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Thread: Ten frequently asked questions concerning cure of spinal cord injury

  1. #221

    I am not sure how to answer your questions because this is what rehabilitation was supposed to do and teach you. Let me comment on a few things first and then try to answer your question concerning each of the secondary conditions. At 9 months after injury, you may have some more recovery in front of you. Where was your original injury level? How much have you recovered? Do you have any triceps (C7)? How much wrist function (C6) do you have?

    • Osteoporosis. Bone loss occurs relatively quickly (within 6 months) after spinal cord injury. Although many people believe that standing an hour a day may prevent bone loss, several studies have suggested that standing alone do not reverse bone loss. However, most of these studies have involved only standing for 3 times a week for about an hour a day. On the other hand, I understand the combination of standing and functional electrical stimulation (FES) activation of the legs will restore bone to some extent in the legs. This was what Christopher Reeve did. He stood at least an hour a day and also used FES to stimulate his legs to bicycle, and this not only increased the size of his muscles in his legs but also increased his bone density.

    • Cysts. I assume that you are talking about spinal cord cysts, something called syringomyelic cysts. These occur if there has been scarring between the spinal cord and the surrounding membranes, obstructing cerebrospinal fluid flow down the spinal cord. If a cyst occurs, removal of the scar tissues between the spinal cord and surrounding membranes, and possibly shunting the cyst, may eliminate it. I would not worry about this until it occurs. Cysts can be detected with MRI's. I recommend that people get an MRI at least every two years after spinal cord injury.

    • Muscle atrophy. Probably the best way to prevent atrophy is to not get rid of spasticity altogether. In your case, with a C6 injury, you should have spasticity in your legs. You are probably taking a drug called baclofen to reduce spasticity in the legs. I would titrate the dose of baclofen so that you still have muscle tone but of course not so much that you have difficulty transferring, sitting, etc. But, the goal should be to reduce the amount of baclofen that you take so that your muscles have some activity. I have always joked that spasticity is free muscle exercise.

    • Standing frames. I believe that everybody should have a standing frame if they cannot stand up on their own. There is a device called a Easyglider 6000 which costs about $6000. This allows you to stand and also do some stepping motions.

    • Pool. I believe that swimming is a good form of exercise for people with spinal cord injury. Because the water supports your weight, you can stand in the water if you put some weights with velcro straps around your ankles. You can go to shallower water to support more weight. It will also allow you to use your arms for exercise.

    • Pain. I am really sorry to hear that you have the burning pain in your chest and butt. This sounds like neuropathic pain. I am concerned that your doctor has not talked to you about them and what is causing them. You know what spasticity is... it is increased activity of the muscles below the injury site, resulting from the disconnection of your brain to the spinal cord below the injury site. Neuropathic pain is the flip side of the coin to spasticity. Instead of having increased muscle activity, you are feeling pain. The pain is probably coming from your spinal cord. There are several treatments that may reduce the pain but there is not adequate solution to neuropathic pain right now. You need to see a doctor who is experienced with neuropathic pain, who can try different medications to help reduce the pain. The following may help, in the following order:
    1. Amitryptaline (Elavil) 20 mg/day. This is a drug that is sometimes given for depression but the dose of 20 mg/day is lower than that usually used for depression. Several studies have reported that this may take the edge of the neuropathic pain, particularly the burning type that you describe. However, it does not usually eliminate the pain.
    2. Gabapentin (Neurontin). This is an anti-epileptic drug that was discovered several years ago to reduce neuropathic pain. Unfortunately, the effect wears off as you take the drug and people have to take higher and higher doses. So, typically, you may start out with 100 mg four times a day (a total of 400 mg/day) and keep going up to 1200 mg/day, 2400 mg/day, and even as high as 4800 mg/day.
    3. Tizanidine (Zanaflex). This is an alpha adrenergic agonist that is sometimes used for spasticity but may help reduce neuropathic pain in some patients. Usually it is not that effective if taken alone but it may work in combination with some of the above treatments.
    4. Dextromethorphan. This is the stuff that is in cough syrup for kids. I know that there is a clinical trial going on at Harvard where they are assessing the effects of gabapentin and dextromthrophan. I think that it is helping some people more than either drug alone.
    5. From this point on, the number of drugs and treatments become fewer and less effective. For some people, ketamine or morphine may help. There is a powerful opioid drug called fentanyl that can be given via a skin patch (called Duragesic). I have heard that spinal cord stimulation may help. Acupuncture helps some people. You should go to the Pain forum here and read what people are doing. As you can see, for some people, nothing really works.

    I am not an expert on reimbursement but many of the above treatments should be covered by Medicare/Medicaid or other insurance. It often takes a lot of work and much depends on the program in your state. I don't know the situation in Pennsylvania but you should contact others with spinal cord injury in the area and see how they go about getting coverage for the treatments.

    I hope that this is helpful. I am sure that many other people may have other advice or disagree with some of my recommendations.


    Quote Originally Posted by weepinglamb
    dear dr young,
    i'm a c-6 complete, 9 months post. i'm curious about how one would go about getting the special treatments, theprocedures to help prevent secondary conditions, such as [osteopouritis, cysts, more muscle wasting ect.
    and the special equipment, like pools, standing frames, ect. if your pt/ot/place doesnt have them. and how could i use them everyday if i don't own them?

    do you have to be independently wealthy or
    have super ins. not just medicare and medicade?

    i live in a small town 40 miles s. east of pgh.PAthere is ONE SCI DR in the pittsburgh area who accept my ins., i have lost faith and trust in him.
    my next appt. is monday.
    if you could please answer my 1st questions andd i'll give you a list of my symtems. please give me some idea how to talk to him, i would be ever grateful.

    ihave terrible neurological pain from my chest down it feels as though someone is burning my flesh with a blow torch while simutaniously cutting it up with razors.
    i always have excruciating pain in butt and back i'm assuming because i'm always on them.

    thank you i advance for your speddy reply,

  2. #222

    neuron damage

    Do neurons play a big part of, let's say, when a man is sexually aroused due to direct contact with his penis? Are more scientists focused on treating higher, more manageble injuries than low, sacral insults? I mean, why would scientists bother with sacral SCI, when as of now, they are too complicated to address, and emphasis is still focused on treating Cervical injuries? I'd imagine that a spinal AVM inside the cord would cause the most considerable damage, since it's virtually inside the gray matter, causing it to infarct. How would one fix a spinal cord, when looking at a cross section of the cord, the butterfly shape of the gray matter is obliterated on one side, virtually gone? This type of injjury just seems faaar too complicated and time consuming to address in this lifetime. Am I right?

  3. #223
    Senior Member MikeC's Avatar
    Join Date
    Dec 2003
    Tampa, FL
    Dr Young and damagedgoods - just wanted you to know that I'm reading your posts with interest. As always, I'm learning something about lower level injuries. In another post Dr Young mentioned the work being done in peripheral nerve grafts. I assume these are for the bowel and bladder and hopefully would help those of us with lower level injuries. Mike
    T12 Incomplete - Walking with Crutches, Injured in Oct 2003

  4. #224
    Quote Originally Posted by damagedgoods
    Do neurons play a big part of, let's say, when a man is sexually aroused due to direct contact with his penis? Are more scientists focused on treating higher, more manageble injuries than low, sacral insults? I mean, why would scientists bother with sacral SCI, when as of now, they are too complicated to address, and emphasis is still focused on treating Cervical injuries? I'd imagine that a spinal AVM inside the cord would cause the most considerable damage, since it's virtually inside the gray matter, causing it to infarct. How would one fix a spinal cord, when looking at a cross section of the cord, the butterfly shape of the gray matter is obliterated on one side, virtually gone? This type of injjury just seems faaar too complicated and time consuming to address in this lifetime. Am I right?
    Damaged, at Ohio State University, Jackie Bresnahan and Michael Beattie worked on understanding the circuitry of the spinal cord that controls the bowel, bladder, and sexual function. Astonishing as it may seem, relatively little was known about the neural systems that controlled these vital organs. The reasons are as follows:
    1. These functions are hard to observe in animals and most neurophysiological studies are done when the animal is asleep. So, much of our knowledge have come from making lesions and trying to see whether or not the function is impaired or absent. Sexual function is particularly hard to observe and study.
    2. Unlike most other functions of our body which involve well-defined somatic sensations and motor function (to striated muscles), these three functions involve smooth muscle or vasculature. For example, although many people think of the penis as a muscle, it is a vascular organ. Erections occur when the penis become engorged with blood, and it is mediated throught sympathetic and parasympathetic nervous system. Likewise, the bladder and rectum involves a combination of all three systems: sympathetic, parasympathetic, and somatic. The neurotransmitters are different and the control systems are also different.
    3. Most bladder, bowel, and sexual function are largely reflexive and are only under partial control by the brain.
    4. Certain sensory phenomena, such as orgasms, are not really well-understood at all. For example, there is some evidence to suggest that during the sexual act, many of the rules of spinal reflexes are actually suspended.

    Barry Komisaruk at Rugers Newark, for example, has been studying the neural mechanism of orgasm in animals and people with spinal cord injury. During vaginal stimulation, both animals and humans show a remarkable loss of sensitivity to pain stimuli. Barry recently compared the analgesia that occurs during vaginal stimulation to a huge dose of morphine. I must admit that I was skeptical when I first heard this and said that this must be due to "distraction" of the animal rather than true analgesia. But, Barry's laboratory showed that the both animals and humans were able to detect light touch during this period and to pay attention to such stimuli. During penile or vaginal stimulation, the pain system in the spinal cord is turned off. I thought that this is a pretty cool discovery. Barry and his students are working very hard trying to understand the neural mechanism behind this.

    By the way, I just found a recent article about this:

    Women with spinal-cord injuries rediscover sex, orgasms

    By Faye Flam
    The Philadelphia Inquirer
    Published November 23, 2005

    Despite a glut of literature available on how to have more and better orgasms, science is only beginning to unravel the mysteries of the nervous system. The experiences of some paralyzed women prove how little we know: Though seemingly cut off from all feeling below the waist, some have found they still had orgasms when they tried sex.

    More mysterious still, some could have orgasms when touched in a spot on the trunk or neck just above the region of injury.

    One Philadelphia-area woman who was paralyzed from the waist down was overwhelmed to learn she would never walk again. She was 30, and single. She assumed she would never enjoy sex again either, though at the time it was a lesser concern.

    Ten years later she fell in love. The couple tried sex. "I was fulfilled, I had orgasms," she said. "It was like I was reborn."

    Neurologist Barry Komisaruk of Rutgers University has been studying sex in paralyzed women for 10 years. Sometimes, the loss of sex was the most devastating and irreconcilable consequence of spinal-cord injury, he says, tearing apart relationships and families.

    "Doctors had told many of them their sex life was over because there's no pathway to the brain," Komisaruk said.

    A behavioral neuroscientist, he started out studying the nervous systems of rats. In female rats, the vaginal stimulation from sex caused a cascade of hormonal changes and kicked in a painkilling effect more powerful than morphine. There could be a blockbuster drug in this, he reasoned, if he could decode the neurobiology of female rat sex.

    He tried severing the three nerve pathways that connect the genitals to the brain--the pelvic, pudendal and hypogastric nerves. Oddly, the rats reacted to sexual stimulation as if their nerves were intact.

    He discovered a new channel for sexual pleasure--the vagus nerve--which threads from the brain through the lungs, intestines and other internal organs, bypassing the spinal cord.

    Could the vagus nerve also channel sexual sensations in humans? To find out, he decided to study women with complete spinal-cord injury.

    He and colleague Beverly Whipple brought women into their lab and interviewed them. In their stories, recorded in a 1997 academic paper, most had shut down sexually at first.

    "I have no feeling ... therefore I can't experience any type of sexual pleasure. ... I became I guess you'd call frigid ... ice woman ... ," one said.

    "I went back to teaching full time ... I drove my car ... everything was in its place except for my liking myself and my sexuality, and feeling like I was a woman again," reported another.

    In months or years, many of them began to experiment with sex, either to please a partner or because they were curious. Some discovered they could orgasm from sex, others found their nervous system had become reorganized, so they discovered new hypersensitive regions above their injury that could lead to orgasm.

    In the lab, the researchers investigated the women's sexual potential directly by giving them a device called a stimulator, which looks a little like a tampon. It's designed to create sensation in the vagina and cervix.

    "Some of the women who realized they still had sensation started crying," Komisaruk said. Until then, they had given up.

    Last year, his team began using magnetic resonance imaging to look at what was happening in their brains as women were having orgasms.

    He found in those with and without spinal injury, it lit up an area called the nucleus accumbens which is, not surprisingly, also activated by nicotine and cocaine.

    He also scanned women who had orgasms from being touched above the injury, and found that in the brain it looked like any other orgasm.

    Komisaruk and his colleagues are now trying to change patient care to put more emphasis on the possibility of sex after spinal-cord injury. They're also planning more brain scanning to better understand orgasm and compare the male and female versions.

    For a phenomenon that many experience several times a week--or even every day--there's still plenty of terra incognita to be explored.
    Last edited by Wise Young; 11-26-2005 at 06:00 PM.

  5. #225
    Senior Member kickinglamb's Avatar
    Join Date
    Nov 2005
    where no one has gone before...SW Pennsylvania
    dear dr. young,
    thanks for your quick reply. this is the 5th time i've tried to type this post, but because i havfe no use of my hands, i must use my page tuner to peck out the letters one at a time. and keep accidently hitting some damnnbutton that sends my hard earned typing somewhere into the great garbage dump in cyberspace.

    please let me try to answer your questions and clarify some of my comments. first the questions:

    1. i was diagnosed as a c-6 complete ASIA-A by the rehab dr. upon my arrival april 29th of this year. i was supposed to be reevaluated right before i left rehab, however tthis was never down, at least by the dr. the p/t and o/t therapists left their recommendations, they wanted me to stay an extra 2 weeks because they felt i was making extraordinary progress, but due to overwhelming homesickness and complete ignorance of how incredibly hard it would be at home, i decided against them and came home after 6 weeks.
    2. I HAD GOOD WRIST MOVEMENT WITH MY HAND AND FINGERS pointing down.[tenadesis?spelling] grasp but not thenother way. i'm not sure which
    is extension or flexion. right before i left r3ehab i had a flicker in my triceps.which excited me because i thought if i got them back it wouldn't be long before i got some movement in my hands.
    3. there was an extended period of time between inpatient rehab and outpatient p/t and o/t [from june 14th until mid november] because so many state programs to get attendant help and other pprograms like centers for independant living, which i still don't know if my advocate has followed up on that. then the pain came on and i could hardly sit in my chair let alohne make all the nescessary calls. there was also trouble with my equipment which is still unresolved. anyhoo, there were NO local rehabs who could help my sort of severe condition. finally i made the decision to take the 1 1/2 hour ride in the medicade van back to
    pittsburgh for my outpatient.
    4. despite my at home efforts to make my triceps stronger [i may have] i scored a 1 or 2 on my right tricep and a 1 on my left. still can't lift them against gravity. i said earlier i was never reevaluated by my dr., who by all this time and suffering, i've lost most of my trust and faith in, on a medical basis. and my live-i n fiancee of 12 years who is responsible for at least 80 percent of my care says he CAN feel alittle movement while doing my bowel program and he asks me to push.
    6. i learned alot in rehab, but more when i came home started reading, and got on the net.

    i guess i clarified alot in questions seegment, so if you wouldn't mind i'd like to ask you just a few more queestions.

    1. in your opinion, is the pittsburgh area a good place to find the drs, and treatments i need?
    2. how accurate is the ASIAscale, i've read all about it, and is it the standard.
    3. can a complete injury ever become incompletee?
    4. i certainly CAN'T afford 6 thousand dollars for a standing frame, what are my options?
    5. what is the difference between a FES and an E-STIM?
    6. are they safe to use at home unassissted
    7. eric and i have cut my baclofin very slowly from 120jgs a day to 70 still no leg movements.
    8.i get terrible spasms around my chest and stomach i caall ''band'' spasms because they feel like someone is twisting a belt or something around me tigfhter and tighter.
    9. i've had anxiety disorder for 20 years, that has gotten so bad post injury that i have more trouble breathing than just what my injury causes.
    my pcp gave me albuteral but it makes me nervous and gives me chest pains. i also take 3mgs of klonopin a day. any suggestions?

    sincerely and waiting anxiously for your reply,
    lori [not loori, typo,my bad]

  6. #226
    Dear Lori,

    Let me take each of your questions in turn.

    1. Where in Pittsburgh area are there good rehabilitation centers? Philadelphia is one of the major centers for spinal cord rehabilitation in the United States. Here are some of the centers with their links. I added some comments of what I know and perhaps others can add what they know.
    Bryn Mawr Rehab Hospital*- Malvern, Pennsylvania (PA)
    Chestnut Hill Rehabilitation Hospital - Glenside, Pennsylvania (PA)
    Good Shepherd Rehab - Allentown, Pennsylvania (PA)
    University of Pittsburgh Institute of Rehabilitation and Research. They use to be called the UPMC Rehabilitation in Squirrel Hill but recently moved to UPMC South Side. The School of Health and Rehabilitation Sciences trains most of the therapists for the region. Rory Cooper is the head of the rehabilitation engineering department with a strong role in developing technology for people with spinal cord injury.
    Magee Rehabilitation Hospital - Philadelphia, Pennsylvania (PA)
    MossRehab Hospital - Philadelphia, Pennsylvania (PA). This is an excellent spinal cord rehabilitation center.
    Regional Spinal Cord Injury Center of Delaware - Philadelphia, Pennsylvania (PA). This is the combination of Magee and Thomas Jefferson University Hospital. It is one of the 16 model system centers in the United States and has many experts.
    Philadelphia Shriners Hospital, Philadelphia (PA). This is probably the pediatric spinal cord injury center in the United States.

    2. ASIA scale. The ASIA classification system has four components:
    • A classification system: A, B, C, D, E (these are general categories indicating whether the injury is complete or incomplete and the degree of incompleteness.
    • Neurological level. This is defined as the highest "normal" level.
    • Motor score. Ten muscles and their scores (0-5) add up to a score of 100.
    • Pinprick score. Each dermatome is scored for pinprick sensation on a scale of 0-2 (0=none, 1=abnormal, 2=normal) and added.
    • Touch score. Each dermatome is scored for light touch sensation on a scale of 0-2 (0=none, 1=abnormal, 2=normal) and added.
    • FIM. Functional index. This is a series of questions concerning function.

    3. Can a complete injury become incomplete? Yes. About 5-17% of people with so-called "complete" injuries become "incomplete". Note that I am using the definition of incomplete that includes the recovery of anal sensation and function. A lot more people get back 2-3 levels of function back below their original injury level. Christopher Reeve for example was a "complete" spinal cord injury and he became "incomplete" with recovery of sensation in over 2/3 of his body and return of motor function down to C4 and several muscles in his hands and legs.

    4. What are options to a $6000 standing frame? Most standing frames are cheaper. They also should be coverable by medical insurance. They may also be cheaper second-hand. I have seen many people in China who do standing every day without a standing frame. You go up to a railing against the wall. Somebody lifts you up around the chest and slip a sheet under your butt. The ends of the sheet are inserted around the railing and one person pulls on the sheet to lift you to a standing position while another person stabilizes your knees. You stand facing the wall while a person massages the leg muscles. This is what they do everyday in the rehabilitation hospitals in China. They also use what is called a walking frame which is on wheels, with padded handles on top which people can rest their upper body weights on. They put elastic bands in figure-8 around the ankles to keep the foot flexed. They then walk with somebody using cloth strips to keep the knees straight. I will try to find some photographs or draw them for you.

    5. FES and E-stim are probably referring to the same thing. Functional electrical stimulation generally refers to muscle stimulation.

    6. Are they safe? You should use them initially under supervision but they are safe for home use.

    7. Baclofen. As you cut back to 70 mg, are you noticing more spasticity? Stopping baclofen should not restore voluntary activity but spasms and spasticity may increase.

    8. Spasms around your chest and stomach. Are the feelings associated with actual muscle spasms? These sound more like neuropathic pain. Neurontin (gabapentin) may help these.

    9. Anxiety. You may need something for anxiety (not on a regular basis) but for occasional use. Albuteral is a bronchodilator and not for anxiety. Klonipin is an alpha-adrenergic agonist that has anti-spastic effects. The fact that you were on 120 mg of baclofen and 3 mg klonipin suggests that you had or have serious spasticity. Are you taking anything for your bladder spasticity, i.e. ditropan?

    It is very good that you have trace triceps. You need to work on getting more back. Triceps make a lot of difference in allowing you to do independent transfers. If you are holding your hands out palm down, wrist flexion is downward and wrist extension is upward.

    Finally, if your doctor has never examined you, I suggest changing doctor.

    Keep asking questions.


  7. #227
    Senior Member
    Join Date
    May 2005
    Dear Dr. Young

    Can you please bring me in contact with doctors from kunming hospital? I think Dr. Zhu is neurosurgeon there to do transplantation. Can you find me her e-mail, fax and phone number as i could contact her and get her suggession for my kind of injury's treatment.
    I will be very thankful to you. God bless you.


  8. #228
    Jawaid, I will try to find the email address for you. I usually communicate with Dr. Zhu through my colleagues in Hong Kong who email her in Chinese or telephones her. Wise.

    Quote Originally Posted by Jawaid
    Dear Dr. Young

    Can you please bring me in contact with doctors from kunming hospital? I think Dr. Zhu is neurosurgeon there to do transplantation. Can you find me her e-mail, fax and phone number as i could contact her and get her suggession for my kind of injury's treatment.
    I will be very thankful to you. God bless you.


  9. #229

    Lightbulb Dr. Youngatheart

    Dr. Young-

    When you find the time, could you possibly give me some of the dirt on what's going on in Dr. Jessell's lab at Columbia. It seems promising in addressing the replacement of motoneurons. What do you think? Are you lightyears ahead of him, or just studying other aspects of SCI? Am I delusional in your honest opinion to think that there will be a time when I can stand and walk again in the near future? By the way, I suffered a major insult to the pial spinal cord due to a type 4 spinal AV fistula on the anterior spinal cord, just above the Conus. Venous congestion, not bleeding, caused death to neural tissue. As of now, years after the fact, I cannot walk or even stand out of my wheelchair. From the description of my SCI, can you guess my level? Due to my bladder going first, then paralysis ascending, I have no bowel control and/or bladder or sexual functioning. Just out of curiousity, would a penile implant be able to return me to the full length and width I had before my SCI? I realize that this is not your area of expertise, but you seem to have soo much experience with all aspects of SCI, that I had to ask. This is a dumb question, but I'll ask it anyway, are you so confident with the pace of research that you'd be willing to undergo a surgery that would cause SCI for a million bucks?

  10. #230
    Dr. Young,

    I have a T4 compression injury. I have alot of spasm and tone. I am on 100mg of baclofen a day, and I use a TENS daily, but after a while my tone and spasm still comes back, although not as bad as when I don't use the TENS machine. I was just wondering, if a regeneration therapy came to cure me, would this mean that my cord would regenerate quicker or slower because of the fact that I have these bad spasms and tone. Damagedgoods, in regards to your question to Dr.Young about the $1 million, I think that he would rather a cure for us come today than have $10 million. It would give him more happyness and satisfaction than money would. Am I right in stating this Dr.Young?

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