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Total Disc Replacement?

TiffanyTerrorTTiffanyTerror Posts: 44
edited 06/11/2012 - 8:26 AM in Back Surgery and Neck Surgery
Hi everyone,

I have been doing some reading lately about some of the options that were layed out to me by the orthopedic surgeon I saw a few years ago.

3 or so years ago when I saw him he recommended a Spinal Fusion or disc replacement. At the time I was 18 and was feeling really unsure about surgery so young and decided against it.

Here we are 3 years later and my new MRI shows progression of degeneration etc. I now have "discogenic changes to the vetebral body endplates". In my reading I have come across a few journals that mention a total disc replacement working by attatching the "hardware" to the endplates.

My question is, how would this be effective if you have changes to said endplates? Would this still be an option? I know nonw of us our doctors and have the answers :) Im just wondering if anyone else has had this surgery with endplate issues.

As far as the spinal fusion, I have been told by other doctors that its not advisable since it can lead to degeneration at other spine levels. Since im only 22 now, I feel like risking further degeneration NOW is not such a good idea.

Any advice? I would really appreciate it. I will be speaking with some doctors hopefully in the next month or so but I would like to get some feedback from people that have actually been through it.

Thanks guys.



  • Welcome!! What a rock and a hard place. For me, I ended up in a dangerous situation and had to have a fusion. My final one (3 surgeries in 12 months) was a 360 PLIF with full instrumentation.

    I had several friends pushing me into a disc replacement (you know, firm encouragement?) but recently found out L5-S1 sufferers are not ideal candidates for disc replacements. I wish I had know that earlier so I could have "shut them up" politely.

    I hope you find a peace about your situation. You are so young, but also too young to have to be dealing with such pain on a daily basis.

    ( ( HUGS) )

  • Thanks so much for sharing.

    Now that you mention it I think I heard that somewere, about L5-S1 not being a great disc replacement "local" :)

    It definatley is a little puzzling about what to do. I have surgeries, or deal with it. I don't really want to go for the injections because I am a believer in your body giving you pain so you know not to do something. So...I would personally rather try and fix the problem instead of covering it up and potentially doing more harm.

    I saw your siggy about your recent health problems, I hope you get the news you are looking for so you can go ahead with your treatment. Good luck. :)
  • when I was at the stage before any surgery, I was doing everything I could to not have surgery. I just had heard too many bad experiences. I went to the chiropractor, exercised, did "mind over matter", you name it. Denial was BIG during that time.

    And now, permanent nerve damage. I don't know how long is "average" before nerve damage becomes permanent, but I didn't have long at all. Of course, I didn't get confirmation of that for several years, but the pain never went away, never got better, only worse. I have no further surgical options, nothing is impinged, I look "great" on MRI's, CR's, Xrays, etc. Only the EMG finally showed the cause of my burning 24/7 pain, hence the SCS (spinal cord stimulator) journey.

    I had a manual physical therapist tell me that to give your disc a chance to heal, you MUST not bend, lift or twist, no matter what. She said not to bend brushing your teeth, nothing. And I tried that but not as seriously as I know wish I had done. She said if you do that for several weeks, you disc might "suck back in" and try to repair itself. But normal life, bending, twisting, lifting - dishwasher, face cleaning, yada yada - how do you not twist?

    See if you can try it for a week and note any improvement, if any. I wish you great luck!!

    P.S. She was a "manual" physical therapist and her therapy was no amazing. So different. Really related to releasing myofacial pain, I think. I never fully understood, but it was not anything like traditional physical therapy. Have you ever heard of that?

  • Hello Tiffany,

    Sorry you are having these spinal issues.

    Yes do speak with doctors to get several opinions. And I would highly recommend that they be spinal surgeons. The VERY best spinal surgeons you can find in your area. Also consider neurosurgeons. Make several appointments with those doctors at the top of your list.

    "I don't really want to go for the injections because I am a believer in your body giving you pain so you know not to do something." I totally agree that you do not want some injection that will prevent your body from knowing something is wrong. That type of injection is generally called a "nerve block".

    Tiffany, there are also injections, epidural injections which contain a corticosteroid. The corticosteroid does not "deaden" the pain, but rather it reduces the inflammation causing the pain.

    I have had 3 of the corticostgeroid injections (ESI) for the pain I have at L5/S1. They are given by my SUPERB pain management doctor and he uses a fluoroscope to help him get the medication to precisely the place it must go. To date each one has helped reduce the lower back pain because the medication has reduced the inflammation.

    I would suggest that you speak with the doctors you will see and get their opinion on ESIs.

    Over and over again I have had spinal surgeons, my PM doc and others say "Surgery is the LAST option".

    I wish you the very best.


  • You cannot go back from surgery, not ever. However, be careful not to wait too long or you may do irreversible damage.
    Consult many doctors until you have all your questions answered and you feel comfortable with the surgeon. Like a husband, you will know when you have found the right one.
    I had my 360 fusion with hardwear and an ADR(artificial disc replacement) 7 weeks ago. I woke up without any back pain other than incisional pain. I went home the next day after spending most of the night walking the halls.
    I never thought I could feel this good again but I do. I would do it again tomorrow if it needed to be done.
    Best Wishes to you Tiffany.
  • I just started physical therapy a little over a month ago actually. She is the first and only one to tell me that my pelvis is really out of alignment. Apparently its from standing with weight on one leg, sitting that way etc. I also have flat feet though and I think that may be part of the problem. She told me the same thing they told you...not to bend etc etc. I was told that right before the holidays and...yeah right. lol. Its nearly impossible to not bend, twist, lift and all that good stuff. I havent seen her in a couple of weeks due to the holiday but Im seeing her again wednesday with my new MRI report. I havent heard of that kind of therapy before. I will have to look it up. So far all we have spent time on every visit is her trying to straighten my pelvis out. Ive done the electrical stimulation a few times but i never seem to feel it.

    Im thinking of looking into the corset/brace route. At least that way bending isnt quite as easy and I might be able to catch myself before I do it. It worked for my mom years ago when she had a herniated disc.

    Thanks again for your advice its much appreciated. :)
  • Thanks for your reply.

    Its nice to hear someone who's surgery was such a success.

    I hear you on the not waiting to long...its been a worry for me during these years. I feel like my age is working a little against me in the respect that...i have a whole lot of years left (i hope :) ) to age and degenerate, and I dont want what i do or dont do now to set me up to be worse later in life.

    decisions, decisions.

    Thanks again for the advice.
  • L5-S1 is not a bad location for disc replacement. Most ADRs are only FDA approved for L4-L5 or L5-S1. The thing is, though, that L5-S1 fusion is very, very minimally limiting when it comes to range of motion. L5-S1 to begin with doesn't have much range of motion... So it's really not that big of a deal to fuse it... IF you have to have a fusion, that's actually the best area to have it done in.

    I think it depends on your situation, not entirely your age. I'm 22 also and had a 360 (front and back) fusion...But I herniated the same disc twice, as well as having degenerative disc disease there. The second herniation was impinging my nerve so bad I pretty much had foot drop in my right leg and it was useless... All strength in my foot was gone, my leg was going numb, and they refused to leave the pressure on there because Iw as risking permanent damage.

    I think you should go for as long as you can without fusion surgery. I really didn't have much of a choice. The thing is that fusion surgery really shouldn't be done because of pain... It should be done because of instability or to prevent damage to the spine or nerve damage... It generally isn't used to get rid of the pain. It rarely actually DOES get rid of the pain. It's not unheard of, but it's just not exactly a good pain control method. Most people I know personally who had fusions still have pain. The only difference is that they are not risking nerve damage anymore, and they also have a much more stable spine.

    It really depends, I guess. If you feel like you can't handle the way things are, then go for it. But fusion should be the LAST option, after ALL ELSE has failed, and there is no other way to treat the issue. Sometimes fusion CAN fix pain and sometimes people live a great happy, healthy life afterward... But it does increase the chance of adjacent discs going faster, and possibly needing more surgery in the future.... Which is why most doctors will put it off as long as possible, and when someone is young, only do it if absolutely necessary.

    As for disc replacement... My honest personal opinion is that being young, it's a bad idea. It hasn't been studied enough. And the thing is that if you research the different types of ADR, you'll see what the requirements are and how it's nearly impossible to find a specific material, a specific technique, a specific mechanism, etc.. That will last for the long run. Right now they have no idea how long ADRs will last. If they only last 20, for example, you could have 3 more of them in your lifetime! That wouldn't be a good idea. I think fusing L5-S1, IF necessary, is a much better idea. I wouldn't mess with ADR this young, and this early in the game research-wise. The first FDA approved ADR performed in the US was done less than 10 years ago... I don't know. It's personal preference, but messing with something like that scares the crap out of me. My Neurosurgeon and her partners are VERY up to date, trained in the most advanced and minimally invasive techniques... But they refuse to do ADRs. No one in my area will perform them. I don't mind, though. I'd never, ever consider it. Just my thoughts, though.

    Good luck with whatever you choose. Hope you find a solution to your problem & relief for whatever symptoms you may have.
  • Lo,

    Thanks for sharing your story. I totally agree with you in regard to there not being enough research done on disc replacement. That has been one of the most aggravating thing about all of this.

    I feel that since most of these problems occur in older people they arent spending any time researching the outlook for younger people that it does occur in. I was browsing through clinical trials and a good portion of them are for 30-40+.

    I am planning on holding off as long as possible on surgery. My main goal right now is to set myself up for the best possible future, whether that be surgery or no surgery. Just trying to get different inputs and research procedures and outcomes of different techniques in different age groups etc.

    Thanks again. :)
  • Hello Lo,

    "But they refuse to do ADRs. No one in my area will perform them." My question is "why not?" There must be a reason or reasons. Did your doctor tell you why not? If not, when you see your doctor the next time would you ask her "why no ADR surgery?".



  • I agree with Rich, they must have reasons.

    My L4/L5 instability was the reason for the ADR. I am pain free for the first time in years and I did exhaust all options before finding the right surgeon. My surgeon designed and has patented the ENDOSKELETON titanium disc replacement. He is also co-founder of this website and is sought out for his teaching of the use of this device.

    If you are in pain you will seek out whatever you can find to relieve your pain. Even though I do not feel this procedure is too new, someone has to show the way toward progress so we can all benefit from technology.

    Nobody knows how much time we have on earth so I try to make the time I have comfortable.

    Best Wishes to you
  • It's just their position on the whole thing. They feel the risks outweigh the benefits. First of all, they have not yet proven that disc replacement actually does prevent adjacent levels from going sooner. It's the idea... It's what they're ASSUMING, but there is no actual proof. They haven't done it long enough, nor have they done enough to compile enough statistics to prove such a thing. This being said, my doctor has seen many, many people who have had life threatening situations from their ADR, and also, it's VERY common for the ADR to slide back and forth inbetween the vertebrae. The slipping back and forth isn't life threatening, but it can become life threatening at some point.

    The head surgeon at my N.S.'s office graduated first in his class from Boston University, has authored book chapters, has spoken all around the world... Is board certified, (not just eligible, like many surgeon's are.. Even good ones.) He is VERY, VERY good at what he does. They are VERY much into advancements, but not at the expense of a patient's well being. They do not support it and as of right now, they refuse to do it until more research has been done.

    I'm not judging anyone who has had it done, or wants to have it done... But everyone has the right to trust their doctor, and they SHOULD trust their doctor. It's really no different than someone trusting their doctor and believing ADR is better than fusion. They have that right, and I have the right to trust my surgeon that fusion is better than ADR at this point, and trust that it's not safe enough for their comfort. My doctor agrees it's a good idea. ON PAPER. But the execution and the studies are not near where they need to be yet. Some surgeons jump on the bandwagon early. Mine choose better safe than sorry. That's just their personal beliefs, and mine as well. I'm not a risk taker. Just my position, that's all. Nothing wrong with those who see it differently.

    Hope you're doing well & enjoying the start of a new year!
  • I heard a while back that disc replacement is not suitable for people who have DDD or chronic degenerative endplate changes. Is this true? I always wondered why artificial discs were never an option for me. Does anyone know about this?

    PS I think this may answer Tiffany's question too :) Thank you.
  • Not sure about DDD, but I think with the endplate changes, it increases the risk very significantly, of slippage and the possibility of the entire ADR becoming dislodged and the corrective surgery is MAJOR.
  • Ok, my doctor just recommended two disc replacement. I would like to ask a question to those whose doctors told them that this will slip out, did they tell you they would fixate the discs with screws and rods from the other side? This is what my surgeon told me. It would be pretty hard for it to go anywhere after that, at least I would think so. In other words, it is a 360. I can see if they just shove the thing in there an then leave it without securing it some other way, but that seems incomplete and unstable to me. /:) Please advise....
  • Hello Lo,

    Thanks for your post and the info you provided. Much appreciate.

    "it's VERY common for the ADR to slide back and forth inbetween the vertebrae. The slipping back and forth isn't life threatening, but it can become life threatening at some point." And that Lo, when I saw photos of the device, I wondered about. You/your doctor have confirmed. Really hits one between the eyes doesn't it.

    Is the problem for all ADR devices or just one or two? Please reply by PM.

    Hope your day is going well.

  • Hello Pika,

    "someone has to show the way toward progress so we can all benefit from technology." YES Pika, very well stated. It isn't that we spineys should take foolish risks, of course not. AND you didn't Pika, you did your research well, and made the decision that you are comfortable with.

    We each in our own way as spineys have to make difficult decisions I know.

    It took me several months in '07 to come to the decison I did and still feel comfortable with.

    NO surgery as long as the ESIs work and no "emergency" situations arise.

    Fusion wil be the VERY LAST OPTION. For me it has TOO many risks and without a doubt would prevent me from continuing with my very active form of gardening.

    For me, I will research new alternatives to fusion. I will follow the clinical studies and the advancement of the various devices. I will also research the doctors who participate in the clinical studies for I do want a surgeon who has performed surgery using a new procedure/device which preserves the movement of my spine.

    "Nobody knows how much time we have on earth so I try to make the time I have comfortable." SUPERB!!!!

    I would like to invite all of you to post and participate on the "Alternative Procedures to Spinal Fusion" topic.


  • I must say I have never heard of using 360 securing of the replacement disks in the lumbar region. Also, I thought the FDA only approved 1-disk replacement for the lumbar region and 2 for the cervical region?
  • i too am interested in this 'securing' thing for the ADR, as well as this 'slippin' out stuff. :)

  • I never said there was anything wrong with people choosing ADR... No need for anyone to feel they have to defend themselves. I was simply stating my personal opinion, and my reasons for such. As well as my surgeon's reasons. That's it. You really have to present both sides, not just one... So I think it's beneficial for me to put my 2 cents in here, along with those who support disc replacement. There is no judgment there... Just sharing my thoughts. Ya know? Everybody is allowed to see things in their own light and is allowed to make their own choices regarding their own treatment in their own lives. I'm sure we all trust our individual surgeon's or we wouldn't be letting them treat us. Lol.

  • I have the same surgeon as a previous postperson. My ADR was also in conjunction with fusion. I don't fear the disc replacement dislodging although I have heard of it happening when a device is used as a stand alone device, which is not recommended. The reason I have no fear is twofold, first, I have an excellent surgeon who invented a better device to use and second, I cannot worry about what might happen if I were to get ripped apart by a train because that's the only way my disc replacement is coming out.
  • I'd go with the fusion. It's one level, you're young, you can do physical therapy and learn to keep you back and your body strong. I'm 54. I just had a three-level spinal fusion. It's been six weeks today and I can tell you that I really wish I hadn't done it. BUT, the hard work of physical therapy hasn't begun yet. I'm just recovering from two loads of major anesthesia within four days (I ended up needing two surgeries, oh JOY!). I really believe that when all is said and done, and about four months from now, I'll be glad I did it. And, as I said, I'm an old fart. If your endplates are degenerating, I'd go with the fusion. And, I wouldn't wait for them to degenerate further.

    Just my opinion, I could be wrong

    3 level spinal fusion, L3/4, L4/5, L5/S1, November 2008. Stiff, but I can walk.
  • Your opinion can't be wrong, silly!! It's your opinion & it can be whatever you want :)
  • People really need to exhaust their options and it's a good thing to get two people to disagree in a proper way. Thanks for you respectful side in this, it is good for all of us. Good Luck on your exam tomorrow!
  • Very well put. It only works if both people respect each other, as you and I do. We feel differently but neither of us would insult or judge the other for it. It's a constructive debate/disagreement and it is productive and only serves to benefit!


    Thanks! I will let ya know how it goes! :)
  • My Dr is the co inventer or the X_stop.He is suppose to be one of the best in the USA. He told me he could fuse or do the ADR.He said fuse leaves you with limited mobility and the recovery is much harder then adr.I asked if he were me what would he do and he said ADR so thats what i am going with I know a man who had id done about 9 yrs ago after having several other back surgeriesd and he is doing really good.They say they last about 20 years and I am 35 so I probably will have to have it done again if I live that long.My surgery will be done 1-20! Not too far away.
  • I think I have read before also that insurance companies are reluctant to pay for two levels, it will be interesting to hear what mine decides. Regarding the slippage question, I have to admit that I may have "interpreted" the explanation by my physician on how these are secured. (Ya get a lot of info in one day you know what I mean? ~X( ) Anyways, perhaps the spinal fusion that is done after the discs are placed is for additional stability rather than actually holding the artificial discs in place? I am glad you all brought this up and have the different opinions. I will have to ask my surgeon these specifically at my next appointment.
  • I thought X-stop was not an ADR? I was told x-stop is a device used as a spacer between the two vertebrae to lift the pressure off the nerve... As far as I knew, x-stop is reversible and is not attached with any hardware and does not involve changing the anatomy at all.

    Is there another x-stop that IS an ADR? The x-stop I know of is not an ADR at all... The procedure does not touch the intervertebral disc. I googled x-stop to check my info, and it's all regarding the one I described above.

    Could you link us to info on the x-stop that is an ADR? I'm interested to read up. Love to research :)
  • The X-stop is a spacer imputed between vertabrae and is not fused or connected via hardware. A ADR takes the place of a defective disk and can or cannot be secured with hardware depending on what the surgeon is trying to achieve. I really can't see securing it as it would defeat the purpose to allow uninterrupted back movement.
  • Yea I am of the same impression about the X-Stop.

    I saw that you mentioned you were 35 lisa, I could have swore the X-stop was only FDA approved for people 50+.

    I know when I asked about it thats what I was told, and the website for the product says the same thing. I would love to hear more about what you are having done and/or how you got them to do it under age 50. :)
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