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Post by newbie on Jun 5, 2015 7:18:07 GMT -6
Hi-I am 1 yr post ependy intramedullary SCT surgery but still have extreme Stiffness / Spasticity in legs due to which i am unable to walk more than 10-15 steps at a time. With every step, the knee/ankle/hip joints become more and more stiff and after 10-15 steps i am in a lot of pain and unable to walk further. Even if i am sitting idle or sleeping, my legs and joints ache constantly and am in great discomfort. Right side more than left side. My questions to seniors -
1. Does it ever get better with time?
2. I have tried PT and oral baclofen but not much relief. Any other treatment options? Please help and thank you
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Post by pringleman on Jul 2, 2015 6:39:49 GMT -6
Hi Newbie,
I still have stiffness and spasticity in my legs. I find it is worst in the morning after a good nights sleep. Normally I do not sleep well and I wake up and stretch (just for a few minutes and then go back to sleep - I do this normally 5 or 6 times in 8 hours) and I wake up and only spasm just a bit. But other days, like this morning, when I have slept well, last night due to self medicating with Invalid Stout while celebrating my MRI results, I struggle to stand up let alone walk and keep having spasms every time I try and move my legs. Even once I settle it down and have a walk around the block, my legs will return to this state just by sitting down long enough to eat breakfast. But after an hour or so of activity it settles down and I am pretty right the rest of the day.
Today I had first aid training for work all day and like most events like this everyone is expected to sit and listen. If I do this I struggle to stand up and struggle to walk - having leg spasms. So I paced around the back of the room only sitting occasionally.So I made it through ok - the 4 minutes CPR was a bit of a battle though but needed to pass for work.
I then spent an hour at the gym doing body lifting and holding exercises - chin ups, dips, hangs, horizontal rows. My back is burning quite a lot now, but the strength I gain makes the rest easier.
Do you take a magnesium supplement - powder is best. I take 300mg a day - more if I have been exercising (so today I had 300mg at breakfast and another 300mg after gym). Emotions set my stiffness and spasticity off as well. If I get excited my legs lock up. If I get angry my legs lock up and spasm. Get a fright - same thing.
I try and avoid being still and sitting down - I am kneeling to type this. I watch tv and stretch. The other day I had my first walking meeting!
So I guess my advice is
1. Be more active - even if it is reading standing up
2. Take magnesium
3. Stretch
4. Get a massage
5. Lie on your side with a tennis ball on your thigh just above your knee - painful but relaxes your knee - can do the same with your buttocks - they are big muscles and when they tighten up they pull your legs and back and make them hurt too.
I hope you find my comments useful. I think I have been very lucky in my recovery but I have also worked hard at it too.
Good luck,
PG
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Post by Bird on Jul 2, 2015 20:11:10 GMT -6
Not sure if this will be helpful for you or not, but here goes: For tackling spasticity: My PT person said that the goal is to stretch the muscles, then strengthen them in order for them to maintain their stretched out state. In other words, it isn't enough just to stretch because the muscles will spasm right up again. They have to also be strengthened in order to help them resist the tendency to spasm. For me, that meant (and sometimes still means) regularly stretching - even several times a day - followed immediately by strengthening exercises. I found a giant exercise ball to be extremely helpful: you can find exercises on-line; and also found exercising in a pool to be extremely beneficial, both for strengthening and for de-sensitizing freaked out nerves. (again, there are stretches and exercises on-line) Since walking is so painful for you, it might be worth it to try walking in a pool. The water will support you as you do however long or short of a work out you can tolerate. When my spasms were at their worst, my tendency was to rest, thinking the spasming would subside. Resting actually made things much worse for me. Stretching plus strengthening was absolutely key for making progress. (and for keeping my spirits up!) I hope this helps and I hope your spasticity subsides!
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Post by Bird on Jul 2, 2015 20:54:41 GMT -6
If you haven't already, you might want to check out the facebook page Spinal Cord Tumor Association. It's a very active page with lots of information. I'm sure people there would have thoughts for how to handle spasticity.
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boop48
Junior Member
Posts: 14 
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Post by boop48 on Jul 3, 2015 1:00:51 GMT -6
Bird, I was looking for the Facebook page you mentioned and I can't find it. Can you tell me the specific name of the page?
Thanks!
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Post by Bird on Jul 3, 2015 10:58:47 GMT -6
Sure! This is the exact name:
Spinal Cord Tumor Association (SCTA)
It's a closed group so you'll need to request to join. The advantage of a closed group is you can post whatever questions, comments, etc. and no one outside of the group can see it. Nice privacy, especially for topics that can be private or uncomfortable. Lots of bowel/incontinence discussions, for instance!
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boop48
Junior Member
Posts: 14
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Post by boop48 on Jul 3, 2015 12:29:58 GMT -6
I still can't find it!  ? I put "Spinal Cord Tumor Association" in the search box on Facebook but nothing comes up.... Maybe I am doing something wrong. |
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mcguyverdan
Junior Member
L5 and S1 laminectomy 5/19/2015 removing 99% of pecan sized intradural schwannoma.
Posts: 9 
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Post by mcguyverdan on Jul 3, 2015 16:35:40 GMT -6
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Post by Bird on Jul 4, 2015 12:11:55 GMT -6
No, it's not that one. Strange that it's not showing up for you! You could message Linda Stophel and she can add you to the group if you want. (she's the president of the group)
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Post by Bird on Jul 4, 2015 12:28:23 GMT -6
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