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Wait for bi-level ADR or have hybrid surgery?

JJJJJ Posts: 14
edited 06/11/2012 - 7:24 AM in Degenerative Disc Disease
I really need some advice. I have been diagnosed with DDD since about the age of 18. Just over 3+ years ago my condition worsened and I haven't had a day without pain yet. I have tried all the "usual" stuff - PT, multiple injections, a failed disctectomy (L4), etc and seen multiple surgeons. I have been sustaining some semblence of a life living on Vicodin and Valium while awating the FDA to approve bi-level ADR surgery on my L4/L5 and L5/S1 for 3+ yrs now. My medical insurance will not pay otherwise - and I cant afford to self-pay! I think I am convinced by the docs that is my best course of action, but cannot take this lifestyle much longer. Apparently, my alternative is to have the hybrid surgery. Is anyone in this similar predicament? Does anyone with DDD have any thoughts on the hybrid surgery v. waiting for bi-level ADR? Please help .....
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Comments

  • I could really use some advice on this. I am so confused and don't know what to do. I am so sick of living with pain and being on narcotics! I truly thought those here may be able to offer some perspective.
  • Hey JJ: I had a doc tell me recently that I was an ideal candidate for a single level ADR. But I had a 2nd opinion doc say that my neck lacks the normal curvature of the spine. Therefore, I am not a good candidate for it after all. So, I have to have a fusion (possible triple level). I too am sick of the narcotics. But, they help us to survive. I also do heat, ice, massage, accupuncture, etc. Have any of these docs recommended meds such as nortryptaline or amytriptaline (forgive the spelling, but it is close). They are antidepressant meds, but they found out on accident that these meds help with neuropathic pain. Are you on anti-inflammatories as well? Have you tried muscle relaxers such as Flexeril or Skelaxin? (This is probably the last thing you want to hear...info about more drugs). These are just things that help me to survive while I wait for my surgery. Are you able to exercise at all, even a little? Yep, it hurts, but I want to be in the best shape possible BEFORE going into surgery. Being in good shape before surgery can really help with the outcome (from what I have observed). I am so sorry you are having pain. Believe me, I can relate. Pain on a daily basis is really depressing and discouraging.
    From what research I have done, double and triple ADR is only in Europe. Please feel free to peruse ispine.com. I have found it pretty informative about ADR. I hope this helps. Keep in touch, k?
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  • I plan to check out ispine.com in a little bit! Not that I am completely convinced it is the right option for me, but then again nothing really seems to be the right option for any of us on this sight does it? I am thankful that at least my issues are with discs in my lower back, and not up in the neck area. I am very sorry to hear about your condition(s). I do take muscle relaxants daily as it is the only way for me to cut down on my occurences of sciatic spasms. I don't get nearly enough exercise, and I know that's gonna' really be bad when (if) I have any type of surgery. The medications have helped me to stay functional to keep my office job somehow, and getting up, going to work, and getting home is about the most exercise I can handle. Thank you for your thoughts, suggestions, and compassion.
  • JJ- I am also a candide for ADR, mine is the L4/L5. about 2 years ago it got so bad my doctor said it's either this or fusion. We tried to get it approved by insurance - denied of course. I was hardly able to walk, falling down all the time, breaking things when I tried to stand. Steroids hardly do anything for it. I was very depressed as I knew that fusion would mean I likely never be able to downhill ski again. Plus, as you know, fusion is not permanent a permement solution as it makes the disks above weak, and the disk above mine was already showing signs of shrinking.

    My husband suggested I look into decompression. This is a non-invasive procedure that pulls your ruptured disk and fluids back into the spinal column. I was very skeptical because although approved by the FDA, insurance won't pay for this either. They'll pay for 4 days hospital stay, all kinds of tests, drugs, to the tune of 40K. But oh no!-we simply can't fork over a few thousand for something that might actually help (I'm slightly bitter). The device resembles a torture table with pullys and hooks. I won't lie, it hurt like hell, but after 3 sessions, I started noticing some changes. After 12 sessions I woke up one night and realized I could halfways decently roll over in bed! Last winter, I went skiing for the first time in 4 years!!! This sort of treatment has to be on going maintenence, I started very aggressively 2 years ago and now go once a month. I feel great for about a week after the treatment, then slowly it starts getting worse. I wouldn't consider this a permament solution, my pain is worse than it was two years ago, right after I started, it was down to a one. Now I would say it is consistanly at a 3-4 daily which is still better than before I started which was 9-10.

    Anyway, I figure this has given me some time to wait it out and hopefully I will make it to the point that my insurance will realize what idiots the've been paying thousands in therapy, drugs, etc. when they could just pay for this surgery. There are a few chiropractors in MN using these machines, the one I started at charged $240/session. Now I found one closer to my work that charges $50/session. You also need an adjustment when you have this done so you have to pay that fee as well. My chiropractor is in-network so insurance will pay for SOME of the adjustments only which helps.

    Anyway, good luck, keep us posted.
  • I truly appreciate your reply and suggestions. I am too concerned about any form of "treatment" like decompression that may "move" my screwed up discs in any way. My torn L4/L5 and or L5/S1 are so close to my sciatic nerve that I often have strange sensations like tingling in my feet, burning in my lower right calf, numbness and or pain along my entire left leg, etc. I also experience paralyzing sciatica a couple times a year when the discs really act up. I am starting to thin that my situation is pretty hopeless, and I'd better get used to living like this ...
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  • JJ- I was diagnosed as a candidate for 2 level adr surgery in Aug of 2006. After undergoing 18 months of conservative treatment , my workers comp insurance approved the ProDisc surgery at L4L5 and L5S1. Best thing that ever happened. I have been pain free for 16 months and have regained my life. So there are ways around the FDA and its agonizingly slow approval process.I am not sure what their reasoning was other then my large prescription bills they were paying. Good luck
  • Great to hear mndavej.....go ADR!
  • Do you know if there is a tentative date for approval of bi level or if its just if and when the FDA finally does?

    Misti
  • Misti,
    It was Apeil 2009, that's why I went to Germany and had my 3 level ADR. The FDA says they need more long term American patients and American Doctors.
  • It is difficult to believe that so much time has passed by since my original post back on 10/22/2008! I guess I need to update my "signature" to state that I am now 40 years old, have tried both acupuncture and several months with a chiropractic doctor. Unfortunately, in addition to the same pains I had when originally posting, I am now experiencing upper back and neck pain (started Thanksgiving 2009)!

    I am scheduled once more to see the surgeon (Dr Yue at Yale Hospital, CT, USA) in a week and a half. I have finally reached the point that I will go along with absolutely whatever surgery is offered and will be covered by insurance. I cannot go on like this any longer! Instead of listing all the reasons (whining) I can sum it all up by stating that the pain I live in as consumed my life in its entirety and it is time to do something - even if I may come to find it was wrong.

    I will try to check in more frequently, as I feel bad that I have not checked in here for so long ...

    Jeff
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