17 replies to this topic

[Airrika]

I'm asking because i see alot of quad's posting here more than anything.

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..

[kcl]

Airrika,
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

[edlee]

Lead and brass won't be a problem with having an MRI,,,, magnetism attracts ferrus (iron) compounds. They don't use that in bullets.

Good luck with the recovery,, hope it all comes back.
ed

[wheeliebear75]

Was it formed so that you'd have room to wear a sock between IT & YOU? Plastic rubbing on your ankle with bear skin could cause blisters. I used to wear a pair of socks THEN the afo then another pair of socks over the whole thing so it was less conspicuous.

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.

[JimG]

Airrika, on Mar 5 2010, 06:56 PM, said:

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...

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/

[cate]

my daughter also has BSS and symptons very similar. she has slower movements down a whole right side of body, hand go into spasms also the temperature probs burning or ice cold, no nerve sensations, ,she alsos walks with crutches, and works and runs her own home, fights the pain, although numb still gets pain and pins and needle type feelings. hard for me to explain, she also has foot drop and has found the different splints do not help, she also had a separate knee injury that does not help she is c5/6. also has lymphodema at the same time, It would appear to affedct people all different and so many people seem to be unwareabout it. she has had this for about 12 yhearsor so.

[redryder49]

I just went and put moleskin on the g/f's afo to prevent rubbing, really seams to help so far.

[Airrika]

wheeliebear75, on Mar 7 2010, 04:56 AM, said:

Was it formed so that you'd have room to wear a sock between IT & YOU? Plastic rubbing on your ankle with bear skin could cause blisters. I used to wear a pair of socks THEN the afo then another pair of socks over the whole thing so it was less conspicuous.

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:

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...

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?

[Airrika]

cate, on Mar 9 2010, 04:00 PM, said:

my daughter also has BSS and symptons very similar. she has slower movements down a whole right side of body, hand go into spasms also the temperature probs burning or ice cold, no nerve sensations, ,she alsos walks with crutches, and works and runs her own home, fights the pain, although numb still gets pain and pins and needle type feelings. hard for me to explain, she also has foot drop and has found the different splints do not help, she also had a separate knee injury that does not help she is c5/6. also has lymphodema at the same time, It would appear to affedct people all different and so many people seem to be unwareabout it. she has had this for about 12 yhearsor so.

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

[Robertc]

My BSS has endured for 30+ years, you just adapt to it. Over time it lessens but you get reminded everyday. The one area that you need to be careful is how it affects your posture. You will compensate for the side that is weaker, by doing this you will force your body to adjust and this will cause an imbalance. Place yourself in front of a large mirror, wear something with lines in the pattern. See how the pattern lines up, if your weakness is in the left side, over time your left shoulder will raise. If you see this you have an imbalance, you will need to be conscience of this during daily moments. The change is gradual, it took 10 yrs for me to be aware of it, once the adjustment is very difficult to correct. Good luck on your recovery
Robertc

[Edinburgh Colin]

I have as a result of a spinal hematoma a year ago. Bike accident frctured T2 and bled internally, had my spine opened up and all the crud removed and spent 9 months in hospital. Classed as T4 incomplete Asia B.
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?

[CrazyLucky]

Hey There,

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.

[barbara9999]

I know quite some time has passed and I am new to this forum having just discovered it. I have BSS and I think it is progressing and this has got me a little scared. well this whole disability is quite freightening and scary. You just don't know what to expect. I am walking and using a brace most of the time. My balance is getting better. I have immobility on the right side and loss of sensation on the left and in June I noticed more stiffness on the right and the loss of sensation keeps moving up. Last week it hit the left hip and moved over to the pelvic area and now I am having some difficulty going to the toilet and have used a laxative but I noticed on the Univ of WA website they are advising against this and using other techniques or herbal laxatives only. I have seen a neuro surgeon who is suggesting surgery and will get a second opinion this month. I have alot of compression around the disks which resulted from a fall while I was in India (in March). Having this injury is probably the most challenging experience of my life and I admire you all who are so positive. I can't tell you how depressed I have been. I came from India last month, as soon as I was able to travel for medical services here and I am all alone without any support group altho I am meeting new people here but hardly anyone knows what I am going thru or the type of injury.

[Airrika]

Thanks to all who replied months ago.. Its been 1 year and 4 months since my injury.

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)..

Edited by Airrika, 30 November 2010 - 04:55 AM.

[pinkcloud]

I have this too. Mild form though and I am a walker. I just got used to it all. Thanks for the post, it has helped me understand much more and I am relieved that I have gained some more insight :-)

[sam1luvsam2]

Hi My name is sam. I have had my spinal injury for 5 years. I too can walk and have brown sequards syndrome. I was in a MVA i was the only survivor and I had a L-1 burst fracture along with t-7,8, and 9 fractures. The spinal surgeon removed every bit of my L-1 vertabrea, he then surounded my spinal chord with titanium tubing. The doctor packed the tubing with bone paste made from my ribs. I can walk, run, swim, and I work at a vet. I am normal...but...I cant feel temature or pain at all in my left leg. My buttox and groin are completely numb, my right leg is like a checkerboard and all the black squares are numb as well. i wear adult diapers. i have a neurogenic bowel and bladder. I tried to have a bladder sling put in 2 months ago and almost died because the doctor punctured an abbarent artery. Im 23 years old now. I was 17 when my injury happend. I was told i would never walk but by the grace of God I do. but i can completely understand what any one with this disorder is going thru. i may not have a lot of advise or wisdom to give but if anyone ever needs to talk I am here for all. <3

[barbara9999]

I am writing a year later from my last post. I am both better (because of PT and surgery) and worse because the symptoms have progressed. Every day is a surprise as to pain and stiffness and my worrying if its getting worse. My PT arranged for me to get the brace because of foot drop but I hated wearing it but did for a few months and then just conveniently forgot to put it on. Because of PT my balance and foot/leg has gotten stronger and I have not fallen for over 8 months. As for the BSS - well it has progressed up one side but i have just accepted it and I hardly notice anymore that i do not have the sensation of pain if hurt or temperature but do have the constant nerve pain (burning). i take Lyrica 3 x a day but I still feel it. some days are better than others. when I am doing something i enjoy I completely forget it is there. In other words I have learned to live with it and ignore it. I hope u too are doing better and all those that are continuing their struggles. its quite a challenge.

[Tetracyclone]

Barbara,

I am so glad to see your post and hear that you are doing pretty well. Way to go!