexion but maybe they are able to move their foot from side to side and self supposr their ankle? I dont feel I have any ankle supposr as my foot just wobble but I hoe that something I can master the more I get used to walking on it.

I would ove it if you could send me some web links. I have actually already the dorsi lite foot splint which should arrive any day now. It was only about £40 and looks like it wil be good for lounging about in to keep my foot supported, asell as being water proof for bath and shower, you can wear it to bed and also will fit into most shoe and boots, its worth a try. I have a heavy blue boot the hospital gave me which I have to wer about the house just now and wasnt willing to wait to see what the NHS was going to give me. Ive been told the physios will advise me more on orthotics but like you do know that the NHS will no doubt give out horrible blky things and I would be willing to pay for something more hi tech if I can find one.

Have you used the dorsi lite? Also I ws told by the docs that I might not be able to run and do some normal activities, have you been doing any activities with your foot drop?

again thanks for your time :)

Emma x
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Avatar_f_tn
this is what I have ordered

http://www.x-strap.com/products/Dorsi_Lite_Foot_Splint_For_Plantar_Fasciitis_Foot_Drop_Achilles_Tendonitis_Heel_Spurs_Shin_Splints_Sprained_Ankle_Rehab_WHEN_NOT_WEARING_SHOES_Guaranteed-3-1.html
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Avatar_m_tn
Hi

I don't have a 'complete' paralysed foot. I can flick it slightly to one side, kind of twitch it and twitch my toes as well. It pretty much just dangles lifelessly though unless I make a conscious effort to 'twitch' it.

I remember when I first injured my knee and the most god awful pain from my foot! I had no idea what it was at first, but in hindsight I realise now that it was my ligaments on top of my foot stretching too much as the achilles tendon shortened because I couldn't hold it up. I didn't know what it was doing at first though, and it took a while (and a month long wait for a referral) for the hospital to realise that it was foot drop. By that time I had already figured it out through googling my symptoms.

The nerve pain after the graft was horrible at first. Pretty much the end of August last year/ October-November ish time I didn't have a decent nights sleep all night! I had 5 weeks off work after the op and then was on a phased return for a month and there were days where I would have to e-mail my manager at 5:30 in the morning to say there would be no way I could come in because my twitchy foot meant I hadn't slept a wink! Eventually I was given Tramadol off the consultant that did the op (its supposed to be the best first port of call for nerve pain..) but I'm not sure how brilliant it was as I still remember odd twinges. I did sleep better when I had it but I think that was just because the opiate based elements in it knocked me out! There is another drug that you can have, and that I would have had if the nerve firings lasted any longer.. but they use that as a last resort as you have to build up a tolerance to it and it has nasty withdrawals coming off it.

My foot/nerve doesn't twinge on a day to day basis now. Every now and then it fires and it feels like my foot is spasm-ing.. but not very regularly. I have no extra sensation anywhere after t he op (which is what makes me think it hasn't worked), but I have a follow up with the surgeon this week so will see what he says.

When it comes to activities, I am quite sedentary. I do a lot of walking/hiking etc and that is fine.. obviously my foot gets tired really easily and I have to be careful wearing the right socks with whatever brace I am wearing otherwise it becomes really painful and sore. I have gone traipsing around mountains and festivals with the Foot up and been o.k. I'm not sure about running. The strong plastic brace I have at the moment is much better for a jogging sort of motion. The foot up is impossible to run as it won't support your foot enough.

Hope all this makes sense/helps!

Jen
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Avatar_f_tn
Hi,
It's good to meet you but I am sorry you have foo. My foot drop started 2.5 years ago. I was just fine, standing in line at a store when I realized couldn't feel my foot any longer. I went to the ER and was told herniation at L3-4,4-5 and disc fragments had hit the nerve root so had emergency back surgery the following day. It did not change my foot drop and now has left me with chronic back pain. The surgeon later said it could have been related to my vascular disease, Fibromuscular Dysplasia, but no proof. I've done everything, 4 months PT, 2 years home electrical stimulator, steroid injections, accupuncture, meditation, restorative yoga and no change. I started with the generic plastic AFO from the hospital which is a waste of money since doesnt fit in shoes. Then western boots, lift up, on to Allard AFO which I found made walking more challenging and now I use Ossure Lite. It's very thin, graphite about 1 inch wide comes up back of leg. The Velcro strap in front has enough bend I can go up stairs. The main problem is finding shoes it will fit inside. Talk about limitations for fashionable dressing! I have one pair ugly, black leather ECCO shoes and one pair running shoes it fits in. I wish we could all get together and open a business with a line of cute shoes AFO's can be worn with some style.
Oh, swimming doesnt work for me because the pain in my toes is really bad if my foot is not supported. I can ride a bike with the foot-up on but not clipped while pedaling.more soon, Lisa
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Avatar_f_tn
Hi,
How are you? Has your foot drop improved since your post in Feb? My foot drop started in 2010. I can so relate to your statement of feeling so alone. I am seen at a major medical center and rehab facility and no one seemed able to give me the info I needed about how to cope. As my leg atrophied I found just finding a sock that would stay up on my leg was hard. I am a nurse for 30 years and had no clue. I found a white knee sock at Target that worked so bought 12 pairs. Then they no longer stayed up so I found a baseball sock. No white they all has a stripe so here I was walking around trying to go out for a nice dinner wearing a striped baseball sock. Eventually that didn't stay up so I moved on to a soccer sock. Living in Florida I couldn't leave my house because I got so hot in the sock and AFO. Now I just gave up on wearing a sock and tolerate the AFO rubbing my skin. We should write a brochure with tips because the first 1-2 years is very hard simply from the frustration of not knowing what to do. The emotional roller coaster of hoping it will get better is exhausting too. Everyday my first step out of bed I pray this will be the day I can walk normally again.
Glad to meet you,
Lisa
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Avatar_f_tn
I have had foot drop for a little over 3 years. I had a car accident and a femur/hip fracture which the nerve supposedly was nicked during surgery. I had the worse pain, burning, tingling, and electrical sensations, like an electric fence popping me (I'm from southern ky). I'm a nurse, and I actually diagnosed myself with neuropathy. Now I'm on high doses of neurontin daily. It basically controls the pain. I have tried afo's but they caused me more pain and finding shoes was a nightmare! Big, black unfashionable shoes...uggg. Of coarse I walk funny, like a horse, lifting my foot way up. I can't go barefoot in my own house, because if I even step on a crumb I just about cry. Running is not an option. However, I find swimming is a wonderful getaway. I have to wear swim shoes, which u can buy at Walmart. It's a good place for exercise. I am not a candidate for the electric stimulation, another let down. It's nice to talk to others who have this condition.
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Avatar_f_tn
I'm with you about the shoes! When will AFO manufactures create a line of shoes for women?? Kudos to you for being able to swim. I cannot swim with use of only one foot & my pain is worse if the foot is in dropped position. I tried Aquazize but found it challenging to with foot drop. An elliptical machine works best for me to exercise.
I am not a candidate for the Bioness or WalkAid either. My dr told me if the injury originates below the spine it won't work. I think this means only designed for MS or stroke. I am a nurse too with an injured back.

I was not a candidate for muscle tendon transfer. Have you explored this option? I walk carefully around the house without AFO but have to wear when out anywhere.

Thanks everyone for your comments in the FootDrop Forum.
Lisa
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Hi there

I'm 22, also based in Scotland. I'm now 3 weeks post op after surgery to fix a slipped disc but the surgery was unsuccessful in relieving the foot drop symptoms. In fact, the surgery made it worse. I went in scoring 1/5 and now I'm 0/5. My recovery was also scuppered my being laid flat in hospital to try to fix the spinal fluid leak that they'd sprung during the disc surgery and ending up having to have yet more surgery on the same spot (but at least they hooked me up to a ketamine drip to take the edge off). I now wear a toe-off orthosis which is really unflexible and bulky.

The physiotherapy waiting list is pretty long so I'm not going to be seen for several weeks yet. I was just wondering what the physio will do? Surely it all depends on whether the nerve decides to work again or not? I'm very new to this and still working out coping mechanisms to get round everyday life. And the shoes!! None of my old shoes fit the toe-off so i've had to buy new ones. But the toe-off just eats straight through them! I've
gone through two pairs already in 2 weeks! I'll have to see what else the physio can give me in terms of orthosis before i'm bankrupt! Or I could always go back to the orthopaedic shoe they have me in hospital!

It's all happened so fast! It all kicked off on the day of my graduation a month ago - a day that i'd spent 4 years and many thousands of pounds working towards. So I took painkillers, wore my stiletto heels and got on with it. Looking back on it, I'm lucky to have been able to walk across that stage and get my certificate. But I did. And that was my biggest triumph. That day may well be memorable not only for graduating but for being the last day I walk unaided.

It's so nice to find a group of people with the same problem. I do feel so out of touch at times, especially when my friends invite me somewhere and I hesitate because the toilets are downstairs or they live on the 3rd floor.
I started a blog about my experiences. It's mostly something to entertain myself as I sit here unemployed and too scared to apply for jobs as I fear my foot will get in the way. This is going to be one hell of a ride I think!

Roz
footdropandme.blogspot.com
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Avatar_f_tn
Congratulations on your graduation! What was your major area of study in college? I am in FL,USA worked many years as a nurse. I was 24 when a patient fell on me & I had my first herniation. I had a myelogram and developed a spinal leak. I couldn't raise my head off the bed for 7 days without throwing up. That was in 1983 and I remember like it was yesterday. So, I can only imagine how terrible that was for you after just having surgery.

I refused surgery for many years opting for epidural steroids. Until one day 2.5 years ago I was standing in line at the grocery store and realized I couldn't feel my foot any longer. I went home, took off my shoe and my foot was lifeless. I had emergency back surgery at L3,4L4-5, decompression for spinal stenosis and partial diskectomy. It did nothing but leave me with foot drop, chronic back pain & severe radiculopathy (nerve pain) in my foot.

In the beginning I couldn't stand the plastic brace they sent me home with from the hospital. As you mentioned it didn't fit in my shoes. Then I somehow managed in boots with high heels(compensated for the drop) next I found the lift up brace that velcros to the ankle. As time went on I tried 3 different AFO( ankle foot orthosis aka brace) . Finally found one Ossur Lite that works. You can buy on the Internet for about $350US. I do have to buy a size larger in my running shoes. I have found the ECCO brand shoe has inserts that remove so brace can fit in several of their styles. They are not attractive...
Besides limitations on walking, due to the muscle atrophy now in my lower leg due to the nerve not connecting to the muscle, being able to dress fashionable is a huge problem. I no longer feel confident walking without my graphite AFO. I use the lift-up when bicycling & on the elliptical machine. I used to play tennis 5 days a week.I walk around my house without shoes.

I appreciate your comment about restaurants with stairs. I have been known to call a restaurant and ask if their chairs are padded before I commit to going out due to my back pain. I won't go to dinner with a large group because I know I will be forced to sit too long & my back pain will kill me.

Back to your question about physiotherapy. Hopefully you can get an electrical stimulator which will involve putting 2 electrodes on the anterior tibis muscle, below the knee. This is suppose to remind the nerve to come to the muscle and prevent atrophy. I'm sorry to say I was very faithful using for 2 years but it didn't help me. The other thing you can do to help is toe lifts. Just hold on to a counter top and go up & down on your toes. Try taking a scarf or belt and pull your foot up to remind it to work. I know this is long so will end for now.

I pray a lot for a miracle. You & everyone in this group are also on my prayer list for recovery & comfort. Keep the faith. I have met people who have recovered. You have many hopeful months ahead of you.
I will check out your blog what a smart way to channel your frustration.

Lisa
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Avatar_m_tn
Hi everyone!

Finding this little place is such a discovery. Since there is not a lot of material on this subject it's good that we can at least talk to others.

I'm 22 and I dislocated my knee more than a year ago. Beside everything else that was torn apart I injured peroneus as well-so that results in a completely useless foot-flexors. I had a nerve transposition on feb this year where they used a branch of n. tibialis from lateral head of gastrocnemius to reinnervate tibialis anterior, but I can't see any changes for now...

I'm not a real expert, since I couldn't walk for 11 months and I've been using foot-up ever since and a huge plastic support for the first 5-6 months. But now that my knee is getting better and I'm able to walk I should get a proper orthosis for more stability. And I'm getting back to sports for sure.

Few things I've learned about my condition:
- Nike 6.0 are the most comfortable shoes I could find and most of the braces, AFO's and other types will fit in if you remove the insole of the shoe + the shoe is really durable...i'm having mines for a year now and they're almost like new...
-keeping your ankle flexible is really important-compare it with your healthy leg and work hard to keep it in balance
-and never give up ;)

Hope that was helpful,
cheers to all of you,
Matic
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Avatar_f_tn
I had a stroke about 10 yrs ago and that's what caused my right foot to drop. I walk funny sometimes it feels like my foot won't move off the ground because I also tremors. Tremors are like a twitchy feeling but mostly under control. I'm not paralyzed. Can someone help on what can help me here?
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