Anyone Else Have Brown Sequard Syndrome Or Similar?
#1
Posted 05 March 2010 - 05:56 PM
My injury is only 7 months in but i can now walk on crutches because i refuse to use a walker, only about 50 feet if that though. I have no temp/pain sensation from my right torso/leg (under my breast) and the leg always feels numb. The left side is where i got hit from the bullet in my shoulder and that side is impared mainly in my thigh muscles but it is also hyper sensitive to temp/touch or whatever.
The doc's say i'm recovering fast for my injury and was suprised i had full use of the left arm being it hit the T3/T4 area. Thank god for drinking my milk growing up! lol. I've never had a mri because the bullet is still lodged in my back and they said its just a big magnetic machine so i really wouldn't wanna see the outcomes of that!
Well down to the question.. Am i ever gonna get the temperature/pain sensation back to the right side?? Also i have acute foot drop to the left foot and they just made a custom afo last month for me but getting home i realized he made it too wide at the ankle so i dont feel it's benefiting me at all and i dont wear it...
Also, Since my weakness is in the thigh to the knee shouldn't they have considered a brace that went from the thigh to the shoe instead of just the one that stops below my knee? That would make more sense to me..
#2
Posted 05 March 2010 - 07:17 PM
The way you describe your injury sounds a lot like my husband's. His SCI happened during a back surgery 10 months ago. Even though the surgery was in the lumbar region of the spine (bottom 4 vertabrae) he had a spinal stroke in the thoracic area - not sure which levels because all of the paperwork states levels varying from T2, T4, T7, T8, T9 & T12. It is very confusing to both of us to say the least!
Anyway, his numbness starts at the bottom of his rib cage. The left leg is completely paralyzed and he was told his right leg is at about 25% usage (however, he can feel no temperature difference at all in his right leg, but he can in the left - very strange).
Like you, he refuses to use a walker. He can get around inside our home fairly well with a cane, just not for long periods because it really tires him out. He hasn't tried crutches - he says they did not recommend them at rehab and since neither leg is at full capacity, I think he's afraid of falling. He has spasms in both legs and even sometimes in his arms. He takes Baclofen for the spasms. He also has one of the AFI foot/calf braces and it does seem to help the drop in his left foot. He usually wears it when he has to go somewhere like a doctor's appointment and sometimes wears it at home. He uses a manual wheelchair and has a 3-wheeler to ride down the street to the mailbox. Luckily, he he does have bowel/bladder control, although nothing like before this happened. He did have to use a catheter for the first couple of months, but now takes Enablex and Flomax daily. He did not take ANY medication before this, but now takes probably 8-9 pills every day.
When he "overdoes" it, he has mentioned that his right thigh feels "liquid" or like "molten lead". I can't imagine what he is describing, but it may be similar to what you've described.
Best of luck - I hope you continue to improve.
Kim Love
#3
Posted 06 March 2010 - 11:56 PM
Good luck with the recovery,, hope it all comes back.
ed
#4
Posted 07 March 2010 - 04:56 AM
I can see how he would be pleasantly surprised at your recovery in the arm/shoulder that you were shot in.......but as far as a lesion on the spinal cord where you're injured at shouldn't have interfered all that much with the function of the arms.
http://www.apparelyz...spinalcord.html
You're still relatively new to SCI but you'll find we all have different outcomes even with "similar injuries". Just keep working at it & hopefully you'll continue making progress.
*Wheelchairs are made of a special ocular magnetic alloy......they're "eyeball magnets".*
*I USE a wheelchair, that does NOT make ME a wheelchair!*
#5
Posted 08 March 2010 - 01:38 PM
Airrika, on Mar 5 2010, 06:56 PM, said:
I don't wear my AFOs either.
I found better results/comfort from the velcro/shoe strings straps from X-strap.com
http://www.x-strap.com/
#6
Posted 09 March 2010 - 04:00 PM
#7
Posted 09 March 2010 - 04:06 PM
#8
Posted 12 March 2010 - 07:54 PM
wheeliebear75, on Mar 7 2010, 04:56 AM, said:
I can see how he would be pleasantly surprised at your recovery in the arm/shoulder that you were shot in.......but as far as a lesion on the spinal cord where you're injured at shouldn't have interfered all that much with the function of the arms.
http://www.apparelyz...spinalcord.html
You're still relatively new to SCI but you'll find we all have different outcomes even with "similar injuries". Just keep working at it & hopefully you'll continue making progress.
My afo came with some kind of padding on both sides of the ankle part, but it is thin and theres still about thumb width of room inbetween even with socks on. I'm not much of a complainer, so i sucked it up and started wearing it. I noticed it really does help a bit so i'm just gonna keep it and see what happens
JimG, on Mar 8 2010, 01:38 PM, said:
Airrika, on Mar 5 2010, 06:56 PM, said:
I don't wear my AFOs either.
I found better results/comfort from the velcro/shoe strings straps from X-strap.com
http://www.x-strap.com/
Thanks i checked out the site and i'm still debating on whether to get one or not.. How well do they actually work?
#9
Posted 12 March 2010 - 08:01 PM
cate, on Mar 9 2010, 04:00 PM, said:
That sounds exactly like me except its just my legs that are effected. The right one is always numb with no temp/pain if i rub it up against something while standing it will give out so i have to be careful with that. The left one seems it is just weak in the thigh. The spasms are the worst especially when i stretch my leg in bed or stand up after sitting for a while it shakes my whole bod but baclofen helps a little i guess...
My pins and needle feeling is right in the middle of my back and to the left side wear the breast meets the back where they inserted a chest tube that day. When i lay down (without a shirt on) i cant even put the covers over my breasts or back, anything that brushes up against them feels terrible!
That's kind of discouraging that she has had it for 12 years. I was thinking people with BSS healed after a year or 2 and walked without aide after awhile...
Makes me wanna
#10
Posted 28 May 2010 - 06:37 PM
Robertc
#11
Posted 29 May 2010 - 12:09 AM
Now 1 year later have partial motor control over my left leg patchy parts of my torso, can wiggle my right big toe and had 3 changes of sensation and feeling over the year
now all feeling is about the same - say 80% normal over both legs and torso from nipples down.
In the last 2 weeks developed vicious spasms of my left leg and major twitches in my right big toe, seems that the bits I had control over have developed a life of their own, bloody annoying and very tyring. I'm just putting it down to neurological development and hope it passes, if not it'll be a bitch!
Hope to see my main consultant in the next few weeks and have some answers but any comment from folks in here most appreciated.
These spasms are really doing my head in, just started on Baclofen as I've never needed anything like that before but so far does nothing at all, only on 3 x 10mg /day so far.
anybody else got any input or comments?
#12
Posted 29 May 2010 - 02:15 AM
Injury sounds very similar to mine, minus the whole getting shot thing. I was diagnosed with BSS, but I have seen the symptoms improve. I still have spasms on the right side from below the rib cage down the right leg. I also have spasms on the left, but to a lesser degree. I lost movement on the right and had foot drop, and lost cold/hot and tactile sensation on the left.
The foot drop has improved dramatically, and I only have about a 10-30 degree flexion deficit depending on the day. All my right shoes have scuffed toes and it causes me to trip and fall a bit, but falling means I'm walking, so can't complain much. I still have the standard BSS symptoms, but it has all decreased with time.
This could be completely anecdotal, but I tried to stimulate the effected areas with the things I couldn't feel. I would sit in the bath and put my foot/leg under running water and alternate between hot/cold. BE VERY CAREFUL WITH THIS!! Don't be a goof and burn yourself. Check the temp with an area of your body that can actually feel temperature changes!! I have no idea if this worked, but I did it and I have some sensation back.
Keep stretching. I did a lot of stretching and evolved into yoga. I still have spasms when I stretch, but they have overall improved as I have improved my flexibility. I think the primary gain I had with stretching/yoga was becoming very familiar with my body (out of the gutter please!). It made me very aware of the specific, exact areas where I have deficits, pain, and limitations and made me much more intelligent regarding my body's response to its new condition. It also allowed me to work on balance, and to learn to compensate for stability deficits. I'm a big believer!
If you have any questions along the way, let me know. Happy to talk about my experience. I got lucky, but like everyone else here, you have to put in a lot of hard work. Good luck to you.
#13
Posted 31 July 2010 - 08:17 AM
#14
Posted 30 November 2010 - 04:53 AM
As of today i still have weakness in my left leg. I AM able to walk with one cane or crutch now pretty well but slow. I'm also able to go up and down stairs if the stairs have rails. I can barely bend my left leg at the knee and that's whats making it so hard for me to walk correctly without falling or being off balance. I still use my wheelchair when out on shopping trips n things like that but i can get out of the car and walk in the house or salon or something small like that. I just gained controlled movement in my left big toe so now i can move it up and down with the rest of my toes but its still hrd to put shoes on that foot! (the big toe was taking the longest). I've learned about all the muscles and what controls what just by having this injury which is a plus. Like when i move my big toe i can actually feel the muscle moving way up in my thigh/hamstring area. This is stuff that the average mobile human being goes thru lfe unrecgonizing!
The pain i'm having is definately because of the chest tube they put under my left breast when admitted. It's due to the scarring n things but it hurts so bad if i try to go without my medicine. I left the gabapentin alone and am now taking tramadol because i believe the gabapentin was contributing some to the constipation but idk yet. I've only been taking the tramadol for a month now. I'm able to stand on my tippie toes on my left leg also but when i let down my leg shakes (not bothersome). I rarely have muscle spasms anymore maybe 2 days out of the week but when that happens i take 2 baclofen and that usually stops them for about 2 or 3 days (luckily my leg only spasms)..
This post has been edited by Airrika: 30 November 2010 - 04:55 AM
#15
Posted 10 February 2011 - 01:24 AM

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