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Thread: Great idea!

  1. #11

    Tm

    yes i have trans verse mylitis happened in 5 minn could not move anything from chest down. Now its been almost 4 yrs left c5 c6 incomplete. anty
    For every minute you're angry you lose a second of happiness

  2. #12
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    Quote Originally Posted by keps
    I don't really understand what AVM's and infarcts are.
    A spinal arteriovenous malformation (AVM) is an abnormal tangle of blood vessels on, in or near the spinal cord. The arteriovenous malformation causes spinal tissues to be starved of normal amounts of oxygen, and the cells that make up these tissues begin to deteriorate or die. The abnormal group of blood vessels (the AVM) may rupture and cause a spinal hemorrhage. Rarely, the AVM may become larger and compress the spinal cord.

    - Seams like there are lots of rare disorders that can have serious effect on the spinal cord; like some of you writes about; TM and SSEDH, I’m sorry to read about all this. Leif

  3. #13
    Senior Member keps's Avatar
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    Leif,
    thank you for the explanation. Now I understand better what an AVM is.

  4. #14
    Quote Originally Posted by keps
    Leif,
    thank you for the explanation. Now I understand better what an AVM is.
    Keps, Leif explained it well. I just want to point out one other factor that contributes to the ischemia produced by an arteriovenous malformation (AVM). In an AVM, an artery connects directly to a vein. When this happens, not only does the blood not pass through the tissue via capillaries, as it should normally, it also increases venous pressure. Like all fluid flows, the pressure gradient between two points is the main reason that fluid moves. When venous pressure increases, there is less driving force for blood to move. The increased venous pressure also enlarges the veins. Most people with spinal cord AVMs have enlarged and tortuous veins on the surface of their spinal cords. If the venous expansion is significant, it may also compress the spinal cord. However, the main reason for decreased blood flow in the spinal cord is due to the vascular "steal" and the increased venous congestion that occurs.

    Wise.

  5. #15
    Super Moderator Sue Pendleton's Avatar
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    Quote Originally Posted by Wise Young
    Keps, Leif explained it well. I just want to point out one other factor that contributes to the ischemia produced by an arteriovenous malformation (AVM). In an AVM, an artery connects directly to a vein. When this happens, not only does the blood not pass through the tissue via capillaries, as it should normally, it also increases venous pressure.
    Wise.
    I think these kind of AVMs are also more likely to occur in the brain. Wise, am I correct on this?

    And Keps, with ischemia (spinal infarct) also I had the killer pain in the bends of both elbows. A few minutes later my fingers refused to move and then my hands. After that muscles from my chest on down quickly disappeared and my body felt numb. It was somewhere between the 2nd and 3rd hour that I started turning blue around the lips and was intubated. Leif, I also received steroids and a lot of inpatient PT and OT. I spent 7 days pretty much in an induced coma to keep the breathing machinery in. Or the German docs said it was induced. I have never had a test, and I've had a ton of tests, show I was deprived of oxygen to the brain so I tend to believe them.

    Psychologically I believe it is easier to deal with such massive life changes if something tangible happens. I was perfectly healthy one moment and the next some invisible horrid thing was driving railroad spikes into my elbows.
    Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow."

    Disclaimer: Answers, suggestions, and/or comments do not constitute medical advice expressed or implied and are based solely on my experiences as a SCI patient. Please consult your attending physician for medical advise and treatment. In the event of a medical emergency please call 911.

  6. #16
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    Quote Originally Posted by Sue Pendleton
    I think these kind of AVMs are also more likely to occur in the brain. Wise, am I correct on this?.
    - AVM’s can occur in the brain as well, they can occur anywhere in the body, anywhere there are blood vessels. There are also several types of them and it is not uncommon that they can occur in the spinal cord – and that is definitely one place we don’t want to have them. Sometimes AVM’s in the brain can be easier to deal with – easier to access them. I have also read about people who have them in the brain; sometimes they can actually hear the gurgling noise when the blood flow is going trough the AVM.


    I was perfectly healthy one moment and the next some invisible horrid thing was driving railroad spikes into my elbows.
    Many years ago (-87), long before the physical problems with the AVM occurred I did have one incident which I later am sure had to do with the AVM. I was sitting on an airport waiting for my flight for going to work and then out of nothing came a pain in the chest like I was stabbed by a knife, it was very painful and I was sure I was going to die, got problems with breathing etc. The doc’s did all kinds of tests but did not find anything. I got better and did not have any problems until many years after. What I believe happened here is that it must have been a nerve that was pinched by the growing AVM. This must have been one of the nerves controlling the chest area over T4 where they did find an AVM many years later. Thanks, Leif.
    Last edited by Leif; 07-31-2005 at 07:31 AM.

  7. #17
    Senior Member keps's Avatar
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    Is an AVM similar to spontaneous spinal extradural haematoma, or are they totally different?
    I know how bad the pain can be from a bleed. Mine was so enormous, I actually started stabbing my hand with a needle to take my mind off it(and failed), I also tried to burn my chest with a hot water bottle I happened to have. I know all that sounds ridiculous, but the pain was absolutely phenomenal, and I was utterly desperate.

  8. #18
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    keps,
    spontaneous spinal extradural haematoma;

    http://www.neurologyindia.com/article.asp?issn=0028-3886;year=1999;volume=47;issue=2;spage=159;epage=1 59;aulast=Tewari

    I did find this article, AVM’s are mentioned but I’m not sure exactly if SSEDH can be linked to AVM’s. – guess we need Dr. Wise’s comments on and if there is any relationship here. And I can relay on the pain.

  9. #19
    Super Moderator Sue Pendleton's Avatar
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    Quote Originally Posted by Leif
    - [font=Verdana]
    Many years ago (-87), long before the physical problems with the AVM occurred I did have one incident which I later am sure had to do with the AVM. I was sitting on an airport waiting for my flight for going to work and then out of nothing came a pain in the chest like I was stabbed by a knife, it was very painful and I was sure I was going to die, got problems with breathing etc. The doc’s did all kinds of tests but did not find anything. I got better and did not have any problems until many years after. What I believe happened here is that it must have been a nerve that was pinched by the growing AVM. This must have been one of the nerves controlling the chest area over T4 where they did find an AVM many years later. Thanks, Leif.
    It's strange you mention this Leif. About a month or so before my stroke I went on a long slow bike ride out into the country with friends. We stopped at a gasthaus for lunch and just as my food arrived I had a pain hit me just above a tooth right below the outside of my right side of my nose. I had migraines when I was younger of the classic type: head for the bathroom for no real reason, vomit and the pain hit right between the eyes and back some as soon as I stood up again. No "no reason". It hurt so bad I wanted to barf right there and then. Just as suddenly it was over.

    I went to army emergency dental call in the morning (civilians who work for the army get emergency dental only) and an xray showed no problem with the tooth, the crown over it or anything the doc could see of the root. To this day I can feel where that area is swollen a bit and worry A LOT about when the root canal for that starts. But it was brought up to the ER and ICU teams while I was unconscious by my husband. I had a full head CT scan while I was still awake and breathing ok and it showed nothing wrong in that area. Maybe the clot or whatever was so tiny it wouldn't show. Or maybe it was a break in the vacuum created when the crown was glued on and suction somehow reconnected the vacuum. I just know that that pain was incredibly sharp, serious and deep. Much worse than the first hit of a migraine and I didn't think that was possible.

    Hmm C1 and C2 do go up the neck to the lower face and ears. Maybe we do need Wise to take a peek at this thread.
    Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow."

    Disclaimer: Answers, suggestions, and/or comments do not constitute medical advice expressed or implied and are based solely on my experiences as a SCI patient. Please consult your attending physician for medical advise and treatment. In the event of a medical emergency please call 911.

  10. #20
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    Sue,

    I don’t know what this could be. But I know stories about AVM’s that first was expected to be dental problems. Here is a link to westga.edu (http://www.westga.edu/~wmaples/parrish_brian.html) for a story that started with dental problems. Westga.edu has a huge website with many narratives about peoples with AVM’s and vascular problems where the problems can be either in the brain or the spinal cord. I agree with you, we need Wise to look into this.

    By the way, I also posted my narratives there some time ago for hoping it could help others; http://www.westga.edu/~wmaples/fjellheim_leif.html
    I'm also hoping that I can go back to the website sometime in the future and update it with some information of me walking again

    Leif
    Last edited by Leif; 08-01-2005 at 12:09 PM.

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