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Myelogram, MRI, misdiagnosed, pain, diary...

NimroxNNimrox Posts: 27
edited 01/23/2016 - 6:03 PM in Back Surgery and Neck Surgery
I am a 23 y/o (otherwise) healthy female. When I was 17 I was diagnosed with Spinal Stenosis and Disk Degeneration with a Herniated Disk at L4-L5. At age 20 after years of PT I went to the ER for terrible back pain and leg numbness. 5 days later I had an emergency fusion at L4-L5 for I was at risk of losing function of my bowel and right leg feeling. Now, nearly 3 years later I've had all the same symptoms since 7 months post-op. Not a day has passed that I wasn't in pain. Doctors chocked it up to weight gain or working too much. 3 days before Thanksgiving 2015 I went to the ER again for the same problem. X-ray showed nothing.

MRI with and without contrast stated :

L3L4: demonstrates mild facet arthropathy, no stenosis, no herniation

L4L5: demonstrates a moderate-sized right paracentral disc protrusion resulting in severe central stenosis. No foraminal stenosis. Facet arthropathy noted. There is right L5 lateral recess stenosis.

L5S1: demonstrates posterior decompression. No central stenosis. Right mild foraminal stenosis but not on the left. Facet arthropathy.

The disc herniation has increased in size in compared to the the prior MRI of 2013 with L4L5 central stenosis and right L5 lateral recess stenosis

I was referred to a Orthopedic Neurosurgeon and on 12/16/2015 I had a (TERRIBLE) Myelogram. (by terrible, I mean terrible. They didn't numb the injection site, just stuck the needle into my spine. I lost complete feeling to both my legs and my lower back ached like I had just been hit by a baseball bat, and the following day was the same. No headaches though.) My doctor called today with the results and stated I have only herniation at L4L5 and will preform a Nerve Block next week. He stated I had no other issues. So I'm at a loss here. Confused. Either the MRI is wrong or the Myelogram is wrong. Can anybody help me here? I don't want to go through unnecessary treatments to only end up having another surgery. If I need it, I would prefer to go ahead and get it over with versus 5 years from now when I'm older. Is there anyone here that can give me some more insight on what to do? What questions to ask when I see the doc next week? Was the Myelogram not done properly? Or the MRI? I don't understand. I've done more research than I'd like to admit but I'm still at a loss. Did the first fusion not do what it was supposed to do since, according to the MRI, has increased in size? I want to go a day where I'm not in pain. Thank you for your time...


  • NimroxNNimrox Posts: 27
    edited 12/17/2015 - 4:42 PM
    I'm also pretty sure I have Meralgia Paresthetica as well. That is where the majority of my pain is. My right outer thigh and hip. Weakness too. Most days I cannot walk due to my leg being very weak.
  • dilaurodilauro ConnecticutPosts: 9,839
    I have heard about several MRIs that have not pinpointed the exact problem. Some times that is the reading of the MRI Images. I know that two doctors can see things somewhat differently.

    But when two diagnostic tests come up with the same results --- I would tend to agree what is being said. Since you doubt those findings, I would suggest seeking another opinion.

    When did the burning in your thigh start?
    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
  • The burning in my thigh started shortly after my first surgery in June of 2013... The Myelogram is the only one that's saying otherwise.

    Both MRI's that I've had stated similar findings, the one in 2013 and 2015.
  • NimroxNNimrox Posts: 27
    edited 12/18/2015 - 11:50 PM
    This morning when I woke up, I tried to get out of bed but my right leg wouldn't work. My muscles were so weak I fell. The pain that shot through my leg was excruciating, and I even had moderate pain down my left leg (which typically doesn't happen)... I called my doctor and was told to stay in bed and if it were to worsen to go to the ER. They said they'd call me back with an appointment for a Nerve Block. Has anybody had one? What is it? How is it done? How long does it last? Why did my muscles go weak?

    Sorry if I'm asking too many questions... My doctors office said they were slammed today and couldn't see me and google searches are not much help... Please and thank you.

    Medial Branch Nerve Blocks
  • On the 23rd, I was seen by my Orthopedic Neuro Specialists and he injected my outer right thigh with a steroid and pain killer. I forgot what the name of it was but he said he does "about 8 or so of these a week"... It was terrible at first. He hit a nerve and my leg went rigid with spasms and intense pain. It helped that area for about 3 days but then everything came back. The pain, weakness, unable to put pressure on my right leg. I go back to see him on the 4th. What do I do? It seems to me that he's not really looking for a problem cause I'm "so young" to have these issues, BUT I DO. This guy is my 3rd orthopedic doc I've seen in 3 years. No amount of shots or PT is helping. I'm still thinking the Myelogram was wrong and the MRI was correct...
  • If you are having weakness that's usually a sign that your nerve is compressed somewhere. Usually the weakness is a big red flag, you would want to see a Dr. immediately or go to the ER sooner than later. I wish I would have gone sooner, I had a fusion on L5/S1 almost a year ago and waited until my leg lost all it's strength. I had extreme pain/numbness all down my right leg and into my foot, once my Ortho saw how much pain I was in and the weakness I was in surgery 12 hours later. Be persistent with the Dr's and you're right, sometimes PT and shots are not going to help. Nerves don't always appear very clear on MRI's and it's hard to diagnose without actually going through surgery. If you had a fusion previously you may also have some hardware that either is loose or pressing on a nerve. Best of luck and keep us posted.
  • Whether or not the nerves or the canal are compromised better than the MRI. It is why the test is done, to see if the dye injected flows through the canal and nerve roots at the vertebral levels.
    Unfortunately, I have seen MRI reports that often are almost carbon copies of one's done before. In fact have had several of my own handled that way, especially when they were done at the same facility.

  • Well this past Tuesday I had an appointment to see if this shot they gave me in my thigh would help, but it did not. So my doctor (neuro ortho) said the needed to contact my insurance to do an Epidural Nerve Block... Two days later, they called back saying Insurance denied it with the stipulation os 4-8 weeks of PT... I called insurance and they claimed the office never contacted them, nor does the block need a prior authorization... So I was lied to. But why? I don't understand... What do I do now??
  • Also, I found out the fusion I had was at L5S1, NOT L4L5... That was done through a completely different doctors office, nearly 3 y ears ago. All the paperwork I have on it says it's at L4L5... but xrays, MRI, Myelogram says it;s at L5S1....

    Jeez this is so frustrating. I'm only 23...
  • SavageSavage United StatesPosts: 5,427
    ...to be a sensitive subject to discuss.
    Your current situation is frustrating, no matter the age.

    I would suggest being patient with conversation.
    For ex...as you tell them that you contacted insurance to help get approval...and then state what you were told.
    Then, I would pause and let doctor explain.
    He may say something that makes sense to you.

    So you may or may not like what you hear.

    From my past experiences, I sometimes would "shoot from the hip".. and with later thinking it over, decide I could have handled that better.

    But, I would not want to be with someone I couldn't trust either.
    If you do not like what you hear, arguing will do nothing to help you.

    Please know...I'm not saying you would be argumentative....I'm speaking of my personal experience..reaction..to similar situation....decades ago.

    If not liking what you hear, you may want to consider a second opinion or actually another doctor.
    But your current Doctor does not need to be told your thoughts while they're forming.
    And then you will have time to think and truly decide.

    Trust goes both ways in relationship with doctor. It's hurtful to that trust if you are indeed being lied to.

    After you decide, yes you still want current doctor..or you have new one, then I would bring it up to the doctor I trust...re the issue of the surgery and the paperwork in conflict with images.
    Spine-Health Moderator
    Please read my medical history at: Medical History

  • After talking with my doctors office and insurance, I found out that the office did NOT contact my insurance, they simply pulled up "guidelines" from their website... Doesn't make much sense. Also stated that if the PT was not followed through that I would have to pay 100% out of pocket for the nerve block. Which I found out is also not true because my plan would cover it, and it also does not require a prior approval... The nurse from my doctors office stated that they were working with the Physical Therapy office and they needed more patients.

    In conclusion, after many conversations and my irritated husband, my doctor finally suggested we skip the nerve block and go straight to surgery. I had a medical clearance done at my primary yesterday, and should be ready for a L4L5 fusion next week. Finally.

    Though I am not happy with the incompetence of my neurosurgeons office...
  • you on here now?
    This can't be happening
  • let me know.....
    This can't be happening
  • itsautonomicitsautonomic LouisianaPosts: 1,805
    Glad found solution and got somewhere. I at a time lost my disability and health ins for a year when an office listed I was workers comp when I specifically said had injury at work but it was a long time ago and it's not workers comp. opened a can of worms took a lawyer to fix.
    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.
  • Well today I called the office again to see if they had received my medical clearance forms, which they claim they had not... though my primary office said they had conformation that the ortho office had received.. so I don't know. Ortho office also claimed no authorization for surgery has gone through either yet the office nurse said my doctor had done it already. I'm just so frustrated with the incompetence of the office... I'm one more "misunderstanding" away from finding a new surgeon... *pulls hair out* ... Now I have to wait till tomorrow to contact my primary to refax (or pick it up myself) the medical clearance info and wait for the surgeon to "get back with me"... I guess my injuries aren't worth his time.
  • talk to you there soon...
    This can't be happening
  • Friday morning my doc called me to come in ASAP. He and the two other neuro doctors in the office reviewed my MRI and Myelogram... (the Myelogram stated only a bulging and degenerative disc at L4L5, no stenosis anywhere. Which is why I was so confused.. They offered to do another Myelogram but I refused...)

    Anywho, all three doctors talked for several hours (so he claimed) and saw things that were "missed" on the Myelogram vs MRI and suggested that the disc herniation was too severe to push for PT right now and it needs to be fused so I won't lose all function of the nerves it's compressing, along with the other two doctors (they viewed everything separately at first) stated I DO have stenosis in several areas...

    So this coming Monday I will go in for a surgery consult and be given a date for surgery.

    Fusion of L4L5 and to "fix" the failed fusion at L5S1...

    Thanks to a user for some insight, I will bring up Sacroiliac Joint Dysfunction and see if they can/cannot rule that out as a possible problem...
  • itsautonomicitsautonomic LouisianaPosts: 1,805
    edited 01/17/2016 - 8:23 AM
    Nimrox I applaud you for not taking answers you didn't feel were correct inside . You are your biggest advocate and I hope the end of this journey is near.
    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.
  • I really appreciate that... Most people I looked to for advice, said the doctor is always right and to listen to him. I just couldn't take that. I'm glad I didn't.

    Anybody reading this, if your gut feeling is off, there is no shame or hurt from asking again for for another opinion. It may have saved me A LOT more pain. :)
  • Since last week, my doctor has ordered that I be off all medications aside from my heart and reflux pills.. Now I'm bed ridden with pain so intense that I have to force myself to sleep or else I get zero relief.. I cannot walk, go to the bathroom on my own, shower on my own, or dress... The slightest twist or wrong movement of my lower back, sends lightning down my right leg and I black out. I don't know if I can take another 11 days of this before surgery...
  • RisandMaggieRRisandMaggie Posts: 2
    edited 01/23/2016 - 8:21 PM
    If you haven't seen a pain management doctor, you may want to consider it. Mine has practically saved my life. More importantly, it sounds like you need to leave your [edit] doctor a bad review and go find one that actually cares about you and finding a solution for your issues.

    If you are in America, there is a specific process for gaining insurance authorization for nerve ablation or long term nerve block. You have to go through a series of short term, diagnostic injections first so the doctor can prove to the insurance company that the nerve ablation is necessary and will work. [edit]. If you're not around here, maybe they could help you find a pain management center in your area.

    Best of luck!

  • dilaurodilauro ConnecticutPosts: 9,839
    you should have someone take you to an emergency room.

    When you have pain that is taking you beyond your ability to take care of your self, then you need to be seen by a doctor.
    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
  • My doctor said to stay in bed till surgery... 10 days from now. I don't know what to do.
  • Today was better..

    By better, I mean manageable. 7 days till my PLIF of L4-L5... I really hope this fixes everything... If not they're going to evaluate me for problems at the Sacroiliac Joint... so much fun :( I'm not ready.
  • Today was terrible... My back feels like there's an ice cold metal bar pressing against my lower back... My right leg has shooting pains and I cannot move/flex my foot/toes... Nothing helps.
  • I am confused. You had fusion at which level?
    Did u have a mri after the fusion?

    I read that your latest mri still
    show you have l4-s1 discs? I thought you had a fusion somewhere??
  • I had a bone scan today...
    This can't be happening
  • 2/11/2016

    I am 8 days post op L4L5 fusion with Laminectomy, andhad hardwear changed out at L5S1.. .After surgery I could not extend my left leg or bear weight. Where, before surgery it was my right leg. Now my right leg is fine and dandy, my left is giving me problems. My hip mostly with sciatica pain. along with 24/7 complete numbness at the top of my right thigh. I'm waiting to be seen by my doc again, I was discharged from the hospital 6 days after surgery because of my left leg issues, but at day 6 I was able to walk on my left leg, still had bad hip pains though... I know it's confusing to keep up, it is to me too... I'm hoping this all goes away. Idk what to do or to expect now....
  • 7/20/2016

    I spent 48 days in the hospital... after having surgery in Feb, I was infected with Staph and had 4 "deep clean" surgeries with a PICC line for 16 weeks with 24/7 antibiotics to take care of it. While hospitalized, my organs began shutting down. Pancreas, stomach, kidneys, and my liver. I was on TPN and in an induced coma to heal my bod.. since coming home I have had no relief from the lower back and leg pain... it's now in my hip and my foot is still numb. Tomorrow I see my surgeon to do a CT to see what the new problem is... I'm alive but barely... I'm permantly disabled now and I'm only 23... I need help. Surgery after surgery to fix my spine and it only seems to get worse....
  • I just came across your story and I am mortified at all the bad experiences you went through. I hope they are adequately treating your pain. I don't know how I would have coped going through what you did at 23; my back problems started in my 30's. How did your last fusion go, did it take? Recovery from that is long, and not the 6 weeks that is commonly told. It's a super best case scenario to be able to return to normal activities at that time. Realistically it can be 6 months to a year. I had L4-S1 fused 8 months after a microdiscectomy years ago but I felt worse afterwards. I ended up getting a pain pump to better manage my pain since the nerve damage became permanent. I'm hoping a spinal cord stimulator will also help me because of new and ongoing problems. Anyway, please keep us posted and hang in there. 
    Ol' Spiney...Microdiscectomy L4-L5, TLIF L4-S1 -post op central disc herniation L4-S1, sciatic nerve damage, retrolisthesis, epidural fibrosis, facet arthropathy, severe DDD & OA.FBSS- Medtronic SynchroMed II pump.
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