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    Old 07-17-2005, 06:28 AM   #1
    duttin
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    Need advice for chronic Back pain

    I'm 39 with 4 active children 3 are teens.I've lived with chronic back pain for 12 years now.
    For 8 years I went to a chiropractor for a herniated disk L5-S1 and it helped a great deal until one day I bent over and I couldn't get up.I had back surgery to remove the disk,lo and behold the Neuro implanted ray threaded cages and I've been down hill ever since.I had a second surgery 11 months later a new neuro put in a stablelization bar for support this did give me the ability to walk again,After 5 year I've started having severe pain that meds are not helping.
    I've tried 6 different anti-depressents
    Been on 30mgs of flexeril-10mgs is the norm
    Had one nerve block without steroids allergic to them
    several narcotics for pain-no releif
    physical therapy---couldn't walk for days
    water therapy---couldn't walk for days
    pain medicine and management
    psychatrist-they came to the conclusion it was not a head thing the pain was real.
    I started seeking med help in november from family dr,nerve and muscle dr.,pain management dr,a neuro-who was great but could not do the procedure needed he referred to a expert neuro who wants me to go back to square one with pain meds,therepy .
    I need a revision surgery which would take about 14 hours.The ray threaded cages are pushed and the stablization bar are pinching on nerves and causing neurapathy very rapidly.The nerve damange can not be reversed but can be stopped.All the implants need to come out and reconstuct the spine using cadaver bones a more natural approach.I have pain so bad theres days that I have begged for them to remove my legs and thats being on pain meds.
    I see a new neuro on Aug.23rd.It was the only opening available.
    I like the boards ,Iknow I'm not the only one out here frustated and the info and advice has been great.
    I'm keeping positive,I know there's a neuro out there for me.

     
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    Old 07-17-2005, 05:16 PM   #2
    jdlfmc
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    Re: Need advice for chronic Back pain

    Hi, Sorry to hear that your not able to find any relief, I have problems at all three levels of my spine and permanant damage to the S1 nerve so I can relate to the leg pain, like you I have tried it all except surgery they say my conditions are not operable, I did however even try the spinal cord stimulator to no avail.
    At times I have felt the only relief would be to just cut my legs off.
    At this point my Pm and I are trying new and dif meds before moving on to the pain pump.
    Right now I am taking methadoone 3 times a day and started keppra 2 times a day, which is a anti-convulsant med they use for seizures but have found these meds to be very effective in the treatment of nerve pain.
    My question to you is have you treid any of the anti-sizure meds for your nerve pain, I know they can have terrible side effects but often they go away with time, I know it has been a little over a week and I have noticed a dif. in my nerve pain, now if the side effects get better.
    Linda

     
    Old 07-17-2005, 06:55 PM   #3
    duttin
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    Re: Need advice for chronic Back pain

    jdlfmc,
    no I havn't.I've had to many allergic reactions to anti-depresents and steroids.
    I can't afford to lose any more weight.I went from 112 down to 104 lbs in a few days on the last prescription.I have thought of the pain pump,but I don't weigh enough they're afraid of over dose.Plus I have 4 children 3 are teenagers and when on medication I can't remember half the time what I tell them or what they tell me.I see a new Dr. in august.I hoping with a female she'll be little bit caring my last Dr. wanted to put me on neuroton,that med scares me.Then he sent me to a new chronic pain and medicine management clinic The earliest appt. is not until dec.5. How ironic.I'll continue to take the diazepan at night. Linda good luck with your new meds I hope they'll go away soon.
    Toni

     
    Old 08-02-2005, 02:28 PM   #4
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    Re: Need advice for chronic Back pain

    Hi Toni, I'm sorry to hear your having so much trouble. Hang in there! Surely, there's a doctor out there that will listen to your problems. I've had 4 doctors for my back in 14 yrs. I have found most to be helpful in some way.
    Maybe this new one can help. It does sound like you need the pump, but I'm no doctor. Let us know how it goes with this doc.
    bj

     
    Old 08-02-2005, 04:38 PM   #5
    jdlfmc
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    Re: Need advice for chronic Back pain

    Hi Toni, Sure sounds like you more then have your hands full, hopefully the dr you are seeing this month will be able to help.
    I had to stop the keppra, it was awful after the headaches went away I felt as if I was in a rage all the time and about ready to blow up, I see my Pm Thur. to see where we go from there, the meth 3 x a day seems to be helping some, my GP started me on cymbalta and it seems to have mellowed me out some and I've had a bit more energy the last few days, afraid to say to much I'll jinx it.
    I know if I can't find something that wworks the pain pump is next and I'm not ready for that even after 6 + yrs of living with CP.
    I can't even count the number of drs I have seen these past yrs and not many with good results.
    I'm so sorry it will take til Dec to get in to a Pm dr isn't there anyone you can see sooner that is a awfully long wait and then how much time do you think they will have for you if they are so booked up.
    Anyway I hope something is found to help you soon.
    Thinking of you and wishing you the best.
    Linda

     
    Old 08-02-2005, 05:09 PM   #6
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    Exclamation Re: Need advice for chronic Back pain

    hello Nuffs,
    my name is brian. i am a 32 yo male who has been in pain 4 yrs. now. (still currently in pain) and was reading your story and my heart goes out to you. after reading and being empathetic to your situation i can only ask if you are christian? it sounds as if the medical system has been trying their best, but remember, doctors are humans practicing" medicine. the Lord is the only one who has"real" healing. now, i know that you may have prayed for hours upon hours as i did, but only after 4 yrs. of praying have i come to understand what it is that he really wants for us, and this may have to happen in order to recieve the healing.!!he wants a RELATIONSHIP with us..not just begging him for healing. when someone told me this i thought, well, hell, i do have a relationship with him ...im CHRISTIAN. but then i thought about it, and compared it to say an actual friend of mine, and the relationship that i have with him, and i see what they mean. i needed to start talking with him all day, everyday. when you read the Bible, it say many times that you need to put the lord first, always, before your friends, your children and even your own spouse. so i thought about that, and reallllly thought about it. that means that you have to LOVE him more than even you love yourself. this takes some time to learn, but ohh will it make all the difference in the world. i also had back surgery, not as complex as yours, but you must have faith. if you have any questions, feel free to ask me. i am a young christian, but am a willing servant. God Bless you, and i will pray for you everyday. bshire

     
    Old 08-02-2005, 07:22 PM   #7
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    Re: Need advice for chronic Back pain

    Thanks to all that have replied.

    Yes, Brian I am a christian! I do not attend church can't sit in church pews,worship and pray at home.I am a firm beleiver that the Lord puts no more on me than I can ender, but sometimes he can push my limits. And you're right the Lord can heal in mysterious ways,but I am a firm beleiver he has given many humans the qualities of being very good Doctors ,but some I should say many have forgotten that the Lord has given them the ability to heal and help others and they have lost their way.

    I'm anxious to see my new neuro this month she's a female and here latly these male Doc's(I apologize if I affend any males on this board)seem to not give a crap one way or the other.

    I have had the option of the pump and tens unit , but my weight is a factor,not weighing enough.If I'd gain 20 pounds they could do it.

    Some Doctor has to do something soon I'm slowly losing the ability to walk.My children are great.They have fun with the whole situation.My 14 year old son takes it the hardest,and he gets upset if someone makes fun of the way I walk.It has got him into some trouble at school.But with age,comes wisdom and children are shallow minded.I tell my son that everyone has a handicap and some day these children will discover theres.

    I keep positive and one day I'll find the right doc. that will listen .Hopefully soon.

     
    Old 08-03-2005, 01:26 AM   #8
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    Re: Need advice for chronic Back pain

    I have suffered with back pain for ten years. Injections only relieve it for about three days. Pain pills and muscle relaxers last maybe up to three hours. I toss and turn. Wake up screaming because I can't turn over. I am at my wits end and this has got to stop. Even though I still can walk,thank God, I am still in pain constantly. I need help or a bullet.

     
    Old 08-03-2005, 02:40 AM   #9
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    Exclamation Re: Need advice for chronic Back pain

    Nuffs,
    sorry to hear about your little one , he is probally feeling guilt for your pain, and sees his mom hurting and wishes it was not so. keep encouraging him that you WILL GET BETTER, through this encouragement, he will believe.. which will make you believe. i believe so much that the mind and body are connected, we just forget as we get older. tell your body to heal with the grace of Lord Jesus and confess it each morning you wake up and every night you go to bed. I also believe the Lord put his healing ability in the hands of man, but when times are challenging, which it sounds as if they are, HE is the answer. pray on it, and believe you will heal. i believe you will.!!!!! God Bless you and goodnight. bshire

     
    Old 08-03-2005, 06:06 AM   #10
    duttin
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    Re: Need advice for chronic Back pain

    Morning all,
    New day , the legs don't want to move, but with convincing they do go after awhile.
    Here latly they don't want to support me, but have done several searches on the web.Boy am I well informed on my back problems.

    I went and retreived all my x-ray reports.How one person can have a ct,mri,mylogram,mylogram with ct,emg and they all have different conclusions.

    The only thing thats consistent is a pair of tarlov cysts (they beleive) growing on the L5-S1 nerve roots.And they wonder why the nerves in my legs are wasting away the muscle,go figure.
    Theres a post operative seroma filling with CSF (no wonder I have headaches)
    Facet arthropathy at L3-L4(what ever that means)
    diffuse disk bulge at L4-L5
    L4-L5 facet arthropathy and calcification of the ligamentum flavum
    L5-S1 posterior spondylosis with osteophyte on the right side projecting into the thecal sac.
    Emg states chronic rt and left L5-S1 radiculopathy with acute deenervation in the lumbar parispinals(conclusion--the nerves are damaged to a point that the muscles are waisting away.
    What frustrates me is that all the docs I see knows what to do but with it being a 14 hour surgery they don't want to risk it,but what the med professionals are not understanding there not living with my chronic pain.
    For my son with long talks and reassurance things in time will get better.Hopefully with being in highschool and football his time can be occupied with practice and homework.

    Thanks for the encouraging words,bless all

    Toni

     
    Old 08-05-2005, 08:59 AM   #11
    Fancylady
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    Re: Need advice for chronic Back pain

    Toni, Be careful with the Diazepam at night. I took it for yrs. & it worked fine with sleep. I did get addicted to it. All of a sudden, I started having nightmares. They were terrible. I decided I'd rather be awake all night than have those nightmares anymore. Thats all it took to get off them, but I do have to have another kind of sleeping pill. It has no side affects yet. Billie

     
    Old 08-07-2005, 07:24 PM   #12
    duttin
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    Re: Need advice for chronic Back pain

    Fancylady,

    I stopped taking the Diazipan.Leaving me with headaches during the day.Taking Flexeril,had to stop taking that for 30 days it's time released and when I had the Mylogram I am allergic to Iodine,so the contrasting dye they used would counter act the flexeril.They increased that to 30mg until I see the neuro on the 23rd.
    I am very limited on what they prescribe,I'm allergic to many of the steroids,so we won't take a chance with any.They tried one injection at the L5-S1 nerve but it was with general antistesia and there wasn't any releif.Many of the meds have caused me to lose weight and I'm thin by nature.Looking forward to my appt. on the 23rd.
    Bestwishes

    Toni

     
    Old 08-08-2005, 05:36 AM   #13
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    Re: Need advice for chronic Back pain

    Linda, I wish it was legal to exchange addresses, and I know it isn't. I have a full bottle of Cymbalta & I can't take it at all. I had to order 3 mos. of it plus 2 weeks. of the smaller dose. The smaller dose was more than I could take, so dr said to just quit.
    What makes me so mad at myself is the fact that it cost $131. Never again will I start a new med. and order 3 mos.
    BJ

     
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