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What decision do you regret

j.howiejj.howie Brentwood, Ca., USAPosts: 1,730
edited 06/11/2012 - 9:00 AM in Chronic Pain
What decision to you regret most in your long battle with chronic pain?
I've made many! But my biggest regret was to listen to my family, with no medical knowledge. Telling me not to get the pain pump after the S.C.S. didn't work for me as well as I had hoped.
You see, I'm SO DONE WITH PAIN!!! It wears you down so much. And I believe the oral pain med are far worse on your organs than a pump that uses far less drugs, with better results on less medication. Because it is targeted right where you need it with just the right amount of drugs. (with adjustments once in a while.) And it's idiot proof. No counting out meds. No wondering if you took a dose or just think you might have. No setting the alarm clock to wake you in the middle of the night. To take your med, so you don't wake up already behind the 8 ball. @)
Well that's just one of many. But I think it's at the top of the list!
Jim :?
Click my name to see my Medical history
You get what you get, not what you deserve......I stole that from Susan (rip)
Today is yours to embrace........ for tomorrow, who knows what might be starring you in the face!


  • First a tad off subject - Jim why can't you get the PP now after realizing it was a mistake not to?

    1. I regret not having back surgery when I was 13 yrs old and was told I had a bad case of scoliosis and needed surgery. All I heard was a 1/2 body cast for at least 3 months. My foster parents let it be my choice (dumb a*s!)

    2. Then again when I had a car wreck at age 26. A few disks "blew out" and they wanted to go in and fix them. I was a divorced mom of a 5 yr old whose bio dad was worthless & felt I had no one to care for her (I really did I just used that as an excuse)

    3. Not last by any means but probably the BIGGEST regret it what I chose to do as my living for the past 27+ yrs Commercial Cleaning Biz. Talk about dumb! I just did not think my back was THAT bad and by the time I did I already had a ton of bills to pay and no chance to return to school.
    L1 - S2 "gone" useless in 1 way or another. DDD. RA. Bone Spurs. Tons of nerve damage/issues. Stenosis. Both knees replaced. 50 yrs old. I had a great fall (hence my user name) at age 41 and it has been a domino effect every since.
  • I think my biggest regret is falling on that damn lawnmower in the first place! Perhaps it's the product of being a single person who has taken care of themselves since about 18 and now being 57, but I was very pro-active in my care. My family gave me a lot of the "oh it can't be that bad; you can't fix every problem with surgery; you complain too much" stuff. After a while I didn't even talk with them about it. After the first little palliative attempts to control my pain didn't work, I found myself a very competent surgeon at a research hospital and went through a hellish surgery (well, two in fact). I'm not sorry I did it. I'm sorry I fell, sorry for the whole experience, but grateful that I came out of it relatively intact for an old witch. ;)
    3 level spinal fusion, L3/4, L4/5, L5/S1, November 2008. Stiff, but I can walk.
  • j.howiejj.howie Brentwood, Ca., USAPosts: 1,730
    Ms Humpty. But I guess I always figured that something would work for me. And I wouldn't need pain meds anymore. What an Idiot! :O
    Isteller, my fist surgery was the 3 level 360, anterior, posterior fusion with my own bone graft from my hip. :''(
    That was the most hellish surgery that I've had. and didn't think there was anything that could ever be as bad as that one. And I was right! Untill this one! This one was just as bad. But being 10 yrs. older and totally out of shape. This one has taken the place as the worst. image:)" alt=">:)" height="20" />
    But every time I see your signature line and that 3 level 360. I think to myself, THAT WOMEN HAS BEEN TO HELL AND BACK!!! :jawdrop:
    Click my name to see my Medical history
    You get what you get, not what you deserve......I stole that from Susan (rip)
    Today is yours to embrace........ for tomorrow, who knows what might be starring you in the face!
  • I regret peeping into the bathroom because my 3 year old was in there for more than 30 minutes. After I opened the door, she slammed it into my face. I think this is what pushed me over the edge. I was seeing floaters and worried about my eyes instead of my neck! I only went to see an eye doctor and not an orthopedic! :<
    2011 ACDF C5-6 for Spondylosis with Myleopathy
    2012 L4-5 herniated disc and hernated disc at C4/5 2013 Taking Amitriptyline for headaches
  • Yes, you know the pain of the 360 three-level fusion. And, I have to tell you, I think it will be a cold day in hell before they get me back into the hospital for another back surgery of any kind, so I can only imagine what you're going through. I had my share of smaller procedures before the fusion, but for some reason, about a year ago, I got an email saying I needed to take a bunch of stuff out of my signature. I see a lot of folks who have, a lot of folks who haven't, but I can't see it makes any difference except to the new person who thought were were all having a competition! I just pray I never do anything else to my spine because I still have nightmares of being in the hospital, screaming my fool head off in pain, and having the nurse shut out the light and shut the door -- leaving me alone in my misery. I do not, under any circumstances, ever want to go there again!

    I forgot to say my fusion was done with the hardware and then dowels of cadaver bone, but spackled into place with BMP and my own bone marrow, so yes, they drilled into my hip and sucked out some marrow. That was hugely painful, so I can imagine going in and chipping off some bone has to be equally or even more painful. May none of us ever have to go through this again.
    3 level spinal fusion, L3/4, L4/5, L5/S1, November 2008. Stiff, but I can walk.
  • We have all done things to regret but also things to be grateful we did.

    But more important is the acknowledgement that in reality it is so little what we can control that I can say we are almost at mercy of what life brings to us.

    Being borne with a spine prone to trouble, absolutely uncontrollable. Developing a herniated disc despite being young, thing, and not performing weight lifting activities, absolutely uncontrollable. Developing post op epidural fibrosis 20 years after surgery despite being thin, eating right, not drinking, not smoking, exercising, absolutely uncontrollable.

    So, just to let things pass by... That's all I can do.

  • I regret ever gering married! Does that count?
    Flexicore ADR 2004 resulting nerve damage l4l5 Fusion 2006 same level, 2009 hardware removal with lami !
    2012 scs implant ,
  • =)) Alex!

    I regret not going to get another Hoyer lift when I had that 600lb patient that destroyed my back for good. The one we had on our floor was broken that day and instead of going to find another one, I decided to just gather up several other people and try to move the patient manually.

    REALLY bad idea. :(
  • I should have had a spinal fusion from the get go, not a laminectomy discetomy, whupich resulted in a dural leak, and then another major surgery , new surgeon.. No longer trusted the other one who forgot to tell me he thought I would need a fusion within a year anyway! Two major surgeries in two years is really tough..

    Also tolerating a very non supportive soon to be ex spouse.. For way too long...and not putting my own health and well being as being of prime importance, so better self care sooner, But I have made great progress in that area.

    Not creating an integrative personalized health plan until the last 6 months but doing it now and it the only thing that has really worked for my severe chronic pain!

    Being more compassionate wi myself, asking for helping, letting go of doing all, and being wonder woman!

    It is all a work in progress, and I also see this chronic pain as a huge opportunity for learning, giving back to others, and personal growth...
  • I would have made a better bloodline selection. Too many anchestors in my tree with bad backs.

    Never would have jumped out of so many airplanes when I thought I was a superman in my 30's and 40's.

    Would have responded to surgical intervention recommendations sooner - much sooner, like 20 years sooner.

    Post fusion surgery I would have never ever never ever never ever bent, lifted or twisted. My bad.
  • I would have been much more careful in selecting my first surgeon!
    Dec10 Fusion due to grade 2 spondylolisthesis and sciatica. L5/S1. Failed.
    Aug11 Hardware Removal, Dural Tear, Foot Drop
    Dec11 Salvage fusion at same place. Also a failure.
    August 2012 Spinal cord stimulator
  • dilaurodilauro ConnecticutPosts: 9,856
    though I think I have too many decisions that I have regretted over the years when it came to my medical situation.

    I can't come up with one single item that I regret, but I can say without a doubt that I have regretted that I did NOT do the following after surgery:

    - Adhere to Limitations and Restrictions
    - Keep up with approved exercise programs
    - Take care in the way I worked
    - and much more

    From my early 20's until my late 40's, I think I tried either to excuse, avoid or deny so many of my spinal problems.

    Perhaps if I had done better, I wouldn't have had so many follow on problems
    Ron DiLauro Spine-Health System Administrator
    I am not a medical professional. I comment on personal experiences
    You can email me at: rdilauro@veritashealth.com
  • some small affairs. I will regret it for times. such as buying an shirt or shoes. but in big affairs , I won't regret what I have make. and I will stick it to the end.
  • Well said Ron - my sentiments exactly!
    2 x Microdiscectomy 2005 / PLIFusion 2-level 2010 / revision surgery 2011 / NEVRO Senza spinal cord stimulator implanted February 2013. I WILL NOT GIVE IN / UP !!
  • MetalneckMetalneck Island of Misfit toysPosts: 1,364

    My life for the past 15 or so years?

    Yeah ... thats a start



    Spine-health Moderator
    Welcome to Spine-Health  Please read the linked guidelines!!

  • Giving up disability before without really sitting down and weighing pros and cons of returning to work and the possibility my new problems were progressing.

    A mulligan sounds nice. Who would ever imagine a second of ur life would have consequences that may remain until I'm dead. Wow, it's almost unreal .
    Herniated T6-7, multiple herniations in cervical, tears in T5-T8. Stenois at levels and smorls nodes from thoracic thru lumbar
  • Hi, I have been trying to find out about hardware removal and what has happened after removal on so many sites and I just happened to stumble on this one for which I am thankful.

    March 2010-had spinal fusion L4-L5; subsequently developed a staph infection in the right side incision; hardware. PICC line for 6 weeks with antibiotics. Have had continuous low grade fevers but white count and CED rate normal. Have continuous pain on right side, original surgery was to help the pain on the left. Have been on and off oral pain meds for three years.

    My doctor and I decided we should remove the hardware at the two year mark and it is scheduled for March 20. I have good bone growth in the area. I am really scared as the first surgery and recovery nearly killed me, weakness, weight loss, and pain.

    Did you have a good experience with the removal of your hardware? Was it a long surgery? How long were you in the hospital? How are you feeling now?

    My doctor feels there may be some residual staph around the hardware on the right even though other than low grade fevers, all of my tests show there is no infection. My husband is supportive but other family members do not want me to have this done. So, I told them I had postponed but will go ahead anyway.

    Scared and in pain.
  • i was told after my last fusion that i could not do a lot of things. i was told by my district that i had to attend a workshop for a week to learn a new teaching technique. i said i just had surgery and could not do much. they just blew me off and i did not become more agressive and refuse to do the workshop. i did and as a result my back has been worse than it would have been if i refused to do the workshop. we don't like to rock the boat including me. it did not make a difference because the district still treats me like ca ca
    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.
  • j.howiejj.howie Brentwood, Ca., USAPosts: 1,730
    I know what you mean Jon. I know it didn't make a difference. But if you would have "rocked the boat" Now that would have made a difference.
    It's a shame, but some times you have to do things and just laugh all of the way to the bank. :))( Or, cry all the way to the bank, as the case might be! :''(
    They don't give a crap if hurts or not! ~X(
    Click my name to see my Medical history
    You get what you get, not what you deserve......I stole that from Susan (rip)
    Today is yours to embrace........ for tomorrow, who knows what might be starring you in the face!
  • i have always tried to live my life without regret or some sort of woulda, coulda, shoulda. That has really changed over the past 5 years.

    1. I would have pressed the military for a real problem, truly documented, with proper tests and treatments documented in my records.

    2. I would have not accepted medical separation from the military rather, I would have pressed for the proper passage of medical retirement.

    3. I would have pressed my superiors to recognize what I had done to save those lives rather than just blow-off my problems with a "get over it" position.

    4. I would have sought treatment for PTSD while still in the military so that I would not have to fight the VA for recognition of the problem.

    5. I would have stayed with the VA processes for the 20 years rather than get frustrated and go to private physicians for treatment. I would have done private in tandem with VA so that it was documented by the VA.

    6. I would have demanded the proper studies (MRI, CT, and neuro-studies) rather than a xray, a pill, and a pat on the head.

    7. I would have demanded proper treatment, proper meds and rehab rather than self-treatment with alcohol.

    8. I would have gone with a fusion once everything else failed rather than a lamenectomy which failed, slipped, and did more damage prior to the fusion 4 months later.

    9. I would have sought mental and physical treatment through the VA faster when other parts of my spine began to fail. I would have made sure the VA was engaged holistically.

    10. I would have followed my recovery needs rather than continuing to push myself to pain and failure resulting in more drinking and meds, resulting in destroying my career of 15+ years.

    Finally, I would have re-engaged with my family much sooner, helping them grow, meet their needs, and accomplish their dreams.

    I do not regret my life, I am just disappointed with the way it has progressed. Today I am trying to live... it is a new goal for 2012 as I spent 2009-2011 just sitting, waiting,, and wanting to die.

  • x2

    Vetted more surgeons ...but also acting sooner with surgery.
    Jun 2011 -TLIF @L5-S1
    Mar 2012 -NonUnion @L5S1
    May 2012 -Multi Level Discography
    July 2012 -XLIF 2Cages @L3L4/L4L5
    Aug 2012 -All New Hardware @L34L45/L4L5/L5S1
    Mar 2013 -FBSS = Pain Management until they figure it out.
  • What do I regret regarding my back pain:

    1) Younger not being more vocal with the doctors about how bad the pain was.

    2) Allowing other people's perception of my pain influence my understanding of it.

    3) Hiding my pain for 2-3 years from my parents to avoid the disagreements that it caused.

    4) Having to quit activities I loved to do. But I guess I had to...
  • My number one regret would be 'signing off' on a car accident because I was too young to understand that my injuries could have life long implications, but what can you do?

    My second regret would be putting off going on long term disability because I thought that my workplace could not possibly survive without me! I had already given up everything I loved to do, so obviously my priorities were a little muddled!

    Other than that, I have NO regrets about being as proactive as I have been because it has given me the strength to keep fighting this battle, and some of the craziest treatments/procedures have given me the best, albeit temporary, relief.


    "Being happy doesn't mean that everything is perfect. It means that you've decided to look beyond the imperfections.” ~ Unknown Author
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