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Ten frequently asked questions concerning cure of spinal cord injury

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    #76
    • Both spasticity/spasms and neuropathic pain involve hyperexcitability (abnormally increased activity of neurons). These result from two mechanisms. The first is disinhibition. Over half of the descending and ascending connections of the spinal cord cord are inhibitory, i.e. directly inhibitory by release of GABA or glycine neurotransmitters or connect to inhibitory interneurons (neurons that connect to other neurons in your spinal cord as opposed to motoneurons that connect to muscles). Many of the inhibitory connections connect to the sensory fibers that come into the spinal cord, i.e. called pre-synaptic inhibition. When these inhibitory connections are disconnected, the neurons that they previously innervated will become hyperexcitable. Second, disconnected neurons can get hyperexcitable all by themselves. Hyperexcitable neurons send inappropriate signals to the brain. These signals are often interpreted by the brain as neuropathic pain. That is why inhibitory neurotransmitters (e.g. baclofen, clonidine, tizanidine), drugs that change neurotransmitter levels (e.g. amitryptaline), and anti-epileptics (e.g. neurontin) are sometimes useful for treating spasticity/spasms and neuropathic pain.

    Wise,

    I read above and also in answer to Question 1 about pain sensations. So this means new therapies will help those with central/neuropathic pain? Can you provide me with a brief discription how and in very easy terms, for a layman to understand. (when you have the time)

    Thanks,
    Leia

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      #77
      Dr. Young can you please post a diagram or a 3d like image of the spinal cord and its elements. Just to get a better visual understanding?
      A CURE NOW!

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        #78
        Princess Leia posts:
        I read above and also in answer to Question 1 about pain sensations. So this means new therapies will help those with central/neuropathic pain? Can you provide me with a brief discription how and in very easy terms, for a layman to understand. (when you have the time)
        To date, there have been few studies of how regeneration may reduce neuropathic pain. Many scientists have expressed apprehension that therapies that promote regeneration and sprouting may promote indiscrimate connections and contribute to neuropathic pain. Of course, experience with the effect of regeneration on neuropathic has been very limited in human (because there have been few regenerative therapies that have been tried on humans). Dr. Huang has observed and some people here have reported that they have a transient period of "pain" in the areas where they recover sensation after olfactory ensheathing glial transplants. I don't know how consistent it is but am glad that it seems to be transient. One CareCure member, TimC, had neuropathic pain before he went and reports that it had gotten worse after he came back (see eijing - Tim C's OEG surgery report. However, neuropathic pain did not develop in several other people who did not have neuropathic pain before they had the olfactory ensheathing glial transplants (See Summary of topics related to Dr. Huang's OEG procedure).

        Wise.

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          #79
          I have a question. If Dr. Huang is doing great things in China, why the delay here in the states? It seems like we should be able to replicate his work fairly quickly.

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            #80
            aten, good question. You would think that the answer is yes. The specific therapy that Dr. Huang is using may not be so easy to replicate in the United States because he is using fetal olfactory ensheathing glial cells. Dr. Lima's nasal mucosa transplant would be doable in the United States. Dr. McKay-Sims olfactory ensheathing glia cells cultured from the nose would be doable as well. I don't know. I am sorry to have to repeat myself but the reason may be lack of money for spinal cord injury clinical trials of therapies not supported by industry. Wise.

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              #81
              Aten, the political climate in the US is unconducive to research using fetal tissue.

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                #82
                Originally posted by Rollin Rick:

                Originally posted by Keith:
                I don't need to be cured and that's what you want to call it.. I will settle for being healed.. And no expectations of being the way I was eight years ago.. Considering I am a C-3 being able to take a shower by myself, taking a blanket off in the middle of the night would be great.. And 8 years away for this is ridiculous need to do it 2 years.. Tell me which country I will be on the next Airplane.. Just want to be healed,

                keiffer66
                there will be a cure in two years

                What one man can do another can do
                a cure in clinical trials.

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                  #83
                  How about opening a clinic in the Caiman maybe ESC can be used there it´s close a maybe even legal?? What I don´t know is if they have any train station for Da. Who knows?

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                    #84
                    Anybody ever entertained using a "floating hospital" 100+ miles offshore USA for OEG implants?


                    Thank you,

                    Andonis7777

                    Comment


                      #85
                      Class action lawsuit for unnecessary pain and suffering against respective governments? Based on the premise that curative therapies exist and nothing is being done about it. We'd need a researcher as an expert witness ...

                      Money talks ...

                      It would sure get some media attention as well.
                      Roses are red. Tacos are enjoyable. Don't blame immigrants, because you're unemployable.

                      T-11 Flaccid Paraplegic due to TM July 1985 @ age 12

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                        #86
                        Oh yeah, Andonis

                        ship

                        "All you have to decide is what to do with the time that is given you."
                        Gandolf the Gray
                        http://justadollarplease.org/

                        2010 SCINet Clinical Trial Support Squad Member

                        "You kids and your cures, why back when I was injured they gave us a wheelchair and that's the way it was and we liked it!" Grumpy Old Man

                        .."i used to be able to goof around so much because i knew Superman had my back. now all i've got is his example -- and that's gonna have to be enough."

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                          #87
                          Hi Wise,
                          My son is a newly injured C5/C6 SCI patient who is currently at the Shepherd Center in Atlanta.We live in Ridgewood,NJ and hope to attend some of your open forums when we return to New Jersey.While devastated and heartbroken,we will continue to have hope that science will find a way to improve the future for all SCI injured people.While there may not be a magic bullet or cure as you have already stated,i hope that a combination of treatments will allow for better functioning.I have talked to your associate Patricia Morton a few times and she is delightful and a great source of wisdom.I hope we will get a chance to meet someday and will continue to read your posts.As a new member to Carecure, I am still trying to learn how to navigate the system.My e-mail is willypx@aol.com and if you have a chance pls take a look at my son's website.He is a great 19 yr old who is hoping and praying the the science community, and frankly i have been told by many SCI parents that you know that you are the best, that the future is getting brighter.Let's stay in touch.God Bless u for your hard work. Sincerely, Bill Price

                          Comment


                            #88
                            Bill (willypx), thank you. I hope that we will meet soon as well. There is so much going on in spinal cord injury and more will be coming on in the next month or two (there is always a flurry of scientific reports coming out in association with fall neurotrauma and neuroscience meetings. Most of these will be posted here on the cure forum. Wise.

                            Comment


                              #89
                              Originally posted by Wise Young:

                              .....There is so much going on in spinal cord injury and more will be coming on in the next month or two (there is always a flurry of scientific reports coming out in association with fall neurotrauma and neuroscience meetings. Most of these will be posted here on the cure forum. Wise.
                              any good news????????? [img]/forum/images/smilies/eek.gif[/img] [img]/forum/images/smilies/eek.gif[/img]
                              -Ramps in buildings are necessary, but it would be usefull to have another ones for people (mind/heart).....

                              -Hoc non pereo habebo fortior me

                              Comment


                                #90
                                Dr. Young,

                                Thanks for all the advice. Quick background on me: I'm a 26 year post injury C4/5 quad; I fell from a tree at 15. I'm still constantly learning after 26 years! A few questions now...

                                I'm wondering about Syringomyelia. Is there a difference between Syringomyelia and a syrinx? If so, please explain. I ask because in the emedicine link it states: "In the US: Approximately 3-4% of persons with traumatic SCI develop clinically symptomatic PTS. A larger percentage of persons have clinically silent syrinx cavities diagnosed by imaging techniques."

                                I have been diagnosed with a syrinx by an SCI specialist at RIC (Rehab Inst. Of Chicago). My problem is she is the only one who says I actually have it. I've had 2 MRI's (1 open & 1 closed) a CAT scan & a Milogram. Because they fused my neck in 1978 the wire kept interfering. When she looked at the Milogram she showed me what she said was a syrinx. The tech that administered the Milogram didn't see a syrinx, nor did the surgeon at Northwestern my Dr. sent me too see. Two other problems she said I had were tethering of the spinal cord (Which I'm still not sure I understand) and also there were 2 foreign objects in my spinal cord. She showed the Milogram to the surgeon who actually did the surgery in '78 & he said they were stabilization wires & were right where they should be. She wants me to have surgery to repair the tethering & syrinx & remove the wires. The only thing I'm unsure of is if I have a syrinx why didn't the other Dr.'s see it? Should I go ahead with the surgery anyway?

                                My symptoms that started me searching for a solution started around Oct. 03. Where I would have the sensation I had to pee, but couldn't this being followed by profuse sweating on the left side of my head, chest & arm. Left arm would also get ice cold. I know from experience this is AD. I would lie down, usually pee & be fine afterwards. Although there were several times I wouldn't pee even after lying down & had to do an in/out cath. (If you haven't figured it out, I wear an external catheter & trigger void, I don't do a straight cath unless I'm having problems). It started out once or twice a month, and then went to a few times a week & eventually practically every day. I developed a pressure sore in late Jan. which kept me in bed mostly & I noticed I had very little symptoms while lying.

                                One other thing I discovered: When I was on vacation in June for two weeks I stayed in my manual chair the whole time as I don't want the extra weight from my electric chair on my boat while fishing. During vacation I noticed three things, 1. I was sweating very little, 2. I had no problems peeing, & 3. My pressure sore was getting better even though I was sitting much more than I had in the previous 4+ months. I didn't think much about 1 & 2 as it had come & gone in the past & I changed the treatment on my sore just before we left so I just figured we were on the correct path finally. When we came back I spent nine days in my electric chair. I don't remember exactly when, but very soon after I got into it my sweating started reoccurring & at times very profusely. I also noticed, after about four days my sore was getting much worse again, so I had my wheelchair guy make some modifications & tried it for a few more days. No progress so I figured I'd stay in bed & use my manual chair until it healed more & we could better figure the problem.

                                When I was back in my manual chair again there was no sweating or peeing problem. I've since got into my power chair I think four times for occasions where I wanted to be in control of my mobility and three of the four times I had at the very least mild sweating & on two occasions problems not being able to pee.

                                All this being said, I can only assume my sweating & not peeing has something to do with the way I sit in my power wheelchair. Unfortunately, I got a hole my theory on the night of 10/5/04 & during the day on 10/6/04. Night of 10/5 while doing my bowel program I started sweating moderately while sitting on the commode chair. Then, I went fishing 10/6 in my manual chair & about an hour after I got there couldn't pee again and started sweating. First time this happened in my manual chair! :-( I stayed for another hour anyway, came home & laid down, I pee'd 500cc's got back up & have been fine since, with the exception of mild sweating during my BP on 10/7.

                                I'm wondering now, and have been for some time, if my hemorrhoids have something to do with this. I understand they can be quite painful & am wondering if when I sit a certain way it sets this off as it does happen much more often in my power chair.

                                One last symptom I've had for about 10+ years & that's the weakening of my right arm. I used to be able to easily put it on my joystick & drive with no problems, now I have to drop it down & swing it up & even that is difficult at times.

                                Well, this got quite a bit lengthier than I planned & I apologize for that, but wanted to give you all the information so you could more accurately answer my questions.

                                Yard by Yard, Life is Hard---
                                Inch by Inch, It's a Cinch!

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