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Doctor ignoring symptoms

I’m new to the boards, although not new to pain. I’ll try to make this short. For reference, I’m 28 and started having chronic pain and severe spasms at 14.

After being completely ignored about my chronic pain and severe spasms for years, after switching doctors, I finally have a doctor who took my pain issues seriously enough to order tests. I’ve had a full spine X-ray that revealed SBO, and a lumbar MRI that revealed two discs with DDD, both bulging, and one is torn.

My doctor had requested an MRI for my whole spine, however my insurance wouldn’t authorize it. We’re starting a treatment plan to help with the DDD. 

The problem I’m having now with the doctor is that they’re completely ignoring the severe spasms. These muscle spasms aren’t localized or short; the last one affected my entire back and neck, lasted multiple days, and landed me in the ER with a completely immobilized back and neck, an unrelenting feeling as though my muscles were being pulled beyond what they should, and pain so severe I vomited. Since that spasm, I’ve had sciatica and increased bladder urgency (about two months with these new symptoms).

I’ve had spasms that bad a total of three times in my life, and each time it feels like I’m going to be broken in half by my own muscles. No amount of home treatment stops it when it starts, and I’m literally unable to function for days on end. They come without warning and seem random.

The frustration I’m having is that when my current doctor put in the request for pre-authorization for MRI with my insurance, the only thing they put on there was chronic pain and SBO, nothing of the severe spasms, or of the sciatica and urgency I’m suddenly experiencing. The doctor ordered PT for 8 weeks, and if that doesn’t help, they’ll send me to an orthopedic, but still nothing about the other issues. I’m trying to be thankful about finally getting some treatment and validation, but I still feel like my doctor is ignoring the bigger issue that literally makes me a writhing, contorted mess and only focusing on the “easier” issues. Like, PT might help with the chronic pain, but I’m skeptical of it helping severe full spine spasms that come at random and we don’t have answers for.  

Has anyone had any success getting a doctor to listen to your symptoms properly? I want to know what’s causing these spasms and to be able to have an actual plan of action for them so I’m not a complete wreak when they happen. 

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Comments

  • Hi SarahHasProblems

    Welcome to Spine-health

    This is a horrible situation to be dealing with and at the moment you are struggling with having to carry on dealing with it, without diagnostic imaging to confirm any further problems.

    Maybe you could ask your doctor why those items were not disclosed to the insurance company.

    Certain insurance companies will not support further treatment without physio therapy sessions.  Maybe this is why your doctor is taking this route?

    There are a number of things here that you could ask your doctor about to calify his reasons.

    Maybe you can discuss your spasms with your therapist for PT to make sure they are included on the referral paperwork and known about.

    You have now found a good forum to help you with further information and support.  Please update us through your treatment.

    I have added two links below to help new members with information and these also contain the forum rules.  There is lots of material to research that will give you the power of knowledge.

    Welcome to Spine Health


    AJ 


    AJGormit

    ---------------------------------------------------------------

    L5/S1 herniation Apr 2013
    nerve root injections Oct 2013
    L5/S1 discectomy Jan 2014
    L5/S1 nerve roo &, facet joint injections & edpidural Jan 2015
    L5/S1 revised discectomy, L4/L5 discectomy & Wallis Inswing Stabilisation L4/L5 May 1st 2015
    L4-S1 TLIF with decompression June 2017
  • Hi Sarah,

      I feel your pain...literally!  I've been having spasms up and down my spine for the past 7-8 months with no relief other than heating pad, hot tub and therapeutic massage.  None of the medications I've been given work for the spasms.

      This is where I probably should direct you to "The War on Opioids" Topic on this site.  Its at the bottom of the list on individual categories.

      The CDC has stated that if you take an Opioid medication, your doctor should not put you on a Benzodiazepine muscle relaxer (works very well on spasms) because of the abuse potential and respiratory shutdown potential.  I understand where they are coming from on this given how rampant OD's have become.  BUT, that being said they are also cutting back on non-opioid anti-spasmodic's like Soma because of the abuse potential.  For me, the decision should be based on the individual, not society.  We (Spineys) are getting thrown in the group of addicts and abusers in the eyes of government.  Even though I'd bet my paycheck that spine patients are more careful with their meds than any other group of patients because we know the pain we would have without the medicine.

      I would suggest you speak with your doctor about the spasms again and see if he/she will elaborate more on it with you so you know what your treatment plan will be.

      Hope you feel better!  

    Keith


    Several Epidurals, L4-S1 360 ALIF, Numerous Facet Joint Injections, RFA x2
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  • Thank you both for your responses. 

    AJ, I’ve asked the doctor, and essentially they didn’t think the current other symptoms weren’t that big of a concern at the moment and if I experience other neurological symptoms, to tell them right away. It basically made me home bound for two months right now, because even if I get the motivation to get out with pain, if I have to pee, I have about 2 minutes to find a bathroom before I can’t hold it anymore and I don’t live in a public restroom friendly place. I’m trying to not rock the boat too much with the doctor by pushing, because it was hard enough to find a doctor who didn’t dismiss my issues because of my age and was willing to do diagnostic tests in the first place (I literally had a doctor tell me I was too young to be having all these problems and he wouldn’t even order an X-ray). My insurance would only approve a full MRI if I was having neurological symptoms or if PT didn’t help, so I get the logic of having me try PT first, I just don’t get leaving the Neuro symptoms off in the first place. 

    Keith, I’m sorry you’re having spasms as well, they absolutely suck. I’m only prescribed 600mg ibuprofen for it, no opioids and no muscle relaxants. The only doctor who will prescribe muscle relaxers to me is the ER doctor, my regular doctor doesn’t seem to understand how bad it gets when it’s a full attack. The last one lasted five days of continuous spasms even after muscle relaxers. Nothing could get it to stop and I still don’t know why it’s happening. I get that opioids and other prescriptions have a high potential for abuse, but the pendulum has swong too far the other way that many people who actually need these drugs can’t have access to them. 

  • nutcase007nnutcase007 United StatesPosts: 793

    SaraHasProblems - From reading what you posted, it sounds like your doctor is a PCP (primary care physician).  Am I correct in my assumption? You also wrote SBO.  Is that spina bifida occulta?  

    Since you say that diagnostics to date show at least one torn lumbar disc and SBO, I'm confused why you have not been referred to a spine specialist (such as a neurosurgeon or spine orthopedic doctor).       

  • Nutcase - yes, my current doctor that I’m speaking about is my PCP. They’re a doctor of internal medicine, but still more general. And yes, by SBO I mean spina bifida occulta. It’s located in my S1, however it hasn’t affected my spinal cord (my cord ends at T12, so no tethering). 

    Unfortunately, my insurance is terrible and doesn’t want to pay for a specialist, testing, or medication if they think they can get away with it. My doctor did put in a request for pre-authorization for an MRI for my entire spine, and they denied it, and only reluctantly approved the one for my lumbar because of the SBO. So I’ve been referred to PT and if that doesn’t help, then they’ll refer me to a specialist and request further MRI testing. 

    My insurance wouldn’t even approve muscle relaxers after I my last major spasm episode, I had to pay completely out of pocket for them because they weren’t pre-authorized from the ER. 

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  • nutcase007nnutcase007 United StatesPosts: 793

    @SaraHasProblems - I'm sorry for your sake to hear of the insurance games forced upon you.  Even with so called good insurance that I had, I was denied diagnostic tests that would have identified my condition.  I was left to deteriorate for years until I likely now have permanent neurological damage because of the insurance games. 

    From my experience, my advice is you play the insurance game.  Keep showing your "due diligence" so any doctor or insurance company has no basis to accuse you of "lack of trying". 

    Have you found any medication that will give you some relief during your "spasm attacks"?  If so, can you get it pre-authorized?  I know too well the suffering/pain of spasm attacks.  I'm not advocating opioid use, but I found the only class of meds that did anything for me during a spasm attack was a temporary use of an opioid.  Muscle relaxants did nothing for me. 

    We all on this site are about mutual support and sharing ideas of things that have worked and/or things that have not worked in our conditions.  Please keep us updated.   

  • Apparently the insurance game is sp common they made me go through hoops at the doctor to get an epidural and I have to laugh because when it came time for the epidural I called the insurance company to make sure it was approved and they told me I don' need authorization  (I have a 3k deductible plan sp it' all out of pocket till I reach that amount so why should they care right). I used to do customer service for a Medicare health insurance company so I know many times you must appeal the decisions being made and or follow the steps to get to an Mri. Sometimes a little leg work from you can get denials overturned. 

  • I understand how you feel. I was progresively getting worse pain over the past 7 years and I was 22 when I saw a va dr and told her my pain. They didn’t believe me because the X-ray was normal. Two years later after I was using a cane. they did an mri and showed degenerative arthritis L4-S1 which was causing sever spasms inflammation and sciatica landing me in the ER.  You have to be persistent. If I would have given up they never would have done the scan. Speak up for yourself and tell them you want meds for the spasms. Don’t give up and don’t assume they’ll give you anything without you speaking up for yourself.

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