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unnecessary fusion - how can they get away with this

lucymariellucymarie San diegoPosts: 4
edited 09/30/2016 - 7:27 AM in Back Surgery and Neck Surgery
hello everyone, 
my back problems begin 16 years ago in high school and my back has hurt on and off since...mostly after lifting something too heavy with bad form. I always recovered and never thought it was a big deal. I would take ibuprofen and be on my way... It was normal to me.
about a year ago I hurt my back moving furniture and got severe sciatica in my leg.  After 1 round of pt , I was given an mri that revealed a large broad based herniated disc at l4-l5. I was immediately referred to a specific neurosurgeon who told me I needed an emergency alif or else I would lose control of my bladder and bowels. The Mri was in early May, my first apt with him was in late May and we scheduled the surgery for June 8. I was so confused and he didn't explain anything to me. I remember him isn't the words " replace the disc" so for a while I thought I was receiving disc replacement which I preferred over fusion after doing research. I received the paperwork to sign in my email the Friday before surgery (surgery was on a Wednesday). I saw on the paperwork it said "fusion". I called my doctor and asked him why I had to have a fusion and not a tdr or discetomy. He said there was no disc left to do a discetomy and adr is not the "standard procedure". He assured me a fusion would not effect my mobility and not mean I would need more in the future ( lies!) I never thought surgery would be in my future let alone a fusion. I had no idea with a fusion was and he did not explain it to me at all. Everything I learned was from the Internet. At this point, I couldn't stand up straight, I was waking up every morning screaming in agony and taking OxyCodone around the clock and 3600 mg of  gabapentin daily. I just wanted to end the pain. I went through with the surgery that Wednesday and immediately woke up with regret. I am now able to stand up straight and my pain is reduced but it is still there and my sciatica is in both legs now. My bladder is WORSE than before the surgery. I have retention issues. I felt I had finally come to terms with everything and my new normal... But then I made an apt with a world renowned spine surgeon to see if there was anything that could be done because my original surgeon was blowing me off. He was baffled that the first surgeon performed a fusion and said my problem would have been solved with a discectomy. This was DEVASTATING to hear because I now know the long term consequences of fusions and I can't help but be depressed thinking of how my quality of life might be different had I only gotten a discectomy. I'm so depressed I'm only 31 years old I want a family someday. I want to be active and do things I shouldn't ... It hurts to know what a horrible mistake I made by trusting the wrong doctor. I never even had any surgery or even injection before the doctor said FUSION. I dread my next fusion because I know it's a domino effect and I already have a hernia toon at t11t12 and l5s1 - who knows about my cervical but the X-ray shows I have no curve in my neck either. I don't know how to move on or enjoy life knowing it all could have been avoided. Im so sad and depressed 


  • dilaurodilauro ConnecticutPosts: 13,527
    I am sorry to hear about your situation.

    I do tell everyone who is thinking about surgery, ask questions .  Make sure your doctor is giving you all the information you need.  If you feel something is missing or you dont understand, ask again.

    Most hospitals do a pre-surgical review meeting.  This is where they discuss everything from your Living Trust, to how long the surgery will take, the type and approximate recovery time.   Those meetings are generally done 1 week prior to surgery.   Did you have any meeting like that?
    Ron DiLauro Veritas-Health Forums Manager
    I am not a medical professional. I comment on personal experiences 
  • itsautonomicitsautonomic LouisianaPosts: 2,561
    If there was no disc left then ADR might have been ruled out because of facet degeneration.
    A patient should never have surgery when they have a lot of confusion and always should get second opinion before.
    The surgery is done now all you can do is focus on getting in shape and limiting adjacent degeneration best you can.  Remember many athletes have fusions and return to play sports.  Good luck
    Do your due dilegence, trust you know your body and question everything if it does not fit. Advocate for yourself and you will be suprised what will be revealed trusting your body and instinct.
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  • MagistraMarlaMMagistraMarla San Antonio, TexasPosts: 217
    I had a surgeon who didn't answer questions unless my husband was with me.  If I went to an appointment alone, he would ignore me and would sometimes would walk out in the hall to answer his cell phone, leaving me yelling my questions at his back.  I allowed myself to be talked into it because my husband believed the doctor that fusion was the only answer for me. 
    Like you, I felt that something was not right as soon as the surgery was done, but I did my best with PT and water aerobics until my one year check-up, when it was obvious that L3/L4 hadn't fused, the hardware is loose and the fusion at L4/L5 looks weak. 
    Like you, I've had worsening bladder problems since my leg pain began around 2008.  Doctors have told me over the years that it all came from being a menopausal woman who has had five children.  I've always thought that they were wrong since I've noticed that the less pain I'm feeling, the more control I have over my bladder.  My incontinence got much, much worse after the surgery.  I used up all of the Poise pads that I had brought with me, and the nurses acted like I was making an insane request when I asked them for one.  Now 18 months since the surgery, my bladder control varies constantly, usually connected to the amount of pain I'm feeling.

    Ron, the big university hospital where my first surgery was done had no pre-surgery meeting, no orientation, no patient education and no care-giver education.  My husband went into it knowing less than I did and believed the doctor when he called my surgery "strictly routine" and told him that there was no need for him to take any FMLA time to take care of me.

    Lucy, I've also gone to a surgeon who specializes in revision surgeries, scoliosis surgeries and major spinal trauma.  I'll be having surgery on October 25.  So far, the experience with him and the orthopedic specialty hospital have been the total opposite of my last experience.  Six days before the surgery, I'm scheduled for that hospital pre-surgery meeting that Ron mentioned, then a two hour meeting at my doctor's office to go over procedures and questions, as well as to be fitted for my new brace and my bode growth stimulator.  I will then have my second meeting with the hospital internist to give me medical clearance for surgery.  The day before the surgery, we'll be given a hospital orientation and tour.  After the way that I was treated at the other hospital, I'm in awe this time.

    Like you, I now wonder if a minimally invasive procedure might have saved me from all of this pain and ruined back.
    As itsautonomic said, all we can do now is find the best surgeon that we can and get in good shape before and after surgery.  I've lost 25 lbs since my first surgery and I'm swimming five days a week.  My husband will take at least six weeks of FMLA and will walk with me and take me to PT when that starts.  My friends are also organizing walking dates with me.  I'll get back to my water aerobics class as soon as the doctor clears me for it.
    Hang in there, Lucy and remember that the people here understand and will always answer you.
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