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minnow16 New Member Posts: 17 Post Likes Received: 2 Date Joined: July 2013 Injury: L4/5 Date Injured: 12/2012 Member is: Offline Send PM	Cauda Equina Syndrome Discussion Jul 14, 2013 17:59:33 GMT -8 Quote Select Post Deselect Post Link to Post Back to Top Post by minnow16 on Jul 14, 2013 17:59:33 GMT -8 Thanks

DJ
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Cauda Equina Syndrome Discussion Jul 14, 2013 18:05:27 GMT -8

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Post by DJ on Jul 14, 2013 18:05:27 GMT -8

Jul 14, 2013 17:57:19 GMT -8 kilg0retr0ut said:

I will get a couple pictures up soon of the AFO's. I had to work up to the ones I'm using now. My first set were molded plastic, it was great that I got them when I did as I was at the point of about 20 min. on my feet was all I could take. I had to build up my core, and spent the first year doing floor exercises, band work and range of motion work daily. Then I was sent to a gym with a trainer who was P.T., he set up a workout for me. I was with him for 6 months, 2 to 3 times a week. Then I bought a cage and they set up a routine I could do at home. I've been doing that 2 to 3 times a week since. (well until I got the new braces)These new carbon fiber braces still took some time, or are still taking time to get used to. I tell all my friends it's like breaking in a pair of boots, but really it's more like breaking in your body to the braces. A tad hard on the hips and lower back but worth the results.

It sounds like you're working out hard! I like seeing/hearing stuff like this. It's good that people are determined to accomplish something. Keep at it and you'll see some good results!

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Cauda Equina Syndrome Discussion Jul 14, 2013 18:15:49 GMT -8

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Post by Deleted on Jul 14, 2013 18:15:49 GMT -8

Jul 14, 2013 17:19:00 GMT -8 minnow16 said:

I am a ces sufferer. I had surgery on Christmas Day 2012, so I'm still expecting some more improvements. I had surgery roughly 100 hours from the on set of my L4/5 centrally herniated disc. My issues as of now are no bladder function, irritable bowel, left foot and calf numbness and weakness, saddle numbness and occasional nerve pain. I had a sacral nerve implant put in in hopes to jump start my bladder but it did not work. However, it did help with my bowel pain a lot.
I am just like most, learning as I go. I would be interested in anything that could help my gait. Walking is very slow and exhausting. I will check out the afo's. thanks

Hey, yes for def I am sure that you will make further progress. I made more progress with regards to my upright mobility in the later part of the two years post surgery and my surgery was delayed for 3 weeks.

Finding walking exhausting is the big issue for me to be honest and as you also do I have calf weakness and the saddle area numbness. As i tire my swinging gait and limp because more obvious.
I spend a lot of time checking my posture, using my core muscles to help hold me more upright (lots of core exercises) looking in the mirror and ensuring I am standing straight and then practicing keeping straight as I walk. When I use two crutches I can do this for longer and I had to get out of the habit of looking down to check where I was placing my numb feet.
I still look down at times but it depends on the surface I am walking on.

If I use one crutch about the house my gait alters to a more swinging gait. Its hard not to tire when we have limited use of muscles.

Basically, keep working at building up what you have left that has function and it will help you with the parts that are weak.

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Cauda Equina Syndrome Discussion Jul 14, 2013 18:23:38 GMT -8

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Post by Deleted on Jul 14, 2013 18:23:38 GMT -8

Jul 14, 2013 10:45:08 GMT -8 kilg0retr0ut said:

Your description seems so similar to mine. I have some bladder return, I'm not voiding completely. My bowels work slow, I'm constipated pretty much all the time. I kept logs on everything for along time and finally just quit, no real patterns. My left leg is toast, looks like a pirate's peg leg, my right is deformed a bit.

My toes on my right foot kinda curl under. Have a type of fatique I'd never felt before. Rergular neruo pain and was lucky enough to experience electric shock like episodes as well. I weaned myself off my meds shortly after leaving the hospital, but after about a year I'd had enough of the shocks. I tried many meds all non-narcotic until I settled on Lyrica, and Tramadol. Lyrica takes most of the shocks away.(about 90%) The tramadol seems to numb up my numb legs, that lets me stay upright longer through the day. Of course there is a price to pay for the relief, you kinda have accept the trade-off.

The good news is that I fell into a excellent group of people who have worked with me to keep me upright. I'm on my second pair of AFO's, they rock.
They give me a piviot point under the pad of my right foot, it gives me a decent gait. I still breaking them in, I can only keep then on for 5 or 6hrs. before they sceam to come off. Even though my right leg is my good leg, it's pretty uncomfortable with more feeling.

Bowels are a nightmare for me and cause me lots of probs..they are seriously idle! lol the problem for us is that some of the methods used for other SCI does not work on our bowels. I have been advised to use peristeen but im trying to avoid going down that road...but this means that I continue with the problems and persevere.

My left leg sounds like yours...and the neuro pain like you....

It does sound like you have been given some great help and this is vital with our injury but unfortunately many don't get the correct help.

My feet suffer due to my walking and I have started to walk over sometimes so I now need to get this addressed also.

kilg0retr0ut Advanced Member Posts: 2,507 Post Likes Received: 1,862 Date Joined: July 2013 Injury: L4/5 Cauda Equina Date Injured: 7-15-10 Member is: Offline Send PM	Cauda Equina Syndrome Discussion Jul 14, 2013 20:11:40 GMT -8 Quote Select Post Deselect Post Link to Post Back to Top Post by kilg0retr0ut on Jul 14, 2013 20:11:40 GMT -8 Computer's slow tonight but will try to get the pictures of my AFO's tomorrow.
	L4/5 CES

minnow16 New Member Posts: 17 Post Likes Received: 2 Date Joined: July 2013 Injury: L4/5 Date Injured: 12/2012 Member is: Offline Send PM	Cauda Equina Syndrome Discussion Jul 15, 2013 7:04:25 GMT -8 Quote Select Post Deselect Post Link to Post Back to Top Post by minnow16 on Jul 15, 2013 7:04:25 GMT -8 Would I want to make an appointment with a podiatrist?

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Cauda Equina Syndrome Discussion Jul 15, 2013 7:18:57 GMT -8

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Post by kilg0retr0ut on Jul 15, 2013 7:18:57 GMT -8

Are you working with a rehab doctor or P.T.? I had the P.T. and the orthodist (sorry my spelling is so bad) meet together, watch my gait and work together to figure out what would work best for me. I don't know where in michigan your located, but I live in MI. as well. I just reread your post (Detroit)I live in the U.P. I've lived in Farmington Hills and Canton for a short time. Worked in Romulus.

Sorry it's taking so long with the pic's, hoping to get them on by this evening.

L4/5 CES

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Cauda Equina Syndrome Discussion Jul 15, 2013 7:36:32 GMT -8

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Post by minnow16 on Jul 15, 2013 7:36:32 GMT -8

I'm in metro Detroit. I am currently seeing a therapist who is helping me work on my pelvic floor (bladder). So I don't have a pt as of now. I have numbness/weakness on my left foot mainly from mid foot to my toes. So I don't have he push off needed to walk normal. Do you think they could help me?

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Cauda Equina Syndrome Discussion Jul 15, 2013 7:55:18 GMT -8

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Post by kilg0retr0ut on Jul 15, 2013 7:55:18 GMT -8

I think they might also help with the fatique you get from walking also. I would guess that they are probably waiting to see what level of return you get.
The good thing is you may not need AFO's, it's still very likely you will get more return. They don't want stop your muscles working with braces until they pretty much know what your left with. This is only how I understand it, I have no training, and only know how things worked for me.

L4/5 CES

minnow16 New Member Posts: 17 Post Likes Received: 2 Date Joined: July 2013 Injury: L4/5 Date Injured: 12/2012 Member is: Offline Send PM	Cauda Equina Syndrome Discussion Jul 15, 2013 8:25:36 GMT -8 Quote Select Post Deselect Post Link to Post Back to Top Post by minnow16 on Jul 15, 2013 8:25:36 GMT -8 Thanks for the info, I made an appointment with a physical medicine doctor and we will see what they have to say :-)

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Cauda Equina Syndrome Discussion Jul 15, 2013 11:28:11 GMT -8

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Post by bensan on Jul 15, 2013 11:28:11 GMT -8

I also have AFO's on both feet. Even with the feet being stable I need my crutches,. I am on my second set ( the originals got to be too small) after about 18 months. I have bowel problems, especially at night while sleeping. I hate to wear adult diapers but having a messy bed every few weeks is not fun

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Cauda Equina Syndrome Discussion Jul 15, 2013 11:56:33 GMT -8

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Post by kilg0retr0ut on Jul 15, 2013 11:56:33 GMT -8

I had the diapers after leaving hospital, had to use a barium enema to get things moving, the doc said he'd never seen anyone drink a jug of go-lightly (thats close to the name of that fowl stuff) and not go. So to say the least I've tried and may end up wearing them. I try to look at it like the braces, whatever it takes to give me the best quailty of life.

Good to hear from you bensan.

L4/5 CES

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Cauda Equina Syndrome Discussion Jul 16, 2013 4:02:02 GMT -8

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Post by bensan on Jul 16, 2013 4:02:02 GMT -8

I agree the braces are great. One problem I have in the past few years is trying to do more than I am able. I try to walk around the house and every once in a while I get my legs twisted and fall. without the braces I would not be able to get up again. I have to low down and take one step at a time,

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Cauda Equina Syndrome Discussion Jul 16, 2013 4:19:40 GMT -8

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Post by kilg0retr0ut on Jul 16, 2013 4:19:40 GMT -8

That's one of the most frustrating things for me also. I was always moving from one project to the next. I still have many projects going but not many are getting finished. Takes me a day to do what I use to do in hrs. I have taken a few spills myself, balance is tricky at times, worse when I'm tired.

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L4/5 CES

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Cauda Equina Syndrome Discussion Jul 16, 2013 6:38:47 GMT -8

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Post by minnow16 on Jul 16, 2013 6:38:47 GMT -8

Wow, sounds like you guys have it much worse than me, I'm so sorry you are going thru this! I can get around the house fine, it's more distance walking that I struggle with. But, I have more healing time too. I am glad to know that there is so help out there, and its nice to talk to people going thru the struggles and challenges that I am.

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Cauda Equina Syndrome Discussion

Post by minnow16 on Jul 14, 2013 17:59:33 GMT -8

Post by DJ on Jul 14, 2013 18:05:27 GMT -8

Post by Deleted on Jul 14, 2013 18:15:49 GMT -8

Post by Deleted on Jul 14, 2013 18:23:38 GMT -8

Post by kilg0retr0ut on Jul 14, 2013 20:11:40 GMT -8

Post by minnow16 on Jul 15, 2013 7:04:25 GMT -8

Post by kilg0retr0ut on Jul 15, 2013 7:18:57 GMT -8

Post by minnow16 on Jul 15, 2013 7:36:32 GMT -8

Post by kilg0retr0ut on Jul 15, 2013 7:55:18 GMT -8

Post by minnow16 on Jul 15, 2013 8:25:36 GMT -8

Post by bensan on Jul 15, 2013 11:28:11 GMT -8

Post by kilg0retr0ut on Jul 15, 2013 11:56:33 GMT -8

Post by bensan on Jul 16, 2013 4:02:02 GMT -8

Post by kilg0retr0ut on Jul 16, 2013 4:19:40 GMT -8

Post by minnow16 on Jul 16, 2013 6:38:47 GMT -8

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