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  • Syringomyelia due to injury?

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    Old 11-19-2005, 07:02 AM   #1
    Shadowrider
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    Syringomyelia due to injury?

    Anyone out there dx'd with SM after they incurred a spinal cord injury? I learned about SM on this board and have done a lot of research on it. I am going to present this to the neuro when I see him on Dec. 6.

    Over a year and a half ago, I suffered a Jefferson fx of the C1 (broken in 4 places), and a severe head injury. It's been quite a journey. First, they concentrated on the neck, and not that well, if you ask me. I started having very strong sx that sound so much like SM...my docs seem all confused and I've undergone all the usual tests. A month ago, my neuro said (and wrote in his report) that he thinks I had spinal cord injury. Which makes sense when you suffer such a traumatic break in the Atlas bone! When I read about SM, I see the sx can come on later. So, I am interested to hear from those folks not with Chiari perhaps (tho when I look at my MRIs, it sure looks like my cerebellum is dropping down just below that "line" above the spinal column and obstructing CSF. )....but with dx'd SM due to SCI. Anyone? Anything I can take to my neuro in terms of your stories would be helpful.

    Shad

     
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    Old 11-20-2005, 06:49 AM   #2
    feelbad
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    Re: Syringomyelia due to injury?

    If anything is now affecting your cord,you DID indeed suffer a spinal cord injury.have you had any other opinions on your condition and how the initial trauma was handled?Get as many opinions as possible(i got three) to really see just what the docs are thinking your main issues are.also,get any and all reports(ED,immediate post accicent,plus run reports from the medics who treated you,you may have to actually go through "their" service and not the actual hosp for this.doc reports, tests done,EVERYTHING that was generated from this incident)then gather it all in a file and take this with you to all appts so if a particular doc needs certain info,you will have it,just don't 'give' them the original,have them make their own copy.just reading through all of this stuff,espescially all doc notes and reports will give you a bit clearer picture of just what the docs feel about your overall condition.this stuff really IS very important for you to have in your own possesion,trust me on that.also,every month or two,depending on how many actual appts and tests you are having,get all of the updated stuff and again,place them into your file.I got one of those plastic type expanding folders and it works great to hold alot of paperwork.at some point,you will be very very glad that you have your own medicl files.good luck and please keep us posted here.are they even totally sure of the syr.diagonsis or ar they considering other things?Marcia
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    3-22-01,herniated C-6-7
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    9-22-03,removal of cavernous hemangioma that was inside spinal cord. Neuro damage to L hand L leg and R leg.

     
    Old 11-20-2005, 08:29 AM   #3
    Shadowrider
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    Re: Syringomyelia due to injury?

    Feelbad and Kirafaye, thanks for responding. I had a very, very rough day and evening yesterday....Neuropathy and Paraesthesia SO bad and something very central making me feel so weak, so "nothing." I am wondering if the Neurontin is causing some of this. Which is what I'm taking it for (900 mg)....but my doc. said it can cause drowsiness and foggy thinking (oh great!) and that was why he didn't want me on it, but the neuro put me on it.

    Feelbad, I am like you, I have gotten all the past history and reports. I keep them in large binders, and I have two full so far. Some folks might think I'm obsessive. But I can't imagine how I'd feel at this point if I didn't know I had all the info right ready to hand. I have hospital reports, doctor reports, all the appts I've seen, etc. I've been thru so many tests. No, I do not have a dx of syr. I haven't even mentioned that to my neuro yet, I'll see him (and later same day, my PTP--did I mention this is all work comp--I "was" a horse trainer) on Dec. 6 and plan to first tell him about syr. and also be very proactive and push for more testing. My PTP said he wants to send me to Irvine, CA to have a PETscan and I'm ready to go. I simply have to find out what is wrong, I'm in such swift decline, and my world is beginning to shrink to just my house...I only have an hour a day of any type of energy, and just a year and a half ago, I was actively training and caring for jumping horses! (I had an accident much like Christopher Reeves and I am very blessed to be walking and talking at all).

    I like your advice and I hope others read it. I do the same, every two months, I ask for copies of reports to update everything.

    Also, about my neck and spinal cord...when I was in the hospital, an aide, in the middle of the night, picked me up, one arm under my neck and one under my knees, to move me!!! I screamed and in the middle of that, my reflexes snapped out and hit him in the stomach. There is more, but suffice it to say, that event might have really damaged my spinal cord, but I didn't know it then. I don't know ANYTHING about my injury and everything I'm going thru because of it, unless I research it and find it out. I landed on my head (yes, I had a helmet on) hard enough to break my neck in 4 places, YET no one in the hospital mentioned brain damage to me, and I was sent home in 4 days to stay there for one month, do not drive or go anywhere, and no visiting nurse or whatever to come see me and how I was doing...No instructions to my husband as to my care....no phone calls to even check up on me!

    AND I got an atty that is highly respected but I can't seem to get a face to face mtg with him. I called a week ago and when I called again the gal said she hadn't "asked him yet." gggrrr.

    Well, thanks for your responses. I feel pretty alone right now and have to be my own advocate, no one in my family is doing it for me...it's all my own fight and struggle and that's okay....keeps my brain going. Fighting for your health, for your survival, who thought we'd ever have to do this?

    thanks you guys, it touches me deeply, your replies!

    Shad

     
    Old 11-21-2005, 05:32 PM   #4
    kirafaye
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    Re: Syringomyelia due to injury?

    I hallucinated on neurontin and felt sick as a dog so I would be surprised...the new drug lyrica is supposed to be as good with less side affects...talk to your doctor about what he thinks.

     
    Old 01-02-2006, 02:22 PM   #5
    KIDINSANITY
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    Re: Syringomyelia due to injury?

    There re support groups for Syringomyelia and Chiari syndromes. There might be one in your area.

     
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