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  • #16
    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

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    • #17
      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!

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      • #18
        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

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        • #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...

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          • #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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            • #21
              When is your next appointment? The best thing is reviewing the results in person.

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              • #22
                It’s June 12th! That’s ages away. How am I gonna survive til then? I am in the UK, we have free healthcare here, I also have insurance, which I have used extensively until now. But I mean, I shouldn’t have to use insurance again, for god’s sake, I pay taxes and I should get a healthcare system that doesn’t let me get so much worse for nothing, right?

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                • #23
                  Oh Jade, this is awful. You're right that you shouldn't have to use insurance under the circumstances, but I don't know how you can endure pain on this scale until June. If you went to another doctor, he or she could at least obtain your MRI for review - but I don't know how the system works where you are, you might have to wait just as long to see someone new. The only thing I can suggest is for you to call your doctor one more time and say that you're in so much pain that you're going to have to call someone else if they don't get you in on an emergency basis. If you get the answering machine again, leave a message that you'll need to seek help elsewhere unless you hear from them within a day or two. It's good you have insurance to fall back on, though of course the best thing would be to see the doctor who already knows your history.
                  MS with cervical and thoracic cord lesions

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                  • #24
                    Originally posted by Bonnette View Post
                    Oh Jade, this is awful. You're right that you shouldn't have to use insurance under the circumstances, but I don't know how you can endure pain on this scale until June. If you went to another doctor, he or she could at least obtain your MRI for review - but I don't know how the system works where you are, you might have to wait just as long to see someone new. The only thing I can suggest is for you to call your doctor one more time and say that you're in so much pain that you're going to have to call someone else if they don't get you in on an emergency basis. If you get the answering machine again, leave a message that you'll need to seek help elsewhere unless you hear from them within a day or two. It's good you have insurance to fall back on, though of course the best thing would be to see the doctor who already knows your history.

                    Hey Bonnette,

                    I managed to get my GP to chase the MRI for me, I told him how much I'm hurting and at least he said he'll do that for me, even though he won't be able to interpret the results. But at least I'll be able to compare the images with the previous MRIs I have and see if there has been a worsening of the situation. In the meantime, I'm having to lay on my stomach, which is the only way it hurts less. I asked the GP whether it could be a problem with my hip contributing to the pain, as it hurts a lot worse if I move my leg, and the part that joins the femur and the hip seems to click and catch all the time, and he said to wait until my physiotherapy session on Tuesday. So I'm basically gonna have to meditate this out I guess... I hope everything is good with you!

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                    • #25
                      Does anyone know if there is a way to distinguish pain due to the spinal cord from pain due to peripheral nerve inflammation? Cause I get my hips pretty inflamed from time to time...

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                      • #26
                        Jade, I'm so glad you got some help from your GP! Wouldn't your MRI images be accompanied by a written report by a radiologist? That's how it is over here, maybe it's different in England.

                        Clicking sounds like a ligament problem. It would be a good idea to abstain from activity until you know for sure - wouldn't want to exacerbate it in an effort to make things better (I've done that so many times, it isn't even funny - trying to power through injuries doesn't work). Meditating it out does seem like the best approach, until you see either the doctor or your physiotherapist. I would also put a heating pad on that hip. Some people find ice packs helpful, either alone or alternating with heat (don't apply ice for longer than 15 minutes per hour). You can also visualize a soothing color like blue running up and down your spine and through your joints, that sometimes helps me. Won't hurt to try.

                        Generally, cord pain is constant and burning - peripheral nerve pain tends to be burn and sting and be more localized, and it comes and goes. But that's one of the maddening things about SCI, there can be different presentations of these things. When you see your neurologist on June 12 (or earlier, I hope), ask him what he thinks about your particular pain levels and locations - make note of things like times of day and activities that seem to make things better or worse.

                        Things are okay here, knock wood - took a little drive this morning and saw 3 deer with their fawns! Really brightened my day.
                        MS with cervical and thoracic cord lesions

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                        • #27
                          Originally posted by Bonnette View Post
                          Jade, I'm so glad you got some help from your GP! Wouldn't your MRI images be accompanied by a written report by a radiologist? That's how it is over here, maybe it's different in England.

                          Clicking sounds like a ligament problem. It would be a good idea to abstain from activity until you know for sure - wouldn't want to exacerbate it in an effort to make things better (I've done that so many times, it isn't even funny - trying to power through injuries doesn't work). Meditating it out does seem like the best approach, until you see either the doctor or your physiotherapist. I would also put a heating pad on that hip. Some people find ice packs helpful, either alone or alternating with heat (don't apply ice for longer than 15 minutes per hour). You can also visualize a soothing color like blue running up and down your spine and through your joints, that sometimes helps me. Won't hurt to try.

                          Generally, cord pain is constant and burning - peripheral nerve pain tends to be burn and sting and be more localized, and it comes and goes. But that's one of the maddening things about SCI, there can be different presentations of these things. When you see your neurologist on June 12 (or earlier, I hope), ask him what he thinks about your particular pain levels and locations - make note of things like times of day and activities that seem to make things better or worse.

                          Things are okay here, knock wood - took a little drive this morning and saw 3 deer with their fawns! Really brightened my day.
                          awwww I always love reading your replies Bonnette! that's super cool that you saw deers and fawns! you guys must have pretty awesome outdoors over there! so jealous
                          yeah I tried training a lot as I thought I was doing the spine a lot of good, but that doesn't seem to be the case unfortunately, it was a hard lesson to learn eheh.
                          my pain is not constant, it comes and goes, and it sort of changes places from time to time, so it feels really confusing! maybe it really is due to some hip problem! I guess we'll have to wait and see.
                          thanks for the meditation advice! I also have an app, it's called headspace, it's really good! but I like the idea of visualising the colour going in my spine, as sometimes with headspace they tell you to do a body scan, and that's when I start thinking even more of the problematic parts of my body!

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                          • #28
                            Where I live, the human population is pushing wildlife out of their natural habitats, so the animals are coming closer to town looking for food - it's sad, and at the same time it's thrilling to see deer up close. Especially when they have fawns! There's almost nothing so adorable.

                            The Headspace app sounds good, I'm going to look into that. I remembered something else that I used to do with acute injuries, it involves visualizing the area of pain and then progressively focusing on the spaces between bones, muscles, ligaments, tendons, connective tissues, and finally cells - seeing the anatomy as spacious spreads out and thins the pain message. There are some books and CDs about it, but you don't need them - it just boils down to visualization, no fuss or muss.

                            It is incredibly irritating to be unable to pinpoint and analyze what's causing pain. I don't put much faith in doctors' ability to do that either, frankly, but I do give the experienced ones credit and the MRI is a great tool. I hope along with you that your physio appointment next week will be enlightening!
                            MS with cervical and thoracic cord lesions

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                            • #29
                              Good dialogue here. Watching how things progress. Hang in there Jade2.
                              I refuse to tip toe through life, only to arrive safely at death.

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                              • #30
                                A GP can't usually compare images- not trained as specialist or radiologist. The hospital does not call you results, they send it to the ordering doctor who is supposed to give you results. If an emergency or something surgical he would most likely call you asap. The radiologist compares with previous scan and writes his impression at the end of his report.. The doctor who ordered the scan, specialist,, can compare and tell you what to do. If you haven't heard, make an appointment to discuss the results.
                                Are you on an anti-inflammatory such as Naproxen or Ibuprofen. Might just be inflammation which lasts for quite a while after surgery.
                                CWO
                                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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