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Thread: ischemia or other vascular causes of SCI

  1. #21
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    Gretchen 1,

    You asked me what kind of tests would actually show the damage my spinal cord has suffered.

    Maybe I misunderstood you here: I was thinking like in my case, first I got the reduced sensation and motor signs to my legs a little by little. Then I went to a doctor following examinations including a MR scan. - The MR did find a lesion that first was anticipated to be an AVM and then confirmed by a later taken Angiogram.

    This in fact have showed where my origin of the problems was (documented), off course I have also had some oedema in the cord due to the pressure and the lack of blood flow to the surrounding tissue (nerve cells). This is a fact since I am paraplegic. And this can be a problem to detect and pin point I believe.

    The surgeon also knows where he did the removal of the AVM. But in fact we don't know what secondary causes the AVM has done to the cord.

    I know what you are asking now: How to pinpoint the area for a new treatment (if), how to be able to see these area/areas on a film/scan or by other means. - I don't know! Cause as you says, the scans/films are normal but we are not.

    Lynnifer. I guess the same is valid for your comment here regarding TM.

    Some days ago I did send a letter to my professor asking several questions among those. I also asked him if peoples with lesions like mine will be good candidates for the new possible treatment we can se the early out spring of - stem cell therapy. I will keep you informed about the answer to the letter. Hopefully he will understand my letter, remember I'm just a humble engineer, not a doctor.

    Leif

  2. #22
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    Leif, we have the same sad story and the same symptoms. Hope you get some answers so we can look for an appropriate therapy when one becomes available. Do you have a lot of neuropathic pain? Mine started right after the first failed embolization

    gretchen 1

  3. #23
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    Gretchen 1. Answers we will have! It's just a matter of time, money and politicians that can speed up things and not halt or in worst case reverse research. Time we have some of, money there is plenty of (if released) and politicians I guess we have more than enough off. And most important there is peoples like the ones on this site that can be a pain in the ass to all of the above. And maybe if we where cured, think about how wonderful peoples we could have been, maybe we could have been a resource in the world and help on other fields.

    Naturopathic pain; Not much, after the surgery I got some irritating pain in my right groin area, it is not a big deal - guess I'm lucky. For that I take Neurontin 3x600mg/day. The only medication I take.

    Leif

  4. #24
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    I had six years of back pain and numbness that would come and go as my spinal cord tried to repair itself (I assume.) Then, one day, after hours of strenuous effort in my backyard, I experienced intense backpain again and numbness. By the end of the week, my left foot was cold. After 5 trips to the hospital, during which I was told there was nothing wrong with my back at all, and "let's wait to see what happens", we demanded an MRI and they finally identified the cause...and saw what the doctors had missed six years earlier... Still, if the avm had been removed the vein right then, I would have gotten away with minimal deficits.

    Today, I am paraplegic, Asia A (I was Asia B after the failed embolizations but the avm continued to cause additional damage and two weeks later, I had lost anal sensations and contractions)

    I don't know if this answers your question. I suspect everyone has a different story, although Leif and I seem to share similar experiences.

    gretchen 1

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