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Thread: New here, panicking massively!

  1. #11
    That's how it seems to be with SCI, you go along at a certain level for awhile and think there might not be setbacks, and then something happens that makes you realize how unpredictable the whole experience is. You think you can't cope with additional issues, but somehow you find the strength when that's what's on your plate. I hope your MRI won't show anything major going on, but if it does just be sure you have the best medical care available, and think in the long term - SCI doesn't usually progress or regress in a linear fashion, and there's no way to predict which pathways it will take. The psychological uncertainty is very hard, no doubt about it.
    MS with cervical and thoracic cord lesions

  2. #12
    So - if it?s any help/comfort, I have an incomplete T3 injury and have twice had surgery to remove scarring around the cord/within the dura and arachnoid cysts dense enough to block CSF flow. I have total and partial laminectomies. Once everything got cleared up, I have regained some function and much of my sensation normalized. This stuff is terrifying, and laminectomies (at least IME) are super uncomfortable. I wish you all the best. Try not to get too stressed.

  3. #13
    Yeah I'm being treated at king's college hospital, which is probably he best in Europe, so that should be good.
    The thing is, when I was in hospital recovering from surgery and I asked them what if it comes back? They said "there is no reason for it to", then they discharged me and told me to go about my life as if nothing had happened to me, which I tried to do. I think they probably should have told me that these things can come back...
    i was wonderjng annev308, why is csf flow important to the spinal cord?
    i'm glad I found you guys, it can feel pretty lonely at times when you're surrounded by people who haven't been through something similar.

  4. #14
    Don't assume the cyst has returned. Many times, arachnoid cysts are present from birth and are only discovered as incidental findings when doctors are looking for something else. Sometimes they don't cause any symptoms at all, for reasons no one really understands. Postop symptoms can be caused by other things, not directly related to the cyst - for example, inflammation from other causes, bone spurs, herniated discs. Sometimes MRIs show nothing unusual at all, in spite of symptoms, because nerve damage per se might not be visible. Many times, no diagnosis can be made and the best you can do is have regular followup and carry on with your life, symptoms or no. The spinal cord, in spite of all that we know about it, remains in many ways a mystery - especially when it comes to individual therapeutic situations, where prognosis can only be suggested on the basis of statistics.
    MS with cervical and thoracic cord lesions

  5. #15
    Quote Originally Posted by Bonnette View Post
    Don't assume the cyst has returned. Many times, arachnoid cysts are present from birth and are only discovered as incidental findings when doctors are looking for something else. Sometimes they don't cause any symptoms at all, for reasons no one really understands. Postop symptoms can be caused by other things, not directly related to the cyst - for example, inflammation from other causes, bone spurs, herniated discs. Sometimes MRIs show nothing unusual at all, in spite of symptoms, because nerve damage per se might not be visible. Many times, no diagnosis can be made and the best you can do is have regular followup and carry on with your life, symptoms or no. The spinal cord, in spite of all that we know about it, remains in many ways a mystery - especially when it comes to individual therapeutic situations, where prognosis can only be suggested on the basis of statistics.
    Yeah you are totally right that arachnoid cysts don't cause anything in most cases, as I have probably had this one since birth, and that we don't really know much about the spinal cord despite a lot of efforts

    it's just that now these symptoms have appeared not immediately after the surgery, but a few months after, so I am wondering if as you said, there is another cause for them. and I want to find that other cause. I want to get to the bottom of this thing, to see if it can be helped. otherwise I feel like I'm failing myself by not trying, and I feel guilty. It's weird I know

    I am thinking what if the cyst had nothing to do with the symptoms and they could be explained away with some other thing, like piriformis syndrome or something like that? that would mean I had a pointless surgery. oh my god... I really don't know what to think. I'm really not good at accepting things either, and this makes me so stressed out.

  6. #16
    Quote Originally Posted by Jade2 View Post
    it's just that now these symptoms have appeared not immediately after the surgery, but a few months after, so I am wondering if as you said, there is another cause for them. and I want to find that other cause. I want to get to the bottom of this thing, to see if it can be helped. otherwise I feel like I'm failing myself by not trying, and I feel guilty. It's weird I know

    I am thinking what if the cyst had nothing to do with the symptoms and they could be explained away with some other thing, like piriformis syndrome or something like that? that would mean I had a pointless surgery. oh my god... I really don't know what to think. I'm really not good at accepting things either, and this makes me so stressed out.
    I know where you're coming from. I went through countless tests over a period of about 10 years before MS was finally diagnosed - but the tests were necessary in order for me to feel that I'd done all I could do to repay my body for being such a good friend. Which it still is! Sometimes the dynamic of our relationship to our bodies just shifts, for reasons we might never understand, and that becomes the new normal.

    There are so many variables with spinal cord issues, it boggles the mind - you are wise to try to pin down the cause of your symptoms, and hopefully there will be some good answers from the MRI. Your horror at the thought that perhaps your surgery wasn't necessary is one of the psychological hoops we jump through when SCI hits - the questions, the doubts, the sorrow. It doesn't help very much when people try to reassure us, because those feelings run so deep.

    Often, the best medicine can offer is to tackle obvious issues first, in an effort to narrow down the list of possible causes - and since arachnoid cysts do cause bad problems a certain percentage of the time, your surgery makes sense. You have good doctors, that's a huge plus. You say you're not good at accepting things, and that's the best way to be right now because it makes you tenacious about finding solutions. If something comes along that you have no choice but to accept, you'll be able to do it because of the steps you're taking now.
    MS with cervical and thoracic cord lesions

  7. #17
    Quote Originally Posted by Bonnette View Post
    I know where you're coming from. I went through countless tests over a period of about 10 years before MS was finally diagnosed - but the tests were necessary in order for me to feel that I'd done all I could do to repay my body for being such a good friend. Which it still is! Sometimes the dynamic of our relationship to our bodies just shifts, for reasons we might never understand, and that becomes the new normal.

    There are so many variables with spinal cord issues, it boggles the mind - you are wise to try to pin down the cause of your symptoms, and hopefully there will be some good answers from the MRI. Your horror at the thought that perhaps your surgery wasn't necessary is one of the psychological hoops we jump through when SCI hits - the questions, the doubts, the sorrow. It doesn't help very much when people try to reassure us, because those feelings run so deep.

    Often, the best medicine can offer is to tackle obvious issues first, in an effort to narrow down the list of possible causes - and since arachnoid cysts do cause bad problems a certain percentage of the time, your surgery makes sense. You have good doctors, that's a huge plus. You say you're not good at accepting things, and that's the best way to be right now because it makes you tenacious about finding solutions. If something comes along that you have no choice but to accept, you'll be able to do it because of the steps you're taking now.
    What can I say, thank you for your kind words and your time, I really appreciate them. I'm gonna have to hang in there, and hopefully things will get better. How long ago were you diagnosed with MS? how are you coping? I hope it's not too bad!

  8. #18
    Quote Originally Posted by Jade2 View Post
    What can I say, thank you for your kind words and your time, I really appreciate them. I'm gonna have to hang in there, and hopefully things will get better. How long ago were you diagnosed with MS? how are you coping? I hope it's not too bad!
    Just give it time, spinal cord injuries from any cause can be slow to heal...and progress tends to be of the "2 steps forward, 1 step back" kind. There have been cases of people experiencing significant return years after they were told they'd reached their maximum. I hope that your doctor will have a straightforward report for you next week, along with solutions that work right out of the box.

    I started having symptoms in 1998, followed by several wrong diagnoses until the case for MS became pretty clear in 2006 - clinched in 2008 by more detailed MRIs, lumbar punctures and blood tests to rule out MS mimics. I'm coping pretty well overall, MS tends to level off the older one gets, so I'm knocking on wood. Being elderly (68), it's getting hard to differentiate between the progression of old age and MS.

    Keep us posted when you get the results, I hope you won't have long to wait.
    MS with cervical and thoracic cord lesions

  9. #19
    Guys,

    what the heck do I do now? I had the MRI 2 weeks ago and haven’t hear anything from th3 hospital. I have tried ringing the doc’s secretary twice, leaving her a message asking whether the doc had reviewed the MRI, but no reply. My pain is getting worse, numbness comes and goes in some bits but has stayed in some other bits. Whatever I do it doesn5 improve, actually even swimming makes it worse. Yesterday I tried to stretch and I was better for a couple of hours but then got worse again! Yesterday at night I started havi some shooting pains in my right leg and groin and I started shivering and feeling super cold. Cold and shivering went away after an hour, and I went to sleep, but the general trend of the pain is getting worse. Why don’5 they pick up the phone? They said if it’s soething horrible we’ll call you straight away, so that was reassuring at first, but things are getting worse so I don’t know what to think!

    sad...

  10. #20
    Also I’m going mental cause sitting hurts, swimming hurts, elliptical hurts, lying down if not on my tummy hurts, standing is alright for 30 mins but then it hurts. And I feel like the muscle in the side of my right buttock is painful when I move the leg, like I have damaged it. There is no peace!

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