Can something cause pain below level of injury

[maryonwheels46]

I am about to go nuts with this. I am staying in the bed to much and staying at home to much because of the pain.
I am a T9 complete para also a L1-2. It is so hard to explain the feeling because being paralyzed the pain doesn't feel like it would to an AB. So I wonder if the Dr understands. I can't get in to see my pain Dr until June 15.

The pain starts around my hips and goes down to my toes. I can't hardly explain the pain in my legs but by the time it gets to my toes they feel like they are severely numb. Also if I am laying in bed it feels like my legs are vibrating. When I get in my chair it hurt worse and are number. I guess because I am moving. When I lay in bed and am still I don't hurt unless I move. It use to bother me just every now and then. Now it is all the time.
That is why I am asking if maybe T1-2 can be effecting a nerve. The first 3 years I didn't have this much trouble but it started about 4 months after I had the rods taken out that I noticed my toes getting numb. Does anyone have a clue? I wonder what kind of test should I have done?
Mary

[David Berg]

Mary,
What you're describing sounds like you're developing neuropathic pain. Find a doctor who's experienced with treating neuropathic pain from SCI soon as you can and see if you can develop a plan of attack that will help. Two of the main clues are that you're feeling pain below the level of injury, and that the nature of the pain is difficult to explain and involves 'numbness'. It's not uncommon for this to start with 'tingly' feelings in distal (farthest out) parts of the body, like your toes. It may be the beginnings of central pain syndrome, but that's for your doctor to decide.

Not good news, I know, but I'd rather give you a straight answer. I wish you all the best in dealing with this.

FYI, I have a bunch more info on central pain at http://www.painonline.org

[WonderDerek]

When I was in the hospital I hit my ankle when trying to get into bed and it hurt like hell. I didn't know it happened until I felt a pain and looked down and saw my ankle lodged between something. I don't understand it lol.

[firesmurf]

Hey David,perhaps you could shed some light on this.when a person is actually "complete' just how is it that they would be actually able to even feel anything at all.wouldn't ALL the nerves/tracts be totally severed and the area below basically,not an actual connected part of the body anymore??

or over time is there some sort of possible 're connection' that can occur?tho i do not ever doubt it when someone actually says that they 'feel" pain or the other freaky and bizarre crap we feel,It just really don't understand how this is actually even possible,you know what I mean/when something is definitely "cut" or seperated from the body,it would lose the real connection,or so one would tend to think.any thoughts on this david?doc wise??just seems really way more bizarre to have, but even worse,trying to make your doc really understand just how a patient can complain of pain when the connection to the nerves is actually non exsistant.geez its hard enough for those of us with actual connections in our cords,i cannot even fathom what some docs would think about that aspect.i do feel for ya Mary,it must make everything even more difficult for you,just to actually be believed.i certainly hope you can find something to actually bring it on down to a much tolerable level for you.Marcia

[David Berg]

Marcia, I'll give a shot at answering even though it's waaay outside of what I'm remotely qualified to address. First of all, I get the impression that some people say they're "complete" when actually their motor nerves are complete but the sensory nerves may still have a damaged connection of some sort.

Next, you may have heard some people talk about getting cordotomies (having the cord surgically cut) to help relieve pain. As I understand it this was more common in the past because doctors started to realize that although the pain did go away after the surgery it sometimes returned, say within 6-24 months. I've heard reports that it's possible for it to return as bad or even worse than before, even for people who had previously thought their pain couldn't be any worse (which is why they were desperate enough to get a cordotomy in the first place). Here's where I'm getting really outside of what I should be trying to address, but I've heard the nerves try to make the connection again but things sort of get mutated along the way, making for bod mojo when it somes to pain signals. Apparently there's less risk of this with peripheral nerves or perhaps the consequences are just less severe, but when it happens in the CNS you've got a real problem on your hands.

One more possiblity is phantom pain. I have an article on my website about Dr. Weir Mitchell at http://www.painonline.org/mitchell.htm He was a Civil War doc who is credited for first investigating how people who were entirely missing limbs sometimes had horrendous pain as though the limb were still there. The brain has a 'map' of the body and is a limb is missing (and perhaps if the nerves to that limb are 'missing') the brain can still get pain signals that it thinks are coming from that area of the body.

Keep in mind that I have a degree in English, not science or medicine. I'm mostly going from anecdotal accounts and bits of information I've picked up along the way. Anyone who knows more than me is free to explain this better or flat out contradict me.

[firesmurf]

Thanks alot for the explanation Dave.I am going right now to pop onto that link.I was just reading a medscape article on the phantom pain thing a couple weeks ago.it really is rather amazing just how "in tune" our brains and our body parts really are,even down to the tiniest nerve.I see things a bit more clearly now.

You know,there has been one really huge thing that I just really cannot get over.its that there is actually a tract inside of the cord that enables you to actually recognize 'yourself",as in your awareness of yourself and where your body parts actually are?
of course I am tallking about the prioperceptive ability made possible thru the spinocerebellar tract?

before my spinal cord surgery,the only thing that my NS happened to actually mention to me was that I would lose the ability to know where like my legs were when my eyes were closed.well,it didn't happen right post op.no it waited til like 2;00 in the flippin morning (almost two years post op)when I got up to go on one of my first of two nightly potty runs.I went,feeling a little wierd but with the nightlight on so i could actually see,so I climb back into my bed lie down,get comfy again and shut my eyes.it was at that very moment that I lost my prioperception.that second i shut my eyes.i honestly did not even know anymore just where in the hell my legs went til I actually started moving them around.luckily,i kinda knew what was going on but it still scared the living crap outta me lying there in bed at 2am.this appears to kind of come and go at will.some days I am fine but others,that loss feels very strong and totally bizarre.

this same thing used to happen with my one of my arms whenever my migrane aura would start up.one of them would look like it belonged to someone else,like it was there and moving it but it was someone elses arm.now THAT really freaked out a thirteen year old when it happened for the very first time back in junior high while actually dissecting a frog in biology that day.between the whole freaky aura thing and the headache that followed,I really thought I was dying.and the wonderfully caring nurse thought I was high on drugs.thanks for caring Ms nurse.it was not til much later that we found out these were just classic migranes inherited from my dads side.

the thing is,tho these instances with my legs and my arm are somehow both related to my prio,they are very very different types of experiences from I am assuming two totally unrelated areas?that arm thing tho is by far the most freaky thing I have ever experienced ,and this was wayyyy before any area of my spinal cord was actually injured.just really bizarre tho.

i just never knew that the ability to actually even know'where we are' was something that actually stems from a tract somehow.

the more and more I research and read on neuroanatomy while just trying to navigate thru and just to even try to explain all of the freaky symptoms I have experienced along this nasty road,the more just awed I become in finding out just how all of our bodies work and everything just happens,and that whatever the "happens' is ,actually stems from something inside of us.

the human body really IS an amazing little machine ya know?Marcia

[bob clark]

Hi Mary,

I'm a T-5 complete and after 23 years, kinda outta the blue I got a pain in my right flank, a good 5 inches below my injury level. It's exactly where I "feel" pain from a bladder or kidney infection although for 20 years I never felt direct pain anywhere from even the severest of UTIs. When I took antibiotics for the UTI most/some of the pain went away but not all of it so it's obvious that this particular area is where any or most pain that I have below my injury level will manifest itself at. I coulda swore it was bladder or kidney stones. I had an IVP done and everything was perfect. So onto the next tests because I just knew that it had to be something physical. I had liver, gall bladder etc sonagrammed and my lungs x-rayed (I smoke) and again everything was fine, surprisingly. So onto a CT scan and spinal x-rays and again everything was fine.... well a little emphysema in the lungs and a small anomaly in or on my spine. But with no past x-rays to compare them with nothing could really be discerned from them.

As it turns out I have neuropathic pain and gabapentin (Neurontin) is helping somewhat. It feels like a knife in my side so I coulda swore it was something physical.

I actually think that it is my spine acting up from all the pressure it's had to endure over the years and the pain is eminating from there. Probably the vertebrae directly beneath my Harrington Rods where most of the weight, bending and pressure (probably from bad posture) is concentrated at, but it's only a guess.

Reqular pain meds like aspirin or oxycodone don't touch this type of pain at all. Only a pain med (anti-seizure drug!) like gabapentin works.

Ask your doctor about perhaps trying some Neurontin for awhile to see if it helps. At least this way you may be able to figure out what type of pain you're experiencing. Neurontin doesn't work for everyone but it's worth a try to hopefully narrow down the possibilities.

Good luck.

[rollin64]

Hi Mary,

I'm a T-5 complete and after 23 years, kinda outta the blue I got a pain in my right flank, a good 5 inches below my injury level. It's exactly where I "feel" pain from a bladder or kidney infection although for 20 years I never felt direct pain anywhere from even the severest of UTIs. When I took antibiotics for the UTI most/some of the pain went away but not all of it so it's obvious that this particular area is where any or most pain that I have below my injury level will manifest itself at. I coulda swore it was bladder or kidney stones. I had an IVP done and everything was perfect. So onto the next tests because I just knew that it had to be something physical. I had liver, gall bladder etc sonagrammed and my lungs x-rayed (I smoke) and again everything was fine, surprisingly. So onto a CT scan and spinal x-rays and again everything was fine.... well a little emphysema in the lungs and a small anomaly in or on my spine. But with no past x-rays to compare them with nothing could really be discerned from them.

As it turns out I have neuropathic pain and gabapentin (Neurontin) is helping somewhat. It feels like a knife in my side so I coulda swore it was something physical.

I actually think that it is my spine acting up from all the pressure it's had to endure over the years and the pain is eminating from there. Probably the vertebrae directly beneath my Harrington Rods where most of the weight, bending and pressure (probably from bad posture) is concentrated at, but it's only a guess.

Reqular pain meds like aspirin or oxycodone don't touch this type of pain at all. Only a pain med (anti-seizure drug!) like gabapentin works.

Ask your doctor about perhaps trying some Neurontin for awhile to see if it helps. At least this way you may be able to figure out what type of pain you're experiencing. Neurontin doesn't work for everyone but it's worth a try to hopefully narrow down the possibilities.

Good luck.


feels like i have that exact same pain in my lower right back. had my spine x-rayed an the doc seems to think it might be muscles. i recently started neurontin also an it really seems to have helped some but not all is gone. same thing......lortab does nothing.

an......oh bob. are you like me an never think to look at your pm's? :p

[maryonwheels46]

I'm with ya about if you are paralyzed completely why feel anything but it's so untrue. In the beginning the Dr's put me on 800mgs of Nurotin and I was knocked out for a while and then all I had was the burning butt. so I got myself down to 400mgs of Nurotin and it was fine for a few years but something has changed. Now I am going to try to go back up to 600mgs four times a day and see what happens. My cord was completely severed and they were not able to operate on my back for 2 weeks because they were just trying to keep me alive. I'm post 61/2 years now and I had the rods taken out 3 years ago and was glad because I could feel them especially up past my level of injury. But every now and then my toes would go to sleep or get numb which they never did that before. Some Dr's want to use the word phantom pains and I tell them real quick that I have better things to do then to run around and someone tell me that it is not real or all in my head. Bullshit. Just don't know why it has gotten so bad so fast, it's unreal. So hopefully I will find something to take the edge off.
Mary

[David Berg]

feels like i have that exact same pain in my lower right back. had my spine x-rayed an the doc seems to think it might be muscles. i recently started neurontin also an it really seems to have helped some but not all is gone. same thing......lortab does nothing.
For most folks who take Neurontin, it doesn't fix all the pain, it just helps make it a little more managable. At least for the folks who take it alone. It's pretty common to take with in combination with other stuff and even this neuropathic pain is stubborn enough a lot of them have to settle for just a reduction in the pain levels.

[bob clark]

feels like i have that exact same pain in my lower right back. had my spine x-rayed an the doc seems to think it might be muscles. i recently started neurontin also an it really seems to have helped some but not all is gone. same thing......lortab does nothing.

an......oh bob. are you like me an never think to look at your pm's? :p

Hi Rollin'

an the doc seems to think it might be muscles.

Like he's gonna know! Hahahaha :)

I don't know for sure but I have a feeling that our old spines are getting worse with age and bad posture are sending out pain signals that we "pickup" in certain areas like our sides or backs. Actually my pain feels like it's from my right side but wraps around towards the back too. Sometimes the gabapentin will take all the pain away for awhile but usually just reduces it to a managable level. Hey, it's a lot better than it was! OUCH!

I replied to you last PM of Wednesday on Thursday. Maybe you didn't get it. I can resend it if you like. Oh, I just looked and you sent another one on Friday too. I read it and just forgot to respond. Ooops. One of the side effects of Neurontin and Valium.... being tired and forgetful. I'll send ya a PM tomorrow or later tonight/early morning to reply... my hours are all mixed up.

Hope you get that Jay 2 deal rectified.

Bob.

[David Berg]

feels like i have that exact same pain in my lower right back. had my spine x-rayed an the doc seems to think it might be muscles. i recently started neurontin also an it really seems to have helped some but not all is gone. same thing......lortab does nothing.
Is your doc aware there can be a muscular component to central pain?
http://www.painonline.org/muscle.htm

[Broknwing]

Mary-
If you're having undesireable side effects from the Neurontin, there are other meds you can try. I found that a much lower respective dose of Topamax works a LOT better for my Neuropathic pain with no negative side effects whereas I had a lot of negative side effects with the Neurontin. If you find that the increase in the Neurontin is undesireable, maybe talk to your dr about changing meds. Topamax is only one of the other choices available to you.

[firesmurf]

Mary, brokn is soo right about trying the other anti siezure meds availiable.they all seem to 'show" their specific effects in their own way.I never ever had any problem at all with the neurontin,no side effects what so ever/but when I switched to gabitril,which my PM told me was the same thing as neurontin but it was just a much purer form of GABA? wow it still(after two whole years)makes me want to just curl up and go nighty night.that side effect has never gone away.

i will be starting lyrica after my next PM appt to see if that does anything for me.i just cannot tolerate the side effects during the day anymore from the gabitril.the thing is,the gabitril really does work to some extent(much better than the neurontin ever did)so the change really sucks.i am hoping to actually find at least one of the anti siezures that works without making me want to just sleep thruout the day.

trying another form of an anti would really probably be your best shot?There are many mnay different ones to try out there,that you DO react totally different to.that I know.good luck,Marcia