Announcement

Collapse
No announcement yet.

TINGLING SENSATIONS

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

  • #16
    Dr. Young,
    My husband's spinal cord injury qualifies as "very severe". I'll try to explain this, as he told me, but it's hard for him to explain to me, and difficult to understand... He has always had the burning pain. He also has the electrical shock feelings. Whenever he moves his head, or even if I touch his head, it increases the burning and electrical sensations(No, it's not a good thing). If he hits his chin,it sends an electrical jolt all the way down to his feet. Many times it is extremely severe. He describes the burning at times as being in a frying pan, or cooking in a microwave oven, with his skin stripped off. In May, after sleeping on the inclined bed (7 1/2 inches) after a few days, he said the pain became different, a "freeze burn". (yes he is trying the inclined bed,along with many other things, anything and everything that may help.)He has been completely off of Baclofen a year now, and off of Neurontin, for over 4 months. He believes the Neurontin and Baclofen are ineffective and counterproductive. His goal is to walk again, if it is at all possible. Sometimes, the burning is not as severe, more like waves of pulsing heat??? Though he is not "hot". He may even be covered up with a blanket. The burning is always there. Different things make it different, strange. Whenever he tries to move his toe,or leg, etc. the burning tingling in the toe, or leg increases. If you rub his legs, he feels it as a burn, that moves with your hand, though he has no "normal" sensation, pinprick or heat and cold. He is diagnosed C7 Asia A complete. I don't know how "correct" that is. One doctor described his injury as having only a few strands of cord tissue between C7 and T1. I don't know the percentage, but I like to believe he has at least 10 percent. Looking at the MRI, the cord is definitely very atrophied there. But he has alot going on just the same. In the pool, he definitly has quads, gluts, obliques, abdominals, and hamstrings working slightly.

    Comment


    • #17
      Originally posted by Phebus/Chris:


      Maybe I'm in la,la land?

      Onward and Upward!
      Nahhh. Just too focused on one group. Of course the same can be said of me as well I guess. Check out the thread I started on the exercise forum title Nuero Institute. In that thread I describean experience where 20 years post injury I have gotten slight movement in my legs. I haven't updated that thread but I need to.

      For 20 years I had the sensations described here. For twenty years I was told this is normal. I'm only finding out now that while it is common it is not normal. So here's what's been happening lately. I've been getting on the bike regularly along with stimming in the standing frame everyother day (great for the calves). I am getting sensations on my legs and thighs like someone is brushing them with a feather. when I'm on the FES bike I can now make the level of stim go down while increasing the amount of RPM's. And when I do this my left calf, butt, and both feet will start to burn like crazy.

      There is little doubt in my mind that there are a lot of undiagnosed incomplete injuries out there and the amount of recovery they could gain back is significant. And whether you go to NI, PW, or SCI Step, a program of this type is necessary to put your body under duress safely and make it respond.

      I like NI because of its size (it contains every piece of equipment used by the other programs pllus more), it uses FES (PW doesn't), and it takes insurances to help defray costs (I don't believe the others do, possibly SCI-Step, but I'm not sure). Others prefer PW. Still others are ecstatic about SCI-Step. Regardless of which one you choose . . . do something because you owe it to yourself.

      Chris, open invitation . . . come on down to Phoenix with your wife and stay at my house for a couple of days. Southwest is cheap from Denver to P-Town. My wife and I will throw some steaks and shrimp on the BBQ for everybody, we'll wash them down with some Coronas (or other beverage of your choice), and smoke some quality stogies under the misters. In return? You go to NI and work out with me for a day, check out their facility, meet the c5-6 quads who want to see how your hand surgery has gone, and meet the staff. If you still think PW is THE place after that . . . I'll buy you dinner and a margarita at the Top of the Rock (great view over looking the city). Plus you can give me some investment tips.

      Now haw can you do better than that?

      MAX OUT!!!
      What we do in life echoes in eternity. Maximus - Gladiator

      Comment


      • #18
        I get another thing besides the tingly sensation when I try to move something. I can feel my muscles tighten when I have spasms, and I can feel a spasm coming on by the tightness I feel in the muscles just before it goes off.

        _____
        Learn from the mistakes of others, you won't live long enough to make all of them yourself.
        Learn from the mistakes of others. You won't live long enough to make all of them yourself.

        Comment


        • #19
          I gat the same results when I try to move my leggs but theres something else I would like to add to this subject..Lets go the other way and try to relax your muscles in your leggs,what Happens!When I try to relax my legg muscles they start to spasm and the more I think about being relaxed the spasms get worse.Now when I mean spasm its seems to be a different kind of spasms,a feel good spasm.[img]/forum/images/smilies/smile.gif[/img]Anyone else ever notice this sensation. Happy Trails Stiggy

          "The Meaning of things lies not in things themselves,but in our attitude towards them"
          "The Meaning of things lies not in things themselves,but in our attitude towards them"

          Comment


          • #20
            larwatson, Scott - If you noticed this thread was started inJuly 2002 about 3mos before I attended PW and before NI really came on line. This thread was started / written prior to my initial experience therefore my post "la la land" was essentially moot in today's discussion. Make sense?

            To be clear there have been comments made in the past that've eluded to my supposed favoritism of a particular program, i.e. PW.

            Personally, and professionally (whatever works to get us better is all I really care about) I do NOT favor any of these programs over another. In my mind I am excited that a few of these places exist nationally although we are in desperate need of many more - every city. This upsets me - that there are not more that each and everyone of us can attend.

            Sittallstandtall, NI, SCI-Step, Center IMT, PW, CRPF Centers of Excellence are all GREAT programs. The difference to me, because of experience / inquiries is in the staffing and one on one attention all day every day at PW vs limited at the other facilities. Btw, Center IMT wanted to charge me $140 per session - 1.5hrs. Is that reasonable or exorbitant? Depends on who's paying.

            My understanding is that the other facilities offer one on one but generally once your familiar with the equipment you're on your own to use it. Right? Wrong?

            Which is better? I don't know. However, that is a big difference, and the reason imo, for the large price disparity.


            larwatson, let me also touch on FES (bike). I agree with you and everyone else about the benefits of e-stim pedaling - no doubt. However, I have seen muscle building also done without it on various other machines - leg press, total gym, etc. with assistance.

            Is it absolutely necessary? I don't think so. Is it preferred if available? To me, absolutely. But I don't think that just because one facility has FES and another doesn't means that one should be favored over another.

            Again, I've seen similar results that were achieved exclusive of FES. Muscle stimulation, no matter how achieved, is still muscle stimulation isn't it?


            [img]/forum/images/smilies/biggrin.gif[/img] [img]/forum/images/smilies/cool.gif[/img]Now, as far as steaks, stogies and Coronas go - you're talking my language [img]/forum/images/smilies/smile.gif[/img] and I sincerely appreciate the offer. I'll check with the boss and see if we're up for a Skyharbor landing (I used to have sales territory in Phx during my days with D&B) so I'm pretty familiar with your neck of the woods - although its been a while.

            Finally larwatson, let me say that you are an inspiration to many, including yours truly, to be going for it after 20 some odd years. You're a better man than I. Now, as far as your choice of profession....well that's another story [img]/forum/images/smilies/wink.gif[/img]
            (I've got 3 attorneys in my family lol [img]/forum/images/smilies/rolleyes.gif[/img])


            Btw, I think PW does have an FES bike but they prefer not to use it. [img]/forum/images/smilies/tongue.gif[/img]

            [This message was edited by Phebus/Chris on 06-24-03 at 09:14 PM.]

            [This message was edited by Phebus/Chris on 06-24-03 at 09:18 PM.]

            Comment


            • #21
              hey Chris... I hope I'm not coming across as showing favortism here. My references to the NI are simply b/c that's what I've looked at most seriously & actually seen... & this probably sounds odd, but I just have a feeling in my gut about NI. I discovered PW a while ago too, but there wasn't anything I felt inside that spurred me to look into it further.

              I personally don't favor either of these programs over one another, primarily b/c I don't have as good of an understanding of the others aside from NI. I do, however, fully support the motivation behind all of them & am thrilled to hear progress reports from each.

              then again, I'm still an "outsider" -- within a couple months I may have other thoughts... but right now I can say that these programs have something going that I don't think many people are grasping the potential of yet... only time will tell, I guess.

              re: Steaks & Coronas... guys, come on. Steaks, heck yeah. Corona, nah (*cough* mexican piss *cough*). There's so much better stuff available... & Chris, you're from Colorado... come on, show a little support for Fat Tire [img]/forum/images/smilies/wink.gif[/img] That stuff is some of the best beer I've had... yup, even though I'm from Virginia. A friend who used to live in Denver brought some back this way... good stuff.

              Anywho, I sense a slight amount of tension here... I vote to just let it chill; no one is at fault or appears to be an instigator... we're all playing this SCI game together. The more we can learn from each other, the better.

              Just my $0.02.

              ~ scott

              [This message was edited by jmublueduck on 06-24-03 at 10:16 PM.]

              Comment


              • #22
                I take it PW is project walk, but what is NI?

                _____
                Learn from the mistakes of others, you won't live long enough to make all of them yourself.
                Learn from the mistakes of others. You won't live long enough to make all of them yourself.

                Comment


                • #23
                  sorry Jim, et al... abbreviations are just easier sometimes.

                  PW = Project Walk, www.projectwalk.org
                  NI = The Neuro Institute, www.theneuroinstitute.com

                  Comment


                  • #24
                    Redneck, what a complicated question. Let me try to answer each component of your question (your words in italics).

                    Dr. Young, My husband's spinal cord injury qualifies as "very severe". I'll try to explain this, as he told me, but it's hard for him to explain to me, and difficult to understand... He has always had the burning pain.
                    • Burning pain is the most common manifestation of neuropathic pain. It probably results from abnormal spontaneous activity of sensory neurons that have lost connections to other brain and spinal neurons, loss of inhibitory input that normally prevents such activity.

                    He also has the electrical shock feelings. Whenever he moves his head, or even if I touch his head, it increases the burning and electrical sensations(No, it's not a good thing). If he hits his chin,it sends an electrical jolt all the way down to his feet. Many times it is extremely severe.
                    • I am concerned by this description. The electrical shock feelings may be coming from mechanical irritation of his spinal cord. This phenomenon is sometimes called L'Hermitte's sign which occurs when the spinal cord is compressed and movement of the cord irritates the cord. You should make sure that your husband does not have spinal cord stenosis (narrowing of the canal) and has been adequately decompressed.

                    He describes the burning at times as being in a frying pan, or cooking in a microwave oven, with his skin stripped off. In May, after sleeping on the inclined bed (7 1/2 inches) after a few days, he said the pain became different, a "freeze burn". (yes he is trying the inclined bed,along with many other things, anything and everything that may help.)
                    • The adjectives of "burning", "cooking", "freezing" are often used to describe neuropathic pain. Others describe it as an ache, pressure, or even vibratory.

                    He has been completely off of Baclofen a year now, and off of Neurontin, for over 4 months. He believes the Neurontin and Baclofen are ineffective and counterproductive. His goal is to walk again, if it is at all possible.
                    • For most people, neither baclofen or neurontin completely relieves neuropathic pain. However, many people find that neurontin will reduce the intensity of the pain although very high doses (up to 4000 mg per day) may be necessary to be effective. Baclofen also reduces neuropathic pain, particularly neuropathic pain associated with spasticity, but because one cannot push baclofen to very high doses without sleepiness and other brain effects, oral baclofen frequently does not have beneficial effects for severe neuropathic pain. However, some people believe that intrathecal baclofen reduces their neuropathic pain. Taking too much baclofen of course may cause weakness and interfere with motor recovery. To my knowledge, neurontin should not cause weakness even in very high doses. There have been reports that 4-aminopyridine reduces spasticity and neuropathic pain while increasing muscle strength and resistance to fatigue, particularly in patients with multiple sclerosis.

                    Sometimes, the burning is not as severe, more like waves of pulsing heat??? Though he is not "hot". He may even be covered up with a blanket. The burning is always there.
                    • Is his skin warm or is flushed when this happens? This would suggest that he is not only getting increased abnormal sensory signals but the excitation is spreading to the autonomic system that controls blood flow to the skin.

                    Different things make it different, strange. Whenever he tries to move his toe,or leg, etc. the burning tingling in the toe, or leg increases. If you rub his legs, he feels it as a burn, that moves with your hand, though he has no "normal" sensation, pinprick or heat and cold.
                    • Over the years, I have heard many people describe what you indicate above, i.e. attempting to move causes tingling or other sensations in the toe, finger, or limb that is the target of the voluntary activation. Some people, in fact on this site, have described this as a precursor to motor recovery.

                    He is diagnosed C7 Asia A complete. I don't know how "correct" that is. One doctor described his injury as having only a few strands of cord tissue between C7 and T1. I don't know the percentage, but I like to believe he has at least 10 percent. Looking at the MRI, the cord is definitely very atrophied there. But he has alot going on just the same. In the pool, he definitly has quads, gluts, obliques, abdominals, and hamstrings working slightly.
                    • Just from your description, I think that he is an "incomplete ASIA A". While this may seem contradictory, I want to emphasize that the ASIA categorization was really a system designed to provide some prognostication for recovery during the early phases after spinal cord injury. Especially in chronic spinal cord injury, many people have what I call a zone of partial recovery that extends many segments below the original injury site. Why this zone occurs is not well understood but both the timing and the proximal-to-distal direction of its spread suggests strongly to me that it is due to spontaneous regeneration of the spinal cord. Now, I know that many clinicians would probably castigate me for saying the R-word without iron-clad evidence but I think the recent studies of Christopher Reeve is beginning to change the minds of clinicians. Most experienced physiatrists will tell you that they know many people who have multisegmental zones of partial recovery, that such recover can occur years after injury, and that they tend to extend from the rostral to caudal direction over time.

                    In summary, I strongly suggest that your husband get an MRI if he has not had one recently. He may have a syrinx, spinal cord stenosis, or tethering his cord. I don't remember now (from your previous postings) but what you describe certainly suggests the possibility that he is having some irritation of the cord.

                    Wise.

                    [This message was edited by Wise Young on 06-25-03 at 09:23 AM.]

                    Comment


                    • #25
                      Thanks Dr. Young for your answers.
                      My husband has had a recent MRI, that says what the one done months previously said. Both doctors agreed...his cord is "possibly tethered". He doesn't have any cyst or narrowing of the canal. I posted questions in regard to finding a place that would do the MRI in the prone position in the hopes of answering this question. I don't know what to do. The MRI in the supine position will not be sufficient to get the answer we need. He does not have any neurological loss going on other than pain throughout his right arm and increased numbing of the 4th and 5th fingers on that hand. On the contrary, he is improving slowly. He now has slight lateral movement in the fingers of his right hand. According to the MRI, his cord is not compressed, however his neck is curved and the cord is touching the thecal sac posteriorly and possibly tethered. He has been doing laser puncture in the hopes that this might help if there is an adhesion.
                      I appreciate your answers to my comments.
                      Thank you

                      Comment


                      • #26
                        Scott, no tension just an explanation and some clarity on my part.

                        I hear ya on the Fat Tire, etc.

                        I like beer in many flavors lol. [img]/forum/images/smilies/cool.gif[/img]

                        Keep pumping iron wherever it may be - its all good / beneficial.

                        Comment


                        • #27
                          redneck, sorry, I should have remembered about the recent MRI. There are two places that are willing to consider operating on potentially tethered spinal cords that have syrinxes: Miami Project and Craig Hospital in Denver. You may want to see if they are willing to look at the MRI's. Given your husband's symptoms, particularly the electrical shocks associated with movement, I think that there may be rationale for surgery. Wise.

                          Comment


                          • #28
                            Thanks Dr. Young,
                            We have heard good things about Dr. Falci at Craig, and will see about sending the MRI to him for an opinion.

                            Comment


                            • #29
                              Originally posted by Phebus/Chris:


                              larwatson, Scott - If you noticed this thread was started in_July 2002_ about 3mos before I attended PW and before NI really came on line. This thread was started / written prior to my initial experience therefore my post "la la land" was essentially moot in today's discussion. Make sense?

                              larwatson, let me also touch on FES (bike). I agree with you and everyone else about the benefits of e-stim pedaling - no doubt. However, I have seen muscle building also done without it on various other machines - leg press, total gym, etc. with assistance.

                              Is it absolutely necessary? I don't think so. Is it preferred if available? To me, absolutely. But I don't think that just because one facility has FES and another doesn't means that one should be favored over another.

                              Again, I've seen similar results that were achieved exclusive of FES. Muscle stimulation, no matter how achieved, is still muscle stimulation isn't it?

                              Btw, I think PW does have an FES bike but they prefer not to use it. [img]/forum/images/smilies/tongue.gif[/img]
                              My bad Chris. But my offer still stands . . . steak, shrimp, Corona's and stogies. And Scott . . . if necessary I will break out the Moose Drool for Chris . . . nothing like a good Montana beer to fire you up. There's a quad at NI who would love to talk with you about your hand surgery and see its benefits up close.

                              As far as FES . . . its a tool. In my mind an absolutely necessary one for many. Would muscle stimulation without FES be better? Yes, if you can achieve it. Some at NI have . . . others haven't. A number have achieved independence on a bike and walking after having had their muscles first strengthened by FES. Heck we have one para who can ride the bike independently but doesn't respond to stim . . . go figure . . . we're all different. That's why if I'm looking at laying out serious cash on a program I want all technologies available to me until we can figure out what works and what doesn't . I know that without FES there is no way I would have achieved the return that I have to date (not that its monumental, but hey its something after 20 years.

                              Hope you can make it down . . . you might want to wait until September though . . . its going to be around 109 down here for the next week. Then again we do have a pool and misters so we're pretty much good to go year around.

                              And we do agree on one other thing . . . whether it be NI, SCI-Step, PW, etc., a short stint at one of these programs to at least understand what you need to be doing at home can be extremely beneficial and worth the money. These folks are thinking outside the box . . . because what's in the box is simply not enough. Then go home and bust your butt.
                              What we do in life echoes in eternity. Maximus - Gladiator

                              Comment


                              • #30
                                hehe... good stuff larry & chris... sorry about fueling that little tangent in this topic [img]/forum/images/smilies/wink.gif[/img]

                                otherwise great input overall.

                                ~ scott

                                Comment

                                Working...
                                X