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

  1. #131
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    update?

    Dr. Young,

    I am grateful for everything you are doing for our community, but when, when can we reasonably hope for any concrete - if only partial- solutions to our problems? I hear of a lot of good results from laboratories and research centers, but I also read from a lot of desperate people - like me at times- who are in pain and isolated in their homes, some bedridden. When my surgeon tells me there won't be any breakthrough, not in the coming ten years, I am tempted to say he is wrong; but at the same time, unfortunately, I don't know of any treatment that can alleviate my pain or improve my condition. I don't think I could live without hope- and I know the most negative people on this site only want to be reassured- but are we all being unreasonable at this point in time. There will be a cure, but will it happen in our lifetimes?

    gretchen 1

  2. #132
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    I recently went to my general practitioner and he told me to face reality that we are just keeping me in shape, so they do not break any bones while transferring, but I will never walk again in this lifetime.. Go figure only 38 years old 8 years in a wheelchair C-3 quadriplegic.. And yes I got depressed, made appointment to see one of the best spinal cord doctors in New Jersey.. He told me if I told you three years ago there was going to be a computer small enough to fit in your pocket would I believe him?? He said I won't be walking in six months, but he did not rule out that I would never walk again.. If there is anything ever proven I would be on the next airplane.. But unfortunately we have to sit and wait till the time comes.. Hopefully soon.. Personally burned out myself financially secure financially does not by you happiness..

  3. #133
    Senior Member Leo's Avatar
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    Hi Kieth,

    Your right things are happening so fast, and it has amazed the heck out of me the info i've learned on CC and relayed to to people who you would think are in the know, and they say get out of here really..tell me more.

    We have much more to do than just sit and wait.

    Things don't happen, we make them happen.

    keep rockin...

    "All you have to decide is what to do with the time that is given you."
    Gandolf the Gray

  4. #134
    Senior Member J2Extreme's Avatar
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    Im new to this site, but already think its awsome.
    Thanks for this info, some things i new and some i did not.
    I am 25 years old and have been injured C5 for 5.5 years after a motorcycle accident. I belive a sci cure will come by or before 2010. thank goodness there are reaserchers like you. keep up the good work.

    J2

  5. #135
    HiDr Young,
    Im new to this site im 1 year 2months injury and this is my second post.

    Question: You say that Olfactory ensheathing glial (OEG)cells are giving 4-8 levels Sensory and 1-2 levels Motor function. I am T12 does this mean that i have a chance of gaining all function cause I do know that the spinal cord ends at L1 and it is only roots after that. Surly this surgery is enough for me to be able to regain major function that my injury is so low down.

    This Wheelchair is a pain in the butt

  6. #136
    EDD, my advice is for people to wait. Yes, I think that the OEG transplants are producing some sensory improvement for some people but it is not a cure. In the coming years, there will be more and better therapies, including combination therapies that should restore much more function. I know that waiting is hard. Wise.

    Originally posted by EDD:

    HiDr Young,
    Im new to this site im 1 year 2months injury and this is my second post.

    Question: You say that Olfactory ensheathing glial (OEG)cells are giving 4-8 levels Sensory and 1-2 levels Motor function. I am T12 does this mean that i have a chance of gaining all function cause I do know that the spinal cord ends at L1 and it is only roots after that. Surly this surgery is enough for me to be able to regain major function that my injury is so low down.

    This Wheelchair is a pain in the butt

  7. #137
    HiWise
    I know this is probably not the right place to ask BUT
    I am a grandfather with a 9 week old grandson that has just been diagnosed with Cerebrel Palsy. I am trying to look at all options that may assist him to have a full and productive life. I have read about Dr Hongyuns work in China with Spinal injuries. Can you tell me whether this same techniques are available for Cerebrel Palsy, if not do you know of any other good work being done to assist people with Cerebrel Palsy.
    Thanks Ross

  8. #138
    Rangi100, I am sorry that your grandson has cerebral palsy. Olfactory ensheathing glia are special cells that appear to stimulate regeneration and has been extensively investigated for improving regeneration in spinal cord injury. I am not aware of any evidence or rationale for use of olfactory ensheathing glia for cerebral palsy. Cerebral palsy is a complex condition where there has been damage or failure to develop of parts of the central nervous system. The term cerebral palsy implies damage to the brain while the terms spina bifida, spinal meningomyelocoele relate to the defects on development of the spinal cord.

    Most research on cerebral palsy focus on preventing the condition. So, for example, there are many studies of conditions that may lead to cerebral palsy and drugs that may reduce the incidence of the condition. However, there is some studies of constraint-induced movement therapy in young children with cerebral palsy (Eliasson, et al., 2005; Gordon, et al., 2005), various therapies to address spasticity associated with cerebral palsy (Chin, et al., 2005; Satila, et al., 2005), orthopedic procedures and orthoses that improve gait (Saraph, et al., 2005; Terjesen, et al., 2005).

    From my reading of magazine articles, I remember that Sweden has quite advanced approaches towards physical therapy and training of children with cerebral palsy. Likewise, I think that they use an orthosis called second skin (a polyester lycra device that provides support and resistance to certain movements and may help improve motor control and reduce spasticity). I am not aware of any stem cell or other cell-based therapies that have been tried in people with cerebral palsy. We do have a number of members of this site that have cerebral palsy.

    What kind of cerebral palsy does your grandson have? Is there spontaneous movement, i.e. athetoid? In my opinion, it is very important not to neglect language and intellectual development. Because they are physically more apparent, too much attention is paid to the motor control and spasticity. Many children with cerebral palsy are intelligent and do well.

    Wise.

    References Cited

    Eliasson AC, Krumlinde-sundholm L, Shaw K and Wang C (2005). Effects of constraint-induced movement therapy in young children with hemiplegic cerebral palsy: an adapted model. Dev Med Child Neurol 47: 266-75. The aim of this study was to evaluate the effects of a modified version of constraint-induced (CI) movement therapy on bimanual hand-use in children with hemiplegic cerebral palsy (CP; age range 18 mo to 4 y) and to make a comparison with conventional paediatric treatment. Twenty-one children (13 females, eight males) completed the CI therapy programme and 20 children (12 males, eight females) served as a control group. Children in the CI therapy group were expected to wear a restraint glove for 2 hours each day over a period of 2 months. The training was based on principles of motor learning used in play and in motivational settings. To evaluate the effect of treatment, the Assisting Hand Assessment (AHA) was used. Assessments took place on three occasions: at onset, after 2 months, and 6 months after the first assessment. A significant interaction was found between group and AHA measure (ANOVA, F(2,74) = 5.64, p = 0.005). The children who received CI therapy improved their ability to use their hemiplegic hand significantly more than the children in the control group after 2 months, i.e. after treatment. Effect size was high after treatment and remained medium at 6 months. As the treatment was tailored to each child's capacity and interests, little frustration was experienced by the children. Neuropediatric Research Unit Q2:07, Astrid Lindgren Children's Hospital, SE-171 76 Stockholm, Sweden. ann-christin.eliasson@kbh.ki.se http://www.ncbi.nlm.nih.gov/entrez/q..._uids=15832550


    Chin TY, Nattrass GR, Selber P and Graham HK (2005). Accuracy of Intramuscular Injection of Botulinum Toxin A in Juvenile Cerebral Palsy: A Comparison Between Manual Needle Placement and Placement Guided by Electrical Stimulation. J Pediatr Orthop 25: 286-291. Most clinicians who perform botulinum toxin A injections for children with cerebral palsy do so using the "free-hand" or manual technique without using radiologic or electrophysiologic guidance to aid needle placement. The objective of this study was to investigate the accuracy of manual needle placement compared with needle placement guided by electrical stimulation. A total of 1,372 separate injections for upper and lower limb spasticity were evaluated in 226 children with cerebral palsy. The accuracy of manual needle placement compared with electrical stimulation was acceptable only for gastroc-soleus (>75%); it was unacceptable for the hip adductors (67%), medial hamstrings (46%), tibialis posterior (11%), biceps brachii (62%), and forearm and hand muscles (13% to 35%). The authors recommend using electrical stimulation or other guidance techniques to aid accurate needle placement in all muscles except the gastroc-soleus. Further study is needed to determine whether more accurate injecting will lead to better functional outcomes and more efficient use of botulinum toxin A. From *Department of Orthopaedics, Royal Children's Hospital, Melbourne, Australia; daggerUniversity of Melbourne, Melbourne, Australia; and double daggerHugh Williamson Gait Analysis Laboratory, Royal Children's Hospital, Melbourne, Australia. http://www.ncbi.nlm.nih.gov/entrez/q..._uids=15832139


    Satila H, Iisalo T, Pietikainen T, Seppanen RL, Salo M, Koivikko M, Autti-Ramo I and Haataja R (2005). Botulinum Toxin Treatment of Spastic Equinus in Cerebral Palsy: A Randomized Trial Comparing Two Injection Sites. Am J Phys Med Rehabil 84: 355-365. Satila H, Iisalo T, Pietikainen T, Seppanen RL, Salo M, Koivikko M, Autti-Ramo I, Haataja R: Botulinum toxin treatment of spastic equinus in cerebral palsy: A randomized trial comparing two injection sites. Am J Phys Med Rehabil 2005;84:355-365. OBJECTIVE:: To explore the clinical relevance of injection site by comparing two different injection techniques in children with cerebral palsy who have spastic equinus gait. DESIGN:: A total of 19 children (13 boys, 6 girls; range, 1 yr 6 mos to 7 yrs; nine hemiplegics, eight diplegics, two quadriplegics; levels I to IV with the Gross Motor Function Classification System) participated in the study. The children were randomized into two groups: the proximal group received a botulinum toxin A injection into the proximal part of both heads of the gastrocnemius, and the distal group received a botulinum toxin A injection into the mid-belly of the muscle bulks. A single-point injection of BOTOX, 3 units/kg per site, was used. Assessments of active and passive range of motion, dynamic muscle length (modified Tardieu scale), calf tone (modified Ashworth scale), and video gait analysis (Observational Gait Scale) were performed before treatment and 3, 8, and 16 wks posttreatment. RESULTS:: Active and passive dorsiflexion and calf tone in both groups and Observational Gait Scale total scores in the distal group improved at all time points. The median change from baseline values in Observational Gait Scale initial foot contact and total scores at 8 wks showed a significant difference favoring the distal group, but the clinical relevance remained tenuous. CONCLUSIONS:: Using the methods described, no major changes in main outcome measures were associated with changing the injection site. From the Departments of Paediatric Neurology (HS, MK) and Physiatry (TI, TP, RLS), Tampere University Hospital, Tampere, Finland; the Departments of Paediatric Neurology (HS) and Physiatry (MS), Central Hospital of Kanta-Hame, Hameenlinna, Finland; the Paediatric Neurology Unit, Hospital for Children and Adolescents, Helsinki, Finland (IAR); the Finnish Office for Health Care Technology Assessment, STAKES, Helsinki, Finland (IAR); and the School of Public Health, University of Tampere, Tampere, Finland (RH). http://www.ncbi.nlm.nih.gov/entrez/q..._uids=15829782

    Saraph V, Zwick EB, Auner C, Schneider F, Steinwender G and Linhart W (2005). Gait improvement surgery in diplegic children: how long do the improvements last? J Pediatr Orthop 25: 263-7. Gait improvement surgery in ambulatory children with cerebral palsy performed as single-event multilevel surgery is today a well-established modality of treatment, but follow-up studies are lacking. Preoperative and follow-up gait analysis data of 32 diplegic children who underwent single-event multilevel surgery for gait improvement between 1995 and 1998 were evaluated retrospectively. Relevant sagittal plane kinematic parameters of the hip, knee, and ankle joint and time-distance parameters were considered for outcome measures in this study. Postoperative gait analysis was performed three times in all the cases: after discontinuation of the dynamic AFOs (mean 1.0 +/- 0.3 years), after discontinuation of the night splints (mean 2.3 +/- 0.7 years), and at least 1.5 years after discontinuation of physiotherapy and splints (mean 4.4 +/- 1.1 years). The aim of the study was to ascertain whether the improvements in gait function were maintained over these examinations. The authors found that gait function continued to change over 1, 2, and 3 years of follow-up. A general decrease in gait function was measurable in this collective between the first postoperative and the second postoperative evaluations. The results indicate that evaluation of gait improvement surgery in cerebral palsy performed at a minimum of 3 years after surgery would give the most predictive outcome of treatment. From the Pediatric Orthopedic Unit, Department of Pediatric Surgery, Medical University of Graz, Graz, Austria. http://www.ncbi.nlm.nih.gov/entrez/q..._uids=15832134


    Gordon AM, Charles J and Wolf SL (2005). Methods of constraint-induced movement therapy for children with hemiplegic cerebral palsy: development of a child-friendly intervention for improving upper-extremity function. Arch Phys Med Rehabil 86: 837-44. We delineate the methodology for constraint-induced movement therapy (CIMT) modified for children with hemiplegic cerebral palsy (CP) and describe important considerations that need to be made when testing this intervention in children. The resulting intervention evolved from piloting and testing it with 38 children with hemiplegic CP who were between the ages of 4 and 14 years. Thirty-seven successfully completed the treatment protocol. The intervention retains the 2 major elements of the adult CIMT (repetitive practice, shaping) and was constructed to be as child-friendly as possible. It involves restraining the noninvolved extremity with a sling and having the child engage in unimanual activities with the involved extremity 6 hours a day for 10 days (60 h). Specific activities are selected by considering joint movements with pronounced deficits and improvement of which interventionists believe have greatest potential. The activities are chosen to elicit repetitive practice and shaping. The intervention is conducted in groups of 2 to 3 children to provide social interaction, modeling, and encouragement. Each child is assigned to an interventionist to maintain at least a 1:1 ratio. CIMT can be modified to be child-friendly while maintaining all practice elements of the adult CIMT. The modified therapy is tolerated by most children. Further modifications will likely be required to hone in on the specific components of the intervention that are most effective before applying them to children who are most likely to benefit. Department of Biobehavioral Sciences, Teachers College, Columbia University, New York, NY 10027, USA. ag275@columbia.edu http://www.ncbi.nlm.nih.gov/entrez/q..._uids=15827942


    Terjesen T, Lie GD, Hyldmo AA and Knaus A (2005). Adductor tenotomy in spastic cerebral palsy. A long-term follow-up study of 78 patients. Acta Orthop Scand 76: 128-37. BACKGROUND: There is a risk of hip dislocation in children with spastic cerebral palsy. We evaluated the prophylactic effect of adductor tenotomy in patients with long-term follow-up. PATIENTS AND METHODS: Our material comprised 78 patients (46 boys) with a mean age of 8 (2-17) years who underwent adductor tenotomy during the period 1986-1991. 40 patients had spastic diplegia and 38 had quadriplegia. For patients who had further hip surgery, follow-up was until the next hip operation. Those who had not undergone further surgery were invited to a follow-up examination. The migration percentage (MP) was measured on the preoperative and follow-up radiographs. The radiographic result was termed good if MP at follow-up was reduced or had increased less than 10%. The follow-up period was 10 (1.6-16) years, with a mean of 6 years for patients with later hip surgery and 13 years without such surgery. RESULTS: The clinical outcome was good in 51 cases, poor in 12, and uncertain in 15. The radiographic result was good in 39 of the 53 patients with radiographs available both preoperatively and at follow-up. The patients with good radiographic results had lower preoperative MP than those with poor results (MP 34% versus 49%) and lower preoperative acetabular index. The mean increase in MP (worst hip in each patient) was 1.9% per year, which is considerably less than that in nonoperated patients. Further hip surgery was necessary in 27 patients, because of increasing MP in 14 cases and for clinical reasons in 13. INTERPRETATION: Adductor tenotomy reduced the trend towards lateral displacement of the hip joints. The operation had a favorable outcome in approximately two-thirds of the patients. The operation should be performed before the MP reaches 50%. Department of Orthopedics, Rikshospitalet University Hospital, NO-0027 Oslo, Norway. terje.terjesen@rikshopitalet.no http://www.ncbi.nlm.nih.gov/entrez/q..._uids=15788321

  9. #139
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    Dr. Young
    can you tell me what happens with spasticity and spasm after treatment when people get some movements back.

  10. #140
    Vlad, I don't really know. From the people that I have seen, it doesn't seem to make that much difference for spasticity and spasms. Wise.

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