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    Very interesting..

    Quote:
    6.6-Do you plan to make any official, scientifically recognized , medical publication ? If so, in which journal ? When do you plan the publication to take place ?
    Yes, a publication is in progress. Target journal is Lancet. No target date can be given. Once more, our first priority is to get results.
    __________________________________________________ ___________

    The publication should be released in September of 2005, this is what i have been informed, i too am looking into it further as it sounds to be very promising. However, the cost is close to 16K for this procedure if i am correct.
    Godspeed~
    Susan
    www.sciwalker.com

    Comment


      Susan, thanks. I changed it from €15,000 to €16,000. Wise.

      Comment


        Again Hi All,
        All of you are very welcome to our city Ankara - Turkiye (Capital City). I wish I could help all of you.
        We are waiting for the progress same as you. If I hear something do not worry I will share this with you.
        See you all soon...

        Comment


          Dr. Young,

          You mentioned ,among possible risks, an ascent of lesion. How could that happen?

          You also wrote that an ascent of lesion was possible for people with thoracic injury, do you mean that a paraplegic could become quadraplegic as a result of a medical procedure, or simply of long-term changes?
          Last edited by gretchen; 28 Jul 2005, 9:16 AM.
          gretchen 1

          Comment


            Originally posted by gretchen
            Dr. Young,

            You mentioned ,among possible risks, an ascent of lesion. How could that happen?

            You also wrote that an ascent of lesion was possible for people with thoracic injury, do you mean that a paraplegic could become quadraplegic as a result of a medical procedure, or simply of long-term changes?
            Gretchen,

            Any time that one does surgery on the spinal cord, there is the possibility that there will be damage to the spinal cord. There may be hemorrhage, infection, expansion of the cells into a tumor, or worse possibilities that may occur with transplantation of cells into the spinal cord. There may be inflammation, as a result of the transplant or surgery. All these can result in an ascent of the lesion. Of course, if it ascends far enough, a paraplegic could become quadriplegic.

            Wise.

            Comment


              Great summary Wise. If you would like to see this procedure, clear your schedule mid/end Sept. and I'll see you in Turkey.

              Comment


                Dr. Young,

                I understand there is always a risk Do you know if Dr. Huang has reported any such case (ascent of lesion) out of the hundreds (?) of surgeries he has performed?
                gretchen 1

                Comment


                  Originally posted by gretchen
                  Dr. Young,

                  I understand there is always a risk Do you know if Dr. Huang has reported any such case (ascent of lesion) out of the hundreds (?) of surgeries he has performed?
                  To my knowledge, he has not (at least not for spinal cord injury) although he has had several deaths in his ALS series. However, you must remember that procedures are different. Dr. Huang, for example, does only two microinjections into the spinal cord above and below the injury site (avoiding the injury site itself...) whereas it seems that they are injecting 30-40 microinjections in these cases. Dr. Huang is also now doing two small "keyhole laminectomies" rather than one big laminectomy exposing 3 or more segments (which is did for the first 170 or so cases that he did).

                  Wise.

                  Comment


                    Originally posted by Wise Young
                    Susan, thanks. I changed it from €15,000 to €16,000. Wise.

                    Wise, thank you as i did not read through the entire post... However in terms of cost i know of a person who is scheduled to have this procedure done and it will cost him 18,000K due to the size of his lesion, it is much longer/larger than others.

                    Also, has anyone spoken directly to the patients themselves to here what they have to say. I realize there is a language barier, just wondering...

                    I will read further into this when i have more time, i have been extremly busy searching... SIGH...
                    Last edited by Susan Fajt; 29 Jul 2005, 1:34 AM. Reason: more
                    Godspeed~
                    Susan
                    www.sciwalker.com

                    Comment


                      hi there ,

                      i was scheduled to do the procedure in august , but dr.kleinbloesem advised me to wait till the end of the year because my spinal cord appeared transected . .

                      Dr Young , is it possible to send you my mri's in a PM so you can see it . .

                      because the doctor told me that if i want i could do it now but he doesn't promise much , and i may need to do phase 3 later this year ..

                      please let me know Dr Young so i send you the mri's . .

                      Comment


                        Dear Wise,

                        Thank you so much for your comments. It was essential for us, patients, to know your viewpoints and concerns. Most of your questions have been forwarded to Dr K. already. Should he not reply by writing, I will also include them in my interview next week and will anyway make a comprehensive report of all feedback collected. An even better way would be that you also be able to discuss those points directly with Dr K. As already mentioned in my previous summary, he welcomes you for a visit whenever you wish.
                        In the meantime, please allow me to ask a few more questions or give feedback to your comments, to avoid any misunderstanding.
                        - Ascent of lesion : would it be possible to express which specific process could lead to such an ascent ? Which aspects of Dr K. approach let you think that this is a significant risk ? Or should we consider this risk as very minor just as with Dr Huang’s procedure ?
                        - Tumor : that question is recurrent within the sci community. Do you really assess this as a significant risk ? It is often stated that, in the case of adult’s stemcells transplantation, tumor risk is limited to ‘normal’ [ie not more than before cells transplantation] . Is there any experience denying that statement, especially in the case of bonemarrow stem cells and sci ?
                        - Cost of the procedure : let me recap : so far the cost was 15 000 Euro including transportation from the NL. Apparently 16 000Euro is applicable to procedure including transportation from USA.
                        - Patients ‘ progress : 2 patients able to walk. I should have been a bit more specific in my report. What Dr K said is that those 2 patients were able to walk ‘a few steps’. The nuance might be of importance. As regards the Patient 4, the one whose spinal cord is assumed to be cut, at the date of the first reporting [June 25th, 2005], there was no progress at all for him [also no regression]. Anyway, we will have a new update of those 4 patients + 5 other patients next week.
                        I hope to be able to get a feedback to the remaining open questions you raised.
                        www.endparalysis.org!

                        Comment


                          Originally posted by mka
                          Hi All,
                          But I must said that Ankara University Hospital and Dr.Deda are not just somebody and an institute. The informations that all of us share is 99% true.
                          Sorry for poor English...
                          Best Regards....
                          Dear MKA,
                          It’s great to have you on board ! thanks for your openness and you very valuable input. As Dr K. has indicated that I would play the role of key contact person between him and the SCI community, I recently proposed to him to get the names and addresses of the SCI patients who underwent the procedure so far, in order to streamline communication and to safeguard privacy of those patients. I hope that we can both co-operate to play that role. I will get feedback from Dr K. on that proposal by next week. You and your father being on the spot and speaking Turkish would be just excellent for playing that role.
                          Will you please contact me at corinnejeanmaire@hotmail.com or Corinne.jeanmaire@philips.com so that we can see how to move on ?
                          www.endparalysis.org!

                          Comment


                            Corinne, thank you so much not only for your incredible energy but your detail-oriented information gathering that is so helpful. Let me try to comment on the concerns, as well point out what I think is excellent about the procedures described.

                            Originally posted by Corinne Jeanmaire
                            Dear Wise,

                            Thank you so much for your comments. It was essential for us, patients, to know your viewpoints and concerns. Most of your questions have been forwarded to Dr K. already. Should he not reply by writing, I will also include them in my interview next week and will anyway make a comprehensive report of all feedback collected. An even better way would be that you also be able to discuss those points directly with Dr K. As already mentioned in my previous summary, he welcomes you for a visit whenever you wish.

                            In the meantime, please allow me to ask a few more questions or give feedback to your comments, to avoid any misunderstanding.
                            - Ascent of lesion : would it be possible to express which specific process could lead to such an ascent ? Which aspects of Dr K. approach let you think that this is a significant risk ? Or should we consider this risk as very minor just as with Dr Huang’s procedure ?
                            • Let me discuss the surgery and injection procedure before talking about ascent of the lesion. If I understand correctly, there are several major differences between Dr. Huang and Dr. Dedu's (I assume that he is carrying out the surgery) current procedures. First, Dr. Huang now does two small laminectomies and avoids exposure of the injury site itself. This is because he believes there are few axons that are travelling through the injury site and that any manipulation of the injury site itself may damage some of these axons. Since he is using olfactory ensheathing glia (OEG) that are known to migrate in the spinal cord and most of the axons that must regenerate through the injury site are situated in the surrounding cord, it makes sense to inject OEG cells into the surrounding cord and allow them to migrate into the injury site. Second, he makes only two injections into the midline of the spinal cord, injecting the cells very slowly. This way, he minimizes the trauma to the spinal cord and avoids injecting into the white matter. Every time that one inserts a needle into the spinal cord, one damages some cells and axons. There is also a risk that the needle will penetrate a blood vessel, causing a small hemorrhage that may also damage cells. Doing 30-40 injections is making a pin-cushion of the spinal cord. What is the rationale for doing so? Is there evidence that the bone marrow stem cells that are being injected cannot migrate in the spinal cord? If so, the people who are trying to give bone marrow stem cells intrathecally or even systemically cannot and should not expect the cells to enter the spinal cord. I am not sure how the Russians are doing it now but several Russian surgeons have told me that they inject the cells subpially to avoid damaging the spinal cord with direct injections.
                            • Ascent of the lesion may occur if there is hemorrhage, infection, or development of adhesive scar between the spinal cord and arachnoid that blocks cerebrospinal fluid flow. Hemorrhage is a possibility, as pointed out above, whenever one uses does sharp penetration of the tissue. If there is continued bleeding after the operation (for whatever reason) and the blood gets into the cerebrospinal fluid, this may lead to arachnoiditis. Infection is always a consideration in any operation. A meningitis or an abscess would be devastating and cause ascent of the lesion. It is true that these should be rare but when one does hundreds of cases, an infection will happen. Finally, adhesions between the spinal cord and arachnoid may develop and occlude the subarachnoid space where over a liter of cerebrospinal fluid must flow each day. When that flow is obstructed, some of it may be diverted into the central canal and cause syringomyelia. For these reasons, it is important to minimize the exposure of the spinal cord, manipulation and disruption of the arachnoid.

                            - Tumor : that question is recurrent within the sci community. Do you really assess this as a significant risk ? It is often stated that, in the case of adult’s stemcells transplantation, tumor risk is limited to ‘normal’ [ie not more than before cells transplantation] . Is there any experience denying that statement, especially in the case of bonemarrow stem cells and sci ?
                            • The risk of tumor is real but small and of course depends on the cells that are transplanted. In the past decade, hundreds of patients with spinal cord injury have received cell transplants from fetal and other sources. I have not yet heard any verified case of tumor formation. I have visited hospitals in China where probably over a thousand patients have received cell transplants and I have not yet heard of any case of tumor. By the way, tumors rarely form in the spinal cord, perhaps because of growth inhibiting factors that are present in spinal cord white matter. This of course does not mean that we should dismiss the possibility. By the way, most people think of tumor as cancer but the term tumor means something different to me. Tumor means a swelling, a growth that is inappropriate for the tissue. If the transplanted cells grow and produce cells that are not appropriate for the spinal cord, that is a tumor. It need not be cancer. Let me give an every day example so that people understand. A wart on the finger, for example, is a tumor. It is inappropriate growth but is not necessarily malignant. I have transplanted fibroblasts (skin cells) into the spinal cord of rats and have seen the cells form a mass of skin cells in the spinal cord and obstruct growth and recovery, sometimes even causing loss of function. Of course, one cannot know some things until they are tried but it is important that people understand that this is a risk and a real risk, as well as have a plan to follow up and what to do if it should happen.

                            - Cost of the procedure : let me recap : so far the cost was 15 000 Euro including transportation from the NL. Apparently 16 000Euro is applicable to procedure including transportation from USA.
                            • These costs seem very low to me. At these costs, that means that little or no funds are being expended on non-essential pre-operative or followup tests of the patients. I might suggest that Dr. K. establish a program (separate from the costs of the surgery and treatment) for followup of the patients and that this may be fundable through a research grant. This way, people are not charged for the costs of the followup.

                            - Patients ‘ progress : 2 patients able to walk. I should have been a bit more specific in my report. What Dr K said is that those 2 patients were able to walk ‘a few steps’. The nuance might be of importance. As regards the Patient 4, the one whose spinal cord is assumed to be cut, at the date of the first reporting [June 25th, 2005], there was no progress at all for him [also no regression]. Anyway, we will have a new update of those 4 patients + 5 other patients next week.
                            I hope to be able to get a feedback to the remaining open questions you raised.
                            • It is important that the patients be studied thoroughly and by experienced third-party physicians. I am very glad that there are plans to follow the patients.

                            Thanks so much for everything that you are doing.

                            Wise.
                            Last edited by Wise Young; 30 Jul 2005, 1:35 PM.

                            Comment


                              Dr. Young,

                              I wish you could go to Turkey and meet with Dr. Kleinbloesem. What he is doing may be able to help some people very soon, especially quads.

                              A phone conversation between you and he could be a good initial ice breaker.

                              I vote - DO IT !!

                              Comment


                                Schmecky, I was about to make the same suggestion!

                                I admire Corinne's organizational skills. She goes straight to the point and sums up all our questions.

                                I also admire Dr. Young's patience, but his answers only lead to more questions. A person to person talk with Dr. Kleinbloesem could solve that problem. It would be even better if Dr. Young could go to Turkey with Richwelsh in September!
                                Last edited by gretchen; 30 Jul 2005, 5:43 PM.
                                gretchen 1

                                Comment

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