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If you have undergone an experimental SCI treatment, please help us!

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    If you have undergone an experimental SCI treatment, please help us!

    There's been several recommendations for someone to start a thread designated to tracking treatments. I know this is very informal but hopefully it will help several of us out there contemplating these treatments. If you have undergone a procedure please fill out the attachment below. Remember how many restless nights you had before deciding to go through with the procedure? Hopefully this will alleviate some of the stress we all encounter when deciding whether or not to even attempt to investigate these procedures. Please take the time to help us! If anyone has any recommendations to add to the survey please let me know. I e-mailed this to several patients I know who underwent these treatments as soon as they fill out the information I will post it here to share with everyone.
    Last edited by filbert2; 1 Aug 2005, 7:34 PM.
    I want it all, I want the fairytale~Pretty Woman

    #2
    If you cannot download the attachment above here it is --

    Tracking Treatments

    Treatment Information

    Treatment underwent --
    Date of treatment --
    Location of treatment --
    Cost of treatment --
    (was it out of pocket or did insurance cover) --
    Explanation of treatment(see bottom, if needed cut and paste) --

    Patient background information

    Age now --
    Male or female --
    Date of injury --
    Cause of injury --
    Level of injury --
    Complete or incomplete --
    Asia classification --

    Sensory, motor and bowel/ bladder function

    Please describe your sensory:
    before treatment --
    after treatment --
    Please describe your motor function:
    before treatment --
    after treatment --
    -- Please describe your bladder function:
    Did you have control?
    before treatment --
    after treatment --
    Could you feel when you had to void?
    before treatment --
    after treatment --
    How did you empty your bladder?
    before treatment --
    after treatment --
    -- Please describe your bowel function:
    before treatment --
    after treatment --


    Occupational and physical therapy information

    Wheelchair type:
    before treatment --
    after treatment --
    Assistive standing or walking device:
    before treatment --
    after treatment --
    Equipment needed for daily care/ ADL’s(feeding, mobility, grooming, dressing, etc…):
    before treatment --
    after treatment –
    Rehabilitation facility and length of time:
    before treatment --
    after treatment --
    Frequency of therapy(x’s per week,hrs. per day):
    before treatment --
    after treatment --
    Limitations in Range of motion:
    before treatment --
    after treatment --
    Overview of the exercises being done in therapy:
    before treatment --
    after treatment –
    Transfer (stand and pivit, sliding board, etc…….):
    before treatment --
    after treatment --

    Miscellaneous
    Tone/spasms(please explain where):
    before treatment --
    after treatment --
    Medications(bladder, spasm, etc….):
    before treatment --
    after treatment --
    Frequency of Urinary tract infections:
    before treatment --
    after treatment --
    Bed sores:
    before treatment --
    after treatment --
    Autonomic Dysreflexia:
    before treatment --
    after treatment --
    Ventilator dependent:
    before treatment --
    after treatment --


    Optional information
    e-Mail address --
    Phone number --
    Please give an overview of your treatment experience!
     Would you do it again?
     Are you happy with the results?
     Was it worth it?
     Any insight?
     Over all return?
     Emotional status?


    Thank you so much for taking the time to fill this out. It is much appreciated.
    Shannon Filbert and Your friends from Care Cure!


    Portugal: Dr. Carlos Lima implants whole olfactory tissue obtained from the patient (i.e., no immunological rejection) back into the injury site. Lima believes that more than one cell type is needed to maximize regeneration, including not only OECs but also olfactory neurons in different developmental stages, and precursor stem cells. To date, he has treated over 40 patients, most of whom have accrued benefit. An adult stem-cell advocate, Lima believes "Mother Nature made embryonic stem cells to proliferate and adult stem cells to replace and repair."

    China: In contrast, Dr. Hongyun Huang transplants OECs isolated from fetal olfactory bulbs. The isolated OECs are grown and expanded in culture, and then about a million are injected around the injury site exposed through a limited laminectomy. Huang has transplanted OECs into hundreds of patients, often many years after injury, and there is a long waiting list for his procedures. Because many patients regain some function soon after surgery, improvement is not due to relatively slow neuronal regeneration or remyelination. Huang speculates that OECs wakeup quiescent neurons that still transverse the injury site, perhaps by altering the injury site’s environment through secreting growth factors and producing adhesion and matrix molecules.

    Australia: In a phase-1 clinical trial, Dr. Alan MacKay-Sim’s team has implanted autologous OECs back into the patient’s injured cord. The OECs were isolated from the patient’s nasal tissue and amplified in culture to yield up to 20-million cells over six weeks. These cells were injected into 40 sites surrounding the injury site. The progress of three subjects who received OEC transplants is being compared to three individuals who did not have the transplants. These comparative assessments are blinded, i.e., progress-monitoring assessors do not know which patients had the procedure.

    Brazil: Dr. Tarcisio Barros et al. have infused bone-marrow-derived stem cells into the spinal artery closest to the injury site in 32 subjects with clinically complete injuries (2-12 years post injury). The stems cells were isolated from the patient’s own blood after treatment with a drug that stimulates the bone-marrow production of these cells and, in turn, their spillover into the blood. After one-year follow-up, 18 patients have shown improvement in electrophysiological neuronal conduction, which, in some cases, has been translated into functional improvement.

    Russia (Moscow): Dr. Andrey Bryukhovetskiy has transplanted embryonic and autologous (i.e., from the patient) adult stem cells into patients with chronic SCI. From extensive experience using both cell types, Bryukhovetskiy has concluded that autologous stem cells are much more effective than the embryonic stem cells in restoring function. With his most recent work, either olfactory or hematopoietic-derived, autologous stem cells are implanted within a gel-polymer matrix for patients who need reconstructive surgeries. In patients who did not need such surgeries, hematopoietic stem cells are transfused intrathecally into the spinal fluid. Although results are preliminary, some of Bryukhovetskiy’s patients (average 5-years post injury) have had dramatic functional improvements in relatively short time periods, many improving two grades using the commonly used ASIA classification scale.

    Russia (Novosibirsk): Dr. Samuil Rabinovich’s team has transplanted various combinations of fetal OECs, cells from nervous and hematopoietic tissues, and spinal cord fragments into the injury site of 15 patients. Ranging in age from 18 to 52, patients were one-month to six years post injury and had complete, Frankel grade-A injuries (Frankel classification evolved into today’s ASIA scale). Each patient received one to four cell transplantations at various times, and was followed at least 1.5 years. Improvements were noted in 11 of 15 patients. Six improved to grade-C, incomplete level, and five were able to walk with crutches. In general, patients who had the transplantations sooner after injury accrued the most benefit.

    South Korea: Dr. Song Chang-Hoon et al. injected stems cells isolated from umbilical cord blood into a 37-year old woman’s injury site. Injured for 19 years, she regained significant function relatively soon after surgery, including some walker-assisted ambulation. Chang-Hoon believes that injecting the cells directly into the spinal cord is more effective than infusing them into spinal fluid surrounding the cord. Unlike embryonic stem-cells, umbilical stem-cells are not controversial. They also have less rejection potential than most other donor tissue except embryonic tissue; i.e., some, but not strict, matching between donor and recipient is needed.

    Czech Republic: Dr. Eva Sykova and colleagues have harvested autologous, bone-marrow stem cells from the iliac bone (i.e., hip) of 17 patients. Within five hours of harvesting, cells were re-introduced into the patient through the vertebral artery (7 cases), intravenously (10 cases), or underneath the cord’s dura membrane (1 case). Eight and nine patients were treated 11-30 days and 2-17 ½ months after injury, respectively; one patient was treated twice. Four had improved ASIA scores, seven had enhanced neuronal conduction, and the lesions of three were reduced in size as measured by MRI. In general, more benefits accrued when the treatment was done closer to the time of injury. Sykova is now experimenting with stem cells incorporated within a gel matrix, and treating patients with bone-marrow-derived stem cells that have spilled over into blood after drug stimulation.
    I want it all, I want the fairytale~Pretty Woman

    Comment


      #3
      For anybody that has had Dr. Huang's procedure, you should be able to request the ASIA sensory and motor scores he took before and after surgery. I have my table setup at http://www.chris-olson.com/huang.htm and there are links below it to show the actual documents as they were filled out (I scanned them).

      Skeptics may think the documents could be biased, but, at least in my case, they seemed to agree with examinations done by doctors/therapists before and after I went.

      Comment


        #4
        Great idea and good work Shannon, I'll be working on mine.
        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."

        Comment


          #5
          Originally posted by Leo
          Great idea and good work Shannon, I'll be working on mine.
          Thank you Leo!
          Keep them coming!
          I want it all, I want the fairytale~Pretty Woman

          Comment


            #6
            I had surgery on 07/06/05

            I had stem cell surgery in Monterrey, Mexico on 07/06/05. The Dr. used stem cell derived from umbilical cord blood. Every month I have to go back to my Dr. and get another injection. My progress after the surgery is as follows...1) I can pedal a bike on my own for two minutes, which I could not do on my own before. 2) I also can feel a pin prick two inches below my injury level which I could not feel before. 3) I can also have a bowel movement on my own w/ out any help, I cant feel it but I can do it my own own with a enema or stimulation. I learned about my Dr. here in carecure by doing a search. If anyone has any questions on my progress please feel free to email me (stephenglez@msn.com) and I will be happy to keep you posted.
            Stephen Glez.

            Comment


              #7
              Originally posted by filbert2
              Keep them coming!
              Filbert. Thank you very much for your good work and engagement here. I just have one comment; could it be a good idea in the narratives or the reports to put the information in the “optional information” like; would you do it again? And; Are you happy with the results? on the top of the narratives/reports. - Because in the future I believe there will be many reports here. Leif

              Comment


                #8
                Originally posted by Leif
                Filbert. Thank you very much for your good work and engagement here. I just have one comment; could it be a good idea in the narratives or the reports to put the information in the “optional information” like; would you do it again? And; Are you happy with the results? on the top of the narratives/reports. - Because in the future I believe there will be many reports here. Leif
                I will change it now, thanks for the advice.
                I want it all, I want the fairytale~Pretty Woman

                Comment


                  #9
                  Not certian

                  Are you planning on including individuals who took part in clinical trials i.e. Proneuron? to avoid any trail confidentially conflict it would be my recommendation to wait at least a year post

                  Comment


                    #10
                    Hi Shannon, I think we should have on the survey the date person completed the survey. to give people time frame

                    keep rockin
                    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."

                    Comment


                      #11
                      Originally posted by Leo
                      Hi Shannon, I think we should have on the survey the date person completed the survey. to give people time frame

                      keep rockin
                      good idea I'll change it now! I also have a few more on the way! I will post them later when I receive them.
                      I want it all, I want the fairytale~Pretty Woman

                      Comment


                        #12
                        Excellent idea.

                        Shannon,

                        Thank you very much for helping out in this area as it needs to be addressed and do know that you are helping many people in more ways than you realize, brilliant.. I will fill mine out in regards to Dr. Lima and ask others to do the same..
                        Godspeed~
                        Susan
                        www.sciwalker.com

                        Comment


                          #13
                          Originally posted by Susan Fajt
                          Shannon,

                          Thank you very much for helping out in this area as it needs to be addressed and do know that you are helping many people in more ways than you realize, brilliant.. I will fill mine out in regards to Dr. Lima and ask others to do the same..
                          Thank you Susan! I look forward to receiving your completed questionnaire. It will help everyone out immensely!
                          Please keep them coming everyone
                          Last edited by filbert2; 23 Aug 2005, 4:31 PM.
                          I want it all, I want the fairytale~Pretty Woman

                          Comment


                            #14
                            filling in and optimizing the questionnaire

                            Originally posted by filbert2
                            Thank you Susan! I look forward to receiving your completed questionnaire. It will help everyone out immensely!
                            Please keep them coming everyone
                            - Filbert2 thanks for your initiative.
                            1- May I suggest to put a date in the name of the doc[both template and filled-in doc]. Then it’s easier to follow-up the updates. I guess quite some modifications will take place with time.
                            2- Is there any possibility for you to discuss with the moderator of this forum, or maybe with Jeff Weeks, so that this thread and the questionnaire remains always on top [like the 10 frequently asked questions from Dr Young]. I think people should see it immediately, as soon as they enter the cure forum ! You might get more answers then.
                            3- What about including the ASIA rating sheet to it [the one which was, I believe, created by Dr Young] .In one page, you then see everything, concerning both sensation and muscle functions. This one should be filled in and validated by a doctor. The Asia rating result itself is always difficult to interpret,but the details of the rating seem pretty straight forward and will be recognized by both doctors and patients. The other data could be filled in by the patient itself, on a more regular basis.
                            4- Once we have a 'final' or validated version of the questionnaire, I am willing to translate it into French [something similar but shorter was created on the Alarme forum by Tdelrieu]. We will strive towards using the same questionnaire there. I can also find some help for working out a Dutch and a Spanish translation. We have to be quick now, because some patients are back from surgery and should be able to give input soon ! But the comments I had so far it that the questionnaire might have to be simplified a bit. So I'l be waiting for the validation and then start the translation , to avoid double work.


                            To Leo, Susan and to every patients who started filling in the questionnaire.

                            Thanks for you input, and please do not hesitate to communicate any suggestion for improvement, if needed. The questionnaire should be easy to fill in and clear. Because the intention is obviously not to fill it in only once.
                            www.endparalysis.org!

                            Comment


                              #15
                              Updated version of tracking treatment questionnaire

                              I added a few questions and also followed everyone's advice by putting the date the person fills out the questionnaire and moved some stuff to the top. I know you are all out there please fill it out!
                              I want it all, I want the fairytale~Pretty Woman

                              Comment

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