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Thread: In a really bad place right now

  1. #31
    Quote Originally Posted by Crannible View Post
    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.
    hi, yes, it made a lot of sense. Wow I am really sorry to hear about your ordeal, it does sound horrendous and very sudden to be honest. I had the same, very healthy until 8 days prior, just come back for a year of travelling the world (thank god I did that!), then all of a sudden symptoms started, went to hospital, had MRI and bam!!! Emergency surgery. I am 31.
    And I was rock climbing, scuba diving, river rafting, and jungle surviving before all this shitstorm started.

    Sometimes i I still can’t believe this happened to me!

    I was thinking, if you guys or anyone else would like, we could exchange Skype addresses? I don’t know, I’m thinking sometimes a chat with someone who can get what We’re going through would do me good, and maybe you as well? I understand if you find that inappropriate for any reason.

  2. #32
    And I can totally relate to not feeling happy when you see people enjoying themselves, as much as I feel like a piece of shit for saying it. Mind you, I would never wish my problems on them, never in a million years, but it does make me depressed to see that other people are so happy when I’m so miserable.

  3. #33
    Junior Member
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    Jun 2018
    Location
    Arlington Heights Illinois
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    Of course we have to look for answers to our problems as well. I know this site can provide plenty of solutions to problems you will encounter medically, with equipment, etc. But having people tell you to get over it or to point out how much there is to be happy about - or to try to solve your problems for you when you havent asked...not good.

    The Skype thing sounds like a grand idea. However with me you are dealing with an older guy who doesn’t even know how to use Skype and drives around with boxes of incontinent pads in the back seat of his car. Also, more seriously, my wife is still in denial. She has allowed no visitors except me ( and our grown son twice). She is not into support groups and I am her caregiver. I think you should do it for sure and if I’m still here down the road maybe I can join you.

    What is your diagnosis? How are you affected? Is it progressive?

    Be safe.

  4. #34
    Quote Originally Posted by Jade2 View Post
    Are they due to the MS, or are they just another random ?gift? of destiny?
    Another gift of destiny! I've never heard of cyst valves breaking, but maybe they can...why not, after all?
    MS with cervical and thoracic cord lesions

  5. #35
    wow what an ordeal! you have been thru alot! be glad your walking is right!! yes you have issues but again be glad your still able to walk. T6 para here from an aortic aneurysm surgery that cut off blood supply to my cord 10 years ago in july. and will eventually need more extensive vascular surgery but as my surgeon has said we aren't going to do anything as long as your stable right now. it is coming however and we both know it!
    T6 Incomplete due to a Spinal cord infarction July 2009

  6. #36
    Quote Originally Posted by Crannible View Post
    Of course we have to look for answers to our problems as well. I know this site can provide plenty of solutions to problems you will encounter medically, with equipment, etc. But having people tell you to get over it or to point out how much there is to be happy about - or to try to solve your problems for you when you havent asked...not good.

    The Skype thing sounds like a grand idea. However with me you are dealing with an older guy who doesn’t even know how to use Skype and drives around with boxes of incontinent pads in the back seat of his car. Also, more seriously, my wife is still in denial. She has allowed no visitors except me ( and our grown son twice). She is not into support groups and I am her caregiver. I think you should do it for sure and if I’m still here down the road maybe I can join you.

    What is your diagnosis? How are you affected? Is it progressive?

    Be safe.
    hey, yes no problem at all, you guys take the time you need and if you wish I am here.

    so basically it's a cyst, specifically intradural arachnoid cyst, which is a thing full of CSF that was compressing my spine from approximately t4 to t10. apparently I had it all my life and it never gave symptoms, until I got to 31! the doctor said my spine was a bit squashed. especially at t8. so when I went to A&E (or ER I think in the US), they gave me an MRI, even though the doctor was even reluctant to do that since at the end of the day I was walking fine and didn't seem to have any neurological deficits, but still had pains and weird sensations. from what the doctor had said to me, it seemed that I was fine and was only just worrying too much - I am a massive hypochondriac after all! - but then they came back with the results straight away and told me they were transferring me via ambulance to King's college hospital for urgent decompression surgery. I was utterly terrified. I had been completely healthy up until that point, and I had always tried to eat my salad and my 5 fruit and veg a day, exercise, etc.
    so anyway the operation went well and they decompressed the spine, and within 4 days I was sent home with no restrictions! I had pains and strange feelings here and there but I was told they were normal because of the procedure, and they would subisce. which they did in about 2 months. but then things started getting worse again, and now I have a completely different set of symptoms, stil neurological but in different places, and different intensity.

    anyway, my condition might get worse, or it might stay stable, the doctor said the cyst probably re accumulated and even small differences in pressure "upset" my spine apparently. they said the thoracic spine is particularly sensitive to changes in pressure! so yeah, basically we keep this under control, and I can't do heavy weight lifting and straining things.

    I understand how you wife feels. it's hard to relate to other people when you are in this mess, thank god she has you.

    I also have a very supportive boyfriend, who tries to cheer me up every single day, but it is hard. if I didn't have him, I probably wouldn't be alive at this point, as I have a horrible family who pushed me to suicide many times before, and thank god they are in another country right now and we don't see each other very often.

  7. #37
    Quote Originally Posted by Smashms View Post
    wow what an ordeal! you have been thru alot! be glad your walking is right!! yes you have issues but again be glad your still able to walk. T6 para here from an aortic aneurysm surgery that cut off blood supply to my cord 10 years ago in july. and will eventually need more extensive vascular surgery but as my surgeon has said we aren't going to do anything as long as your stable right now. it is coming however and we both know it!
    yeah I'm super glad I can walk and don't need that kind of assistance from anyone, as my family is a bunch of shits really, so if I had to rely on them it would really be the end for me.

    really sorry about your injury mate, it doesn't sound fun at all and it's not even due to an accident, that for me in itself makes me so mad about my thing. it just happened basically. it sucks.

    I always feel a bit guilty about the fact that there are so many people in chairs, and if you looked at me from the outside you wouldn't even know I have a problem. but on the other hand, I have these weird symptoms and I kinda know it's not gonna get any better with age, but since people see me walking around, they don't give me that much sympathy.

    for me, I guess if I had grown up in a normal family and I had had a normal childhood and adolescence, I would be taking this problem a lot differently. but man, I had literally less than 10 years of normalcy in my life, and now I've been slammed back to the ground again...

  8. #38
    Quote Originally Posted by Bonnette View Post
    Another gift of destiny! I've never heard of cyst valves breaking, but maybe they can...why not, after all?
    ah crap. that's no good! so sorry to hear that

    but yes, basically these valves are like the valves that are in the veins in the legs. they allow blood to flow in one direction only, but with constant use, they get less efficient and they leak, causing the blood to flow back to the bottom of the legs, hence varicose veins. well, I think the same might happen for cyst valves. at the end of the day, everything breaks!

  9. #39
    Quote Originally Posted by Jade2 View Post
    ah crap. that's no good! so sorry to hear that

    but yes, basically these valves are like the valves that are in the veins in the legs. they allow blood to flow in one direction only, but with constant use, they get less efficient and they leak, causing the blood to flow back to the bottom of the legs, hence varicose veins. well, I think the same might happen for cyst valves. at the end of the day, everything breaks!
    That makes perfect sense!
    MS with cervical and thoracic cord lesions

  10. #40
    Junior Member
    Join Date
    Jun 2018
    Location
    Arlington Heights Illinois
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    15
    It sounds like you have good reasons to remain hopeful.

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