Announcement

Collapse
No announcement yet.

Ten frequently asked questions concerning cure of spinal cord injury

Collapse
This is a sticky topic.
X
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

  • Wise,

    Thanks. That's a relief.

    Is there anything American legislators could do to help out with the ChinaSCI Network? If not, what can Americans do to help out?
    ...it's worse than we thought. it turns out the people at the white house are not secret muslims, they're nerds.

    Comment


    • procord studies

      Dr. Wise,

      I have a C6/C7 SCI resulting from a pool accident in June of this year, and I became a part of the Procord studies group. In the study, they surgically removed tissue from my arm and harvested macrophages, which they later inserted into my spinal cord in hopes of fostering an ideal environment for cell regeneration. I'm curious to hear what you know about this procedure and what your feelings about it are. Thank you very much.

      Comment


      • Originally posted by pjflash
        Dr. Wise,

        I have a C6/C7 SCI resulting from a pool accident in June of this year, and I became a part of the Procord studies group. In the study, they surgically removed tissue from my arm and harvested macrophages, which they later inserted into my spinal cord in hopes of fostering an ideal environment for cell regeneration. I'm curious to hear what you know about this procedure and what your feelings about it are. Thank you very much.
        pjflash, because of the wide range recovery by people from spinal cord injury, it is difficult to tell how effective the treatment is. The phase 1 study that they completed last year showed that the treatment was safe and that about 20% of the patients in the study recovered from ASIA A to ASIA C. Compared to historical data from the model systems database, suggesting that only about 5% of people make this transition, this is promising. However, given the small number of patients (about 20) and the trend for better recovery of patients in recent years, perhaps due to more aggressive rehabilitation and ambulatory exercise, it may not have been due to the treatment. On the other hand, it is sufficient to warrant a further phase 2 trial. I think that they are increasing the dose of the cells that they are transplanting.

        According to Michal Schwartz who originally discovered the beneficial effects of macrophages, the macrophages must be properly activated in order to be beneficial. Proneuron uses a piece of skin to condition the macrophages before transplanting them into the spinal cord. I have known a number of people who have received activated macrophage transplants. All were ASIA A at the time of surgery. Nobody got worse after surgery but at the same time I did not know anybody who walked as a result of the treatment (i.e. had ASIA D). Those patients that had the surgery also were definitively decompressed. Thus, whether the modest recovery was a result of the macrophages or not is unclear.

        Wise.

        Comment


        • Virginian Woman

          Dear Wise,

          What is your take on the histostem procedure if you will? Am i right in thinking that its a combination therapy too?

          many thanks

          Comment


          • dr. young

            why is a full facial transplant, just successfully done, doable, while restoring signifant function after chronic SCI is still not even close to possible? I understand the complexity of the circuitry of the spinal cord, but a full facial re-configuration is no walk in the park either. Of course, American doctors are calling the breakthrough in France as ethically questionable. That seems to be that all Americans are contributing to cutting-edge medical research. If we have to slowly debate every ethical issue in it's entirety, there comes a point when research as a whole is paralyzed from ever seeing patient's bedsides.
            What do you think will come first- reversing defecits from spinal cord damage, or reversing damage from a brain injury? Or are both pretty much lost causes in out lifetimes? When could you forsee the Koreans injecting the cloned embryonic stem cells into their 12 spinal-cord injured patients? Next year, 5, or is it already starting? I just got back from Craig in Denver, and I was reprimanded every time I mentioned regenerative therapies for chronic SCI. It ain't lookin good, is it?

            Comment


            • Interesting - damagedgoods

              Originally posted by damagedgoods
              I just got back from Craig in Denver, and I was reprimanded every time I mentioned regenerative therapies for chronic SCI. It ain't lookin good, is it?
              Interesting - and correct me here if I’m wrong; I understand that Craig in Denver is a rehabilitation centre for brain and spinal cord injuries, a clinic? I’m also of that impression that doctors at rehab centres and for that matter also some clinical surgeons are quite sceptic to regenerative therapies when it comes to chronic spinal cord injuries in the near future - on the other hand, researchers and scientists are more optimistic (knowing this by personal experience). How come? Is there something the clinicians don’t know? Or is there something the researchers don’t know? There seams to be a difference in opinions here.


              I also had an AVM, a diffuse (meaning it goes over several vertebra segments) Intramedullary AVM; this was also referred to as a type AVM II (2), Th4 – Th8. It was located both in the white and grey mater with the nidus lying within the spinal cord. At the end it had to be finally removed by surgery leaving me incomplete paralyzed from Th4 and down.

              I can see you write you have an AVF type IV fed by the anterior spinal artery. But aren’t those AVF 4’s completely extrinsic to the spinal cord?
              Last edited by Leif; 12-13-2005, 08:16 AM.

              Comment


              • leif

                leif-

                My spinal avm was very, very small, located on the anterior, pial surface of the spinal cord, just above the Conus. I had symptoms days before paralysis but doctors refused to deal with the problem. Of course, I was dealing with a hospital called northern westchester hospital, and their on-staff neurologist was a serious LIGHTWEIGHT to say the least. This guy was panicking worse than me, yet he didn't know what to do. I came in the night before full-blown paralysis, with weak legs, bad gait, no bladder function, and guess what? He sends me home with an appointment to see a urologist the next day. The next day I was completley paralyzed from T12 down, and to make matters worse I lay on a bed waiting for a ambulance to take me to NYC for like 4 hours. I lied there as other patients were being treated for fucking bee stings. I went to Mt. Sinai in NYC, and the neurologist ( who by the way wasn't a spinal cord expert ) diagnosed me with transverse myletis, he put me on steroids, put me down in the SCI rehab ward, and I just bloated and stayed the same for 4 weeks, until their angiogram guy got back from vacation. They told me that I may have AIDS, only because they had no clue. Well guess what, I had a small avm which had been visible on my MRI's since I first came to northen westchester hospital with back pain complaints. I remember calling for the results, the doctor was gone for the day ( it was friday afternoon ), and the results, they THINK, were negative. A visible, easily found spinal avm was right there on the MRI. By the time I was successfully embolized, a little more than 6 weeks had passed, and surgery was never done, because they most likely thought I was soo far gone that why bother. Who knows, maybe I would've gotten better. I have to express my utter disgust with my treatment at northern westchester hospital, it's staff, and Mt. Sinai, who took more than 6 weeks to do a angiogram, and their SCI rehab doctor wanted me discharged before I was even properly diagnosed. THIS IS NYC FOR CHRIST'S SAKE, and it was 1999, not 1909, and I was hung out to dry. The too-young neurologist at northern westchester might even have caused the AVM to form, or become active, after he did a horrible, just horrible spinal tap which electrocuted me. I had a fever months before, and they had to give me a tap, why I don't know. But I'll end it with this- before that spinal tap, I never, ever had any back pain or symptoms of weakness or sensory disturbances. It all started right after the spinal tap. To this day I am utterly disgusted with the way I was treated, dismissed until paralysis started, and then told it was too late anyway. These 2 hospitals were all too ready to get rid of me, and MRI's and medical briefs weren't sent ovfer from the hospitals, no one worked together for the betterment of my care. I am ready to name names and roast them alive on this site, do you think this is a good idea?

                Comment


                • Damagedgoods

                  I believe I know you – could that be correct? I know your story I think, you have explained it to me a time ago I believe. If so it is great to hear ya again. And yes, I totally agree with you, horrible first contact and follow-up by the doctors, and if they were unsure they should have contacted or sent you to others with more experience immediately especially since you had symptoms of a problem with the central nervous system (weak legs/bladder). And the fact they didn’t see the AVM on the MRI’s in the first place sounds like amateurish work to me among the time period before the angiograms was taken… Roast them? Isn’t this lawyer’s food?
                  Last edited by Leif; 12-13-2005, 06:37 PM.

                  Comment


                  • What a horrible story. I don't think, however, that naming names or roasting anyone here would be a good idea. And it's not cure related either.
                    "Oh yeah life goes on
                    Long after the thrill of livin is gone"

                    John Cougar Mellencamp

                    Comment


                    • cure related

                      What have surgery possibly have made me get more return? I always thought that a embolization was a pre-operative method to make actual surgery easier. I cannot find a single case where embolization alone was done, besides mine. If they thought that I was too far gone to have surgery, then they didn't tell me about my options. Every single spinal avm case I've read or studied, patients usually get much more return than I did. And my spinal avm was small. Was it due to the fact that it eas located in a extra-precarious spot, the anterior cord just above the Conus? Only Dr. Young could try to answer that. So this subject ( to me ), is very cure related, because any level of function I could get back would extremely enhance my quality of life, which as it stands now, is truly horrible. Yeah, yeah, I know that I am a low paraplegic, with full trunk and arm control, but the utter obliteration of my legs, hips, bowel, bladder, and by far the worst of all, sexual function and sensation, and the unfixable neuropathic burning, and drop foot, and feet swelling ( turning blue ), have lead me to thoughts I vowed I'd NEVER EVER do.
                      Regardless of what the reality is, I still feel chronic SCI is irreversible, and after being 6 years out, there is NO hope around the corner. Almost EVERY ailment or illness has been through clinical trials, yet SCI isn't touched. Tell me if I'm mistaken, but something like Parkinson's seems much tougher to deal with, since it's not just a blunt injury, but a genetic process, where something is causing nerve cells in the brain to die. But go to the government's embryonic stem cell fact sheet, these scientists think that SCI is far, far more complicated to treat, and that SCI is going to be addressed, if ever, much, much later. Now how can anyone be optimistic in the face of this ugly reality? Even this site has somewhat disassembled, since there doesn't seem to be much of anything real and concrete going on. I'm told that it's the SCI community's fault for not coming together, like as in the case of AIDS, well it's tougher to join together when many of us are paralyzed, and getting out of bed and in the shower takes up half the fuckin' day!

                      Comment


                      • Originally posted by damagedgoods
                        why is a full facial transplant, just successfully done, doable ... Of course, American doctors are calling the breakthrough in France as ethically questionable.
                        The Cleveland Clinic was looking to do this a few months back (trying to find the perfect patient) and they were beaten by the French.
                        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

                        Comment


                        • I want a peripheral nerve graft done to regain bladder sensation and control - I ask for nothing more. At this point, I would be willing to re-mortgage my condo to do this ... but it would have to be completely successful.

                          Why can't nerves be grafted from donors? (Perhaps a dumb question?)
                          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

                          Comment


                          • lynnifer, will be interesting to see if the peripheral nerve graft is proven to be effective before the mechanical device. I'm betting on the mechanical device - at least it's removable if it doesn't work. Do you remember the article on the guys from Duke who are working on an electric stimulator? Mike
                            T12 Incomplete - Walking with Crutches, Injured in Oct 2003

                            Comment


                            • Originally posted by lynnifer
                              I want a peripheral nerve graft done to regain bladder sensation and control - I ask for nothing more. At this point, I would be willing to re-mortgage my condo to do this ... but it would have to be completely successful.

                              Why can't nerves be grafted from donors? (Perhaps a dumb question?)
                              lynnifer, there are such things as peripheral nerve banks. At New York University, for example, they use to maintain a cadaveric peripheral nerve bank (I don't know whether they are doing so any more) to provide grafting materials. All the cells are allowed to die in the nerve (so that the cells are not rejected) but the connective tissue scaffolding of the nerve remains. It works but not as well as fresh nerve from one's own body. Wise.

                              Comment


                              • xmas

                                I'd love even a miniscule cure for next christmas. What's the outlook for 2006? If it is the same ol' thing, I guarantee you that I won't be alive by next xmas. What the f--- is going on here? I was expecting big things by 2007, because I was told by some of the top pioneers in research that by then, there would be substantial improvements. I was told this in 2002, and today 2007 looks no better or hopeful than right now.
                                When does hope become pure delusion? My hope is for partial improvements, and if this is delusional, then SCI really is unfixable..and will always be so.

                                Comment

                                Working...
                                X