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  • Arachnoiditis has taken over my life

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    Old 04-26-2014, 02:35 PM   #1
    Rita83
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    Arachnoiditis has taken over my life

    My name is Rita. I have been living with arachnoiditis for about 5 years now. After 6 failed spinal cord surgeries for a tethered spinal cord and tumors, I was left even more disabled. After lots of PT, I am able to walk but have been left with loss of bowl and bladder function and severe pain around the clock due to severe arachnoiditist. The words "I wanna die" have become a part of my vocabulary. I love my family and don't really want to die, but I don't know what else to do because the pain is unbearable. I would love to hear the treatment options that are out there because we are considering one last surgery on May 12th 2014. That which would be a (cordodomy sp?) Has anyone heard of or had this surgery. Any help would be appreciated.

    Last edited by Administrator; 04-27-2014 at 08:07 AM.

     
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    Old 04-26-2014, 06:33 PM   #2
    gmak
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    Re: Arachnoiditis has taken over my life

    Dear rita, I am so very sorry that you are hurting so extremely much! I have adhesive arachnoiditis too from L1 - S1, empty sac & tethered cord. At age 26 i was injured & had pantopaque myelogram & then had 2 lum laminectomies with CSF leaks & dural grafting then 7 years later had 2 more lum lams, foramenectomies, dural grafting again. i was in massive severe chronic pain and started pain mgmt & was diagnosed with FBSS for 20+ years. finally told i had arach in 2012 it had showed on my MRI in 1988 but no dr ever told me. 3 spine neurosurgeons told me then i could never have surgery or any invasive spine procedures again because the pain could actually become greater unless it was an emergency then surgery would be done but didnt tell me what the emergency was defined as, it could be the cordotomy that they were referring to. I didnt want to bore you with my details except so that you could know i share in this cruel ravaging condition too, hurt beyond comprehension & i understand how you are feeling, My treatment for the severe pain is fentanyl patches, long acting morphine & lyrica which is high dose at 450mg/day but it helps the nerves in my legs & feet by changing the symptoms of having severe pain, numbness, imbalance,cramping, a dead cold feeling, from my knee to toes into only feeling 3 numb toes & numbness top of feet & balls of feet with a sensation of walking on pebbles which to me is like a miracle! I also use a Tens unit. I sometimes also have intermittent bladder micturition problems. I think the most valuable help i have is my pain dr is a physical medicine & rehab dr, physiatrist, who understands arach & treats the pain aggressively with narcotic therapy & has found meds that do reduce the pain about 50%, found by trial & error adjunct therapy med that stops most neuropathy symptoms i feel from my spinal nerves dying, lyrica, & also treats insomnia with trazadone. So, although i wake in #7-10 pain i am able to get it down to tolerable level so that i can stand to be alive & awake, can walk & drive but mostly have to stay home but i do have some good days. Distraction still works for me as well so i watch alot of movies, read, enjoy looking at flowers in my yard, butterflies, birds, even watching ants helps distract me, take many hot baths, cook dinner most days. I always think it could be worse & sometimes it is but my family reminds me when im hurting so much i cant remember that it always gets better & it always does, eventually where i can be " normal" for me again. Our families need us even if its just to still be here to teach, guide, encourage & love them & arach does interfere with being able to do alot of things for our loved ones but it cant stop the love! Do you have a dr that has your pain managed or controlled enough that you can get the #10 pain down to a tolerable level, have a spinal cord stimulator or intrathecal pump or medicine that helps you be able to sleep & or take a medicine to help the leg nerve symptoms & can you still be "normal" for you on some days? My heart goes out to you & reaches out in empathy & understanding & im so glad you came to this board, welcome! There are several of us with arach here & we are here for you anytime & " get it"!

    Last edited by gmak; 04-26-2014 at 07:01 PM.

     
    Old 05-21-2014, 10:20 PM   #3
    atgirl
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    Re: Arachnoiditis has taken over my life

    Quote:
    Originally Posted by gmak View Post
    Dear rita, I am so very sorry that you are hurting so extremely much! I have adhesive arachnoiditis too from L1 - S1, empty sac & tethered cord. At age 26 i was injured & had pantopaque myelogram & then had 2 lum laminectomies with CSF leaks & dural grafting then 7 years later had 2 more lum lams, foramenectomies, dural grafting again. i was in massive severe chronic pain and started pain mgmt & was diagnosed with FBSS for 20+ years. finally told i had arach in 2012 it had showed on my MRI in 1988 but no dr ever told me. 3 spine neurosurgeons told me then i could never have surgery or any invasive spine procedures again because the pain could actually become greater unless it was an emergency then surgery would be done but didnt tell me what the emergency was defined as, it could be the cordotomy that they were referring to. I didnt want to bore you with my details except so that you could know i share in this cruel ravaging condition too, hurt beyond comprehension & i understand how you are feeling, My treatment for the severe pain is fentanyl patches, long acting morphine & lyrica which is high dose at 450mg/day but it helps the nerves in my legs & feet by changing the symptoms of having severe pain, numbness, imbalance,cramping, a dead cold feeling, from my knee to toes into only feeling 3 numb toes & numbness top of feet & balls of feet with a sensation of walking on pebbles which to me is like a miracle! I also use a Tens unit. I sometimes also have intermittent bladder micturition problems. I think the most valuable help i have is my pain dr is a physical medicine & rehab dr, physiatrist, who understands arach & treats the pain aggressively with narcotic therapy & has found meds that do reduce the pain about 50%, found by trial & error adjunct therapy med that stops most neuropathy symptoms i feel from my spinal nerves dying, lyrica, & also treats insomnia with trazadone. So, although i wake in #7-10 pain i am able to get it down to tolerable level so that i can stand to be alive & awake, can walk & drive but mostly have to stay home but i do have some good days. Distraction still works for me as well so i watch alot of movies, read, enjoy looking at flowers in my yard, butterflies, birds, even watching ants helps distract me, take many hot baths, cook dinner most days. I always think it could be worse & sometimes it is but my family reminds me when im hurting so much i cant remember that it always gets better & it always does, eventually where i can be " normal" for me again. Our families need us even if its just to still be here to teach, guide, encourage & love them & arach does interfere with being able to do alot of things for our loved ones but it cant stop the love! Do you have a dr that has your pain managed or controlled enough that you can get the #10 pain down to a tolerable level, have a spinal cord stimulator or intrathecal pump or medicine that helps you be able to sleep & or take a medicine to help the leg nerve symptoms & can you still be "normal" for you on some days? My heart goes out to you & reaches out in empathy & understanding & im so glad you came to this board, welcome! There are several of us with arach here & we are here for you anytime & " get it"!

    What kinda feet pain do you have?? Did that start immediately after the surgery that caused arach or how long after?

     
    Old 05-22-2014, 01:14 AM   #4
    gmak
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    Re: Arachnoiditis has taken over my life

    I have numbness constantly under toes & ball of foot, pins & needles, electrical bolts that go through feet from legs, extreme cold feeling lower calves, sensation of walking on sharp pebbles or glass, charley horse cramping, cant keep balance when wearing a heeled shoe, cant walk when bottom of feet both numb, cant wear closed in shoes often due to pain, numbness top of toes, & barefoot it feels like my feet are being squeezed into too tight shoes, pressure pain on bottom of feet like ive stood all day but they are just on floor while sitting & arach started according to MRI 1988 & this all started in august 2012 increasing through today 5/14. Lyrica, pregabalin reduces all this except numb toes, swollen feet, pressure pain while barefoot.

     
    Old 05-22-2014, 08:29 AM   #5
    atgirl
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    Re: Arachnoiditis has taken over my life

    So it took 22 years for the feet pain to come on? Is this your worst symptom? What other symptoms so you have with arach? I think I have it!! Was arach written on your report from 1988?? Or did it say something on there that corresponds with arach?

     
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