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  1. #31
    Update:

    A lot has changed since my last post. Went back to Buffalo for another MRI (so far 1000 out of pocket). Results came back the next day and were sent off to a neurosurgeon in the Caymen Islands.

    "From the Heart" Documentary - YouTube

    The surgeon is calling me today and will require a couple more tests that will be covered by OHiP (Brain/Spinal Cord scan).

    I guess finally this MRi shows what is causing my pain and loss in mobility. Something about the ligaments or disks pressing on my spinal cord. Progressively getting worse and that is ehy I am losing my mobility.

    I no longer have "good" days; everyday is filled with pressure and pain. I have been prescribed morphine and obviously cannot work now.

    WSIB seems like I will be compensated with loss of wage but I need to get the final ok from them. Work is trying to get me in for modified duties ie. prance me around in front of all the other workers and try to embarrass me. Obviously I can't even do that on heavy pain medication so I declined.

    I have been deemed disabled while awaiting surgery. In Canada it would take up to 2 years to get it done unless I either become paralyzed or lose control of my bowels. I refuse to wait for that so I am going overseas and paying for the surgery.

    I feel useless to my family and a failure as a husband and father.

    Hopefully I can get this over with and start the healing process in a month or so... The cost is around 10 grand which is nothing to get my life back.

    After the surgery I am going back to self employment as I cannot do manual labour as a career for the rest of my life.

    Finally I see the end to this nightmare.
    KEEP FIT AND HAVE FUN.

  2. #32
    I hope everything works out for you very soon. At least you are using your own will and taking action on your own which many people would never even consider.

    Someone at your work is obviously an idiot and worth nothing so just ignore all that BS.

    Remember, no matter how you feel right now that you are not useless to your family or a failure as a husband or father. You will overcome this and be even better to them more than ever once you have recovered. Your family will always love you unconditionally and they are there for you.
    Hi

  3. #33
    Update:

    Wsib loss of wage has been approved and my employer isnt happy. Theybare appealing the decision I guess so for the time being I will keep getting 80% of my wage and 20% from ccp disability and ei injury payments.

    Big weight off my shoulders I feel like I am finally getting somewhere ij my recovery and this is a huge help.

    I keep losing mobility and now my left side has bulged too at the saccrum so thats 3 bulged disks that press on spinal nerves when I walk.
    Hard for me to pee now and randomly stops midstream... this can become perminent if not taken care of quickly.

    EMG and Xrays tomorrow ehich will dictate our next steps.

    I cant seem to file my health benefit claims I wonder if my employer is blocking me from doing so. At least I will be able to paybfor surgery when the day arrives (without selling my investments).

    The pain is terrible but it has been nice to see my daughter more often. I feel so bad for, and have gained so much respect for my wife. I owe her bigtime for dealing with my inabilities... I owe her bigtime after this is over with.

    Anyone else have the same issue with a wsib appeal and know what is involved on my end. apparently its wise for me to participate.
    KEEP FIT AND HAVE FUN.

  4. #34
    PhysioLifter's Avatar
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    Quote Originally Posted by Onterrible View Post
    Update:

    Wsib loss of wage has been approved and my employer isnt happy. Theybare appealing the decision I guess so for the time being I will keep getting 80% of my wage and 20% from ccp disability and ei injury payments.

    Big weight off my shoulders I feel like I am finally getting somewhere ij my recovery and this is a huge help.

    I keep losing mobility and now my left side has bulged too at the saccrum so thats 3 bulged disks that press on spinal nerves when I walk.
    Hard for me to pee now and randomly stops midstream... this can become perminent if not taken care of quickly.

    EMG and Xrays tomorrow ehich will dictate our next steps.

    I cant seem to file my health benefit claims I wonder if my employer is blocking me from doing so. At least I will be able to paybfor surgery when the day arrives (without selling my investments).

    The pain is terrible but it has been nice to see my daughter more often. I feel so bad for, and have gained so much respect for my wife. I owe her bigtime for dealing with my inabilities... I owe her bigtime after this is over with.

    Anyone else have the same issue with a wsib appeal and know what is involved on my end. apparently its wise for me to participate.
    do you have the dictation report of your recent MRI?? was it ligamentum flavum buckling causing the collapse?? this is good educational information

  5. #35
    Update:

    So I have a doctor saying he believes the bulging disks arent causing the terrible pain and mobility issues he believes it is sacroiliatitus (beginning symptoms of ankylosing spondylitis which i have been diagnosed with years ago) via a painfil positive approximation test (sacroiliac compression). I had a full spinal xray and it showed massive erosion of the sacroiliac joint and calcification and fusion of the posterior sacroiliac joint. I have lost much mobility of that joint and ligament is turning to boney protuberance within the capsule.

    I have been referred to a rhumatologist and was given a prednisone acetate injection into the joint today which helped dull the pain a bit... I will most likely be prescribed a biologic so I dont end up with a fused spine.

    My doctor isnt sending these notes to wsib so I can still call this a workplace injury and collect a full wage while I figure out my next steps of treatment and get me to a condition that I can work again. Back to self employment and taking life a bit slower now as this disease can turn me into a hunchback if not treated early.

    Also seeing an orthopedic surgeon next week.

    The medication is immunosuppressant so it increases the risks of everything including cancer.

    I will roll the dice on that to get my quality of life and mobility back.

    Going off wsib in aug. and going back to sports therapy. Me and my family would be screwed if my doctor didnt pull these strings.
    Last edited by Onterrible; 06-14-2018 at 10:03 PM.
    KEEP FIT AND HAVE FUN.

  6. #36
    Quote Originally Posted by Onterrible View Post
    Update:

    So I have a doctor saying he believes the bulging disks arent causing the terrible pain and mobility issues he believes it is sacroiliatitus (beginning symptoms of ankylosing spondylitis which i have been diagnosed with years ago) via a painfil positive approximation test (sacroiliac compression). I had a full spinal xray and it showed massive erosion of the sacroiliac joint and calcification and fusion of the posterior sacroiliac joint. I have lost much mobility of that joint and ligament is turning to boney protuberance within the capsule.

    I have been referred to a rhumatologist and was given a prednisone acetate injection into the joint today which helped dull the pain a bit... I will most likely be prescribed a biologic so I dont end up with a fused spine.

    My doctor isnt sending these notes to wsib so I can still call this a workplace injury and collect a full wage while I figure out my next steps of treatment and get me to a condition that I can work again. Back to self employment and taking life a bit slower now as this disease can turn me into a hunchback if not treated early.

    Also seeing an orthopedic surgeon next week.

    The medication is immunosuppressant so it increases the risks of everything including cancer.

    I will roll the dice on that to get my quality of life and mobility back.

    Going off wsib in aug. and going back to sports therapy. Me and my family would be screwed if my doctor didnt pull these strings.
    Sorry to hear about your condition brother! I was diagnosed a combination of AS and Psoriatic arthritis approximately 15 year ago. I've been on a biologic medication now for the last 10 years and it's been life changing for me. I was lucky enough to get diagnosed early and have very little damage to the thoracic spine, however my left hip was already severely damaged and I do need a hip replacement which I'm planning for early next year.
    I would highly recommend trying a biologic medication. The major side effect is a lowered immune response causing me to experience more frequent colds, sinusitis, and infections in general. I just recently had a fairly severe infection in my big toe and I ended up in emergency on iv antibiotics for five days. But overall, biologic medications have been life savers for many people i know.
    They are outrageous expensive and hopefully you have a good insurance plan to cover the cost


    Sent from my D5803 using Tapatalk

  7. #37
    Quote Originally Posted by beothuk View Post
    Sorry to hear about your condition brother! I was diagnosed a combination of AS and Psoriatic arthritis approximately 15 year ago. I've been on a biologic medication now for the last 10 years and it's been life changing for me. I was lucky enough to get diagnosed early and have very little damage to the thoracic spine, however my left hip was already severely damaged and I do need a hip replacement which I'm planning for early next year.
    I would highly recommend trying a biologic medication. The major side effect is a lowered immune response causing me to experience more frequent colds, sinusitis, and infections in general. I just recently had a fairly severe infection in my big toe and I ended up in emergency on iv antibiotics for five days. But overall, biologic medications have been life savers for many people i know.
    They are outrageous expensive and hopefully you have a good insurance plan to cover the cost


    Sent from my D5803 using Tapatalk
    my father and grandmother(late) have/had severe cases. My father was self employed and I guess what happened is the doctor enrolled him in a few studies that now they give him the medication for free for the rest of his life... it would be 25k/year is they didnt do that for him.

    My wife and I both have insurance plans that cover the medication.

    My hip appears that surgery is a possibility but we will see. Mine was slower to manifest because I have always been active but if I go by my father's progression it is good we caught it early.

    Thanks for the post brother I actually don't know (never met) a yone around my age with this specific condition. I was genetic screened to have the gene HLA-B27 at age 12 which is present in 90% of cases and gives me a 50% chance of presentimg symptoms.
    KEEP FIT AND HAVE FUN.

  8. #38
    PhysioLifter's Avatar
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    Quote Originally Posted by Onterrible View Post
    Update:

    So I have a doctor saying he believes the bulging disks arent causing the terrible pain and mobility issues he believes it is sacroiliatitus (beginning symptoms of ankylosing spondylitis which i have been diagnosed with years ago) via a painfil positive approximation test (sacroiliac compression). I had a full spinal xray and it showed massive erosion of the sacroiliac joint and calcification and fusion of the posterior sacroiliac joint. I have lost much mobility of that joint and ligament is turning to boney protuberance within the capsule.

    I have been referred to a rhumatologist and was given a prednisone acetate injection into the joint today which helped dull the pain a bit... I will most likely be prescribed a biologic so I dont end up with a fused spine.
    Oh @Onterrible
    That is a game changer
    I feel so so bad for you and my heart aches. AS is a nasty nasty condition that is so debilitating and I can clearly understand and sympathise with your pain. No wonder you are completely destroyed, and having the inflammatory reaction to the disc herniation years ago has created this crazy cascade effect.

    Seriously man...you have such deep respect from me for getting through this, and what you're going to go through in life. Power on, get medically looked after, keep it all under pain control, and never stop moving forward. AS can be mitigated so much better now compared to even two decades ago...but jesus...my heart goes out to you.

  9. #39
    Quote Originally Posted by Onterrible View Post
    my father and grandmother(late) have/had severe cases. My father was self employed and I guess what happened is the doctor enrolled him in a few studies that now they give him the medication for free for the rest of his life... it would be 25k/year is they didnt do that for him.

    My wife and I both have insurance plans that cover the medication.

    My hip appears that surgery is a possibility but we will see. Mine was slower to manifest because I have always been active but if I go by my father's progression it is good we caught it early.

    Thanks for the post brother I actually don't know (never met) a yone around my age with this specific condition. I was genetic screened to have the gene HLA-B27 at age 12 which is present in 90% of cases and gives me a 50% chance of presentimg symptoms.
    I didn't realize you have substantial knowledge of the disease, hell you probably know more about it that I, lol
    I was similar to your father in that I was part of a clinical trial and now fortunately they provide the drug free of charge. Otherwise I wouldn't have been able to afford it.
    I also tested positive for the gene HLA-b27 in my mid twenties
    Best of luck with everything brother!

    Sent from my D5803 using Tapatalk
    Last edited by beothuk; 06-15-2018 at 11:37 PM.

  10. #40
    Quote Originally Posted by beothuk View Post
    I didn't realize you have substantial knowledge of the disease, hell you probably know more about it that I, lol
    I was similar to your father in that I was part of a clinical trial and now fortunately they provide the drug free of charge. Otherwise I wouldn't have been able to afford it.
    I also tested positive for the gene HLA-b27 in my mid twenties
    Best of luck with everything brother!

    Sent from my D5803 using Tapatalk
    you too friend I will keep you posted on what my rhumatologist says. I have questions about biologic medication etc. I mailed you my contact.
    KEEP FIT AND HAVE FUN.

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