Pain or sensations........

[spidergirl]

I am 2 months post my injury and I am a little confused about what is pain and what is sensation. Since everything in rehab was "normal"...I thought everything at home would be "recovery" . I am not sure what neuropathic pain is what exactly is that? I have pains on my bunns when I sit a long time and I have some weird feeling in my right foot constantly. (like its sleeping). As far as sensations are concerned some of them are in places I would rather not discuss but others are when my mother puts cold packets on my feet..I can close my eyes and tell her where shes putting them including ice cubes in between my toes. Now for a T4 complete is this normal, recovery, pain or sensation?

[mike]

Spidergirl, you can see some pretty good information on neuropathic pain on http://www.painonline.com and http://www.painonline.org. I am sure others can give you more expert advice on this then I can.

It is interesting that you are sensing when ice cubes are placed on your feet since you are diagnosed as complete. I believe that there have been other cases with people on this forum who were diagnosed as complete who later found out they were incomplete. In any case good luck with your recovery

[David Berg]

welcome spidergirl. I hardly know where to start, but I'll give the briefest of explainations. There's lots more good info here on the forum and on the sites mike posted.

Basically, neuropathic pain is caused by imcomplete damage to sensory nerves. Also, keep in mind that motor nerves and sensory nerves are seperate. It honestly sounds like perhaps the injury to your sensory nerves might be incomplete, to the point where they are damaged, but it sounds like some kind of signal is possibly getting through. There is something else called phantom pain, where you can feel the presence of, and even pain in, a limb that is missing or has a complete nerve injury, but there's something more than that going on here because you can feel specific input, namely the ice cubes.

Do you have a good physiatrist (rehab doctor)? Whoever you're seeing, you should discuss these sensations you're having to help re-evaluate what you have going on.

As far as the feeling like your foot's asleep, that sounds like paresthesia, sort of a pins and needles sensation. I don't have SCI, but I do have a nerve injury that causes a little of that sensation in my big toe so I at least have an idea what you're experiencing in that small way.

I wish you luck as you deal with your relatively new situation and I hope you have a qualified doctor that you're happy with.

[CapnGimp]

Doesn't sound like you are a complete to me, you can feel things in your feet. I could cut my legs off with a chainsaw and not know it. I burn and have the various 'pains' below my injury,T4, but they are neuropathic pains.
If you are feeling ice cubes, and they told you that you are a complete, I would go be reevaluated. And look into PT to try and get more return, sounds like you are incomplete. That is a great thing, hope you keep getting more!

[spidergirl]

Thank-you all for answers. However, I was reavaluated by my doctor on Friday morning and he said I was still a complete. He did the ice-cube test and the pins and needles test on my right foot and did in fact conclude that I was feeling temperature and pain sensation down there. But I am still a complete??? So who knows...I hope to God that I continue to get more and more and turn into an incomplete soon. I can even now feel when my foot is cold. But like we all say everyone and everything is so different. Still no information on bunns hurting. Personally I think my doctor is just as confused as me. :thinking:

[SoFla]

Don't even think about the label of complete or incomplete, Spidergirl. The label doesn't matter. What matters is that you are feeling something, and that's good! You are only 2 months post. Work with your PTs, try to keep what you have strong, and there should be many more recoveries over the next few months. I wish you all the best!

[CapnGimp]

Agreed! I'm still c0rnFuzed over the labels,lol. You are getting feeling back, that speaks for itself and that is what counts, in my opinion. And at 2 mos post, that is a great sign, I'd think you wold continue improving.
It's always great to hear of folks getting better!

[bikeracer]

I to am a complete injury but can feel heat below the level of my injury, i.e. if you rest a cup of tea on my leg I can feel the warmth of the cup - it's not completely normal but its there. I have asked a similar question to you a while back and I was told that you can get Zones of Partial Preservation which basically are bits of stuff still working, which can only be good :o)

[dejerine]

I am no expert on this, but the expert I asked about it said that autonomic sensation via sympathetic and parasympathetic has ways (routes) to bypass the cord and reach the brain. In this sense, no one would be complete. However, since the pain is not the normal somatosensory pain or sensation, he still termed such people complete. If you have central pain "complete" can sound pretty good sometimes.

Sexual function may have some return after a while also, and the really startling thing is that the parasympathetic sexual functions (look it up--I'd rather not go into it) actually begin to get handled by the sympathetic ganglia further up--this is theoretically impossible based on existing theory, but then so was Central Pain impossible at one time. Now of course, it is not only possible but it and peripheral nerve injury, which has n incredibly easy model to create in rats and so is preferred, is absolutely the darling of the brain scientists.

CP is still the ugly stepchild of the neurologists and does not exist at all for the rest of the medical profession, who are madly endorsing mindbody types of superstitious nonsense and pain cures, so we have a way to go. If it weren't for the anesthesiologists who seem to have time to theorize and reflect while they sit there collecting money while the machine keeps you asleep, no one would much care about basic pain mechanisms. Strangely, the dentists who are tired of being hated also do a good job on neuropathic pain mechanisms, at least at the NIH. You can be complete and still perceive certain sensations. These sensations probably also get to the brain along nerves that are part of the blood vessels.

Happy holidays to all and thanks for the gift you have given me all year of feeling not infinitely isolated, only mostly isolated. I bleed a little for all of you, but still I go to this site more than all the others put together. We have painful friendships, but at least they are friendships. I feel it is a shame for human beings to struggle through heavy pain all the waking hours, but I know that a little money and some more neurochemists could end it all. We are not helpless, we just haven't been helped yet. In my mind, the pain scientists are the truly good guys of this world. They do God's work. According to Christian tradition, Jesus' pain experience was the pivotal event of his life. I do not see how my pain experience has any benefit for anyone. A paradox for me. I am not philosophical about pain, I am upset about it and kind of ticked off at doctors. Bad karma I know, but I can't help it.

[bob clark]

Happy Holidays to you too Dejerine.

I was thinking about you the other night. On C-SPAN the House was "debating" NASA's budget so you instantly came to my mind. I was gonna post a heads-up here but figured the debate would be over by the time you read it. I emphasize "debate" because from what I watched they were all merrily in agreement. Maybe they worked out the glitches in their "markup" session and were just going through the procedural Floor motions. The one number I recall being bantered about was NASA's new budget would only be .07% of the total national budget. I didn't stay tuned in long enough to hear the dollar amount. They were discussing Bush's "vision" (oh, pulease!... don't make me gag.... "Bush's vision" is an oxymoron) as it related to space exploration and I imagine the moon and Mars missions. And something about extra funding for the new CEV (Crew Exploration Vehicle). Congress and especially NASA love to toss those acronyms around.

Now if they'd just add a few billion extra to the NIH and NSF budgets for pain research....

[spidergirl]

Thank-you Race, Sofla and Gimp for answers. I actually discovered Josh Basile on here who is a huge advocate for excercise so I am going to follow in his steps and step it up a noch with excercise because I know with those patches of "abnormal feelings" I am getting..there is something getting through....and with the excercise forget it I will be an incomplete. I am greatful for the optimistic people on this sight to keep me motivated and moving forward to know that anything is possible. Not to mention, lets get real here....the cure will be a combination of not only effective therapies but excercise and a great attitude!

Check it out if you haven't seen its awesome. www.determined2heal.org (http://www.determined2heal.org)

[dejerine]

Bob,
You are a man after my own heart. Bush's vision could be expanded even further by a couple syringes of capsaicin subcutaneously every hour. He would stop being a moon man. Then, 10% of the national budget would not be too much to stop pain. The irony is that if we spent the money on pain research and found cures, we would turn a vast profit. There is a real possibility of selectively killing cells by wiping out their mitochondria. This should in theory end pain as well as cancer and other bad things. What is a pain cure worth? What is a cancer cure worth? Even the meager attempt, using pre World War II nitrogen mustards invented by the Germans, around here generally runs about a million dollars. What is a new spinal cord worth. Biotechnology will provide many more jobs than NASA ever thought about.

I don't know about you, but I am still waiting for ANY beneficial thing for man to come from the "INTERNATIONAL" space station. The editor of Harper's magazine wrote a book criticizing the Americans for imagining that the world is "our lake", making us responsible for doing everything everywhere. If Amzernoziboza Begernazivinia wants to set up a new stall selling gourds somewhere far away it is our job to give him startup money, while we leave Americans struggling and gasping in pain without so much as a paeon to their condition. We are after glory more than goodness when we do this. There is a man living near me,a good man, who dispenses food to the needy overseas. He makes about 200,000 per year, takes long vacations, and competes aggressively in racquetball tournament. There is another man who just moved here after retiring as a pain researcher at the NIH. He made 40,000 per year doing it and is the smartest person I have ever met. Hunger is not the only pain worth solving. Death is not the most fearsome foe of mankind. I keep swearing not to talk politics since someone is always offended, but I don't see America as Hollywood expanded. I see it as humanity trying to set a model. When even Bono says there is enough money to feed people, but good government is what is needed for hunger; then I figure maybe good government could do more to help pain research too. My neighbor who did the pain research at NIH could not support his family and had to quit. If you have a four year degree in physics and get hired by NASA, by contrast, your financial worries are over. Of course, NASA only has 1500 physicists on salary. They have fifty thousand administrators. I actually think the new head one is good. He keeps saying NASA should get out of the entertainment business and back into science. This is a step in the right direction. Still, when is the last time NASA contributed anything considered science worthy to appear in a genuine scientific journal such a Nature, Science, or Scientific American? The local library just discontinued 10,000 journal titles which they were subscribing to just as vanity press for professors at the University who had published in them. These are the kinds of journals NASA publishes in. Outside of NASA's website and the Associated Press, I can't think of anyone in the science world who is impressed with the "knowledge" flowing to us from outer space. Most of it you can find at the supermarket at the checkout stand, right along with Shakira's latest lyric translations.

It is strictly a rumor, but nevetheless a rumor, that NASA deliberately avoids having biologists around because they feel intimidated by them. Even the smartest of the NASA bunch doesn't want some smart alecky MD/PhD asking about long term risks of time up in the radiation areas. Let's put it this way, I don't think any of the sperm banks will be lining up to ask the guys who manned the international space station to serve as donors.

We should also allocate money for speech lessons for Pres. Bush so he can learn to pronounce "nuclear". This might also improve his vision. The self flattery of Congress indicates that quite a number of them could use a little more education in the science area, and a little less education in the law. How interesting would the NFL and the NBA be if the game were played by referees rather than athletes. Why are lawyers determining the course of science? If space had anything to offer, some corporation would have long since gone after it. There is a lot of space up there to study. Maybe it is part of "our lake" too. If so, we better have a lot of cash on hand to waste.