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Pain Medication and my C5-7 DDD

I posted this in war on opioids because I think it's the most appropriate location, although it touches on a few topics.  

I was doing some thinking about everything that happened from the first time, in Jan 2017, that I began to experience symptoms from a severely degenerated C5-6 disc (and a more moderate annular bulge at c6-7).  In January and February, I felt like I had a severe crick in the neck, nothing terribly unusual for me but worse than cases I've had before.  In February I finally went to the doctor and got a steroid injection / medrol dose pack.  This seemed to do some good and I hoped I had turned the corner.  In March, the disc herniated and created a significant nerve impingement.  The pain spiked to about a 7 and I had the kind of typical scapular pain and shoulder pain that often occurs with nerve impingement along with severe neck pain and stiffness.  My doctor prescribed flexeril and another Medrol dose pack.  A week later he added Celebrex and prescribed PT.  

By early April, some of the intense paraspinal muscle spasms started to calm down, and I felt like maybe I had turned the corner.  On Palm Sunday, I went for a run before mass.  Felt amazing and went about 3 miles.  About 15 minutes later, the right side of my neck started to burn, and within an hour the burning sensation covered the entire side of my face.  I did not understand until later that this was because the mechanically deficient disc, along with the end of the intense muscle spasms, allowed for significant abnormal motion and facet joint overload with the impact of running.  PT finally started 10 days later, and I found I would have intense bilateral burning on the sides of the neck with any kind of exercise.  The pain settled into a routine of intense pain at the base of the neck from muscle spasm, followed by intense burning pain down the sides when the spasms let up.  

In May, I finally had an MRI... it showed the DDD and bulges, but no nerve impingement.  My doctor sent me next door to the neurologist who performed an EMG two days later that showed C6 (bicep) denervation (believe it was a historical artifact at that point from the initial herniation, which was probably large and significantly dropped the pressure inside the disc).  He prescribed Lyrica (which never helped) and sent me back to PT.  At the next PT session, my therapist tried manual traction, which caused a horrible relapse of the muscle spasms.  I'm certain the damaged disc tore some more with the traction force... not his fault as this is a standard modality but it worked badly in my case.  At this point, I insisted on a referral to pain management.  They set me up for an injection, which I had at the end of May... just in time for a family trip to DisneyWorld.  I felt ok on the trip, as the injection seemed to help a bit.  By the time we got back, it had worn off.  I had another mid June, but unfortunately a few days later symptoms flared again - likely another episode of the disc degenerating some more... At this point I made appointments with surgeons to discuss options.  

Essentially, the rest is history.  I decided on an ADR, both myself and my surgeon not understanding that some of the pain was facet joint generated.  The intense muscle spasms ended right away, but the part that was facet pain got significantly worse.  It was truly agonizing, and three months later I essentially had to beg the surgeon to order facet blocks, which led to an RFA.  This helped but only eliminated the worst of the pain..  At this point, the PM folks put me on 2X Norco per day, the first true pain medication I had been given.  Two months after that, I had a revision to fusion.  

Where am I going with all of this?  Lot's of people participated in my care, and all of them really wanted to help.  All could see that I was in agony throughout the process, as it was pretty obvious.  But no one prescribed any serious pain medications, and the current climate is to blame in my opinion, along with my generally low key personality.   I certainly have to take responsibility for not demanding better - although in this climate it's unclear if it would have helped.   If you look at the articles on DDD, it can take 1-2 years for discs to fully degenerate when they are in this kind of degenerative cascade, and often symptoms get much better at that point.  The one aspect of my care that I will always believe was wildly inappropriate was the lack of pain medication.  If I had been given this from the start, I think there is every likelihood I would not have been so desperate at 6 months to have surgery to get some kind of relief.  Perhaps I could have managed through, and perhaps not.  But in my view, the climate around opioids robbed me of that opportunity, because medical professionals are simply too scared to properly treat this kind of serious pain.  

I know that was very long winded... if you made it all the way through, thanks for listening to my rant!

Kevin

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13

Comments

  • DavidGDDavidG Posts: 928
    edited 05/05/2019 - 6:17 PM

    Kevin, great post and great conversational starter, Something for you to think about as well . If they had started you on a heavy Opioid from the start prior to surgery, Would your medical issues be better ? Or worse now due to the long term Opioid use? I ask this because I hear and know the battle that our members are going through right now trying to wean themselves off of them.....David

    DavidG

    Veritas-Health Forum Moderator

  • BRONCOFANBBRONCOFAN Posts: 102
    edited 05/05/2019 - 7:55 PM

    Thanks David,

    Great question... it's really hard to say with any confidence.  I hear you that in the past they'd give out the stuff like candy and try to get people down to zero pain.  But I don't think heavy opioid dosing would have been necessary, enough to allow me to get through the day without such intense suffering - knocking a 7 down to a 3-4 would have given me more stamina to hang in there.  

    But would I be better today?  No one can say - it's 100% possible that, without surgery, the next day the disc would have massively re-herniated and caused a permanent spinal cord injury.  Also possible that it would have collapsed to a stable configuration and I'd have less pain that I have now... and everything in between!  

    Completely get your point though, that doctors are trying very hard not to put people on the path to addiction... and I can certainly understand that.  BUT... and to me this is the most important point - that decision should have been made by me.  The system needs to clearly explain to patients in this kind of pain the risks and benefits of pain medications, and let us participate in the decision.  But the system made the decision for me in my case by never offering anything, and the results are what they are.. 

    Kevin

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  • Kevin,  I am going to agree with you.  The doctors saw on the scans what was causing your pain, you told them it was excruciating which I can't help but believe that they noticed that on examination.  You had tried some injections, and this pain was affecting your daily ability to get accomplished what you needed to do. 

    They should have given you the pros and cons and let you decide if  pros outweighed the cons in your opinion.  Then decided what they were willing to give you and go from there.  With pain like you were having, they should have been agressive in addressing it until a different and better course of action could be found.  I am guessing that your sleep was greatly affected.  That really wears on you after awhile.

    I mean it isn't as if you they had to question whether you were actually in pain.  Just my opinion.

    Cindy

     

  • BRONCOFANBBRONCOFAN Posts: 102
    edited 05/06/2019 - 3:44 PM

    Thanks Cindy!  My biggest regret is making such a big decision from a mental state that was clouded so much by the chronic pain.  I know to some degree that’s unavaoidable for spinal issues, but I remember when I finally decided to go ahead with surgery just thinking “I just want this to be over!”  

  • Kevin, At times I play the Devils advocate to make a person think. Not to judge their thoughts or decisions. I agree with both you and Cindy! At times we’re pushed into a surgery because our options become less and less. As I’ve posted before, My Surgeon was kind enough to send me home with 3 days worth of hydrocodone. No more, no less. Did he do me a favor by that!? That’s something I will never know. Either way, it took my career away from me. With the major depression that hit me following surgery, it was probably a good thing! ( yes my mind and thoughts went that far). I now forget what life without pain was. Today has been a rough painful day and I look forward to see what tomorrow looks like! Hang in there my friend....David

    DavidG

    Veritas-Health Forum Moderator

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  • David,

    I can go one better, my surgeon sent me home with Tylenol-3... I guess because they were out of baby aspirin.

    Kevin

  • David,

    I do think the fact that I’m suddenly feeling some anger about a number of things is a really good sign.  Since my disc failed, I’ve floated all around stages 1,3, and 4 of grief (denial, bargaining, depression) but skipped stage 2 altogether.  This site is really helping me get that part out, and I really think it’s an important stage.  Working through the things I’m angry about will ultimately, I think, help me to let go of them and get to full acceptance - leaving the past behind and spending all my energy on living for now and the future!  Thanks for your comments - most helpful!

    Kevin

  • Kevin, Anger is great for the healing part! We all go through the same stages and I hate hearing you skipped one lol. But venting is good and know we’re here for you! Even after you hit the acceptance stage, there will be short times of anger at times. Just know though, there is a fine line between acceptance and giving up!  Keep venting my friend....David

    DavidG

    Veritas-Health Forum Moderator

  •  David as well as you bronco are right about the fact opioids were given out like candy years ago and in alot of ways caused all these issue now in front of us...alot of people also improperly stored their medications allowing them to fall into the hands of teenagers. I remember 1 time my daughter when she was in jr high had a friend over. I guess she thought my husband being he had cancer must have pain meds somewhere.  Which he didnt at the time. I walked in on this girl going threw our medicine cabinet. This was also before my injury too so we had no pain meds in our house I was more then shocked and floored after that I stored every and any medication in a locked box.

      I also didnt want to go in PM then unfortunately I did only to end up with a PM that just loved pushing fentanyl.  I showed Ron all about it..now I wasnt necessarily unhappy wearing the patch matter of fact I prefer it..but ...bottom line would my outcome as far as my spine issues be different whether I took opioids or not..I doubt it.

      Unfortunately you came right at the big hit when all the doctors were scrambling over all the new regulations. See were I had been in PM since 2005...they limit all pain medication now and dont give them anymore as first line pain relief...like David my daughter had her gallbladder out at xmas only to come home with 3 days worth of vicodin. 

      But you do need to speak up if your pain isn't being addressed..you are your best a advocate...easy for me to tell you that when I'm also scared to do it for myself..I've been allowing my new PM to set the pace..I've grown so scared to speak up..in fears I will lose what I have...its sad.

  • BRONCOFANBBRONCOFAN Posts: 102
    edited 05/09/2019 - 7:50 AM

    Just was an article during my normal morning CNBC review - the journalist pointed to an 18% drop in opioids prescriptions as "hope in the drug crisis."  

    As many have noted here, there probably are people who are not being started down a road that will take them nowhere, and that's a good thing.  But just based on what I've read here, it sure feels like an awful lot of that 18% decline represents patients who need these medications and aren't getting them anymore.  Their voices are drowned out by the sound of politicians and anti-opioid groups high fiving themselves...

    Another thought too... many surgeons, in both my experience and the experience of others here, seem to be very anti-opioid.  Any thoughts on whether that has something to do with helping drive people who get poor pain relief into much more invasive procedures?  There seems to be a financial incentive, even for PM doctors, who can probably make much more doing injections, RFAs..etc that just from office visits.  In fact most in my area now call themselves interventional pain management rather than just PM.  I had not really thought of that link before, but it certainly was the case for me and I've read at least a few other stories here on SH where people felt the same way.   

    P.S. - I went to make clear I’m not trying to be overly critical here.. just pointing out that people are very good at convincing ourselves that things that are in our best interest are also the right thing.  Imagine being a PM doctor - would you want to spend your days swimming upstream, fighting off new regs and doing the endless paperwork needing to justify medications, all for minimal financial reward?  Or would you rather do procedures that are more lucrative and are in line with the current policy direction?  It’s easy to see why everyone is moving in the same direction when you think about it this way. 

    Kevin

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