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flexicore 2 level recipients

lost my mojollost my mojo Posts: 1
edited 06/11/2012 - 7:49 AM in Back Surgery and Neck Surgery
looking for more like me, l4,l5,s1 2 level flexicore trial rats. Complications started in surgery due to discs being too big, much nerve damage from surgery, lost bladder control, ankles swell like broke if drive or walk too much, kneeling just plain bad, pain at knees and ankles severe joints become stiff where raising I need asst. Within days of my 61/2 hr surgery and waking to a pain sooo severe prayed to die, 1 time surgeon came was hour post op, said my pain worse then norm due to amount had to stretch spine to implant 2 already too large discs. good news he said was "your alot taller now" I failed to see humor, in hospital 7 days where pain increased increasing pain meds to point between morphine drip and my extra button, to oxycontin 3 daily still nothing, dilaudin every hour, percacets 2 on half hours, paging surgeon as I so bad intern not know what to do, 7 days paging least 8x day with no reply, considering his office connected to hospital pretty bad. IN end walked out albeit slow but needed away from there. day 8 my butt muscles started hurting as if did 1000 squats, figured due to 8 inch incision in abdomen butt pain from walking hunched over, NO then the pain and tightness started working way down legs, thighs so bad so tender like if have flu and your hair/skin hurts just to touch, even bathing washcloth on thighs brought tears. Then calves same tenderness but worse was tightness, when stood you see my calves shake, crying to mom to rub them I'm 3 time marathoner and legs especially calves felt like just finished marathon. Told mom they sooo tight, she feel and said sorry they are not tight at all?? As traveled for surgery was now nowhere near surgeon, had called leaving many messages too please call me, help me to no avail, ended up in ER pain just too bad, unfortunately no Dr was familiar with ADR surgery so unable to help. Pain raged on, far beyond pain pre surgery that felt at time so bad just beyond me. Told I be back to work in 6 weeks, at 6 weeks still unable to get up or down without help, couldnt put shoes on, dress self, so bad unable to make to 6 week post op appt. Complications have just increased with time, surgery in 05, now completely disabled. Most surgeons have refused to see me, even one invented disc. I was 38 single female highly active, yoga instructor, runner skier, biker diver you name it I did it. Now I can do nothing. some of other complications are if going to bathroom and sit more then few min, which you know effect pain meds have on bowels, so now my right leg usually will go soo dead, not just asleep but dead to point can stand and ankle simply twist. Takes minutes before feeling comes back. When ankles swell told its neurological and nothing to stop or help ie water pills but to lay with feet above head. Next days its as if have arthritis, ankles stiff and very achey, I say I walk like Herman Munster, has caused me to fall down stairs many times. Heres weird one I've yet to see anyone mention,I slowly noticed every time went up stairs leading with left leg I'd stumble, same when dressing if putting jeans on standing on left leg again Id fall over, I seem to have lost much balance??? I now walk slightly off as left leg seems to lag?? I was injured in boating incident, due to rough seas I being bounced severly to try help I sat in bow twisted to right pulled down on handle in attempt to keep butt in tact with seat as bouncing hurting my butt bones, result was tore 2 disc. The tears in disc were pinching nerves to left of spine, cant understand how after ADR I could still be suffering mainly left leg.?? My hands go numb and now very weak where opening bottle water too hard, they say no way lower back effect arms hands, only know before injured never had problem. Sleep all but impossible, I cant lay on my stomach or bend back at all. Recently I woke on back twisted at waist with legs atop other, to left, my right leg one on top of left, when went to move red hot pain screamed thru my hip and leg. I was crying from pain and fear I finally losing use of my legs as told discs too big continually stretch damage to sever nerves, that I got to go to bed nightly fearing what may find when woke?? My hip pain so severe unable to walk, tried to move around bed the pain increased, they wanted take me to ER but I said let me try to move around see if helps, they helped me walk around house and my leg slowly came around, however my hip felt like I'd fallen on it, like bruised sore to touch for week??? Over last 6 mths upon waking my back feels like embedded into bed, I extremely stiff and pain out roof, like I starting to rust, need wd 40 to help loosen stiff joints. Now I get up hourly and do few laps trying to keep from stiffening up.
So thats me and just little my story, my pain level never less then 6 and 17 by night. Pain mgmt has me on 2 80mg oxycontin, was 3 until cobra ran out and medicare wouldnt pay for 3 stating 12 hour time release, 2 percacet every 4 hrs for breakthru. Was taking Topomax which if anyone with chronic back pain not tried its the only drug I have actually felt difference, however again when had to go medicare there no generic so I was unable to get the one pill actually made difference. Fact my meds cost over $1200 mth, If I took pain meds as told I be in donut hole within 3 mths and since forced to leave my $90k year job, sell my home, now make only bit more then monthly meds cost, so where Im to come up with the $6000 out pocket to reach catastrophic stage and meds paid for again?? Hence I take maybe 1 oxy every 3rd day and maybe 2 percs day to try and get me thru donut hole, this year as pain at worst making impossible to take so few meds I ran out in Sept now taking 4-5 ibprofin every few hours which wreaking even worse havoc on stomach then pain meds. If anyone has any advice how to get meds when in donut hole or anything that could help from meds to info from those who may be suffering some same complications as I, I'd be eternally grateful.
For those considering ADR Flexicore I'd run away as fast as possible. How I wish someone had warned me. Hope this is helpful and informative as all I have left is to make a difference and try prevent what happened to me to another.
as we say in yoga,
om shanti
(peace be with you)
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Comments

  • Oh Lost..I am sitting here crying about what you have had to go through!! I am SOO sorry!! Wish there was some way that your pain level could come down!!

    So there is no organisation where you are that might be able to help with the costs?? Mabe contact the maker of the pills you need and see if they can help? I dont really know what could help...just throwing out ideas!!

    I will keep you in my prayers Honey!! Oh and Welcome to Spine-health!!
  • Mojo, i am so sad and upset to hear what you are going through. i completely understand however my pain level is not as bad as yours.i had the adr at l4-5, and my husband was told after surgery that i was too small for the smallest disc but they put it in anyway. i have had a variety of issues with pain while healing to include losing bladder control twice shortly after but that resolved. it seemed that all the nerves were so pissed that they were throwing the boot at me. it took along time to get full motor function back in my right leg but i never gained full sensory function in that leg without neuropathy. i still take pain meds and i use the lidoderm patch that i cut in half and put one on my lower back and the other on the nerve dermatome. it helps a little.No you are not crazy to see just nerve pain in your left leg. i thought the same because i have it only in my right. there have been a few times where i would get it bilaterally when it was really flared up but mostly its just the right. as far as the pain meds go i dont know where to turn for that other than what the other post said about contacting the drug reps. i am so very sorry to hear that you are being treated the way you are. i just was told last week that they are not continueing the study and not looking for fda approval . this was from the study people who call me every year for a follow up but they said i would get a letter in the mail soon with a card to identify the disc for future doctors.dont know why they are pulling it but i suppose it is for reasons likes this. please let us know how you are doing and i hope to hear from you soon. best wishes and big hugs.
  • I had the exact same thing as the first post. I was told that this was my only option to fix my back. Here's my scenario, they took a disc out that was a half inch and replaced it with the flexicore disc that was 2 inches and they manipulated and stretched me out another couple of inches to do the surgery. Your body is not meant to be manipulated like that down there. Same thing as far as the surgeon told me that I'm taller now after the surgery. I'm in worse pain now than before. I have permanent nerve damage in my hips, legs, and back. My legs constantly hurt and my knees are going bad. I had zero leg pain or hip pain prior to the FDA Study surgery. They just dropped the study and haven't held up to their end of the deal with paying for all of the medical expenses. Now I'm disabled in chronic pain daily from this Flexicore disc. Since they dropped the study, they know that the flexicore disc doesn't work or has no success rate. I've asked to have it removed by the surgeon that did it, and they won't do it. I'm also looking for more people that have had this procedure done and would like for you to pm me, thanks.
  • I had the flexicore adr put in my l4l5 in 2004 as clinical trial, I am also 1 inch talller and this surgery totaly put me on dissability from nerve damage from this surgery,

    I never had this kind of nerve pain shooting from my spine down my left leg and both legs hurting always and nobody can do anything about it,

    Another dr felt we can fuse it because they cant take the adr out and might help the nerve to heal, It just did not help, If anything it made things worse now adding mechanical pain from fusion,

    I feel realy let down by the medical field of dr,s and for the last 8 years has been hell,

    I have a scs stimulater implanted and even now nerve pain cant be controled to a reasonable level,

    We were used as rats in a lab and for the most part not informed that this adr will not be taken out if its causing this much complications stretching a person out just to make it fit and make it work no mater how much pain its causing,

    My understanding of the flexicore trial was the product being mostly a trial to see how well it holds up in the long run, Not the surgery itself being a trial as they butcher a adr in there that dont fit without causing complicarions,

    I looked for legal advise and no lawsuit can be filed it seems against the dr as they only have some kind of product liability cases on some other adr,s when product failed itself to hold up to standards,

    So seems to me dr,s can cause any kind of damage while butchering a patient forcing an adr in to there spine and its considered normal practiise which is real sad for many patients,

    I dont consider that standard care, And dr,s mostly will not write and go against another dr just as lawyers protect there own !
    Flexicore ADR 2004 resulting nerve damage l4l5 Fusion 2006 same level, 2009 hardware removal with lami !
    2012 scs implant ,
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