Page 3 of 4 FirstFirst 1234 LastLast
Results 21 to 30 of 40

Thread: In a really bad place right now

  1. #21
    Senior Member
    Join Date
    Apr 2012
    Location
    Orlando, FL
    Posts
    710
    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

  2. #22
    Quote 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!

  3. #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

  4. #24
    Quote 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....

  5. #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!

  6. #26
    Junior Member
    Join Date
    Jun 2018
    Location
    Arlington Heights Illinois
    Posts
    15
    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.

  7. #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

  8. #28
    Quote 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.

  9. #29
    Quote 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...

  10. #30
    Junior Member
    Join Date
    Jun 2018
    Location
    Arlington Heights Illinois
    Posts
    15
    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.

Similar Threads

  1. Looking for place
    By tyvin in forum Personals
    Replies: 0
    Last Post: 05-17-2010, 04:17 AM
  2. About Carrying MRSA From Place to Place
    By betheny in forum Care
    Replies: 1
    Last Post: 07-17-2008, 07:27 PM
  3. Replies: 0
    Last Post: 06-13-2003, 01:15 PM
  4. Replies: 3
    Last Post: 12-06-2001, 10:02 AM

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •