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New-Need Info on Fusions

JeniferJJenifer Posts: 84
edited 06/11/2012 - 7:39 AM in Back Surgery and Neck Surgery
Hi,
My name is Jenifer and Iam 51. Inbetween 1991-1996 I had 5 laminectomies on discs L3-4 and L4-5.
The success of the surgeries was brief and I am in constant pain. I have had over 25 MRI's, 1 discogram, epidural injections, PT, pain managment, 1 ortopedic surgeon who did not do surgery, but sent me to the first NS who did the 5 surgeries. I then had a second opinon at Mass Gen and he concurred with 1st surgeon. During all of this I was put on every pain medication and none of it worked. Went to get a third opinion 2 years ago and he recomended a spinal fusion. I said no. Went for 4th opinion and he also recommended a fusion, but stated to me that it would have to be "not one fusion, but two and did the other doctor tell you that?". Once again I said no to a fusion of any kind. We decide for me to try the Spinal Cord Stimulator Device. I had the trial and it did not go well, did not have it implanted.
3 months ago the pain was steadly increasing and my PCP says he can give me more drugs, but he says he knows that is not what I want and that I need to go back to the neurosurgeon. (I wear a 100 mcg Fentanyl patch and take dilaudid for breakthrough pain).
Well, that NS moved to TX ( I live in RI) and his practice has been taken over by someone else. This NS is highly recommended and I go and see him 2 weeks ago. He agrees with the other 2 NS's, that I need a 2 level fusion. He spends over an hour with me and shows me the MRI from 06. He says I have to have another MRI, of course, and I do, but in so much pain they have to take me out and I go get a prescription for Adavan and take additional Dialudid. I take that and go back that night to redo the MRI.
His nurse called and said that he said the MRI was "worse", but not anything that would affect the type of surgery that he and I had talked about (so it would still be 2 levels).
I told her I would have to talk to my husband and work and call back.
I am a big "fraidy cat" right about now. I don't want to be worse off, but I understand that this is probably my only choice left. I have been reading your forum here and you all seem so helpful I thought I would write and see what you say.
Sorry it is so long, but figured you would want the details before you give me advice.
I know in the end it is my decision, but I am terrified that I will regret it. The big problem is the pain is getting worse and my quality of life right along with it, but I'm still standing and I do work part time ( I am a leader for Weight Watchers, so usually work 2/3 hours at a time and can go home and rest in between meetings sometimes.) I'm in horrible pain during the night, so much so, my husband want me to go to the ER every night!
I had been active up to this point and have 5 grandchildren that I want to be able to play with and I'm worried that this will make me worse.
Any advise you can give me will be greatly appreciated and if you have any questions for me, please ask.
Sincerely,
Jen
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13456

Comments

  • My 2 level PLIF L4-L5-S1 (Posterior Fusion)recovery was terrible, but it has been the best thing for me. After being in pain for many years it is hard to remember what not being in pain is like.

    My lumbar spine & legs feel better than they have in ten years. This last summer (before my neck got bad) I was hiking, jogging and enjoying life pain free. I still get a little sore when I over do it, but it is nothing like I was before.

    Would I do it again- YES. Walking with a cane and wearing a brace all the time and living on pain meds is not for me.

    It took me about 3 months before I felt comfortable enough to go back to work and another 3 months before I was off the Norco.

    Good luck with your decision.

    Julie

  • I'm 40 and had a microD on L5-S1 and it didn't work. I'm being told I need a fusion. Out of 4 doctors (ortho spine and 1 neuro), 2 said revision micro and 2 said fusion. One of the fusion doctors, when pushed said I could try a hemilaminectomy but that a revision microdiscectomy has a low chance of success due to how little disc height I have.

    I'm in your same boat and am trying to gather information. I am getting an opinion from a remote clinic (through work we get a service free from a respected clinic) and have an appt with a neuro surgeon. Like you I'm not a fan of a fusion but I am also not a fan of pain meds and the impacted lifestyle I've been living the last 4 months.

    I know a fusion won't gurantee me improvement but I'm trying to make the best decision with my situation.

    Things to ask your doctor -> would CT scan or other neurological response tests help further support one decision over the other? In other words, if you don't do this, are you risking a 3level fusion? What other tests or information would be helpful in understanding how to make the decision.

    I sense your frustration and feeling like you are running out of options. HOpefully folks here can help.
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  • I know its a tough decision for you to make. All I can offer is my own experience. Mt first bout of back pain started when my first born was 6 months old. I tried PT, meds, etc.

    My decision for a 2 level lumbar fusion became a no-brainer when my husband found me on the kitchen floor sobbing. I dropped something and the pain was so bad I couldn't get myself up.

    The surgery (PLIF) was tough and a long recovery, but I got my life back. Alas, then I went back to all my old habits that weren't kind to my back and due to my history of DDD was back to square 1.

    This time I made a much more informed decision, becoming a member of this site was a Godsend. I knew at what point the meds were only helping me get through each pathetic day. My quality of life sucked. My Dr. said "when you are ready you tell me".

    Well, yesterday was one week post-op of a 2 level ALIF. The experience now vs. the last time is incredible. My back pain is gone, no leg pain and tingling, no drop foot. I'm up and walking and only wished I had done this much sooner; all that time I was in agony and didn't need to be.

    Hope this helps a bit and good luck with your decision.

  • SpineAZSpineAZ WiscPosts: 1,084
    I had my first fusion at 20. I was a bit young and actually grew an inch between 20 and 21 so later in my mid-20's I had an L4-S1 fusion. As others have said the surgery and recovery are tough. But for 17 years I had drastic improvement. I never needed pain meds, only on occasion would I ask my doctor for a muscle relaxant and was able to get by with advil/aleve/aspirin.

    Now, I have a tendency toward lax ligaments and tendons which makes my joints move. (Had other orthopedic surgeries on knees and feet and neck as a result). So now I may need to have the fusion redone to extend to L3. Am I scared? You bet! But I'm also very very eager to get this done. I've always strived to be as pain free as possible and as functional as possible. If surgery is the answer I've always agreed to go further.

    Many people want to avoid fusion and truth be told it's not the first option that many should consider. But if you've been through all the surgeries thus far a fusion may be a good suggestion. It stabilizes the spine and can eliminate a large portion of the pain. Will you, or I, ever be 100% pain free? Probably not given our surgical histories. But, could we see a drastic increase in functionality and pain level and maybe reduce medications? Yep, I think so.

    It's a decision only you can make but it does sound like you've done research, seen a variety of docs, etc. And all of here will support you in you quest for treatment! Please let me know if you have questions or just need to vent. It's a tough road...but you'll make it through.

    2 ACDFs, 2 PCDF, 3 LIFs; Rt TKR; Rt thumb fusion ; Lt thumb arthroplasty; Ehlers Danlos 
  • I've had a three level fusion and I'm "only" a year out, so you can take what I say with a grain of salt. I am still in pain. Sometimes incredibly so. HOWEVER, I would do the surgery again in a heartbeat. The surgery (for me) was terrible -- I ended up needing two surgeries because they couldn't get my damaged discs out through my back because of scar tissue. My recovery has been long and arduous. However, I can walk and move without extreme jolts of pain and life is one whole heck of a lot better than it was before surgery. I have been told it can take another year before I begin to adjust to this 'fused' life. Not many surgeons like to do more than a two-level fusion, because they are extreme and can cause damage to adjacent discs. So far, my adjacent disc is just fine.

    All I can tell you is this. Fusion will, if done correctly, stop further damage to your spine (unless you have a horribly degenerative condition or you go out running marathons and motorbiking for hours at a time). It will stabilize your back and likely reduce your pain. The surgery itself is difficult. It is not easy to recover from it. You have to work at it and you have to be patient. I've never been a patient person, but I'm trying to deal with it. I have not had the perfect outcome, but I think, looking back on it all, I had no other choice. Given the information I have learned, I'd do the same thing today that I did just slightly over a year ago.

    If you opt for surgery, you'll have lots of friends here pulling for you. For that matter, if you choose not to have it, you'll still have the same.

    I forgot to say I'm 55. I was 52 when I initially injured myself.

    Blessings to you,
    Linda
    3 level spinal fusion, L3/4, L4/5, L5/S1, November 2008. Stiff, but I can walk.
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  • Dear Linda,
    Thank you for your reply and I apologize for not answering right away. Some how I didn't see that you or anyone else replied until I figured out how this forum worked. Also when another member, Nikki, answered me!
    Anyway, I have the 2 level fusion scheduled for Feb. 9th. I am terrified, but the pain has been increasing steadily and I don't want to risk any more injury.
    How are you feeling? I hope better!?
    Jen
  • Dear Dnice!
    As I am telling the other people on this thread, I apologize for not responding when you so kindly answered me! I didn't know I had gotten responses!
    I decided on the fusion and it is scheduled for Feb. 9th. Have you made your decision yet? How are you feeling?
    Take care,
    Jen
  • Dear Lisa,
    Thank you so much for responding, I didn't realize I was getting responses to my posting, till someone else emailed me!
    Thank you for telling me your experiences. Are you still feeling as good as you did when you answered me? You are probably around 9 or 10 weeks post op?
    I decided to do the fusion and it is scheduled for Feb. 9th. I am really worried, but the pain has been increasing weekly. Over this past weekend I could not walk up the last 5 steps of my staircase.
    I started my medical leave of absence today, because my doctor said he thought I had tried hard enough already.
    Any words of advise for me regarding things to do before the surgery to make my life easier while I am recovering?
    I hope you are still feeling good!
    Take care,
    Jen
  • Hi SpineAZ (sorry, I don't know your name!)
    As I told everyone else that was so kind enough to respond to me, I did not realize I was getting responses to my post, until someone emailed me!
    Have you decided to redo your fusion?
    I decided to do the fusion and it will be on Feb. 9th.
    I welcome any advice you or anyone else has for me regarding things to do before surgery or after or just advice in general! ( I did ready the "sticky" list, about things you may need to have or purchase, that was very helpful).
    Thank you again for your response and I hope you are feeling well.
    Jen
  • Hi,
    I'm not sure how this will work! I'm trying to continue this thread since it has my history on it.

    I just wanted to say I decided to have the fusion and it is scheduled for Feb. 9th.

    I am still worried and I guess I am just looking for some reassurance or if anyone would like to tell me how they are doing after their fusions!

    Thanks,
    Jen
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