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    New here, panicking massively!

    Hi guys,

    I'm new here, and I am feeling so scared and exhausted right now. I have been lurking this forum for a while now, but felt today was the day I was going to post something, because I am feeling so overwhelmed by fear I need to talk to someone.

    I had a laminectomy in early Nov 17 for a massive spinal intramural arachnoid cyst from t4 to t10, which was compressing my spine.

    I was sort of ok after surgery for around 2 months, I was really improving, but then symptoms started again and now they are worse than before!

    I have an MRI this early afternoon, to see if the cyst is back. If it is, I honestly don't know what I'm gonna do, cause I've been so traumatised by this ordeal >I don't know if I can go through it again.

    Wish me luck! and hopefully I'll have some good news to report soon...

    #2
    Good luck. Don't assume the worst.
    T3 complete since Sept 2015.

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      #3
      I, too, wish you the very best. Hope the news is good from your MRI.
      MS with cervical and thoracic cord lesions

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        #4
        Thank you guys. I arrived early, MRI is in an hour! I'm slightly bricking it, but relaxing now in the park near the hospital.
        crossing all my fingers!

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          #5
          Welcome to CareCure, the club no one wants to be eligible to join. You can find a lot of information and support on our forums. I hope your news from your MRI is good, but the reason for your return of symptoms does need to be discovered. Hopefully it is something that can be corrected. What symptoms are you experiencing?

          Please complete your profile though, as it makes it so much easier to put your comments and questions in context related to your age, location, gender, and type and level of SCI/D. Thanks!

          (KLD)
          The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

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            #6
            Fingers crossed for you.

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              #7
              Jade2, do you have to wait until Monday for the results? Weekend waits are tough!
              MS with cervical and thoracic cord lesions

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                #8
                Hi there, I had the scan! they didn't even give me contrast, and it was over quite fast, but maybe they used a powerful machine.

                I'm not sure what will happen now, they just said the scans will go to my doctor and if it is urgent I will get called sooner. What that means, I have no idea!

                I have been so anxious in the past 6 months, I really feel exhausted. And the thing that is worst of all, is that I was getting so much better, and then I got worse again. it's almost like destiny is messing with me, telling me "ha! you thought you were out of the woods didn't you? but you're not!"

                so yeah, the idea that I might end up having another surgery, with all the additional risks (I have read that surgeries after the first are more risky overall) and having to go through the same ordeal if not worse, I don't know if I can do it...

                I have been to A&E twice in this week, telling them I'm getting worse, but they just told me "it's probably just sciatica", but then I'm getting really worse so I don't think it's just a bit of sciatica. That said, I have for now a mild injury, so I am very humbled by people who have it way worse than me, I don't think I am made of strong enough stuff to cope with this thing. I was always very active and healthy, but always suffered from terrible anxiety (especially around health!), so really this is not the challenge for me

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                  #9
                  Originally posted by Bonnette View Post
                  Jade2, do you have to wait until Monday for the results? Weekend waits are tough!
                  I think I will have to now, as they haven't contacted me yet. I hope the anxiety won't kill me in the meantime!

                  Comment


                    #10
                    Originally posted by SCI-Nurse View Post
                    Welcome to CareCure, the club no one wants to be eligible to join. You can find a lot of information and support on our forums. I hope your news from your MRI is good, but the reason for your return of symptoms does need to be discovered. Hopefully it is something that can be corrected. What symptoms are you experiencing?

                    Please complete your profile though, as it makes it so much easier to put your comments and questions in context related to your age, location, gender, and type and level of SCI/D. Thanks!

                    (KLD)
                    Hi,

                    yes, let's hope it can be corrected somehow, but I am aware the more time passes and the less likely it will be that it can be corrected.

                    so I have tingling in my feet, it comes and goes, worst when I wake up and when I train. then I have some numbness in my right buttock, towards the outside, if it makes any sense? then I have pain in both my legs, but the right one is definitely worse. sometimes it's like hot/cold sensation, or like my lower right leg is wrapped in cling film, if you know what I mean. and sometimes my legs are super stiff, especially after waking up!

                    and I think some sexual dysfunction, which is killing me, but no bladder or bowel incontinence.

                    I am not massively injured I think, but man I'm finding this hard to deal with. I guess I was brought up in a family environment in which if something goes south, then everyone panics and people are not really helpful. I'd hate for this to progress to something worse, as I cannot imagine being at the mercy of my family. thankfully I have a great boyfriend who takes care of me, but I'm scared he'll get bored of me if I keep being unwell..

                    I mean I can walk, so I'm really really lucky compared to other people, and I am grateful for that. I hope you guys don't think that I don't belong, I've been trying to connect with people with this problem forever now.

                    Comment


                      #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

                      Comment


                        #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.

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                          #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.

                          Comment


                            #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

                            Comment


                              #15
                              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.

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