Announcement

Collapse
No announcement yet.

In a really bad place right now

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

  • #16
    Originally posted by Jade2 View Post
    ...Anyway I got in touch with my friend, and she is gonna send me a sheet with recommendations on what to do when having moments of terror/dissociation and stuff like that, and I’ll post them here!
    Thank you so much, Jade, that will be really helpful to me and to so many of us. I'm hyper-aware of the need to nip fear in the bud when there's nothing I can do to change the things I'm worried about. It's the human condition, I guess, compounded by the instability of the world right now - kind of a perfect storm.
    MS with cervical and thoracic cord lesions

    Comment


    • #17
      Hope you get an accurate diagnosis tomorrow, or at least an explanation that makes sense - followed by the correct tests, if further workup is needed. Keep us posted.
      MS with cervical and thoracic cord lesions

      Comment


      • #18
        Originally posted by Bonnette View Post
        Hope you get an accurate diagnosis tomorrow, or at least an explanation that makes sense - followed by the correct tests, if further workup is needed. Keep us posted.
        Hi! Yes, I have prepared all my notes and a timeline of symptoms and questions! All written down, the doctor won’t escape me!!!

        I will report back tomorrow afternoon, fingers crossed!!!

        Comment


        • #19
          Originally posted by Jade2 View Post
          Hi! Yes, I have prepared all my notes and a timeline of symptoms and questions! All written down, the doctor won’t escape me!!!

          I will report back tomorrow afternoon, fingers crossed!!!
          Good deal!! I'll be thinking about you, hoping for a smooth and HELPFUL flow of communication between you and the doctor.
          MS with cervical and thoracic cord lesions

          Comment


          • #20
            So, I have seen the doctor.

            I have finally seen the doctor for my follow up.

            i tld him all my symptoms, and that I didn?t have a lot of the symptoms I have now before the surgery, and he has admitted that maybe the su very did indeed upset my spinal cord.

            my symptoms have been partially helped by physiotherapy, as in the pain has diminished, and some weird sensations have gone. In addition to that, some numbness seems to be gone, but I think I have some sexual dynsfunction going, which I didn?t have 2 months post operation. But at this point I don?t even know how much is due to stress, I don?t know.

            the MRI shows that the cord is not compressed, just displaced anteriorly by the cyst, and there is no cord signal change, so they can?t see damage, and has been stable in the same position since the operation.

            The doctor said that my symptoms come and go, and that is due to slight changes in the cerebro spinal fluid pressure within the memebrane that encases it.

            He said that evens light light changes in pressure can ?upset the cord?, causing my symptoms.

            he said I cannot do scuba diving (sad, as I got my open water certificate last summer in Fiji and loved it!) because it involves a change in pressure, and that I cannot train with heavy weights, (and then gave me a look up and down and said ?but I don?t think you do that anyway?)!

            he said to lead a completely normal life, enjoy the summer and not put myself in a horrible state, that this is a benign condition.


            however, if I get much worse I need to go back and I?ll see him in 4 months time anyway.

            Then, he?s prescribed me some urological tests to see if I have problems down there, since I told him that sometimes I pee and then 20 minutes later I pee again and it feels like burning.

            All in all he said ?it?s not like you?re horribly disabled, you are walking about perfectly normal, so be happy, most people don?t even notice they have these things?

            i told him about my suspicions that there was there was something in the lower spine, since exercising the lower spine makes some pain go away, but he said that according to the MRI in November, my lumbar spine is totally fine, plenty of space for the roots.

            He said I?m too young to undergo a major spinal surgery (31) and that the procedure they did was very minimal, and they won?t do anything more radical unless I?m feeling a lot worse than now.

            Then he went on about how sometimes nature heals itself (lol what?)

            so basically that?s it guys, the cyst is here to stay, I just have to live with it apparently, am doing pray that it doesn?t get worse.

            Man I feel like shit right now...

            Comment


            • #21
              Might I suggest that your mind is causing a lot of your problems? I know you know the problem is there, and I bet you're doing a lot of research on it, right? That will lead to a lot emotional stress leading you to believe the worst mentally, and "physically". This has happened to me in the past, that's why I feel it's worth mentioning.

              It sounds like this was rather good news. Take a deep breath, stay off the internet, and live.

              Good luck to you.
              Rollin' since '89. Complete C8

              Comment


              • #22
                Originally posted by Crappler View Post
                Might I suggest that your mind is causing a lot of your problems? I know you know the problem is there, and I bet you're doing a lot of research on it, right? That will lead to a lot emotional stress leading you to believe the worst mentally, and "physically". This has happened to me in the past, that's why I feel it's worth mentioning.

                It sounds like this was rather good news. Take a deep breath, stay off the internet, and live.

                Good luck to you.
                hey crappler, yeah I have done tons of research, it’s driving me insane. I guess you do have a very valid point here, and that I should try and make the most of my life, especially cause you never know what’s next.

                I will try, I promise! Thanks for the encouragement, and good luck to you too!

                Comment


                • #23
                  Do you mean that the cyst has actually returned, and the recurrence is displacing the cord? I thought he removed the cyst and told you there was no reason why it should come back. Well, at any rate, what he said sounds reasonable to me and you'll have the comfort of knowing that you are scheduled to see him again in four months. He's absolutely correct that even very troubling symptoms can heal naturally (though it might take a long time) and disappear. I think he's given you sound medical and lifestyle advice.
                  MS with cervical and thoracic cord lesions

                  Comment


                  • #24
                    Originally posted by Bonnette View Post
                    Do you mean that the cyst has actually returned, and the recurrence is displacing the cord? I thought he removed the cyst and told you there was no reason why it should come back. Well, at any rate, what he said sounds reasonable to me and you'll have the comfort of knowing that you are scheduled to see him again in four months. He's absolutely correct that even very troubling symptoms can heal naturally (though it might take a long time) and disappear. I think he's given you sound medical and lifestyle advice.
                    so basically, he said that yes it has re-accumulated, even though it’s not actually compressing the cord this time, but merely displacing it in the front part of the space. The thing though is that it hasn’t changed since mid december, I have had 4 MRIs and they all look exactly the same!

                    The reason why it has re-accumulated is that the cyst spans 6 vertebral bodies, from t4 to t10, so they obviously couldn’t open 6 vertebraes to get rid of it, so what they did is they opened one level only and made a hole in the wall of the cyst in order to make it communicate it with the rest of the subarachnoid space, so that the fluid would flow in and out easily, not causing any pressure on the cord.

                    The problem with these cysts though, is that the arachnoid membrane is very good at sealing itself off (which in most cases is a good thing, since we don’t want to have a break in the membrane that doesn’t easily heal, otherwise there could b3 serious loss of Cerebro spinal fluid), therefore the cyst can re accumulate easily. Fun times!

                    And yes, when I was in the hospital, the doctor said that there is no reason why it should return, so I questioned the doctor I saw today about it, and he said “well you were probably very worried and they wanted to reassure you”, so basically....they lied????

                    So in in the end I asked him ok how did it accumulate so fast, and he said there is likely to be a mono directional sorto of valve that lets liquid in easily but not out that easily.

                    essentially they don’t want to open me up again cause the risk of paralysis apparently is not worth it. I wonder where they draw the line in terms of quality of life/risk.

                    Oh well.... nothing much I can do I guess....

                    Comment


                    • #25
                      Although I’m pretty pissed off that they lied to me just to get me to calm down! Who even does that? And this is supposed to be one of the best hospitals in the world! And how do I know the guy is not lying now as well? Oh god!

                      Comment


                      • #26
                        I am new here and a caregiver/spouse only. My wife had an epidural abscess in the T5-T9 area. I sought out this site because we have been doing so poorly. At first I was intimidated by how strong some people are. This site seems to be populated by amazingly mentally strong people. But strangely, seeing your posts comforted me because I see that there are others struggling terribly. They say misery loves company. I never knew what that meant. Now I understand. At least I think I do. It gives me encouragement to know that my wife and I aren?t the only ones who can?t just bear the brunt of terrible adversity. And knowing that is a lifeline. I hope in some way you feel that lifeline. Hold on to it.

                        Comment


                        • #27
                          I see the dilemma, for you and the doctor - but honestly, Jade, I think that he did you a great service by not putting you at massive risk by doing major surgery. I understand the principle of the ball-cock valve mechanism of the cyst and its reaccumulation, because the same sort of thing happens with Tarlov's cysts - I have five of them on my sacrum, and sometimes they are very symptomatic; at other times, they spontaneously drain a bit and I can ambulate better. Arachnoid cysts are a different animal, but the fluid accumulation process is similar and so are the risks of surgery.

                          They did indeed basically lie to you after the first procedure - they should have told you the truth, so that your anxiety wouldn't skyrocket if you noticed the symptoms returning. By not fully discussing possible outcomes, they set you up to feel lonely and isolated, like a stranger in a strange land. Now you know more and you're having to readjust to a new set of facts, which understandably makes you hyperaware and worried.

                          Bottom line, though - your surgeon sounds like a wise and prudent physician who has your best interest at heart. He'll follow your progress and make treatment recommendations in real time, thereby sparing you unnecessary suffering and the true horror of seizing in panic on a dangerous course. It's hard to deal with uncertainty, no question about it - but you'll find ways to cope, now that you've talked to the doctor and he's answered your questions in a reasonable way. Everyone with SCI must learn to juggle anxiety, hope and fear, there is just no way around it - when the doctor told you to live your life, he was giving you the best advice that any of us can hear. I'm not being glib. He's given you permission to carry on, and you have it in you to do that. (((Jade)))
                          MS with cervical and thoracic cord lesions

                          Comment


                          • #28
                            Originally posted by Crannible View Post
                            I am new here and a caregiver/spouse only. My wife had an epidural abscess in the T5-T9 area. I sought out this site because we have been doing so poorly. At first I was intimidated by how strong some people are. This site seems to be populated by amazingly mentally strong people. But strangely, seeing your posts comforted me because I see that there are others struggling terribly. They say misery loves company. I never knew what that meant. Now I understand. At least I think I do. It gives me encouragement to know that my wife and I aren?t the only ones who can?t just bear the brunt of terrible adversity. And knowing that is a lifeline. I hope in some way you feel that lifeline. Hold on to it.
                            Hi there, yeah I don’t feel strong at all! And I’m quite miserable at the moment, just like you guys. What is an epidural abscess? How does that happen? I’m glad to be of help at least to you guys, even in this horrible condition, and I too have felt very lonely with it all. Are you guys in the UK? I feel pretty isolated cause no one I know in real life is going through this thing, somthey all tell me to hang in there but the truth is they’ve never had to deal with the problem I have, so I don’t take them very seriously.

                            Comment


                            • #29
                              Originally posted by Bonnette View Post
                              I see the dilemma, for you and the doctor - but honestly, Jade, I think that he did you a great service by not putting you at massive risk by doing major surgery. I understand the principle of the ball-cock valve mechanism of the cyst and its reaccumulation, because the same sort of thing happens with Tarlov's cysts - I have five of them on my sacrum, and sometimes they are very symptomatic; at other times, they spontaneously drain a bit and I can ambulate better. Arachnoid cysts are a different animal, but the fluid accumulation process is similar and so are the risks of surgery.

                              They did indeed basically lie to you after the first procedure - they should have told you the truth, so that your anxiety wouldn't skyrocket if you noticed the symptoms returning. By not fully discussing possible outcomes, they set you up to feel lonely and isolated, like a stranger in a strange land. Now you know more and you're having to readjust to a new set of facts, which understandably makes you hyperaware and worried.

                              Bottom line, though - your surgeon sounds like a wise and prudent physician who has your best interest at heart. He'll follow your progress and make treatment recommendations in real time, thereby sparing you unnecessary suffering and the true horror of seizing in panic on a dangerous course. It's hard to deal with uncertainty, no question about it - but you'll find ways to cope, now that you've talked to the doctor and he's answered your questions in a reasonable way. Everyone with SCI must learn to juggle anxiety, hope and fear, there is just no way around it - when the doctor told you to live your life, he was giving you the best advice that any of us can hear. I'm not being glib. He's given you permission to carry on, and you have it in you to do that. (((Jade)))
                              Wow I have never heard of tarlov cysts! Sorry to hear that you have those. Are they due to the MS, or are they just another random “gift” of destiny? I have noticed that symptoms change day to Day and sometimes quite dramatically, so probably this bloody thing does drain a little bit every once in a while. I was thinking maybe the valve might break at some point, varicose veins style? If that happens, it might solve the problem? I know I shouldn’t speculate, but it gives me some hope...

                              Comment


                              • #30
                                Hey. I hope my post made sense and had some value. My wife had sepsis. A blood infection - staph. She spent 12 days on her back in the hospital before somebody finally figured out that the infection had spread to her spine and created a large mass of infected tissue which pressed against the spinal cord. She had an emergrncy laminectomy to relieve the pressure. She came out of it unable to use her legs, bladder, bowels. She is doing well in rehab including some walking but many issues remain.

                                I am not in England (but my wife and I majored in English lit in college).

                                Sometimes, as sick as it sounds, I think you have to think about the people who are worse off than you to lessen your pain Otherwise, you eat yourself alive seeing smiling happy people everywhere, young pregnant women, couples kissing, kids romping around, people laughing - when you are anhedonic, I.e. you feel no pleasure, even in things you loved. I am a gardener and I watched Spring go by out my window with no joy. I had a house filled with orchids and I threw them out. Suddenly too much work. I am trying to survive. My wife has said more than once, that she wished she hadn’t survived the surgery. This is bad. We take meds for anxiety, her for depression. You/we have to fight on. Things do get better.

                                Comment

                                Working...
                                X