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Conversion Disorder Could your symptoms be in your head?

Pain n the neckPain n the neck Posts: 8
edited 12/26/2014 - 5:43 PM in Pain Management
I have just had my second cervical fusion two months ago. I'm a 53 year old male, who up until 2009 was relatively healthy, happy and very active. In 2009 they fused C6/7 and in October they fused C5/6. They almost did C4/5 too, an MRI done just before surgery suggested that disc had improved so they did not remove that disc too. I have been told I have Disc Degenerative Disease, Spinal Stenosis and of course, prior to the surgeries , two ruptured discs that were causing some compression on my spinal cord.

I have had the following symptoms, not in any order; Chronic Pain, Numbness and Tingling of left arm and hand, leg and foot and even the left side of my face and lips. I have both mild resting tremors and lately some shaking in my right hand which has gotten worse. My coordination is bad as is my dexterity in both hands. I drop things a lot and have trouble handling small objects. I have had a limp in my left leg and find it hard to walk very far. I must add, I have Sleep Apnea for over two years and use a CPAP for a few hours every night. I was diagnosed with a serious an Anxiety Disorder four years ago too. I know, quite a mess aren't I? Many of my symptoms over the last 18 months had continued to get worse and unlike the previous fusion, I haven't seen any improvement.

Anyhow, on the Conversion Disorder. I started seeing a new General Practitioner 6 months ago as my previous Doctor is no longer practicing. This new Doctor obviously had a lot to deal with, but he did slowly get all of my records and determined that indeed, another surgery was necessary. I have had a lot of other tests to rule out things like Stroke, MS and Movement Disorders although many Doctors still think a Movement Disorder may be involved. I just had a follow up with this new Doctor who has seen me about 5 times and has performed a 2 physical exams just as the Neurologist and Pain Management Doctor had done. He shocked me at this appointment. After asking how I was doing and checking me out again, he sat back and told me he thinks I have Conversion Disorder. He went on to briefly describe what this is and I looked it up myself. Naturally, I was shocked at what I learned and interestingly, many of the symptoms are the same, but then, so are many other medical conditions.

Well, just yesterday, I get a letter notifying me he noticed that there were some lab work on my blood that had not been checked out to see if I have Peripheral Neuropathy. This is a condition that I've heard my Doctors mention, but nobody has given me a diagnosis. They all agreed that the Cervical issues were causing most of my symptoms. I am certain he is wrong about the Conversion Disorder. Has anyone else been told they have this? (Basically, he's saying it's in my head.) Information is available online.
I mentioned this to my pain management doctor who disagreed with this diagnosis and suspects an undiagnosed movement disorder.

Again, thanks for your input.
Heres to better days.


  • LizLiz Posts: 7,832
    edited 12/21/2014 - 7:06 PM

    Liz, Spine-health Moderator

    Spinal stenosis since 1995
    Lumber decompression surgery S1 L5-L3[1996]
    Cervical stenosis, so far avoided surgery
  • shouston7sshouston7 SOUTH CAROLINAPosts: 33
    When did you have your last MRI? GET a second opinion on conversion disorder. By no means am I qualified to diagnosis you, but everything I have Read on cervical spine conditions, could cause most the symptoms you are having and many other anatomical conditions can cause same symptoms. Ask the Dr. that said could be
    Conversion disorder why he thinks it might be that.
    With the tremors, numbness,limping gait ,maybe see a
    neurologist and asap! You said 2 cervical disc were compressing spinal cord before your surgeries. You might want to have your cervical spine re-evaluated.
    Before my c4-5 ,c5-6,c6-7 fusion ,plenty of different people thought it in my head, No it was in neck though and caused a variety of crazy symptoms!
    Keep searching for the answers, but do not wait too long getting another opinion.
    Hope you get answers and relief soon! You will be in my prayers

    S. Houston
  • Thanks for sharing your thoughts and experience SHuston7. I did have a follow up XRay to see the fusion went well and it has. The Surgeon ordered a follow up CT scan to see if they missed anything. There are still some bad spots in my neck, but nothing that he felt warrants another surgery. I think he was surprised I was not feeling better, especially considering how well I recovered from the first surgery.
    I will be seeing my PM Doctor next week. He disagrees with the Diagnosis of Conversion Disorder and suggested I change doctors again. I will be asking this GP how much experience he has with Conversion Disorder and why he feels that is the case. I find his statement peculiar as he was just telling me I should get this second fusion as he felt it was contributing to my problems. I will be respectful of his opinions, but I'm not sure if I want a Doctor treating me that feels this is the case. I also hesitate to change doctors because I don't want them to think I'm looking for someone who agrees with me.
    We all know that pain causes anxiety and sleep issues which contribute to pain. A horrible cycle. I've also been told that cord compression can cause lingering if not permanent damage and or symptoms so why after only eight weeks did he tell me that? I'd sure like to hear if anyone else has been told something like this.

    Thanks again,
    Heres to better days.
  • shouston7sshouston7 SOUTH CAROLINAPosts: 33
    Hi pain n neck,
    The spinal cord compression is exactly what I wanted you to ask about, the conversion disorder seems a shot in the dark. In the years since seeking medical advice and treatment for my spine, I have learned many physicians do not offer knowledge of side effects from surgery or treatments in any very informative way, not to miss inform us I don't think, just so we don't start having symptoms from power of suggestion.
    Hope you get better soon! Shouston
    S. Houston
  • Yes Huston, I concur. So many things can come from a compression. I will let you know what they say. This should be interesting.
    Heres to better days.
  • itsautonomicitsautonomic LouisianaPosts: 1,813
    edited 01/30/2015 - 5:56 AM
    No doctor should tell you its in your head unless 100% sure it could not be coming from anywhere else, so many of us heard in your head early on then got real diagnosis later. I would look into a neuromuscular doctor and neurosurgeon, a GP is not qualified in my opinion to treat/diagnose this. Doctors have issues saying I dont know whats wrong with you and get you to right person, instead what I have seen they say its fibromyalgia or in your head if they cant figure it out.
    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.
  • dilaurodilauro ConnecticutPosts: 9,865
    all the data available to them... Diagnostic test reports, clinical examinations, etc. then they should be able to identify where the problem "could' be coming from. I say could, because the isolation of some spinal problems is not an easy task.

    There could be times when all appears normal, yet the patient continues to complain about severe pain that the conclusion could be: It is more in their emotional state than in the physical aspects

    And that could be very true. There are scores of patients that find something wrong with themselves even if there is no medical evidence to substantiate that. But those good doctors go beyond what just looks obvious. So what if a test shows normal and everything else is normal, something is not right. They dig and dig until they come up with a solid answer. That answer still may be its emotional, but many times the efforts of those doctors will pay off for the patient's well being.

    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
  • itsautonomicitsautonomic LouisianaPosts: 1,813
    Dilauro I think u were blessed with a great dr early on, what I have seen is that when they reach the point that they can't figure out issue and it's then in your head , the next statement is you need to see a physc and u may never see that specialist again or for very long time. Anyone suffering and undiagnosed in horrible pain for long time will show as depressed or down but that is not treating the root cause actually it's postponing diagnosis in many cases . There is a time for seeing a physc but often they are a drs relief valve when answer isn't found. I have a great one now she ignored all those other drs found the issue with specialized testing the.n set up treatment plan and talked about seeing a physc for the mental component because not being diagnosed but hurting for so long has caused axeity and fear that need to be worked out. A good dr won't say it's in head before exhausting everything. She shook her head in disgust when discussing my diagnosis and that it wasn't in my head as other drs stated. If she was first dr I saw 3 years ago I'd be in much better place minus a lot of physical and mental suffering , Good dr gonna do their due diligence and more before any statements about being in head are expressed. There are ways to tell a patient that respectfully and other ways that are disrespectful
    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.
  • 7-8 years ago I was placed on disability due to some severe extremely painful back disorders.. Since that time... I have had a stroke, pain management for 4-5 years, several nerve burnings, injections, and 3 MRI's which all diagnose me with sciatica, stenosis, pinched nerve and now slipped disk (a week ago). I also have sleep problems, joint problems and use a tens unit about 6 hrs a day.. My dr. asked about my original disability findings... I also have anxiety issues and panic disorders...My records have long been stored but I went to social security a few days ago and the only word the agent told me was on my "psychiatric profile" was Somotoform disorder...(similar to conversion disorder which means all in my head)... I'm upset now that I've had all these needles, surgeries and severe pain and then read that it's imaginary...What do I do.. My pain is real.. I am doing everything possible to get the back straightened out so I can live a normal life... I'm 65 years old, normal weight, etc... Am I crazy? If it was all in my head... then why did I qualify for disability on the first time around after the physical exams and mental exams?

    onwillowbay (Diane)
  • Jill55JJill55 Posts: 101
    edited 01/11/2016 - 5:23 AM
    In my opinion this is a bucket diagnosis when they have run out of other ideas. A G.P should not be attempting to diagnose this. It is a psychiatrist mental health experienced Dr who should be diagnosing this. Yet again I'm afraid I refer to my eldest daughter who was also told she had this incorrectly by a neurologist. In fact she has a host of genetic and other health problems. Far from conversion disorder. Don't let this be left on your medical records. It affects everything you are treated for. You end up in ER, oh conversion disorder, bye. That is how you are treated. Beware.

    Please do not make assumptions. What you say is very valid for your daughter, and having the correct doctor make the diagnosis is important. But without having all the details , as we rarely have online , you could be given incomplete/inaccurate directions by making a blanket statement. -- Ron DiLauro, Spine-Health System Moderator
  • itsautonomicitsautonomic LouisianaPosts: 1,813
    I agree I personally think conversion disorder is a get out of jail free card for Drs if the patient has been evaluated by a phsycologist and deemed sane. The majority of time their is always a reason, the pure amount of possibilities of what it could be are endless and can take years.
    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.
  • PlumbTuckeredOutPlumbTuckeredOut Philadelphia, PAPosts: 325
    So, here we have the most difficult part of pain to explain.  If I were to ask you how does your heart beat some people may describe the electrical impulses which cause the constriction on the heart muscle which squeezes blood through the chambers....  If I were to ask you how you eat some may tell me you put food in your mouth and swallow.

    All the functions in your body are happening because of what is IN YOUR HEAD!  Your brain is telling your heart to pump, your gut to digest, your eyes to blink and your lungs to expel air.  The supercomputer to everyone's body is in THEIR HEAD!

    I had tried to explain "Pain" to someone by private message but I understand that there is a lot of lower level biology needed to be understood to understand what little we know about pain and how the brain creates and controls pain.  It is very possible for any person to have intense, uncontrollable pain but no tissue damage that indicates a site which should be painful.  This doesn't mean that pain is fake or made up.  This means that your brain is indicating pain in a place where there is no tissue damage.  Conversion disorder does NOT mean that you are faking pain!  Your brain is CONVERTING signals coming from an area of your body to pain signals where they may not be indicating pain.

    My body, more aptly, my brain is screaming up a storm regarding pain in areas where the tissue damage healed or regenerated decades ago!  My leg still has the same feeling of intense pain as the day I broke it when I was 9 and in a three legged race!  The pain is a very real sensation but there is little that can be done medically to alleviate the pain.  Some day we may be able to jump start the brain to "erase" pain memory.  (Like Windows!  Turn it off and start it up again!)

    Conversion disorder has nothing to do with "sanity".  It has nothing to do with "making up" pain.  In the same way, if I had a brain tumor you would not consider this to be an issue of sanity!  I have Obsessive Compulsive Disorder and MANY people consider this to be an issue of sanity because it involves the thought process.  But people with this disorder (NOT people who claim "I'm So OCD!") have a higher percentage of gray matter to white matter in their brains.  They have an highly active hippocampus.  I could go through describing all the structural differences the brain has in people with OCD and yet people still believe it can be changed with willpower!  Willpower doesn't change structure!  It will soon be possible to identify genes which cause different brain disorders.  Conversion disorder may very well be one of them!

    If anything, a doctor admitting there may be Conversion disorder is admitting that they do believe you have pain but they are not capable of doing anything to change it.  I know people are going to tell me, "I looked it up!"  Yeah, the internet is a fascinating place where you can find any kind of false information you want to back up anything that can be dreamed up.

    Additionally, don't believe that what you hear today from your doctor is the be all and end all.  When I first hurt my back we didn't have MRIs or CAT scans.  I was a child and therefore I could not have an injured back.  Every day we are learning new things and changing our opinions about old beliefs.  Medicine is a science- a mass of theories dynamically changing on a daily basis. 

    EVERYTHING I care about is in my head because my spleen doesn't have enough memory.


    Two roads diverged in a wood, and I took the one less traveled by...... (Robert Frost)
    I still don't know if I should have taken the one that said, "Caution! Dead End" (Me)
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