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Finally have answers, devastated. Failed Back Syndrome due scar tissue

Saw a neurosurgeon Friday and actually heard them tell me this looks like failed back syndrome. According to their MRI interpretation my s1 nerve is inflamed and unusual looking due to scarring. I was told to triple my Gabapentin(which I have already started to slowly increase, goal dosage of 1800MG), skip physical therapy and go to the gym and just work through the pain and start a trial for a spinal chord stimulator. They also noted and annular tear at my L4-5 disc, but feel the pain is not at all related to that based on my symptoms(fusion is s1-L5 level)

I am seeking a second opinion with a more holistic treatment clinic that includes a neurosurgeon, psychiatrist, PT, acupuncture, traditional pain management and other options. I was very upset with the flippant manner with which this PA and Neuro treated this news. As if chronic pain at age 40 is no big deal and that I just need to power through.

I HAVE been taking this on with minimal pain medication, muscle relaxers and Gabapentin with hopes that this neurosurgeon can give me answers that wouldn't include a life long pain management struggle. I have not been pushing the pain through exercise as two doctors told me to stop when the spasms and pain kick in(both of which have seen the MRI).

I am so devastated.

Any words of advice are much needed, please.


  • I'm so sorry. My neuro has a certain way of saying things that leaves me trying to choke back the tears. You're right! Second opinion, third opinion. Find the care you really need. I'd be sure of the "work through the pain" advise before you do that. I know all our backs are different but I've been told to NEVER do that.
    I think you know exactly what you're doing next & it's a great plan. I just wanted to say, sorry & I understand. It sucks doesn't it? We're a similar age & I've got little kids, have you? Being told there's no surgical solution is devastating. Pain management is by no means straight forward. I've been doing it for years. Try everything (within reason) keep what helps & dump what doesn't.
    Take a little time to process this news. We don't have to be brave & stoic all the time... Regroup & move on. ;-)
    Osteoarthritis & DDD.
  • Be strong, know that you are the best judge of what you are feeling and, if a physician fobs you off, keep going for another opinion until you find one prepared to listen.

    I got fobbed off by four consultant orthopaedic surgeons before the last one actually listened to me properly, clinically examined me properly, looked at my mri properly, and found the cause and solution to my pain. Four weeks later he fixed me.

    It's hard work and sometimes you have to get through beaurocracy, policy, finance and professional arrogance in order to find help. Keep going. It'll be worth it eventually.

    L5-S1 herniation. Both knee meniscus tear. L4-5 herniation - 2 x nerve block injections. L4-5 discectomy. L1-2 nerve block injection. L4-5 reherniation - TLIF fusion. 2016: L1-2 and L5-S1 retrolistheses and multiple facet joint degeneration.
  • Englishgirl, yes I too have young ones and this feels so unfair to them as much as me, you know? I am very confused with the work through it is going to hurt philosophy, I mean doesn't our pain indicate something? How will I know if I have injured l4-5beyond the annular tear if I just ignore the pain?

    Fitzcrackerz- I will definitely keep exploring other options before considering the stimulator. I am hoping with a clinical team approach insurance will be much easier to navigate, as none of this is inexpensive or easy.

    Forgot to mention too, that I asked what if this was another bone spur unseen by films(last surgery they found a dime sized bone chip compressing my s1 nerve, unseen prior to surgery on any imaging, also caused spinal fluid leak). His response was, well I can order a special ct scan that requires a lumbar puncture to insert dye, very painful and let's talk about the results. Say we see a bone spur compressing the nerve, then what, I should go in remove all the screws and apparatus get the bone chip and then screw everything back in place...you think your in pain now...Again, I felt somewhat unimportant and belittled as your no doctor, stay off the Internet and believe everything I say kind of attitude. Very dismissive bed side manner, so frustrating.

    He actually told me to stop visiting these boards because thinking about pain begets pain. I understand that, but I feel I have the right and responsibility to inform myself with facts and other people's personal experiences too, so my decisions can be well informed. I am not here to cry poor me, but to find answers.

    Thank you both for the replies, my mind is definitely on overdrive right now. Maybe it is denial, but a second opinion can't hurt.
  • SarahLindeauSarahLindeau Posts: 767
    edited 03/29/2015 - 9:47 AM
    Wow, your doctor definitely doesn't mince his words does he? I think you should definitely seek a second opinion. Sometimes, the bedside manner of the physicians we see can make us feel worse. Even if he has a point about believing surgery may not be the answer, I feel his cruel comments are unwarranted.

    As for these boards making things worse? I think he's kind of misinformed. Support groups exist everywhere for many illnesses and I'd be willing to bet most people on here feel they serve an important purpose.

    In the future, if you decide to continue seeing him, I'd suggest taking a family member or friend with you as an advocate. Sometimes, we are so close to our own pain and misery that office visits with surgeons don't go well and we react emotionally. There is NOTHING wrong with this, but the advocate can help us feel safe, supported and help keep the meeting going forward and in a positive direction by helping us ask questions, stay on track, and even speak up for us if needed.

    Hang in there and good luck to you.
    2015: Thoracic protrusions C7-T1, T3-4, T6-8
    Dec'13: 360FusionL4-S1 w/bone graft
    2013: 3x2-level disc injections: 12mo surgery postponement
    Dec'12: DiscogramL4-S1
    Sep/Oct'12: Bi-lateral Rhizo AblationsL4- S1
  • Thank you SarahLindeau- I think it is safe to say he will not be my doctor, we travelled three hours to see him because he was highly recommended by my last neuro(we moved out of state). Fortunately my husband was there with me, so I have asked him if I misheard to misinterpreted anything since obviously I was reeling from the emotions of hearing this. I was very upset and crying, so maybe the doctor just didn't know how to handle me, I don't know.

    I guess I was hoping this was a case of, oh let's re-work your PT, this is just some normal swelling that we need address. My worst case was hearing surgery, I did not imagine this as an option.

    Honestly, I am very happy I did come here first because I had a basic understanding of terms I had never heard before, spinal cord stimulator and FBSS. So I was able to ask questions pertaining to that. I agree, the support is much needed. Like anything else, unless you have chronic pain I am not sure you can fully understand it, so coming here has helped because there are the been there done that know what you feel people here.
  • I suspect that one of the reason some doctors don't like these forums is that we patients are becoming better informed. Through scholarly and Internet research, along with testimony from fellow pain sufferers, on sites like this, we are able to self-diagnose with some degree of success.

    The good doctor will thank you for making their job easier. The bad one may not be able to accept your diagnosis due to professional arrogance.

    I proved this with my own diagnosis; as I am studying for a doctorate (not in medicine),I have openathens access to several university libraries. I also insisted on having copies of all my mri scans.

    When I was in one of the UKs prestigious neurological hospitals over Christmas and new year, being 'treated' by one of the most arrogant consultants I have ever met, I took the time to write a dissertation on the likely pain generator in my back. It contained a literature review, methodology of diagnosis, annotated images, observations and conclusions. The references section was two pages long itself. The whole thing was Harvard APA referenced and provided irrefutable evidence of a reherniated L4-5 disc and that it required a fusion to prevent further neurological deficit. Arrogant consultant refused to read it and discharged me, in agony, along with prescriptions for seven different controlled psychoactive painkillers.

    I sent the dissertation to my original consultant (who had been overseas which is why I ended up with four others that didn't listen or care) at my local hospital by email, requesting an urgent review. That review took place two days after discharge from the neuro hospital and, four weeks after the review, my original consultant fixed me at my local hospital with a a fusion.

    When you find a surgeon who cares more for patients than their professional status and reputation, that's when you'll get fixed. There's plenty about and most find one straight away. Others, like you and I, are the unfortunate ones who have to keep looking for the surgeon in shining armour.

    I waffle a lot!

    L5-S1 herniation. Both knee meniscus tear. L4-5 herniation - 2 x nerve block injections. L4-5 discectomy. L1-2 nerve block injection. L4-5 reherniation - TLIF fusion. 2016: L1-2 and L5-S1 retrolistheses and multiple facet joint degeneration.
  • Refering to a totally different illness but the arrogance of Doctors. When my daughter then aged 14 was having fits and she had M.E./CFS I pointed to an article in a book that stated a Havard report saying 7% of people with M.E. had fits. He took the book from me and threw it across the room!
    I hope you are able to find a sympathetic Doctor who can help you.
  • I am sorry to hear you had a less then helpful opinion thrown your way.
    Even though the guy may be right, it doesn't make it easier to hear.
    I have friends and family in the medical field and have heard it from all of them... Surgeons are NOT good at bedside manner and many have a god complex.
    I have one of the most reputable spine surgeons in my area, but he is very abrupt and to the point. They aren't good at long term care or continuing issues. All they are good for is fixing the broken part. If they can't see anything to fix mechanically, they wash their hands of you...
    It's not right, but it happens. It's just not their speciality. They are only useful to us for one thing. I think all go into this, thinking our surgeon will be caring, understanding and helpful. Thats an expectation that is usually not met. It's not that the surgeon isn't good. I'm glad the man who dissected my spine, did what he did. But that's all he was good for. The remaining issues will be dealt with by a different specialist....

    As for pushing through the pain... I feel ya. We are supposed to walk a fine line of pushing our bodies to maximize the exercises, but not push over the pain threshold. How does one accomplish that, if you are in constant pain??? I have no idea.
    My therapist just pays very close attention and backs off if a new exercise makes things worse. It seems that I will make progress, and then something flares and I take 2 steps backwards. I hear that's normal too, but I am impatient and want things to move quicker than they are. I have a hard time accepting the pain may be permanent or the nerve dysfunction may never go away. Or that I may never be able to balance on my right leg. I'm only 35!!! My therapist claims after watching my body mechanics, I will be with him for at least 9 months. He doesn't have unrealistic expectations of my recovery and is trying to open my eyes yo my reality....

    I also have 3 young children. I think the hardest thing for me has been that I haven't been able to run, play or skip with my children. I feel like my youngest was robbed of a mother that could carry him or rock with him. I had a shoulder surgery when he was a month old and then this 3 level acdf when he was a year. He's 3 now and I fear I'll never carry him on my hip or be able to run and chase the way children do. It's so sad to me.
    So I understand how hurt you are. The entire situation sucks and you are too young to have chronic pain. It doesn't seem fair does it??
    You aren't alone. Keep coming to these forums. The Dr doesn't have a clue as to what you're going through and it's helpful to be able to vent. And another commenter hit the nail on the head... Some Drs don't like an educated patient. It makes their job harder. I'm of the mindset that we MUST be knowledgeable about our condition and connect with others that have been through something similar. It's easy to feel completely isolated with our pain, even if we are married to an incredibly supportive person. My hubby tries his best, but is the first to admit, he has no idea what I'm going through and can only try to understand... I find these communities the best place to vent and find the empathy we need....
    I hope you find your answers. You're making the right decision. Don't give up!! :)
  • Jill55 and lilahw- this was not a dr who appreciated a patient who had already done research . What he and his PA also did not realize was my former neurosurgeon, his previous teacher and colleague, had also reviewed my MRI and made no notation of swelling and scar tissue and sent me to them to manage care between shot placement and physiatrist with PT.

    I spoke with my old Neuro, who have been doing phone consultations and reviewed the recommendations and findings of this new Neruo the PA was very disappointed in their recommendations, also stating the concern of the stimulator not allowing mri in future, concern for injury by just powering through at the gym-especially considering the active life i already have, and method of conveying this info to me and my husband,as that was not how he used to be when they worked together. She is still of the mind that PT exercises are the way to go, with the possibility of going back into PT, and is consulting with the dr concerning the difference of findings. In the meantime I am continuing to research, increase gabepentin, exercise carefully and find anew doctor at a clinic that takes a full body approach and not just surgical.

    To be honest, the neuro I saw was over an hour late due to what the PA said, was a long night in the ER(totally understand this and was by no means upset at waiting, the nurse even let me go back early so i could wait laying down)the PA came in without fully studying the surgical notes they required me to have, because had he done that he would NOT have been surprised that the l4-5 level HAD indeed been surgically treated with a micro discectomy and decompression and is in fact not the first time having an annular tear and bulging issues, to the point where they were considering a double fusion based on how things appeared once the surgery was underway.

    SIGH...looks like another wait and more work, pain, medicate, rest, repeat cycle until I can get a second(more like third) opinion
  • Yeah... Sounds like a huge disconnect. I wish these Drs weren't so hard to deal with!!! It's like they don't trust we know our own bodies, because the text book may not say so....
    It's beyond frustrating. I have my hopes up that I will have a good appointment with a new neurologist on Wednesday. I advised them how complex my situation is and how long standing and they stressed the Dr will spend adequate time with me. They seemed to be very understanding of my situation so I'm hopeful...
    I am so TIRED of feeling this way. Everyone here feels the same...I suppose we aren't alone at least :)
    I think the whole body approach is the way to go. My therapist has forced me into fixing all of my limitations instead of just focusing on one part. If your trunk and legs don't work right, nothing up will either. If your shoulders aren't moving correctly, your neck and spine are effected. We all know this.
    My body, including my internal systems have been assaulted and are not working correctly.
    And no doctor will try to predict anything...
    Sigh....... !!!!
    I hope you get help. I really do....
  • OverItAll, I am so sorry for you and all of us that are dealing with are own spine associated pain. This is a great forum, it is comforting to see others dealing with the same things. I have come to the conclusion that there are good "confident" surgeons and many that are still gaining confidence. Just like car mechanics....Okay way different job but I've never allowed a car mechanic's opinion make me feel so hopeless that I wanted to die. I've also never tried to talk shop with a car mechanic.

    Good gosh, since 2008 I have wasted time blaming myself for trusting the first neurosurgeon I saw and not knowing or asking about non surgery methods. I have hated my neurosurgeon's guts for years and so hopeless that all the surgeries have only made things worse. The pain medications stopped working but If I didn't take them I got sick. I got the heck off Oxycodone in 2011 and started meditating. I was a broken, depressed, addicted, hater. Broken is bad enough.

    I wanted control back, to much focus has be on what I can not do and I stopped trying to find a doctor that would tell me that he/she could fix my spine. I see a wonderful neuro-oncologist specialist and a PMR doctor that treats my cervical dystonia (spasms) with BOTOX.

    Best wishes to all of you

    2006-Dec #1, L4-5 laminectomy
    2007-Jan #2, L4-5 laminectomy
    2008 Jan #1, Anterior fusions C4-5 and 6-7
    2008 July #2, Anterior fusion of C5-6
    2010 Apr L4-5 Global Fusion
    2011 June, posterior fusiont c6-7-nonunion
  • Because the neurosurgeon who did my last surgery and has been consulting over phone completely disagrees with powering through pain at the gym rather than slow and steady PT exercises, he feels a spinal chord stimulator is not the next step and only agrees with the recommendation to up my gabepentin to 1800MG. I feel very hopeful that there may be other therapies and options, he is asking for my films again to re check and see if they missed something that this new Neuro saw, but both he and his PA would like me to make an appointment with the other clinic as their whole body approach is closer to the direction they recommend and stick with listening to my body and gentle PT exercises.

    I feel confident in his findings, especially since he is going the opposite direction from a friend and colleague. The PA was actually so apologetic for his treatment as she knows my biggest issue is not giving in and resting too much, but pushing myself too much. They have also been inside my back and have seen everything firsthand and know that my pain threshold is quite high as I lived with a burst disc for two weeks and a bone spur compressing my nerve for months and months, all while working and PTing.

    At least today I may not cry at the thought of the next doctors appointment.
  • These doctors are now in the sites of the DEA. Yes they have to be able to show why they are prescribing the narcotics. One neurosurgeon said it is hard to show pain on paper if it's not a broken bone and so forth. Nerve damage isn't easy to show on paper. He told me that the DEA is putting so many doctors in jail that they would rather not be in pain management. But I feel high blood pressure , tears and carrying a cane at 48 (I still think 48 is not old) should show on paper. I offered to share my pain with the young doctor that told me I shouldn't hurt so bad. I wanted to will my pain on him for just one week. I know that sounds horrible. But a little taste of humble pie would do some of these doctors good.
  • Anyone training as a surgeon should have a tens machine turned up full power on their lower back for 24 hours. When the finally realise what level 10 back spasm pain is, then they might show some compassion.

    Like I said, radical.

    L5-S1 herniation. Both knee meniscus tear. L4-5 herniation - 2 x nerve block injections. L4-5 discectomy. L1-2 nerve block injection. L4-5 reherniation - TLIF fusion. 2016: L1-2 and L5-S1 retrolistheses and multiple facet joint degeneration.
  • But in addition, they should also have a heating pad on their back, ice pack on their feet and a three year old triplets kicking their shins the entire time...all while holding a ten puns sack of potatoes, then they may have a little understanding.
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