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Posted on: Thu, May 1 2008 10:24 AM
Posted by: hadley Posts: 27
Hey guys, I have spastic diplegia, a mild case, and didn't have any severe pain issues (besides the normal aches and pains) until I went to college and started to hoof around campus a lot more.
During my second semester, I suddenly would get severe pain kind of right in front of my ankle....it would worsen with activity, i.e., if I didn't walk all day it would be fine, and it would hurt most if I walked walked walked, then sat down, then after a while of sitting, *going to walk again* would make it have searing pain originating in that area that would radiate down my foot. It would get so bad that I would be crawling around on the floor!
Well, that was 2 years ago, and I am still having issues with it. I have tried braces, I had surgery that removed a giant cyst that had cracked some foot bones, but oddly enough, that was not the cause of my pain! I've had MRIs, CT scans, Botox X-rays....nothing is wrong (after the removal of the cyst)....I just have lots and lots of edema (swelling).
I kinda feel like these are problems relating to my surgery I had when I was young to turn my foot outwards (it would turn in, and I would drag my toes-----not sure what the procedure was called)....
I know it's a relatively routine procedure for people with CP, so I was wondering if anyone else experienced this problem and if they ever managed to figure out how to deal with the pain?! I am soooooo desperate to get this thing fixed once and for all!!!
Posted on: Thu, May 1 2008 9:35 PM
Posted by: buckeyeflower07 Posts: 21
Hmmm... Iv'e had my feet do this too. Especially when I "overdo" it. I don't think mine is as bad but when it does happen it's wierd. It's like electrodes are going through my feet(or foot) because somtimes it is just the left one. Sometimes my left foot when I driving for a long time feels like it will rip out of my shoe. I usually take off my shoes and that helps. Did you have a hamstring release (I didn't have that done) I had the one where they open your back a pinch off selective nerves. Pins in both ankles. I did however find a pretty good shoe though they are New Balance 478. I stopped wearing braces because they kept me from driving. Also I usually forgo the inserts because they kill my toes. Not really sure what to tell you about the pain though. Wish I could be more helpful. I do however have found that working on the weight machines at the gym helps (I'm only doing like 10lbs though, because I don't want to hurt myself) I would talk to a PT first about that though because I wouldn't want you getting hurt.
Posted on: Thu, May 1 2008 10:07 PM
I have had the hamstring release on both legs. I'm wearing New Balance shoes. I am just desperate! Maybe weight training will help. It's just so bad that "overdoing it" would mean me going to the grocery store and vaccuuming....I used to be able to do all that, PLUS hoof around campus PLUS go out at night!.
I've been out of MAFOS/DAFOS for YEARS now, but I am now wearing an Arizona Brace so that I can function at least on some level like I am used to. I was just hoping someone in the forum would be like, "Yes! I had that, here's how I fixed it!"
Thanks for your response, though!!!!
Posted on: Sat, Aug 23 2008 6:28 PM
Posted by: Jason Posts: 18
I can't even tell you the specific type of CP that I have, but I do know that I share your ankle/foot pain problem. Mine started maybe three years ago after I drastically increased the amount of walking that I did. I eventually went to two different foot specialists, and two things happened. One of the doctors said that I needed a good orthodic in my shoe to absorb some of the impact. In my case I have absolutely flat feet, so I basically just needed a flat pad type of orthodic. The second doctor put me on a TON of ibuprofen, which is an anti-inflamatory and decreases swelling. But, I take 1.800mgs of that a day, which is over the recommended dosage. Between these two things, the pain is bearable. This is not a complete solution, but it's better than the total and complete agony that was the case before I started both of these things. You might want to talk to your doctor about doing something similar, because it has sure helped me out a lot. Who knows what the long-term effects of all the ibuprofen will be, but it's better than constant pain, in my opinion. Hope this helps.
Posted on: Wed, Aug 27 2008 1:06 PM
Posted by: Gary Posts: 138
I have spastic diplegia too, a mild case as well and I am 42 years old.. A lot of people wonder if I have pain and I must tell you that other than the normal pains everyone feels from time to time, I have none and I work as a cashier at walmart which means I stand in one place up to 9 hours a day.. I went to school for a semestor and did a couple years ago and did all kinds of walking there and had no problems with pain, stopped going for other reasons..
Posted on: Wed, Aug 27 2008 1:39 PM
Posted by: rainey826 Posts: 2,964
HELLO , NO I DONT POLIO HERE .YET I LIKE TO SAY HELLO AND WISH YOU THE BEST ! RAINEY XO
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