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whats the truth folks ???

strakerstraker Posts: 1,824
edited 06/11/2012 - 8:46 AM in Chronic Pain
fusions .for the last 12 months i have read loads of posts /emails and various items about fusions .i have never seen such conflicting information in my life !! some DONT DO IT ..it was the worst thing i eve did .then others say the best thing i ever did ...and this is not just the patients .doctors are undecided about this kind of surgery too .over here in the uk many hospitals wont do ADR and are reluctant to do a fusion .but i have talked to patients {on here and other sites that have has very good results} as many of you know i have a discography coming up on{23 sep} and i thank you all for you support via emails and PMS .this may lead to a multi level fusion .as you can imagine i dont want to make another mistake .i have a wonderful surgeon ...but i am only human and i am scared stiff about being made worse ..i dont think i could stand it ..bottom line are fusions SAFE ????
tony
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13

Comments

  • Not sure what the truth really is. Will you die from the surgery, probably not. Will it improve your condition? The odds ore in your favor, but to be honest there are the few who end up with complications. We rarely hear about the success stories cause they have no reason to complain or search for answers. I can only speak for myself. My two level fusion was successful in that my back is stabilized. Granted, my surgery was more than a fusion and decompression, but that's not really important anymore. Sure I have back pain but its more of a nuisance than a hindrance. I do have the Arachnoiditis problem now, but nobody really knows when it started. I guess its a complication from my own procrastination, at least thats how I prefer to look at it. In my humble opinion, fusions are safe and are a necessary evil for those who's back is slowly deteriorating.

    Hope this helps and eases your mind a little.

    Dave
  • I don't know that I can answer your question as to whether fusions are safe or not. What I do know is that I have had to take the chance that surgery would help me more than it would hurt me. I couldn't continue to live in the pain I was in and it had breached all other treatment options. I was offered a C2 ganglionectomy and I went ahead with the surgery, knowing full well there were some incredible risks involved. Things didn't turn out quite the way they were supposed to and of course there's no "reset" or "undo" button. The good news is it took care of the pain it was meant to. The bad news is it caused a stroke, damage to the eighth cranial nerve and denervation of the muscles on one side of my neck. Not a picture perfect outcome.

    Would I do it again knowing what I would be facing in the aftermath? Yes. Even if my pain wasn't dealt with, I would still do it. I just know that I couldn't live knowing there was one more thing I could try, and not giving it a try. I hope that makes sense.

    I was scared stiff going into all of this. Scared of the surgery and scared of the thought of trying to live my life the way it had become prior to surgery.

    It's kind of like this joke
    joke said:
    As the flood waters were rising, a man was on the stoop of his house and another man in a row boat came by. The man in the row boat told the man on the stoop to get in and he'd save him. The man on the stoop said, no, he had faith in God and would wait for God to save him. The flood waters kept rising and the man had to go to the second floor of his house. A man in a motor boat came by and told the man in the house to get in because he had come to rescue him. The man in the house said no thank you. He had perfect faith in God and would wait for God to save him. The flood waters kept rising. Pretty soon they were up to the man's roof and he got out on the roof. A helicopter then came by, lowered a rope and the pilot shouted down in the man in the house to climb up the rope because the helicopeter had come to rescue him. The man in the house wouldn't get in. He told the pilot that he had faith in God and would wait for God to rescue him. The flood waters kept rising and the man in the house drowned. When he got to heaven, he asked God where he went wrong. He told God that he had perfect faith in God, but God had let him drown.
    "What more do you want from me?" asked God. "I sent you two boats and a helicopter."
    To me it seems as if you are in a similar situation. I know I was, and I had to take that risk. So when the "man in the row boat" came by, I climbed in. So yes the boat struck something and sank throwing me into the flood waters, but I survived. So even though the outcome wasn't perfect, it accomplished what it was intended to.

    I hope this makes sense and doesn't sound too crazy. It's good that you are questioning the procedure, but don't forget your struggles that have led you to this point.

    Good luck,

    "C"
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  • It's totally your choice...I was very good after my l4,l5 fusion....well after doc went back in after i was fully fused and took out hardware (my screws came loose)
    Now just the ones in my brain are...
    For me i got 5 different opinions and 4 of which were the same...
    I knew all the things I had tried didn't help at all..and it got so bad I couldn't take a baby step without screaming..
    I did what I was told during recovery and my fusion was fine...and yes I would do it again if had to..
    For me I was plain dumb I was working 2part-time jobs last yr and one was very active bending,lifting and too keep my job I tried keep up with the fit 20yr olds....so was dumb for me I way over did it and push thru and ignored the signs something was wrong....
    I now do not work ....outside the home..
    I think sometimes you can also read too much
    And it is very normal to be scared...
    for me fusion was a good thing and I hope you can ease your mind some....
    great words ther C nicely put I wish my brain worked so good...fibro fog here so much
    Hope I made some sense and C love that joke
    gonna copy that one
    tc tony and keep us posted
    mary
    neck,bone spurs pain started 04, back issues and fusion l4,l5 06~hardware removed.
    good few yrs. 09 pain sharp, numbness feet,legs, diagnosed fibro, neurop. legs.lung issues.
    daily goal do good thing for someone.
  • It sure would be nice to see some stats on this very topic. I am sure insurance companies keep records of what operations are safe and which are not. Getting to that information is impossible. No two situations seem to be the same so that makes it all the more difficult to try to figure out.

    I agree that most of the people that you read about on this site have not had great outcomes for whatever the reason. This site should be able to do a rough estimation of the number of good outcomes just based on the number of members that sign up, have surgery, recover and don't come back. It would be a great question to ask your doctor as far as what he see's. He may not be wanting to talk about the success/failure rate because no two situations are the same. As you know there are also many different types of fusions and different ways to get to the same end result.

    What are your other choices? It is a life changing surgery for most of us and most have to take a fresh look at what they were doing before a fusion and what is best to be doing after a fusion. Lots of doctors will tell you that you can go back to your old life after the surgery. To me this is nothing more then a sales gimmick. Yes you can get your back feeling much better after the surgery but keep in mind that the loads on the spine now get spread into other areas, top & bottom, and those areas were not designed to carry the additional loads. To me, and this is my opinion, anyone is silly not to protect the spine against added loads. This includes running, weight lifting, lifting weights, and most forms of bending and twisting. Even climbing a ladder will change the load dynamics on your back. It is very hard to face this harsh reality. It is even harder to make the changes that are needed.

    If I had to do it again I would in a heartbeat as its helped me. I am not back to where I wanted to be but I am way further ahead then where I was.
  • all i know is that when i had one, the disc above it failed and had to have another one. now i have trouble walking without pain. you have a hard decisiion to make
    jon
    I have 4 fusions from L5-3, the latest last May '12 where they fixed my disc that broke.They went through my side this time. I take 40 mg of oxycontin 4x a day and 4 fenatyl lollipops 300 micro gms 4x a day.
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  • terror8396 said:
    ....you have a hard decisiion to make....
    That's the key. You have to make the decision Tony. No one else can do it for you.

    "C"
  • I have mixed feelings on it. I know without a doubt, I could not continue on with three blown discs, but I don't think I'd do fusion again. It was fine at first; I was pain free until my body rejected the metal. I had that removed after a year and was fine again for a couple years. I think had the arthritis not set in, I would still be fine. SOme people get it and some don't. I had 3 fused together, cadaver bone put in the disc space to avoid future issues and bone grafted from my hips and cadaver to form the fusion. Most of my pain now is from damaged nerves from arthritis pushing on everything and it is bad. It has ruined my life. I had a friend out here who at the time had 25 years of service with the gov. She had the same surgery by the same doctor 6 months after me and ended up in the same boat. The only difference was she couldn't or wouldn't find a doctor to help her control the pain, was always off work and late and did not take advantage of FMLA. She ended up having a choice of quitting or being fired. She had to give up all the fun things she loved to do and her husband dumped her too. Last time I saw her, she looked horrible. She used to be like me, always fixed up - did her big hair, boobie shirts, etc. She looked like an old lady, very sad. I think it's just a toss up - there are no guarantee's. What works for some does not for others. My nephew went thru the same type of thing and just had an SCS installed. I know one person whom it worked well for. I guess it's just a leap of faith if you will. Stay informed and take your time deciding which way to go. Personally, I think it all just sucks. :) Best of luck to you friend. I keep all my buddies here in prayer and I hope we all see better pain-free days ahead sometime, somehow.
  • dilaurodilauro ConnecticutPosts: 13,518
    There have been a lot of good comments posted in this thread. I do believe, the bottom line, is that in your heart you have to feel that this is the right thing for you to have.

    I can not imagine going into any surgery and not really being convinced about the outcome. As Dave stated, is it life threatening? No. But still you would like some understanding that when its over, will you be better or worse than today! I only wish we all had a crystal ball to give us that information.

    I do believe that you do your homework, you understand the surgeries, you understand the conditions and various treatments. That makes your decision based on an educational and informative basis. But we also make so many decisions with our hearts.

    Is Fusion Safe ? Yes
    Does it work ? Yes
    Does it fail ? Yes
    Are patients pain free after wards ? Yes
    Are patients in more pain after wards ? Yes

    So, you almost have to throw out all the various possibilities.

    Trust in yourself, trust in your gut. You have a tremendous ally with you, your wife Kathy.

    Tony, my friend, I wish I could tell you the magic words that would ensure 100% of all good for your surgery. Instead, I will hope and think about you and I know just from getting to know you these past couple of years, you will make the right decision.

    Ron DiLauro Veritas-Health Forums Manager
    I am not a medical professional. I comment on personal experiences 
  • my surgeon {who happens to be one of the finest in the UK and Europe to be more to the point } said to kath and me at the last visit {and this is what is worrying me} ;as you are a high risk case you will have some dark days post surgery and you will hate me ;.i asked why i am i so high risk? he said that anyone that ends up at his door step is out of options .my surgeon has carved out a niche in sorting out back problems when other surgeons have either made a 84LL5 up or refused any more surgery .my other surgeons have all declined more surgery because they feel it would be inappropriate and i would not gain anything from it
    so my options were to stay as i am {taking large amounts of drugs and doing hardly anything in life and i could feel my life draining away...so this for me was not a real option .i am 44 for god s sake ! so after a long talk with my wonderful family doctor and kath we decided that if MR 5 can operate on me i should take him up on his offer .i have read many things about him and most are very good .he has a patient in a similar position to myself ..and after his operation he is going very well ..and this man was told ..no more surgery .go home and be happy that you are alive kind of thing..i think what bothers me the most is i know that i am going to have a big operation and i know the recovery is going to be hard work and i know that i will never be totally out of pain ..but i am also aware that i could die or worse stroke out or even be made paralyzed ..the last two options i don't think that i have the personality to manage that kind of life .if i die then its only the family that suffers .but if things go wrong and i end up as mentioned what will i do ?? i am a very private person regarding my body things like going to the toilet and being washed etc would freak me out .i am about OCD regarding personal hygiene and if i was unable to take care of myself that would drive me nuts .i know it sounds a bit shallow and maybe you think i am a bit nutty .i know i am in good hands with Mr 5 and i know he will do his best ...but what if his best is not good enough?? as Jon said i have a hard decision to make ..i think i have already made the decision if its possible {discography being OK} i will have the operation ..i am sure about that ..at this stage we don't even know what operation Mr 5 can do ..do wont know until the discography has been done .i may not be able to have any surgery if the discography is no good {i have been told that by the surgeon } he has told me that if we a good to go i have to see the rep from medtronics to see if a piece of kit can be made for me ..as the standard kit wont do ...hence the high risk bit ..i think ...so folks its more complex than a normal fusion .Mr 5 is hoping he can help because he genuinely want to help and the hospital is geared up fir my kind of surgery .i believe the operation will cost in the region of 30 thousand pounds ..so its not a cheap operation .i know i have waffled on a bit but the discography is not that far away and what happened next could be life changing or ending!!
    tony
  • I think you would be hard pressed to get a "true" answer to your question because there are so many answers that are dependant on who is asking the question.

    You have patients who (lets face it, are the ones living with it all afterwards) who decide works/not works based on how they feel now, compared to pre-surgery.

    You have doctors that may decide the surgery works if it did what it was "supposed" to do... regardless of whether you are in pain. (we see a lot of that here... similar to what Dave said above... it fixed what they wanted to fix).

    As for statistics...well, as someone who daily manipulates stats based on what someone else is looking for... I can tell you that it would all depend on the definition given as to how they could be tracked...similar to doctors that feel the surgery was a success (because it fixed the problem) but the patient feels like it was a failure because they still hurt, or they hurt more, or something else now hurts. There is no rock solid number :(

    As one that has been hiding my head in the sand rather than deal with all that is going on back there, I really cannot offer you an answer... other than to discuss it with the doctor when you see him, TELL HIM what YOU consider as a success and explain your fears. Make sure YOU feel that he understands where you are coming from....and is not just yessir'ing you.

    I wish you the best of luck with whatever you decide on, and definitely hope that you have pain free, good living days ahead.
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