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help with where to go from here...

Hi All,

My back pain started in 2013 and was fairly manageable.  At that time I was 25 years old.  I eventually had an MRI which showed 2 mm broad-based disc bulge at L4/L5 L5/S1 with no nerve impingement.  I was told that they didn't know why I experienced pain because those bulges did not affect the nerves.  The phrase "there is nothing wrong with your back" was used several times.

As the years have gone on and my pain has progressively got worse and less manageable I have undergone lumbar injections, facet joint injections, a facet joint RFA, and SI joint injections all of which were unsuccessful.  I also volunteered for and successfully completed 20 weeks of physical therapy with no reduction in my day to day pain levels.  I've seen three surgeons and I'm on my third pain management doctor who have all stated that my back pain is not coming from my back.  The pain lives primarily in my butt and hips and radiates into my legs.  It is constant and is worse upon prolonged standing and sitting depending on the chair.  My position of comfort is in a recliner or in bed with my legs elevated under a pillow while laying on my back.  I exercise and I see the massage therapist every two weeks who describes it like I have rocks in my hips and butt.

I've had three MRI's over the years which have all shown the same 2 mm broad-based disc bulge and nothing else.  I had an EMG last week that stated "moderate chronic radiculopathy on the right and left and additionally chronic left S1 radiculopathy with noted slowing on H-reflex testing in comparison to the right.  There was reduced recruitment on the left EDB showing worse severity in comparison to the right as well."  The neurologist told me I have likely permanent muscle death on the left side from the chronic impingement and suggested I contact a surgeon.

I contacted a new surgeon as suggested by the neurologist.  This surgeon like the last was a neurosurgeon, not an orthopedic. The new surgeon reviewed my records and had his assistant contact me to tell me that there is nothing surgically that will help me.

What if any solutions are available to me at this point?  I use this website a lot as a lurker and I'm hoping maybe one of you has the knowledge to help me because I have basically exhausted the medical community in my local area trying to get an answer that isn't some variation of "there's nothing wrong with your back"

FWIW I'm currently 30 years old and am extremely active through my job, not overweight, in decent shape, etc.  

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1

Comments

  • dilaurodilauro ConnecticutPosts: 13,150

    Some of your symptoms you describe would seem like sciatica, but the MRIs indicated that you have no nerve impingement.  Many times when I hear radiculopathy, I automatically think physical therapy.  In many cervical and lumbar radiculopathy situations, surgery is generally not the answer but physical therapy and exercise seem to be the answers.

    But you have tried physical therapy as you stated, along with various other conservative treatments.

    What seems missing is a formal diagnosis of your condition.  Yes, you know about the disc bulge, that is something that many people live with as long as its not hitting a nerve root.

    You also indicated that you have see many different types of medical doctors.

    I suggest at this point, that you see a counselor that deals with pain.  It is amazing to see just how much physical pain is brought on by emotional stressors.   That does not mean the pain is in your head, its just trying to get to the root of your pain.

    And that should be you major focus.

    Ron DiLauro Veritas-Health Forums Manager
    I am not a medical professional. I comment on personal experiences 
  • There are other types of scans that you might check into such as a myelogram, although it is fairly invasive and not very pleasant sometimes it is the test that actually shows what is going on

    challenger
    Spine-Health Moderator


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  • Hey jk1245, you’re not alone. My problem is very similar but is due to car accident. I myself looking for help too. How did this all happen? How do you manage day to day pain?

  • Go see a Pain Specialist.  Most hospitals have a Pain Management practice and a lot of times they are anesthesiologists . There are of course pain meds (not suggested) but there are injections (epidural, SI joint, facet joint) and I tried a spinal cord stimulator but it did not work for me unfortunately.  I ended up getting my second fusion surgery to correct my scoliosis curve (S1-T9).  Very major fusion surgery, but I'm doing well at 20 weeks post-op.  Good luck.

  • Does anyone know why an EMG would show radiculopathy on the L5/S1 nerve root but yet the MRI would still be the key diagnostic tool? I’m not sure why the EMG results are essentially irrelevant to the surgeon. The neurologist was confident the pain is coming from compression at my disc and yet the surgeon’s assistant made it clear that the only diagnostic tool that matters in an MRI- which is why I don’t want to undergo any other further uncomfortable tests.


    To answer some other issues: I’m a full time attorney so I luckily have the finances to do regular massage therapy, take decent vacations, sleep on a good bed (tempur pedic), I sleep on a heating pad every night, I stretch daily, I exercise, I take baths, etc. I also try to just live my life as I’m extremely busy with my practice as well as my very full private life- I’m too busy to lament too long! However it’s cerainly frustrating to not have a definitive answer to both why I’m in pain and how to help deal with it.

    Finally, as to the first commenter I’ve done therapy on an off both for pain related stress as well as other stress- I’m told i have good coping mechanisms and I know when to go back when I need it. There’s only so much time in a day though so I usually go 6 months on 6 months offngive or take. I believe in mental health tune ups so to speak. 

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  • L4_L5LL4_L5 Posts: 1,309
    edited 12/18/2018 - 6:44 PM

    I’d ask your surgeon why exactly you’re not a surgical candidate. 

    In my experience back surgeons (especially the orthopedic spine surgeons) are extremely structure-oriented or even structure-obsessed.

    What this means is that if they only see an annular tear or minor disc extrusion on your MRI then, even if radiculopathy is active and present, it matters not to them how bad your pain is (after all they are surgeons and not pain management doctors).

    I’ve heard it said many times in the past three years by a handful of doctors: pain is not a reason to operate on someone. 

    There has to be something structurally way off on your MRI for a surgeon to operate.

    Of course this is both good and bad. 

    It’s good because no one wants to rush into surgery without exhausting all conservative treatments first.

    And it’s bad because if you’re in a lot of pain 24/7 and there’s nothing surgical on your MRI then you’re stuck wallowing in pain management month to month.

    Don’t give up. I would try for a second and third opinion.

    Lastly, based on your initial post do you think you should consider pursuing a hip MRI?

    Please keep us posted on your progress.

  • Thank you L4/L5

    The last surgeon I saw before this one (and for the record I only starting pushing surgery as an option within the last 6 months after physical therapy failed) suggested the EMG and a hip MRI to give me a “full workup” - the hip MRI was unremarkable.

    So the surgeon I referenced in the initial post indicated to his assistant that he would not take an appointment with me (after reviewing my records including the EMG) and relayed that there was nothing surgical he could do for me. I have not gone back to the surgeon who suggested the MRI and EMG nor have I gone back to pain management since the EMG but my appointment with pain management is later this week. Both surgeons I’ve seen were neurosurgeons as I’m aware that orthopedics would likely not want to touch me due to the minor mechanical issue with my back.

    Any other thoughts or questions are welcome and I’m greatly appreciating the input and interest from this community!

     

  • I assume that your 3 MRI's were taken in the position that provides you the most comfort. You could look into obtaining a weight-bearing MRI and see if that has any effect on the extent of the disc bulge. 

  • RonB was spot on with his recommendation of a weight bearing MRI! As well as the member who recommended the mylogram, In my past life I was a medical professional and now I’m just another statistic. Yourself as a attorney would not take a case in front of a judge without knowing the complete details of a case. Neither will a reputable surgeon. The 2 test mentioned above are invaluable because your weight bearing structures will change versus laying in a supine position on a table. The mylogram which is slightly more evasive shows a clearer picture of your nerves and if impingement of a nerve has occurred, but know you will be there laying flat on your back for 6 hours after the procedure. The surgeon will take into consideration your age for one. You are still young where conservative treatment would be tried first. Once you have surgery there’s no going back! One thing most people are unaware of is that a successful spinal surgery means the spine is stabilized! It does not mean you still won’t have pain or other unforeseen problems. One thing you might try is start a log, where when your back starts hurting, write down what you were doing at the time such as twisting, picking up something, running etc..etc...notate what type of pain it is such as constant,intermittent,stabbing, aching, radiating. This will help the MDs try and pin point the area and problem. Make surgery be your LAST option!......David

  • jk1245- The reason I recomened  a myelogram is that it gives much clearer  pictures than a MRI it can show nerves much better than any other test, they inject dye directly into your spinal sac then do your scans and a CT a lot of members on this forum have had these, as I said before it is not very comfortable and you have to lay flat for an amount of time afterwards. The first time I hurt my back I had many scans of all types I was 22 years old, after a year of dealing with it and about to go crazy I went into the doctors office and told him he had three choices, he could find out what was wrong, somebody else could find it or I was going to go home and fix the pain permanently if you know what I mean. Myelogram was performed the next week, findings were ruptured disc with nerve impengment at L5, surgery scheduled the next week. The reason you need to keep trying is I was left with permanent nerve damage in my right foot and leg. Pain is always an indicator of something wrong you just have to find the right person to find it. Good luck to you and let us know what you find out. 

    challenger
    Spine-Health Moderator


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