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Three level disc replacement

AnonymousUserAAnonymousUser Posts: 49,900
edited 06/11/2012 - 8:25 AM in Back Surgery and Neck Surgery
Hi, my name is Janey, I'm new here, and I'm from England - I see there are other Brits on here as well!

On December 1st I'm going in for three level disc replacement, which I'm told is a huge and risky operation. The NHS won't fund it as they see it as too risky and with little chance of helping me improve, but like most people on here I feel I have no choice. Fusion isn't recommended, and the only other choice is to do nothing - which really isn't an option. I've tried all the other alternatives, following a failed microdiscectomy over four years ago.

I'd love to hear from anyone who has had two or three level disc replacement to find out how they got on!

Janey
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Comments

  • I didn't even realize the FDA had approved three level disc replacements... I thought the cut off was two. Or maybe that's just in the U.S. I dunno. But yikes. Hope that goes well for ya!

    Can I ask why fusion was not recommended? That is the "gold standard", generally.
  • I've been a regular on the board for the last 6-8 months but have never heard of anyone having a 3 level ADR which doesn't mean it hasn;t happened but just that I haven't read it here.
    You didn't mention if your surgery is in the cervical or lumbar which really makes a big difference.
    I hope someone is able to help you and yes I too would be interested in hearing why a fusion was not appropriate but an ADR is.

    Blessings Sara O:)
  • showed that all three discs - L3/4, L4/5 and L5/S1 were all pain generators. Replacing any two would still leave the third, so they all need to go.

    In England, to my knowledge, only 21 people have had 3 level disc replacements, so it's pretty rare over here as well, and only one surgeon will consider doing it (he's done all of those 21). I believe a surgeon in Germany has done a few too. I'm aware they don't do three levels in the US.

    Fusion was not considered an option for me because of the risk to adjoining discs. Originally I just had the one severely prolpased disc (L3/4) which I had a microdiscectomy on, but as a reult of that surgery failing I now have three degenerative discs, all of which are pain generators.

    Having been told by so many people (including medical professionals) not to have this surgery I feel very apprehensive, but I feel I have no choice. I can't carry on as I am.
  • On 1/12/2007 spent 12 hours in surgery having 5 level fusion. Was fused from L1 to S1. Rods screws and cages. Don't do it unless it is an emergency.
  • Yikes... Only 21? If that makes you comfortable enough, go for it! I know a lot of people are hesitant when it comes to disc replacements because not much is known about the long term effects. They actually have not even proven whether the disc replacements over fusion provide the spine with less stress. There are not enough clinical trials and long term data to make that conclusion. Jury is still out on that one.

    Fusion pose somewhat of a risk to the surrounding discs, but that's not just for your situation, that's with everyone's. So you really are no less a candidate for fusion than anyone else... It is just that your doctor has his own views and preferences on what he feels is right and chooses to do.

    There are a lot of people on here who have had multi level fusions, and I think some who have had fusions combined with disc replacements, that can offer you loads of support and personal experiences. You've come to the right place!

    I wish you the best with your surgery and I hope you find relief :)
  • Interested to hear how you are now after a year. Have you fused on all levels?

    Janey, I am not wanting to put you off just covering all bases, did you have a second opinion on this and if so did that second opinion saw also that fusion was out of the question.
    For all of us having fusion, the risk to adacent levels is increased so is there a reason why in particular it wouldn't work such as osteo?

    On a brighter note 22 is a really powerful number in numerology and you would be pretty well off to be the 22nd patient. :)

    Blessings Sara O:)
  • yes I had a number of other opinions. The surgeon who did my discectomy four years ago said he could offer fusion, but wouldn't recommend it for me. Another three surgeons just gave me that familiar pitying look and said they wouldn't recommend fusion but that they didn't have an alternative to suggest (you get pretty sick of hearing "learn to live with it", don't you?).

    This surgeon now is the only one who has offered me anything at all. It's a pity that what he's offered is so huge, so risky, so experimental (and so very, very expensive!), but it's all I have on offer.

    Yes, let's hope the number 22 works for me - nothing else has!

  • I am no doctor but let common sense jump in here.
    You are only 21? What on earth is your diagnosis that the doctors will not do a fusion but someone has offered a 3 level ADR?

    One level, sure i can see the logic, may even work as long as the docs are absolutely clear on the pain generators but like my own history, I have numerous issues casuing signcant pain so there are no gaurentees and that is even before operative complications (again I have had some of the more unusual ones) and then nerve recovery is such an unknown.

    I would not haste into that at all. Also you need to ask what afterwards, when the life of the ADR is expired (by means of naturally) I mean...will they fuse you then?

    Some docs are very conservative in their offerings, perhaps because of your age and subsequent risks for when you are older. That said, would a specialist centre opionon (Spine Centre) not be of value?

    I have pm'ed you too.
    >:D<
  • I'm actually 48! There have only been 21 three replacement disc operations done in England, as far as I can tell, all by the surgeon who is operating on me.

    No-one knows the life span of prosthetic discs yet because they haven't been around for long enough. The NHS wouldn't fund my surgery because it is too new and experimental and there isn't any evidence yet as to how effective it might or might not be.

    Having been to a number of surgeons previously with no joy (just lots of pitying looks and a "we can't do anything more for you" brush off) I finally went in desperation to the Lonodn Spine Clinic at Harley Street. This is where I found this surgeon who is a pioneer in the field of disc replacement surgery.

    I have to have faith in him as no-one has offered me anything else, and I certainly can't carry on as I am for much longer. I know it's risky, and hugely expensive, but I really feel I have no choice.
  • I don't know where i got that from !

    /:)
  • it's because I look so young in my photo, but I realise I haven't put a photo up here yet!
  • j.howiejj.howie Brentwood, Ca., USAPosts: 1,728
    janey, Hello from California,
    I had bad back issues since 1989 And tried to hold off surgery until technology made a adr with cushion so it wouldn't take out the adjacent discs. I didn't make it! Had a three level fusion of L-4,5,&s1. And 1 year later L-3 went. Now L-2, L-1, T-12,& T-11 are all bulging! And if I fuse those, what next, all the way up to my Head???
    Is the technology here? I don't Know. But it should be. It should have been here a long time ago. You sound determined. Please keep us informed of your progress. If you go this way and if not, tell us why.
    Good luck, Jim
    Click my name to see my Medical history
    You get what you get, not what you deserve......I stole that from Susan (rip)
    Today is yours to embrace........ for tomorrow, who knows what might be starring you in the face!
  • I'm not sure if the technology is here or not, but I'm literally risking my home, my business and my health that it is! I'm definitely going ahead with it, not because I'm foolhardy but because the only two choices I have are to stay as I am (not an option) or risk this experimental surgery.

    If this is something you wanted to look into I can give you the name of my surgeon (I'm pretty sure he's the only one in the UK that does this procedure) and there is a guy in Germany who does it also. But it is still in its infancy.

    But then, so was every other form of surgery at some stage!
  • Janey said:
    But it is still in its infancy.

    But then, so was every other form of surgery at some stage!
    You are quite right there and I am sure this will go well for you, you just need to keep a positive attitude and let go of any fears- they dont serve you!

    I had a hip replacement at 15yrs old. All hips were experimental back then but for my age was unheard of. The thing lasted me 30 years and I am so grateful that my parents and the Dr went ahead with it when everyone said I was too young. It changed my life.

    Blessings Sara O:)
  • I've only heard of three-level replacements being done in Germany. I wish you the very best. I am having a three-level fusion done on Wednesday. Yes, I have been told that it can make the levels above fail eventually, but at this point, it's my only option other than to sit quietly in the corner like a pile of mush and quit living my life. I can't accept that, so I'm going for the fusion, followed by lots of physical therapy and personal exercises to try and get at least another five to ten years of life out of my back. I'm 54 and was planning (until the stock market tanked) on retiring next year. I want to be able to enjoy part of my freedome before I give up on physical activities.

    Linda

    3 level spinal fusion, L3/4, L4/5, L5/S1, November 2008. Stiff, but I can walk.
  • This is a great forum, because people really understand the quandary you're in. Over here many people think I'm daft for even contemplating this surgery (including a number of qualified medical people), but unless they have a clue what living with constant pain, and the impact it has on every single aspect of your life has, they have no idea.

    On this forum we're all facing scary surgery, or dealing with it afterwards, and it really helps to know you're not alone. Although it would have been great to find someone who's had three level replacement (well, maybe only if it was successful!)
  • Janey- Everyone has their opinion. Do what is best for you and your life.

    This web site adrsupport.com has a lot of members who have adrs. There is a person who has three level adr in the cervical region. There is also another person who has two adrs in the cervical and two in the lumbar. All got their adrs in Germany.

    I hope everything works out for you. Keep in touch and let us know how it works out for you.

    If three adrs are to many. Have they consider a fusion and two adrs? Just a thought.

    Best Wishes and a lot of prayers,
    Clarissa
  • I don't know why he didn't suggest two ADRs and a fusion - I know he does those, because someone else on this site had that done with the same surgeon. I just know that every surgeon I've spoken to has told me not to have a fusion - not sure why.

    Thanks for the pointer to the German website - it's great to know that there are other surgeons out there doing multi level ADRs too. I can't pretend I'm more than a little nervous!
  • Janey- Just an assumption on the three level fusion. Maybe the stress on the disc above and below are is just going to be too much and not worth it. Good question to ask your Dr next time you see him.

    This is a big deal. It is normal for you to be nervous. The what ifs and the maybes.Try not to stress to much your body will take a longer time to heal. Take good care of yourself now so that it will be as healthy as possible when you get your surgery. Look into relaxation techniques. Those help a lot.

    I hope that everything goes well for you. I would check those Drs out in Germany and see how much experience they have with multi level disc replacement. It might even come out cheaper for you considering the pound is worth more than the euro right now.

    I really am rooting for you. Best Wishes and a lot of prayers,
    Clarissa
  • What if they fuse the middle, and put an ADR on each surrounding disc? Would that be the way they'd do it, in a case where they combine fusion and ADR? Then it couldn't put any stress on the surrounding discs, because the surrounding discs would be ADRs. I dunno. Shot in the dark here. Lol. Just curious.
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