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    Old 05-13-2008, 08:47 PM   #1
    crittermom
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    Starting to back away from the idea of the fusion on my back

    I have been reading this board pretty intently lately trying to learn as much as possible. Read several posts where people had their surgery, got their life back to a degree and no more pain. But what if the first surgery and fusion is not a success?? What if I come out with pain no better?? Pain worse?? In a wheelchair?? What then??

    Then I began reading about having to have hardware removed after fusion so that is another surgery. What if something goes wrong with removing the hardware, I read about one person's hooks on the hardware being enbedded in the fusion and the surgeon basically had to wrench it out of the fusion?? Wouldn't that weaken the fusion??

    Then I read about after having hardware removed, their fusion broke down and another surgery was called for. Lord love a duck, this scares the stuffins out of me, surgery after surgery after surgery and a possibility coming out no better, worse, or ..............

    I am fast reaching the end of my rope with this pain but the idea of this fusion is terrifying me even more. I want an end to this pain but walking out in front of a fast moving bus would also bring an end to my pain.

    I have terrible pain in my left shoulder, sometimes both shoulders but the left is the worst. I had a fusion at the C5-6 level with hardware about five years ago. Four years ago the surgeon told me my graft had partially dissolved and was allowing movement of the hardware so is what is behind all this pain I feel in my left shoulder?? From the hardware?? I get up some mornings and my left arm is useless for a while or it is hurting so bad I can barely use it. The pain in my shoulder wakes me up at night. Christ is there no end to all this?? I am feeling very hopeless and desperate.

    The bus idea is looking a lot more promising.

    Last edited by crittermom; 05-13-2008 at 08:51 PM.

     
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    Old 05-13-2008, 09:13 PM   #2
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    Re: Starting to back away from the idea of the fusion on my back

    Critter, I am sure you have read part of my story and I am so sorry if it is scaring you to death. I did not mean for it to.

    Please know that when you read a board such as this, that you are going to see more bad then good. Think about it for a minute, do you think a person that is doing great after surgery comes back and posts about it months after surgery? Maybe a rare one or two people but the vast majority of the people are out there living there life to the fullest and reclaiming their life after they have suffered so much with the wrath of back pain. Personally, I can't blame them and am green with envy.

    For awhile I quit posting but then I decided that if I was in a position for surgery that I would want to know the facts. Not every fusion is successful and unfortunately some have complications. Don't all surgeries?

    Just make sure that if you are making this decision that you consider the following:

    1. No two cases are alike. Some cases are very complex.
    2. Make sure you have obtained 2 or 3 opinions.
    3. Make sure that you have tried every option to avoid surgery
    *lost that extra weight
    *tried physical therapy
    *strengthened those core muscles
    *tried tens unit
    *tried epidural shots
    *tried massage theraphy
    *tried accupuncture
    *tired biofeedback
    *tried meditation and relaxation
    *using correct body posture and back mechanics
    4. Be prepared to be off work for at least 12 weeks maybe up to one year if you run into complications.
    5. Be fully committed to your recovery. No Bending, no lifting, or twisting for at least six months to one year. If the doctor says to walk, you need to walk. If he says pool therapy twice a day, do it. You have to make the time.

    I hope I have not scared you more and have put you at a little more ease.

    Last edited by ms_west; 05-13-2008 at 09:23 PM.

     
    Old 05-13-2008, 10:25 PM   #3
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    Re: Starting to back away from the idea of the fusion on my back

    and, one more thing:

    Be sure you search very carefully for the best doc you can find...be sure he or she is fellowship trained in spinal surgery and that he currently specializes in issues of the back and spine.

    Despite the unfortunate outcomes you have read about on this board, most of these people would still go ahead and have their surgeries. Yes, sometimes things don't work out as well as we had hoped, but, for the vast majority of patients, they end up better off.

    Just remember that surgery is done for relief of pain. It will not restore you to the way you were before all the troubles began!

    Ask your doctor to provide you the names of a couple patients that have had a surgery similar to what is being recommended for you. Call them up and have a chat. If you feel surgery is not for you, find the best pain management doctor in your area and try to deal with your back problems that way. Most back surgeries are considered "elective"....only in a few cases is it ever necessary.

     
    Old 05-13-2008, 10:31 PM   #4
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    Wink Re: Starting to back away from the idea of the fusion on my back

    The other posts have made a lot of good points, and it is very true about those who have recovered well, not only don't have as much reason to come back to the boards, but they don't have as much time either.

    I would like to say, that obviously any surgery should be the last resort, if for no other reason, but that it is invasive and anything invasive comes with risks of one sort or another. But with that said, once you have tried all the conservative therapies and if things are not better (or even worse), then the decision needs to be made. For me, I have had 2 failed fusions with lamis., 2radio frequency procedures, numerous injections, blocks and a spinal stimulator. I started with a couple of fractures in my spine and now have Failed back syndrome, arthritis, bursitis, SI joint dysfunction, osteoporosis and now Arachnoiditis. I say all of this because many people have asked me if I wished that I had never had my 1st fusion and I still say that I do not regret it. The reasons are becasue had I not done it, the back pain itself was worse than it is now and I would never have known if I could have been healed or not. Although I am in constant pain and I now have to deal with it for life, I have the same restrictions as I had prior to surgery. I had the 1st fusion when I could no longer do my laundry and vacuming, shopping and errands. I can't do those things today either...so I never got better, but my conditions have just changed...but I am still dealing with pain and restrictions. I think the hardest part for me was in the beginning, you have hope for healing and by the end, you have to accept that this is your life.

    I don't know if I worded that correctly, but basically, I'm no worse off because of the surgeries...I'm just no better off. Some people get the 2 mixed up and think that I should never have had the surgeris. But they forget how bad I was, prior to the surgeries. Had I not had the initial surgeries, I would still have been in constant pain and not able to do much for myself, with the difference of not knowing if I should have had the surgery. Now I know that I have tried everything possible, so I feel good about that.

    Good luck and keep us posted on your situation.

    Lorie
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    Last edited by lfoster21; 05-13-2008 at 10:33 PM.

     
    Old 05-13-2008, 10:35 PM   #5
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    Re: Starting to back away from the idea of the fusion on my back

    I am just so sick to death of all that this has done to me. We have cats, ferrets, and a dog. Of course the litter boxes have to be done every day, a couple times a day if I can. I can only do a couple and then I am in so much pain I have to quit. I think I have listed all this before about things taking me forever to have to do.

    I am married to the absolute love of my life, this is my third marriage, third time is charm or so they say.

    I am on 75 mcgs of Fentanyl pain patch, Perocet 10s for break through pain, Lyrica to help with the nerve pain, Soma muscle relaxer and I am still in this much freaking pain when I try to do things.

    Yes I want my life back, I want to get back to the way I was before, John and I would do the mall-crawl on the weekends, go out to eat frequently, do things together, basically living, loving, and laughing like a couple of teenagers. That is the life I had before all this. I want my old life back so bad but at the same time I am so scared.

    I can't work anymore, I am trying to get my disability. I was a medical transcriptionist and then moved up to an editor. I had my office in my home and it was great, I could be at work every morning in 10 seconds flat from any room in my house. I downloaded all my voice files off the net from the service I was working for. John was working of course, I would knock off about 3 in the afternoon every day, take my shower, pretty myself up, cook a nice dinner for us and meet him at the door with a hug and a kiss when he got home. Now days it is a struggle to even get a shower every day. He has to do most of the grocery shopping, forget doing the mall-crawl, he does most of the cooking around here and has to help me with the housework. Sometimes I literally don't know why he is still here with me. Thank God he is, I don't know what I would do without him but this is not much of a life for him either.

     
    Old 05-14-2008, 05:27 AM   #6
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    Re: Starting to back away from the idea of the fusion on my back

    Remember your vows - in sickness and health - something like that anyway. He loves you. He is standing by you. He is there supporting you like any good spouse should do. Count your lucky stars that he is there for you.

    Maybe you need to cut back on the animals. Maybe you can hire the neighboorhood kids to help with the animals so that it lessons the load on hubby. Could you order your groceries and have them delivered to your home?

    You might glance at the post surgical tips located on the top of the board called post surgical tips. There are alot of good suggestions in there thatm ight help you before surgery.

    Giood luck and I pray today is better.

     
    Old 05-14-2008, 05:49 AM   #7
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    Re: Starting to back away from the idea of the fusion on my back

    Hi i have had a fusiob at L-5 S-1 in 2002 which the fusion never healed causing the screws to break. And then in March of this month i had anterior/posterior with fusion at L-4 to S-1. I am dealing with alot of leg pain in the right side yes but no i would not regret the fusion. Like i said i hate to have to wait until my kids get home after school to help at the store but i will do what i have to. I went through alot of this emotional period like you and i think alot of the people here can tell you about it, I knew i was not going to be able to go on my kids big field trip at school as i do every year and i didnt know if they would be able to play baseball that they love to do. And a few other things and i know the kids and hubby have to help me do things that i used to do alone but you know what hubby said he wouldnt want to be anywhere else.

    Trust me i know how you are feeling but you would never regret your decision for a minute.

    I have 3 dogs and hubby lets them out before work and as soon as kids get home they let them back out and feed them i hate it also but i have learned i will have to deal with it. We have done everything now its our turn to let them help us right?

    If you ned something im here feel free to ask whatever. Good Luck!!!

     
    Old 05-14-2008, 06:47 AM   #8
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    Re: Starting to back away from the idea of the fusion on my back

    This is a huge surgery, not to be taken lightly. The others have made some really good points already. I'll just repeat what Pepper said at the beginning, because it's especially worth repeating. The stories you read here are not representative of the results of fusion surgery. Most people fuse just fine and get their lives back. The failure rate is around 3-5%. The success stories aren't hanging around here. In fact, only three people who were on here when I started out are still here, and they're only here occasionally.

    I'm the one who had the hooks imbedded. What you said was a huge concern to me, that wrenching that one out would weaken the fusion. But it had to come out. During the surgery, it was clear that the fusion was nice and solid, a big hurray, but I was very careful for quite a while not to put any stress on my spine at all so that area could strengthen up again. But really, what I want to point out about that is that not many people have hooks at all. Most people have screws, which are not as hard to get out. I had hooks because they were going into an area that was already fused previously. Long story...

    I am not pain-free, but that was never the goal. I was quickly heading towards a wheelchair. This surgery has eliminated that for the foreseeable future. I still have pain, but it's nothing like what it used to be. I am thrilled with the results of my surgery! I would do it again in a heartbeat!

    If you really need this surgery, please don't let the failure stories here keep you from it. There is no guarantee with any surgery, but the vast majority turn out just fine.

    Hang in there, kiddo!
    Emily

    Last edited by BlueAtlas; 05-14-2008 at 06:48 AM.

     
    Old 05-14-2008, 06:56 AM   #9
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    Re: Starting to back away from the idea of the fusion on my back

    not all fusions use rods, screws, plates or hooks.

    my double used only cages which are placed in between the vertibrae and bone grows around and through them (they look a lot like sewing thimbles with threads and holes in the side). nothing needs to be removed as when the fusion is done they are completely embedded in the fused bone. nothing to break or remove later.

    also you are reading many "worst case scenarios," the vast majority of fusions go well. mine was successful.

    my doc gave me these odds: 70% better, 15% worse, 15% no change or different pain. any honest doc should give you about the same odds.
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    Old 05-14-2008, 10:01 AM   #10
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    Wink Re: Starting to back away from the idea of the fusion on my back

    Here are a few things that helped me. As for the cats, I have 2 suggestions. The best thing that I did, when I had saved enough money, was to get the self cleaning litter box. When I got one several years ago, I just had to change the cleaning cartridge once every few weeks. I have noticed that now they have one that you don't even have to do that much. 2nd, prior to me getting that, I had someone place the litter box on an old table top. Yes, it looked odd, but the cats had no problem figuring out where it was located and I kept in in a back room, so visiters would not see it. The box was at just below chest level, so there was no bending or twisting to clean it. I purchased a large air tight container to keep the litter in, and kept a plastic cup in the container, to pour the litter in the box. Of course I had someone help me set it up and pour the litter into the container, but the daily job of cleaning became a very simple chore. It was that or find a new home for the cats, because it hurt too much to bend down and change the litter.

    As far as your meds go, does your Dr. realize that they do not work? I apologize, but I can not remember if your meds. are given to you by a pain management dr. or by your surgeon. If it is the surgeon, you should look into seeing a pain management dr. I know that some are better than others, but I know my PM has been working with me for over a year and he is continuously trying new things to find what works the best. Obviously I won't be pain free, but I am better than I would be without the meds.

    Another thing that I finally figured out, as you are probbably the same in that, just about any movement will cause you pain. Then, over time, the pain probably increases as you try to do what you can do, thoughout the day. It was a vicious cycle of not wanting to ask for help, not wanting to let my kids down, not wanting visitors to come over to a messy house, and the list could go on. So, I had my limits, but I did do a number of things daily, that caused me more and more pain. Then, I felt guilty because I was always in so much pain that I was not able to enjoy time with my kids. Often, I would be in a really bad mood or just did not want to talk or interact with them, at the end of the day. I realized that on the weekends, when I did not have to work, and all I did was lay around, that I was not in nearly as much pain as I would be during the week. Being a single mom and a perfectionist at that, I did not see any other way of life. I did what I thought I had to do, and suffered in pain and then became isolated from my kids. I finally realized, that if I could find a way to not do the things that caused me pain, both my kids and myself would be a lot happier. Since just about every movement caused pain, I had to ask for help, re-prioritize what was important to me, and I had to make changes with my work situation. For a good amount of time, I felt guilty and thought that my kids would be upset when I could not go to their games, not to mention not able to drive them to their activities etc. But in the end, we all realized how much we enjoyed being with each other in the evenings and they liked being able to talk with me, and that I was able to listen and participate in the conversation. All of those types of things, made it worth not having a spotless house, having to accept help from friends and from county programs, etc. Bottom line, it wa very difficult to change my mindset and to accept outside help, but if it allows me to be with my family, in the evenings, and in less pain, it was all worth it in the end. I could not see asking my kids to take care of things that I, as a parent should have been doing, so I did start having my groceries delivered and I had someone come and clean my house ever 2-3 weeks. When people said things like, "let me know if there is anything I can do"...I took them up on it immediately (becasue I knew that once they left, I would not have it in me to call for help.) It is definately not an easy thing to do, but I found that not only was I able to spend quality time with my kids...I also found new things to do, that I had never had an interest in. You are right, it won't be the same as the life you once had, but if it were your husband that injured himself, wouldn't you do whatever it took to find things to do with him, even if it were things that the 2 of you had not done in the past?

    I am keeping you in my thoughts and prayers. Please feel free to continue to update us with your situation.

    Lorie
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    Last edited by lfoster21; 05-14-2008 at 10:03 AM.

     
    Old 05-14-2008, 11:12 AM   #11
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    Smile Re: Starting to back away from the idea of the fusion on my back

    Well I am almost 4 weeks post-op from my fusion. Me, personally, wish I never did it, but am hoping once I heal, I will feel differently. I am up now, walking around, and tying my best to do my daily chores around the house. I am a stay at home mom of a 6 year old and a 4 year old. Its not easy. My husband has been a great help, although I think he wanted to kill me in the beginning. I have OCD with my house cleaning, and my house is filthy right now, I can't stand it..haha.
    My advice would just to do alot of reseach, get a few opinions, and def. have a pain management Dr. I also had a pain management antesologist as well with my surgery becasue I have been on pain meds for a few years before this. I had a lamy done last year and the pain was terrible and not controlled in the hospital. This time around was alittle better, but it all went to hell when they took the pump away and tried giving me 1 5mg percocet...YEAH RIGHT.
    Lol. Anyways, hope you find the right answer you are looking for, and let us all know. Have a great day!

     
    Old 05-14-2008, 02:08 PM   #12
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    Re: Starting to back away from the idea of the fusion on my back

    There will come a day when your sick of the pain after trying everything else that don't help and get the fusion .. No one should jump right into a fusion unless your spine is unstable /broke ...I will always live in pain but its no where near as it was when I broke it.. Happy I had it done sort of .

     
    Old 05-14-2008, 02:09 PM   #13
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    Re: Starting to back away from the idea of the fusion on my back

    You have a ways to go it should get alot better for you in a few months..
    Quote:
    Originally Posted by stay2654 View Post
    Well I am almost 4 weeks post-op from my fusion. Me, personally, wish I never did it, but am hoping once I heal, I will feel differently. I am up now, walking around, and tying my best to do my daily chores around the house. I am a stay at home mom of a 6 year old and a 4 year old. Its not easy. My husband has been a great help, although I think he wanted to kill me in the beginning. I have OCD with my house cleaning, and my house is filthy right now, I can't stand it..haha.
    My advice would just to do alot of reseach, get a few opinions, and def. have a pain management Dr. I also had a pain management antesologist as well with my surgery becasue I have been on pain meds for a few years before this. I had a lamy done last year and the pain was terrible and not controlled in the hospital. This time around was alittle better, but it all went to hell when they took the pump away and tried giving me 1 5mg percocet...YEAH RIGHT.
    Lol. Anyways, hope you find the right answer you are looking for, and let us all know. Have a great day!

     
    Old 05-15-2008, 06:25 PM   #14
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    Re: Starting to back away from the idea of the fusion on my back

    Quote:
    Originally Posted by crittermom View Post
    I have been reading this board pretty intently lately trying to learn as much as possible. Read several posts where people had their surgery, got their life back to a degree and no more pain. But what if the first surgery and fusion is not a success?? What if I come out with pain no better?? Pain worse?? In a wheelchair?? What then??

    Then I began reading about having to have hardware removed after fusion so that is another surgery. What if something goes wrong with removing the hardware, I read about one person's hooks on the hardware being enbedded in the fusion and the surgeon basically had to wrench it out of the fusion?? Wouldn't that weaken the fusion??

    Then I read about after having hardware removed, their fusion broke down and another surgery was called for. Lord love a duck, this scares the stuffins out of me, surgery after surgery after surgery and a possibility coming out no better, worse, or ..............

    I am fast reaching the end of my rope with this pain but the idea of this fusion is terrifying me even more. I want an end to this pain but walking out in front of a fast moving bus would also bring an end to my pain.

    I have terrible pain in my left shoulder, sometimes both shoulders but the left is the worst. I had a fusion at the C5-6 level with hardware about five years ago. Four years ago the surgeon told me my graft had partially dissolved and was allowing movement of the hardware so is what is behind all this pain I feel in my left shoulder?? From the hardware?? I get up some mornings and my left arm is useless for a while or it is hurting so bad I can barely use it. The pain in my shoulder wakes me up at night. Christ is there no end to all this?? I am feeling very hopeless and desperate.

    The bus idea is looking a lot more promising.
    My doctor wants to do a fusion useing the Dynesys System , I am getting another opinion, I am going to the Hospial for SPECIAL SURGERY in N.Y. they are rated No. 1 in the nation. So far looks like I will not get any rods or metal put in my back . Look into more treatments I know about the pain. I hope this helps.

     
    Old 05-15-2008, 08:01 PM   #15
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    Wink Re: Starting to back away from the idea of the fusion on my back

    stay2654-I have read a couple of your posts and I am hoping for a quick recovery for you. As shawley said, you should be getting better soon. It took 12 weeks after my 1st fusion and 10 weeks after my 2nd one. The 1st 6weeks is definately the worst, and what got me through was reading a few posts, prior to my surgery, that said when people woke up from the fusion and the weeks after, they wondered if they had made a mistake, but that it got better. I had to keep telling myself that it would get better.

    I too am a perfectionist, esspecially with the house. It was one of the absolute hardest things to let go of. I finally had to get someone to come in and dosome of the cleaning for me.

    Anyway, you are in my prayers and I hope you start feeling better very soon.

    Lorie
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