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whats the truth folks ???

edited 06/11/2012 - 8:46 AM in Chronic Pain
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  • 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"
  • 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.
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  • 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.
  • 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.
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  • dilauroddilauro ConnecticutPosts: 12,099
    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.

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  • 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.
  • What is the deal on a discography and how does that effect what does or doesn't happen. In a lot of fusions the disc is taken out so what am I missing?
  • It sounds that you have figured out your next step and what is right for you. That is all any of us can do. You know everyone here will be praying for you and God willing - it will be a blessing in your life! Best wishes - Marion
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