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in pain and worried sick

strakerstraker Posts: 1,851
edited 06/11/2012 - 8:37 AM in Chronic Pain
as some off you know i was given bad news the other day .i am no longer suitable for {normal} spine surgery ,the only option open to me is ADR {artificial disc replacement} and i would need it doing at three levels .so not the easiest of operations .i have an MRI scan coming up shortly .then a consultation with a consultant .i know very little about ADR and i feel out of my depth with this one .i am normally giving out advice to others but now i find myself hunting for answers for my own problems {i have found a UK web site that is only for ADR and the founder is going to contact me for a chat as i explained that i was very worried and clueless!}.i would like to thank everyone that has PMed me and i think that you will understand if i am not on here as much as i normally am .this is due to extra pain and lack of sleep and i need some thinking time to get my head around this new obstacle .personally i feel cheated because i was told that if my original operation was done today i would have been fine .it was done over 12 years ago and technology has improved dramatically .my last operation was {from what i can tel} a waste of time as the surgeon had nothing to work with {this is what i was told last week } there is no healthy tissue left in my lower back and i need new discs ..this is a very terrifying diagnosis as i am only 43 this could mean revision surgery every 5/10 years depending on how the replacements hold out ..the other option is i do nothing and see how long i can last on pain killers alone .i am at the stage where my life is just pain killers and recliner {i am not lazy and i try to do normal stuff but i just carnt do it due to pain}.i am grateful to this site and all the kind caring people that genuinely do care about each other ,to anyone that knows me on a personal level i am no longer on face book /skype and yahoo so if you want to contact me please use this site or my email
my little laptop carnt cope with too many things and kept crashing so i have lightened its load and its working a lot better now
thanks to you all


  • keep in touch Tony....i wish you and Kat well.

    all my love to you

    LOVE P
  • Tony -drop by and pop into chat- We'll keep a look out for you!

    I too am in my 40's - and don't like this at times, but there is not much to do but accept it and come up with a plan to get through it.

    Always -David
  • i'm glad there is a possible option in the adr. i have heard of excellent outcomes with the adr especially in europe where the drs are very experienced. some studies have shown the adr to be more effective than fusion. plus recovery time is less...i think you have reason for hope....hang in there pal
  • =(( Thinking of you and Kat and hoping for better days ahead for you. I just know that there's a solution out there for your situation and ADR may just be the ticket.

    Take care O:) and chat soon,

  • your optimism ..i have found a site with good information in the UK and also found out the best surgeon to see {no names allowed i know!} and the surgeon is not too far away from me .unfortunately my surgeon dose not do ADR and the person the xxrecomended has xxxxxxxxxxc\[you can guess}so i will require another referral that will take time .but if i am a suitable candidate for this operation i want the best ..and don't forget we are about ten years behind the USA in technology terms .the man that i was talking to today on the ADR site could not believe that i was opened up fully again for my last operation he reckoned that it should have been a minor procedure not another major operation .{no wonder i have not fully recovered}.i am in the early stages of this and its come as a shock to both me and kath .i don't want to be someones guinea pig and as i have extensive facet joint syndrome i personally don't even think that i am suitable for this operation anyway.only time will see .meanwhile i am still waiting for the MRI scan
  • I sent you a PM a little bit ago asking about the no healthy tissue part in your back. I'm perplexed with this statement from your Doctor. What does it matter if the discs are shot? During a fusion, they're going to remove the disc and replace it with a bone graph. You should get screws and rods to hold everything in place and if you have a 360, you'll even get a cage. I would think with your history, the surgeon would rather stabilize your back in one position rather than go the route of ADR, whose goal is to preserve as much range of motion as possible.

    There's a member on SH who has had a 3 level ADR. His id is Triple Lumbar ADR... (http://www.spine-health.com/privatemsg/msgto/9311).

    Please don't take me wrong here, I really don't understand your surgeons statement. I would think at a minimum he would at least wait for the results from the MRI.

    Keep us posted.

  • when i say a normal spine operation i mean .no more laminectomies /discectomy and i was told by the surgeon only last week that a fusion would be out of the question because there was not enough healthy tissue to operate on .{his words} i have been talking to a man over here who runs a site for ADR paitients and he rang me this morning and we had a chat for about an hour he has told me not to have the operation at my hospital but has given me the name of a very good surgeon and told me to get a referral to him .so if i am suitable that's what i will do .i am still trying to get my head around this ..to me its scary stuff and will it work ? will i be worse off {god i hope not!!} this man i talked to today is 73 and he had his ADR done in Germany 7 years ago he has no back pain and leads a normal life ..it sounds too good to be true ..i don't know your feeling on ADR and i would like to know what would you do if it was you? maybe we could start another thread? i need to get the MRI done first then we take it from there.Micheal you don't have to mow my lawn as all my garden is block paved and my car lives on the front garden !!we just have a little flower bed that runs down the side and kath manages that ..i am lost with ADR but i am learning fast its not to be taken lightly ,,its just a shock to be told that's your only option
  • I'm still confused with the comments from your surgeon. I would definitely discuss this subject when you see the other surgeon. I was not a candidate for ADR because I have pretty severe arthritis along with my other issues. I have read that should ADR fail for whatever reason, they will ultimately perform a fusion, which brings me back around to my original question.

  • If I had to choose between being bound to pain killers and a recliner from this day forward, or take the risk and gain another good 5 or 10 years while technology catches up ... well I'd jump at the chance for those 5 to 10 years.

    Just what I would do.

  • Tony, I agree. I would take the ADR, and have at least a few good years in. And if it does come to it, then have those replaced for another few good years. Also, just because they say 10-15 years, doesn't necessarily mean they will spontaneously combust (lol) during that timeframe. If you're careful, they could last longer. I was just talking to a man the other day, who had both knees replaced 20 years ago (he was told 15 max), and is still going strong.
    HAVE HOPE, stay strong, and try not to worry until you have all the facts and details and surgeon's opinions.
    APROUD CANADIANveteranButNOTa doctor, my thoughts are my own
  • Straker - like you -mine is facet joints and the disks. They ache like heck and make life, well -challenging is one word.

    To be told that there is not good tissue, to repair the problems you have-- must be a shock. Like my own diagnosis. I am told for 25 years, There is no reason for this, BOOM, TOday you have this and I[DR] screwed up. [Thanks Dr- I really appreciate that]

    This is the kind of paradigm shift in thinking that throws all of us for awhile. To not be in a mode of questioning everything, is to be unconnected to reality. Like - you - I have been told that "This" would fix me and "that" would fix me. The path to today has been paved with empty broken promises. I certainly understand the reluctance to believe anyone, no matter how old they are. Still though, I know that technology and updates to surgical procedures are ensuring that improvements in how to care for the worst of problems are getting sorted out.

    In the end, I have to make decisions based on the best information that you have right now. As well - reserve the right to change your mind, as new information becomes available!

    I know the hardest thing too, is trying to think through this when you are also sleep deprived. I hope your Dr can find a way to allow you some relief.

  • I never answered your question on what I would do. If I were in your situation, I would seriously consider anything that might provide me an out from my current predicament I would do what Michael suggests and write down as many questions as I can think of and make the new Doctor answer all of them.

    I still think you need to inquire why fusion surgery is not possible with some more specifics. Fusion surgery isn't as bad as it sounds and if not for my broken nerves, I'd only have to deal with my arthritis and SI Joint Dsynfunction.

    I am going to poke you hard on one thing, QUIT SMOKING! This is a contributing factor to your back problems. As someone who smoked for over 30 years, I understand the struggle. Ask your primary doc for some Chantix, it worked wonders for me.

  • That sure is a lot to think about. I know that you will research thoroughly and listen to every recommendation made by these specialists. It's up to you whether or not you decide to put yourself through this very invasive procedure, and I pray that it works and that there are no further complications. You know how it is with spinal surgeries...no guarantees, no refunds LOL. I hope I didn't discourage you. Only you know what's best for you and how much you're willing to go through. I'm in my thirties and am not a candidate for ADR because of extensive disc degeneration and facet arthritis. My only hope is to get my pain pump implanted. Anyway, please keep us posted and I hope that everything goes well for you. Take care
  • I'm just going by what my doctors have said. The MRI's have shown I have chronic degenerative endplate changes too. Believe me I have asked why I couldn't have a disc replacement. For now, I'm not a surgical candidate unless I blow another disc out or develop instability for example. This is also why my doctors decided that a pump is the best option in my case.
  • It was explained to me that ADR will place additional stress on the facet joints. ADR is not an exact swap out of a disc. There is cost, just like fusion has it costs. If you have severe arthritis in the facet joints, ADR will accelerate the deterioration of those joints, at least thats how it was explained to me. The benny to having fusion if you have facet arthritis is that the joints move very little after the fusion or in my case, they ground up my facet joints and used them in the bone graph when I had my revision surgery.

  • I have learned somebody will be better off having ADR if they only have one bad disc while the others are in relative good condition. The more levels you do, the more risk involved. Many of us also have insurance policies that favor fusions above disc replacements, and that's why more people are fused in the US. If we lived in Germany, the chances of having ADR done is much greater from what I've heard.
  • I thought I'd send these your way >:D< >:D< >:D< >:D< >:D< >:D< >:D< >:D< >:D< >:D< >:D< >:D< >:D< >:D< >:D< >:D< >:D< >:D< >:D< >:D< >:D< >:D< >:D< >:D< >:D< >:D< >:D< >:D< >:D< >:D< >:D< >:D< >:D< >:D< >:D< >:D< >:D< >:D< >:D< >:D< >:D< >:D< >:D< >:D< >:D< >:D< >:D< >:D< >:D< >:D< >:D< >:D< >:D< >:D< >:D< >:D< >:D<

    =)) Seriously now, I know you're not the huggy, kissy type so I'll just say that I hope your surgery is a success and that it brings you relief. Take care :D
  • Michael,
    Sounds like the rods at L4/L5 may be transition rods that relieves some of the load put on the "good" discs by the "real" fusion with stable rods between L5/S1. Sound right? Can they/do they do instruments and ADR??? I'm curious and have been following Straker's story too since my husband is bound to wind up with back surgery. His back is a total mess so they don't know what will happen in the long run. I considder myself lucky (?) that my issue was pretty straight forward.

    I can't imagine anyone else but you putting off surgery because they didn't want to miss lawn mowing season! lol I tried to avoid the surgery before summer and motorcycle season but since I teach and have 2 months off in the summer, I couldn't convince anyone that it would better for me to wait until, oh maybe the beginning of November.

    Tony, I hope you get some good news soon. Keep digging!
  • i can answer some of your questions .there are 2 major brands of ADR used over here .one of them can be replaced should it fail as it is a wedge type fit like a bush on a suspension arm on a car ,it is a surgical steel cage with a teeth that bind into the bone and there is a polypropylene bush that is wedged in between the cage .the other method is a bit more tricky its similar in design but instead of teeth the surgeon has to grind out a slot then its bolted in then the bush is fitted is a similar way {please don't quote me on the exact methods as i am not a surgeon i am just reading and interpritating in to laymen terms } i am the first to hold my hands up and say when i don't know ,the time that the device last depends on ..how well it was fitted in the first place and on the individuals body make up {how heavy you are etc} they say that the device should last any where between 5 to 20 years ..YES i know that's a massive difference but its what i have seen on the Internet sits .at the moment i would not be a suitable candidate as i smoke and i am over weight .i would have to loose about 2 stone and quite smoking .as the operation is performed {from the front } all your insides have to be removed to gain access to the spine ..this in its self is dangerous as major blood vessels and other main structures are exposed {a vascular surgeon should be present should anything go wrong} then the chopping can begin!! they remove the defective bone and replace with the ADR then they put back all your insides and stick you on a high dependency ward and hope you can wake up and walk !! ..its very early for me to be getting too hot and bothered about this surgery as it would take anything up to two years for me to get on the table ..i apologise if any of my explanations are some what lacking is the detail that you would like ,and i don't mind being corrected on any points .i am on a learning curve ,and grateful for any sensible input
  • Have to poke you also especially if you're heading for another fusion. Smoking inhibits bone growth. My wife is the one who convinced me to quit after she cut me off until I rectified the situation. I still yearn for one every once in a while but the benefits now out weigh the yearning.

  • Sorry to hear of what you are going through. No matter what decision you make, it's going to be tough. I understand your concern for being worse off. If I had an option to do ADR I would. That was the spine surgery I was originally supposed to have but insurance wouldn't pay so settled for fusion. I would've only been 1 level though and not suffering as long as you. I will say extra prayers for you and hope all goes well. Keep us posted. I do have you email so I will keep in touch. I'm really glad that you found a good site in the UK and actually was able to talk to the guy. That was very nice of him to give you that info. I hope everything works out for the best for you. You've always been there for everyone else and you really deserve some good things coming your way.

    Take care my friend and send me an email or PM anytime you would like to chat.
  • I know the pain and worry you have been going through.
    I completely understand your concerns about this prorcdure.
    Right now Tony you need to get rest and sleep! Try to put it out of your mind right now and rest.
    I know that is easier said than done.
    Worry and stress shoots your pain up and it's so hard to think when your pain level is up. Do you take anything to help you sleep? I take one 0.5 mg klonopin before bed time and it helps me sleep. It is not a sleeping pill but a nerve pill. It does not leave you with a hang over like sleeping pills do. I can't take those things.
    Please Tony....push it out of your mind right now and rest.
    Look at things in a few days with a fresh and alert mind.
    You know we are all here for you. You have always been here for us. Package all that worry and stress up and mail it to someone.
    Sending you positive thoughts
    Your friend from across the pond
    Patsy w :H
  • No advice or suggestions. Just heartfelt hope and wishes that you will find that something can be done and give you relief, and a (semi)normal life. I'm sure it will take awhile for the tests, etc. to get done, and find your best options. Have they scheduled the MRI yet? Hang in there, inside every cloud is a silver (bullet) lining..........hum, just thought, do they have Coors in the UK? AKA the Silver Bullet. Just trying to get a :D from you. Take care.

  • Just wondering how you're doing today?
    APROUD CANADIANveteranButNOTa doctor, my thoughts are my own
  • i am just resting ..after yet another bad night .i was going to go for a swim but don't feel up to it and its cold over here so its a warm room comfy chair and watching old episodes of space 1999 .my idea of heaven! how sad i am i??
  • Straker I realize we do not know each other as I am so new to this forum. However please do know that I also care and will be sending you all that I have in healing thoughts and prayers ♥
  • It surprises me that I rip people now, now that's a hoot. No Hot Tub for me until next week. Hell, no shower either. I'm gonna be pretty rank come Tuesday.

  • the sleep deprivation .i can get in my extramley expensive and comfy bed .and no matter what time and how many drugs i have taken .3 hours max then i am in agony and have to get up so every night my sleep is disturbed at least two times so come breakfast i am knackered and ratty and fit for nothing.sometime i will ..despite feeling lousy ..drag my sorry ass of to the pool and swim then i will get home and sleep a bit more ..my hobbies were walking my dog and swimming but both are virtually out of the question .i know that i need to do something with the hours that i am awake but again..due to the sleep deprivation i find myself ironing at 4 am of trying to clean the kitchen or something to keep my mind active ..i also read a hell of a lot .and spend time on here .if i could sleep for 6 hours and wake up in pain then take pain killers and be able to do something like i could a few years ago .i would be happy.but as i keep saying i have not slept more than 3 hours since the last operation ,,that in itself is torcher ..i have been reading a lot about ADR and it looks like hell ..i have received emails from people that have been following my story on spine health {some members and some not}and i have been warned not to undergo the ADR way .there are claims against one of the main suppliers due to failing of the device and instant paralysis and even death!! ,,not worth the risk ..i would do some reading yourself Micheal if you were thinking about for yourself.
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