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This may be a rant

This is a discussion on This may be a rant within the New Member Introductions forums, part of the Spine Patient Society Lobby category; Currently I have degeneration and stenosis at C 3-4, 4-5, 5-6, (is the worst and contacting the cord) and 6-7. ...

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    Default This may be a rant

    Currently I have degeneration and stenosis at C 3-4, 4-5, 5-6, (is the worst and contacting the cord) and 6-7. I have seen 4 surgeons and they all tell me something radically different. The last one told me that removing the osteophyte and bone in the facet joints will cause it to grow back with a vengeance. Is this true?

    I don't trust doctors especially American doctors. I have been told that i have too many levels by two doctors and the last one offered me a fusion at C 5-6. In the mean time I suffer.

    The treatments that make sense to me would be the M6 disk, traction aka non surgical decompression (if it actually would work as claimed) and the nucleus populsus implant but they are not available anywhere.

    I really feel as though I have no hope. I have called a couple of places to see if their are any clincal trials for the M6 and so far I have heard nothing.

    Out of frustration I wrote my senator complaining that the M6 disk is maid in the USA but the FDA won't let Americans have it. Call me paranoid but I suspect that it works too well and will cost the medical industry money.

    Your thoughts?

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    Senior Member Katie's Avatar
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    Default Re: This may be a rant

    I won't get into the politics as it would take pages , but have you tried many/any out-of-country surgeons for a consult?

    After about a dozen different doctors looked at my images, the suggestions ranged from five levels of surgery, two in my C spine and three in my lumbar to two procedures, one in each level. Dr. Bitan in NYC and Stenum both recommended five levels. I have gotten away with three, fusions in L4/5/S1 and an ADR in C5/6. The compression of the cord was most significant in that level, but was also present in C4/5.

    I was told by almost everyone that any neurological damage was permanent, that they could only stop any more progression. Thankfully I beat the odds and am back to normal in most areas. The fusions in the lumbar were a final resort as I have severe allergies to all surgical metals, and there are no non-metal lumbar ADRs available yet. Otherwise I would probably have had one in L4/5.

    I'd spread my wings a bit further. Trust your gut...the answer is out there and will become apparent as you go through the options. I know how hard it is to believe that though.
    Severe compression of spinal cord, flaval ligament, etc. at C4/5 & 5/6.
    Herniation and compression, at L3/4 to L5/S1 plus spondylosis at the latter level. Severe allergy to most metals.
    Three level surgery in Brazil with Dr. Luiz Pimenta on March 17/2010 using non-metal appliances. L5/S1-PEEK cage, ALIF; L4/5-PEEK cage, XLIF; C5/6-NuVasive NeoDisc. Three separate approaches, two minimally invasive. Currently minor residual back pain, from SI ligament and still overdoing things . Therapy and chiropractic treatments helping immensely. Gone from being almost bedridden to near normal activities including gardening. Life is gooooood!

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    Senior Member rhatzy's Avatar
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    Default Re: This may be a rant

    Send your MRI's overseas and get a diagnosis. Plenty of good ones doing 3 and 4 level ADR. Alos more experienced and cheaper than here in the USA.

    Mark
    1996 discectomy L4-5
    2007 discectomy L3-4
    Jan '08 maverick at Stenum L3-4, L4-5
    September'08 back to work as airline captain

  4. #4
    jss
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    Default Re: This may be a rant

    I Suffer,

    Condolences on your condition. And condolences on receiving four different prescriptions for treatment.

    I saw six surgeons, five of which gave me the exact same prescription for surgery; so my course of action was easy as there was a clear consensus. I would encourage you to see more surgeons; and hopefully a clear best course will begin to emerge.

    Yes. Generally removing a bone spur will make it want to grow back quickly and even larger. There are treatments to prevent this. The spurs that I had removed were smeared with a bone wax, which usually prevents them from growing back. There is a whole set of issues surrounding that treatment also; but it usually keeps the spur from growing back.

    As far as getting into an M6 trial in the US ... I am certain that you won't meet the inclusion criteria. The goal of any trial is to get a device to market so the manufacturer can sell it for a profit. As such the trial must show very good results. For that reason only patients that are likely to show the best results are allowed into the trial; patients that have one diseased level in an otherwise pristine spine. From your introduction your spine is like mine; anything but pristine.

    I have two M6-C's and would not trade for them.

    Good luck, Jeff
    C4/5 fusion, January 2000
    C5/6 fusion, February 2002
    C3/4 & C6/7 - M6 ADR, Nov 2009, Barcelona
    Conceded defeat to a manifestly disingenuous BCBS-TX in my quest for reimbursement, Jan 2011

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    Default Re: This may be a rant

    I am saving my money for an overseas trip. I did ask the last surgeon this hypothetical question. "If 5-6 were healthy and everything else were the same would I have major pain issues and he said no. My chiropractor said the same thing.

    It's really frustrating to know that there is a solution other than fusion. I know a lot of back and neck surgery patients and the ones who had fusions are not doing well.

    I look at it this way. It's my body and it does not belong to the FDA so I should be allowed to pay a US surgeon to implant the M6 or Nuvasic's Neo Disk. BTW the Neo Disk can be implanted by a monkey. Any surgeon who can do a fusion can implant the neo disk. The old disk is removed than the Neo Disk is inserted and screwed into place. It's idiot proof so even an American can do it.

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    Senior Member KanRunMo's Avatar
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    Default Re: This may be a rant

    Don't insult the American doctors. It is mainly the FDA and insurance companies. The FDA because they don't seem to have a very efficient test method for "new" ideas and the insurance companies because they want to get out of paying for anything they can. My son is a surgeon and is a very good doctor (as is Justin the developer of this website, I'm sure).
    Diagnosis:
    Degenerative disc disease throughout spine
    Generalized disc bulging with mild narrowing of thecal sac in L2-L3, L3-L4, L4-L5, L5-S1.
    Moderate spinal stenosis L4-L5
    Foraminal narrowing
    Recent compression Fx at T10,T11.
    Treatment:
    Spinal decompression 2007
    Cortisone injection in lower back in 2010
    Relieved of pain for now
    Hope for ADR

  7. #7
    jss
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    Default Re: This may be a rant

    I Suffer,

    Yes, it is frustrating that these outstanding and proven treatments exist, but remain out of reach for many Americans that would benefit greatly them. The NeoDisc finished its IDE trial in October 2010. I don't know how long the paper work takes; but hopefully it will be available in the US soon.

    Good luck, Jeff
    C4/5 fusion, January 2000
    C5/6 fusion, February 2002
    C3/4 & C6/7 - M6 ADR, Nov 2009, Barcelona
    Conceded defeat to a manifestly disingenuous BCBS-TX in my quest for reimbursement, Jan 2011

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    Senior Member ajj1001's Avatar
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    Default Re: This may be a rant

    Quote Originally Posted by I Suffer View Post
    It's really frustrating to know that there is a solution other than fusion. I know a lot of back and neck surgery patients and the ones who had fusions are not doing well.
    ... and I know lots of fusion patients who are doing well and ADR patients who are doing badly. The right solution ,not one particular solution is the way to go. I understand that you want to able to go down the ADR route but don't rule out another treatment or fusion.
    Alison 46 year old female
    2012 Doing Rehab
    2011 Sept 3rd Op Removal of old instrumentation and PLIF L4/L5 - L5/S1 both adr in situ
    2010 May Discogram on L2/L3 & L3/L4
    2009 May 2nd Op Failed revision fusion on L5/S1 with Charite ADR in situ
    2008 Caudal epidural exacerbated nerve symptoms. Prolapse L2/L3
    2007 L5/S1 Facet deterioration
    2002 March 1st Op ADR Charite - L4/5, L5/S1
    2000 Disc prolapses L4/5, L5/S1

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