Does anyone else suffer with leg pains?

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Does anyone else suffer with leg pains?

Postby lilamy » Thu Jun 19, 2014 5:02 pm

Newbe on here recently diagnosed with syringomyelia, I have a two syrinx one at C1-C3 and a thiner one which spans from C5 to T1. I have mild tonsillar decent but not CM.

My symptoms don’t seem to have much in common with most of those that I have read. I do get numbness/prickly feeling behind my ears and on my face which comes and goes but my main problem is the pain in my legs. This starts at the middle part of the back of my thighs and descends down to above my knees. Sometimes I get a really horrible feeling that feels like all my nerves are on edge in my legs, this is the worst part, it's unbearable.

I wanted to ask if anyone else suffers from pains similar n if so how do you cope/deal or ease it?
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Re: Does anyone else suffer with leg pains?

Postby marymac » Tue Jul 08, 2014 7:26 am

Yes, from the middle of my back down both legs now; even my toes hurt. Can't walk far: feels like "uni-hip". . ." A "personality stuck in a B physical body!!!
Marymac
Central disc herniations C5-6 and C6-7, extensive syringohydromyelia cavity throughout the cervical & thoracic cord (large syrinx from C6 inferiorly.)

"Every day is a gift: Thats why it's called the Present"
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Re: Does anyone else suffer with leg pains?

Postby Dcuster » Wed Jul 09, 2014 11:47 pm

Hi yes I have suffered from leg pain most of the time since 2002, severe at times. Feels like I am standing in a bucket of hot coals most of the time, while I am standing it feels as if someone is pooring hot water downs my legs a trickle at a time. There is nothing I can do to stop it. I take topamax to help with it. Just switched to it, was on Neurotin for 13 yrs for it, it did nothing. When there is bad weather the leg pain is 10 fold. Or when the heat is really bad or cold out side. All I can say is you have to learn to live with it.

I have a very fat syrinx at my T10-T11 area, the complete wdith of my spinal cord very fat one. I have a shunt that keeps it pretty much drained to a 7mm to 9mm at times. However my Neurologist believes that the shunt maybe backing up at times, but there is no way to prove that. I now have tethered cord at the site of the shunt and I was in a car wreck that totaled my car and the other guys, he t_boned me and broke a screw and fractured a disk and broke a screw from a previous screw so it's all a ticking time bomb in there and an't have anymore surgery unless I can't walk, because of the risk is so high that I will not come out of it walking again. So now I have to truly live with the pain in my legs and the screw head moving around in the faucet joint etc. So mine is a hot messed all the way around at this point. I would give anything to be able to go to TCI to see them there, but I simple can't afford it.
SM t10-T12 2.5 x 1.1 cm in dia, thorasic shunt 2002,
Pineal Cyst, C5-C6 fusion 2005, Lumbar L2-L6 w/4 level fusion with hardware 2006, adrenal gland tumor, 7-8 thyroid nodules, 2008 C4-C7 Corepectomy with hardware.
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