Understanding and Treating Myelomalacia

Myelomalacia is a neurological condition referring to the softening of the spinal cord as a result of hemorrhagic infarction (the bleeding of the spinal cord).  Although research into the causes of myelomalacia is still developing, sports-related injuries and old-age as factors are generally seen as the major causes.

However, since myelomalacia is typically diagnosed long after the onset of nerve damage, post-op tests suggest that other signs of the conditions can be easily overlooked.

Before exploring the treatment options, here’s some more information on what is myelomalacia. 

Early diagnoses is very important for effective treatment.  The disease may not be curable, but proper pain management can make a difference.

The first line of defense against myelomalacia is prevention.  Most clinicians agree that repeated blows to the spinal column could trigger bleeding.  This is why doctors insist on athletes wearing protective gear during matches.

However, in rare instances, myelomalacia can occur in the absence of mechanical shock to the spinal cord.

Depending on the location and severity, spinal injuries can severely affect the spinal cord’s functionality, ultimately inviting myelomalacia.  From a statistical standpoint, myelomalacia is more common in L1-L5 (first to fifth lumbarvertebrae) and C1-C5 (first to fifth cervical vertebrae) injuries.

Understood as a softening or, more precisely, a weakening of spinal cord segments, myelomalacia is a degenerative neurological condition.

Symptoms

Although symptoms may vary, doctors have noted that many people diagnosed with the condition had flaccid paraplegia (total or partial loss of motor functions in the lower part of the body).

Furthermore, myelomalacia has no tell-tale signs.  In some cases patients come in with hypertension, but later discovered they have myelomalacia.  There are two means of diagnosing myelomalacia: magnetic resonance imagining (MRI), where the specialist assesses the extent of the damage caused by the disease through measuring bone matter density.

Another way of diagnosing myelomalacia is by performing a myelogram.  Myelography involves injecting a radiocontrast substance such as iodine, barium, carbon dioxide or water and conducting a series of X-Rays.  The substance would ‘illuminate’ the affected area for the physician, thus increasing the diagnostic precision.

Unfortunately, from its onset, the condition progresses a predictable course: after flaccid paraplegia occurs, the patient develops areflexia (suboptimal reflexes), followed by the loss of deep pain perception in the coccyx area.

As the condition progresses, muscular atrophy would ensue, followed closely by intercostal and/or diaphragmatic paralysis.  Clinical observations have revealed that myelomalacia ultimately reaches the brain, creating additional neurological deficits.

Death occurs when the damage reaches the phrenic nerves and the motor nuclei, which are located in the area between the third and fifth cervical vertebrae.  Myelomalacia is often called an ascending syndrome since it can reach other upper-body regions.  Most patients die due to respiratory paralysis.

Treatment Options for Myelomalacia

As far as treatments are concerned, there’s no universal cure for myelomalacia.  However, if diagnosed during its early stages, the neurosurgeon may perform a spinal cord decompression operation.  Using camera-guided instruments, the surgeon would relieve the strain on the spinal cord produced by an injury.

In advance stage myelomalacia, treatment takes the form of palliation(supportive care, meant to tackle emergent symptoms rather than treat the cause).  Although nerve damage is irreversible, surgical procedures in conjunction with drug-based therapies can stem the progression of the condition.

Other symptoms attributed to myelomalacia such as muscle spasticity (jerking of the limbs) can be alleviated with steroids.  The same drug regimen can be employed to reduce the spinal cord’s swelling and/or pain.

In terms of palliative care, doctors often recommend chiropractic physical therapy in order to relieve back pain.

The latest research shows that stem cells could be deployed to undo some of the nerve damage produced by the condition.  However, the treatment hasn’t left the experimental stage.  Moreover, there’s no indication nor guarantee that stem cells can, in fact, alleviate or treat the condition.

Conclusion

Myelomalacia is a rapidly progressing neurological disorder that is often caused by spinal cord injury.  Most doctors agree that the only guaranteed way to treat the condition is by preventing it in the first place.  If you’ve reasons to suspect that you could have the condition, we recommend that you consult a neurologist for an immediate assessment.  The condition’s highly treatable via surgery and medication if it’s caught in the early stages.

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**This article and its contents is not intended to be a substitute for professional medical advice, diagnosis, or treatment, and does not constitute medical or other professional advice.  The Utopian Life does not recommend or endorse any specific tests, physicians, products, procedures, opinions, or other information that may be mentioned on the website.  Reliance on any information provided herein is solely at your own risk.  The information provided on this website should not replace the relationship that exists between patient/site visitor and his/her physician.  Never disregard professional medical advice or delay in seeking it because of something you have read or seen on this website.**

59 Responses to “Understanding and Treating Myelomalacia”

  1. November 30, 2018

    Macy Faciane Reply

    I would like other articles on this subject of Myelomalacia

  2. December 12, 2018

    Jennifer Reply

    I have this and need more info please. I had a tripple neck fusion but, damage was too much to fix. I live on pain medication. Would love to know of better medications or other options. Thank you

    • January 6, 2019

      JC Reply

      I know someone who has your condition and he is really trying to connect with someone who diesnt look at him with ???? Hovering above their heads. Perhaps you too are looking for someone you can share with…….

      “Support doesn’t always come from familiar faces, so don’t be surprised if God places Strangers in your life to take you to higher places!”

      • March 20, 2019

        Kim Reply

        I have this condition iv had it since my neck surgery in 2015.
        I know your friends frustrations people without this condition doesn’t understand the pain we are going through and the changes in our body.

        • November 18, 2019

          Lisa I keyser Reply

          Kim
          I just came across this page and im trying to navigate it. I also have a Myelomalacia after my cervical fusion surgery. The pain is unbearable even after constant medication…have you found any relief? Or any information on stem cell? Id be a guinea pig to remember what it feels like to have no psin.

          • November 18, 2019

            Kimweir

            Here in Australia we get pandeine forte and that’s about it the government will not use moraine unless you are 92 days from dieing and no doc will tell you because of the law and nowon will take on the government I see on. TV the yanks are coming over here because it cheaper to live here and it is but not better

      • July 14, 2019

        Chria Reply

        I know someone as well. Pls reach out to him and let him know Chris sent ya

        His name is Mike and he js living with this God awful condition..

        Email Mike: met5575a@aol.com

    • May 19, 2019

      Michael Lapp Reply

      I also have this condition, mine was caused my malpractice and I have had 11 surgeries. Mine is located in the cervical region The one surgery that has had the most positive effect was the insertion of an intrathecal pain pump. It was inserted on the left side of my abdominal cavity and is filled about every 6-8 weeks. I started with morphine but am now on Dilaudid, this has helped very much but has not come close to alleviating the pain. If you are having a good deal of pain this may be the answer. You have to find someone who knows what they are talking about in order to treat it. Most doctors don’t believe in electronic devices and would rather leave you suffering or strung out on drugs. What ever you do don’t get a Neuro stimulator. Statistically they work great but, recently, the FDAC learned that there have been nearly one million unreported deaths due to the stimulators. Another example of how poorly managed health care is in the US. Good luck to you.

    • July 21, 2019

      Leslie Reply

      I had 3 level cervical fusion C5,6,7 twice. First in 2013 then 2015. All doctors looked at me like I was crazy when I would explain my symptoms until this last doctor I just saw. She is at Swedish Spine Center in Seattle. She knew exactly and that my MRI shows the myelomalacia. She suggested I take Cymbalta. In low doses it is supposed to be very effective for spinal cord injury. I’m going to start tonight. A few people in my support group have said it helps them tremendously.

  3. December 19, 2018

    Lori klunder Reply

    I have been told I have a compressed spinal cord in my neck and a reverse curve.
    I suffer from extreme head and neck pain every day and my left hand and arm goes knumb all the time.
    Does this mean I might have myelomalacia?

    • June 18, 2019

      CarolinevMitchell Reply

      was resentful diagnosed with mylomalacia and the symptoms you are having are the same as mine. It is possible that it is coming from this but there could be a number of things that cause the same symptoms. I sure hope you find out it is not this and I hope you can find out what’s going on get some relief soon.

    • August 11, 2019

      Wlejeune Reply

      I have had accident with single fision in 2004 that when my problems began I was never the same had pain was uncomfortable I may aged and lived with it in 2015 I was in another more severe accident and I had another surgury and this was a triple fusion after surgery I was still in extreme pain well had another MRI is when the Dr found it my spine Al cord on first MRI you could barely see the compression against the spinal cord on the spinal cord was a dot look like dime size white spot when we saw the second MRI that little spot had grown to the size of 2 quarters on top of each other my spinal cord compression has done peinant damage to the cord that is irreversible. Myomalacia my Dr called it. This damage has made me have extreme hand pain where they become both completely numb and if I’m sleep the throbbing pain will wake me. Right before my surgury my finger tips were getting numb it progressed to where hands and sometimes ate ate numb. It’s a scary feeling I’m waiting for the approval for this next surgery need wait 3 years getting worse and worse it’s not to play with it causee to lose my balance I have fallen three years im ladtonth I’m scared I fall and end up patluzed. It happen to a friend ofine see condition she couldn’t have surgury no insurance no she is living in a wheelchair. I have been denied 5 times for social security been under Dr care for last five years and Dr says I can not work. What can you do when you can feel your hands

    • August 11, 2019

      Wlejeune Reply

      If you don’t have a decompression surgury to decompress the pressure against the spinal cord the fusion will not help had a 3 level fusion still in extreme pain and has worsened extremely my Dr didn’t realize I had the compression and detect the damage to my spinal cord until after the surgery and the hand pain had worked extremely. Have decompression surgury to get the pressure off spinal cord or it will worsen

    • November 18, 2019

      Kimweir Reply

      Go get a MRI this is the only way to tell and good luck I hope you don’t have Myelomalacia

  4. January 12, 2019

    Luisana DeGolyer Reply

    I have this along with fibromyalgia and other health problems. Let me tell you my life is destroyed. I have questions and need answers and I have none. I am living a nightmare. This pain is slowly killing me.

    • March 5, 2019

      mary Abrahamian Reply

      I too am in end stage myelomalacia. I am in total agony 24 hrs a day. I get a little relief for about 2 hours after taking y 10 mg oxycodone,but once it wears off, my agony is unbearable. I pray that God end my suffering, since I have no life like this. My family cannot accept the fact that this condition is so bad. and try to find alternative remedies for me. I had c5 c6 fusion in 2010, and have progressively worsensed each year. I get no sleep other than the 1 to 2 hours after I take oxy. Oxy has given me other side effects, esp. dehydratio, constipation, dry mouth. sweating, My throat/neck is closed 99percent and I feel like I am suffocaing . Death from respiratory failure will cause my death in a short while.

      • March 20, 2019

        Kim Reply

        I’m so very sorry I pray for peace and no more pain for you. It’s hard when our families don’t understand our suffering.

      • November 18, 2019

        Kimweir Reply

        Am the same as you sum of the things u say are not corse through the meds but are by Myelomalacia the dry mouth the sweet ing the burning the Lost of Moto and the pain all Myelomalacia here in Australia they say it’s untreatable so no meds given and no help from the government at all am happy you get some meds

    • April 19, 2019

      Laura Norman Reply

      💕 I’m sorry you all hurt.

      My 50-yr d husband was just diagnosed with nyelomakacia (lumbar). Brutal.

      You all need to try CBD products.

      Don’t judge… it helps him sleep every night.

      Best of luck to you all.

      • July 23, 2019

        Jane M. Paulsen Reply

        No judgement here! Thanks for the info. My 83 yr old mother finally took CBD for pain due to cancer and it helped her tremendously!!

    • May 19, 2019

      Michael Lapp Reply

      There is no answer to your question or condition. Mine was caused by malpractice and I have gone through 11 surgeries. The only thing that helped me was having an intrathecal pump installed. It goes in the abdominal cavity and a tube is rummabove where your condition begins. The pump drips any number I’d drugs into the spine that do have a significant effect. I started with Morphine but am now on Dilaudid I thing my does age is 6 mg daily, there is a 300 to 1 ration on this method of pain management. Meaning 6 mg’s Equals abou 1,800 mg’s of oral meds. The difference you don’t even notice that your getting the infusion. You don’t fal, a sleep and you can drive while it’s happening. I hope this helps.

  5. January 14, 2019

    Veronica Stone Reply

    I am numb from my neck down the pain in my neck combined with the numbness is more than I can take each day. Now they don’t like to give pain medicine which is so so sad for people who truly suffer! I’ve had surgery but the damage is already done. I’m in limbo & my quality of life is gone…

    • February 7, 2019

      Lynne Macrae Reply

      Veronica I felt compelled to respond to your message because I can totally relate to what you are experiencing. Fortunately my numbness stems from my bra strap to my foot only on the right side and my left foot only. I know sounds crazy but it is not pleasant at all to stand or walk. I try but the pain is unbearable at times. I too feel as though my quality of life has suffered a tremendous blow. My numbness occurred when I woke up from a surgery to implant a spinal cord stimulator. It was removed the next week but the damage was done. I kept being told it would go away but it will be a Year next month and it is still unchanged. I just got a MRI which shows myelomalacia at T8 on the right side and that is exactly where the surgeon had put the leads. So I was trying to improve my pain and instead got a million times worse from a surgical procedure. The sad thing is no one will listen to me and therefore nothing has been done to fix things. I am hoping that the referral for a new neurosurgeon is the blessing I have been waiting for. What type of surgery did you have and how recent was it?

  6. February 15, 2019

    Marilyn Reply

    My brother in law was just diagnosed at the Mayo Clinic. Not much help with the other doctors he has seen in his area in MD.

    • March 20, 2019

      Sam Reply

      Is mayo clinic good?

  7. February 15, 2019

    Marilyn Reply

    Please let me know of any new treatments

  8. March 2, 2019

    Teresa Lynn Barton Reply

    My husband had MRI next day called from NEURO-SPINE DR. for surgery scheduling. Explaing how important for surgery. MYLEOMALACIA BRUISING, should we go to Mayo Clinic?

    • November 18, 2019

      Kimweir Reply

      The Mayo is even known here in Australia it leads the world for
      treatment for Myelomalacia
      This email has taken over an hour to write so I go but to the people that want to know about Myelomalacia just remember I don’t lie and I don’t suger coat

  9. March 2, 2019

    Marilyn Reply

    My sister-in-law believed that it was worth it. However her husband is not following through with what he needs to do. He has extreme anxiety and is mentally abusive to her. She needs to get out of the marriage.
    They had to get their insurance to approve before they went. They were in Minnesota for 5 days. They experienced long days of testing. They did not feel that the doctors they had seen in their area had been helpful.
    Hope that this helps.

  10. March 18, 2019

    Diane Reply

    Trying new long acting morphine like acting. Class 3 drug like Tramodol not class 2 like vicodin, oxy,etc.
    Has anyone tried this?

  11. March 21, 2019

    Raphaelle Reply

    I need help explaining this diagnosis to my family members. A 2016 MRI revealed I had myleomalacia bruising at C4, yet in 2017 my surgeon fused C5-C6 with no mention of the problem at C4. I reviewed the MRI when I developed additional pain with little to no relief with hydro. Can anyone tell me if fusion at C4-C5 will help with the pain or if this will be a temporary fix.

    • April 18, 2019

      Luisana D DeGolyer Reply

      I had anterior cervical discectomy and fusion with metal plates and I live in hell everyday. It did not help me.

    • August 11, 2019

      Wlejeune Reply

      If you don’t have a decompression surgury to decompress the pressure against the spinal cord the fusion will not help had a 3 level fusion still in extreme pain and has worsened extremely my Dr didn’t realize I had the compression and detect the damage to my spinal cord until after the surgery and the hand pain had worked extremely. Have decompression surgury to get the pressure off spinal cord or it will worsen

  12. April 10, 2019

    Mike Reply

    I would like to find a doctor that specializes in Myelomalacia Please does anyone know a doctor anywhere in the United States that specializes in treatment with drugs and to let me know what What I should do. God bless. You can email me at Met5575a@aol.com

    • April 15, 2019

      Marilyn Reply

      My brother-in-law went to Mayo Clinic for evaluation and treatment. I believe that it was helpful.

  13. April 18, 2019

    Luisana D DeGolyer Reply

    I had anterior cervical discectomy and fusion with metal plates and I have severe pain daily, I stopped taking Norco because it stopped working and it made me sick.

  14. July 27, 2019

    Kimweir Reply

    Hi my name is Kim i have Myelomalacia up and down the hole spine i lost over 80% of my spine at the c5, c6 plus l4,l5,s1,s2 .every day o wake up the first thing to go through my mine is i did not die in my sleep am on no meds as in Australia they the doctors say there is no meds for Myelomalacia this bad so am asking is there anything i can do as it taken part of my brain away i live in hell all the time and like the usa most doctors dont know about Myelomalacia most people on this site i hope will not get as bad as me you see i was blowen up in the army that y i say my Myelomalacia is on the hole spine one good thing i lost 3in in height i was 6ft 4in now 6ft 1in i not live to see next year if anybody can help me please do Thank you

  15. August 6, 2019

    Caroline Reply

    I was in a car accident when I was seventeen and received a whiplash that was so severe it almost snapped my neck in half. It was not diagnosed at that time and after being in the hospital for ten days the insurance company wouldn’t pay any more because the only thing the hospital was doing was giving me pain meds and heat and ice packs. Even though I was passing out every time I turned my head to the left. This went on for several months and I finally stopped passing out. They had only crated my lower back and not the cervical area. They didn’t do CTScans or MRI’s at that time. I went on my life living with the pain. Years went by before I was having so much pain and stiff necks that it was unbearable. I went to see a chiropractor who after doing a full body X-ray told me that I had been in a car accident, which I had not mentioned, in my late teens or early 20’s. Hr is the one that told me how bad my injury had been. The X-ray showed that the vertebrae in my neck was in a complete U shape in the opposite direction of where it should be and next me to a orthopedic who sent me for PT which made the pain worse. I was then sent to a neurosurgeon who performed a removal of a disc in my neck and told me I had degenerative disc disease and that I also had several protruding disc and arthritis in my spine. I had also been diagnosed with fibromyalgia many years earlier and was told I should never work again. Having had two children by then I could not stop working because their father and Ihad split up and he wasn’t supporting them. As the doctor had said my disc kept rupturing and I went through 9 surgeries on my spine. I have been in chronic pain for over thirty years and have had so many MRI’s and CT scans that I could wall paper most of my house with the results. After all of those I was just told a month ago that Zi now have a hole in my spine at level C6 due to all of the surgeries and sever spinal stenosis. The neurosurgeon told me that there isn’t anything that can be done about it and that it will continue getting worse and that I would start losing feeling in my body and eventually my neck which has already been going on for some time. I am already in pain management but not knowing why the pain was continuously getting worse and the meds weren’t helping. With this recent information Imat least know why it’s getting so bad, even with very strong pain meds. I will be seeing my pc tomorrow so he can let me know what to expect and what my prognosis is. From everything I have read it is not good. Knowing that it’s going tp continue getting worse has heightened my anxiety and my depression.
    My heart and prayers go out to anyone that has been diagnosed with myelomalacia because it truly is life changing. Realizing that if the extent of my injury had been known when I was seventeen I probably would not have had to gone through decades of chronic pain and continuous determination of my spine. The only thing I can do now is the same thing Inhave been doingband that is to live with it.

  16. August 25, 2019

    Dan Reply

    Hello All, My name is Dan. I just turned 54. In July 2008 I was told by an Orthopedic Spine Doctor from Shrewsbury, New Jersey (Broad Street) I had a “Sequestered” disk and needed cervical decompression surgery. This was in fact true but Hard headed me did not go to a Neurosurgeon for 2nd opinion because he was months out for appointments and the Orthopedic Surgeon made it seem like I needed that surgery that day or I was doomed. Well in September 2008 I had the surgery. I knew immediately when I woke up something was wrong. All of my symptoms were initially confined in my left hand but upon waking from surgery my right shoulder was burning in severe pain and had no feeling. After the first post op visit the “doctor” I told him my shoulder was still burning and I had no feeling he said probably the way I was sleeping was causing my new shoulder symptoms. I spent the next 2 years looking for answers from other doctors and trying to secure an attorney because I KNEW this guy and his partner who I found out later was involved did something wrong and hurt me. I won’t bore you with how my NJ 2 years Statue of Limitations for Malpractice ran out because doctors and lawyers are all in the same old Good Old Boy Network and basically the clock ran out for me to sue this guy for malpractice. Found out later the attorney was friendly with the doctor and let the clock run out on me. (all my legitimate reviews about my horrible experience I post get removed too, only his 5 star reviews stay up) So fast forward to today. I walk with a cane in the mornings when I can finally get out of bed, I walk with a gait, I am weak beyond words. The only muscle I have is my calf muscle. My legs used to be huge but now look deformed other than a well defined calf. I live on needed pain meds just to go to work to support my family and my body which was once a muscular athletic body is now the remnants of muscle atrophy that has actually transformed my appearance so much that even my facial muscles are atrophied. I am ashamed to even wear a t-shirt because my once large biceps and triceps can’t even fill the sleeve. My arms look like someone who has had weight loss surgery and have excess skin hanging where once was a well defined tricep. I wish I could make this up but my entire body is now deformed and I hide it in long sleeves as much as possible. I live in well hidden depression and fear and out of pride force myself to do the simplest tasks only to suffer the nest day due to severe muscle weakness. Every time I read on this all roads lead to breathing difficulties which I already have. No one understands what I am going through. And most doctors out of the dozens and dozens I have seen begging to listen and help me are all so Ladi Da about it. Just make sure they get that co payment but no URGENCY and they seem bored with me! Quick to push you off to the next “SPECIALIST”. I know I am all over the place here. It is hard to put over a decade of info and sadness into words so please bear with me. During one post op visit this guy who I thought was an xray tech for the office stops me in the hall and says “I had a hell of a time getting that piece of bone out of your neck, I had to really yank a pull.” I had no idea who this guy was only to find out he apparently operated on me too. Makes sense though, he probably tugged and pulled so much he damaged my cord. Thanks Dr. M! I had never met this guy other than that day he said this to me. Dr. P who I thought was my surgeon even wrote in his post op report I refused to wear my surgical collar after surgery. I was blown away when I saw that. First off it was a flat out lie and second it makes sense now. He was covering his a$$ because I think they both know what they did to me that day in September 2008 that not only changed but ruined my life and stole away memories I could have had with my kids running and playing which I can do none of! I was a good athlete and my son who is now a senior plays football like I did and I couldn’t do hands on teaching for him because of this condition. I did my best though. Sorry but I am from New Jersey. They can both go F themselves for ruining my life beyond words! I went to see this guy for some pins and needles in my left hand. I never thought when I woke up I would have had to suffer like I have for over 10 years because they caused me a irreparable injury to my spinal cord. DO NOT LET AN ORTHOPEDIC DOCTOR TOUCH YOUR NECK! LET THEM FIX SPRAINS AND MONKEY BAR ARM FRACTURES! I wouldn’t wish Myelomalacia on anyone but them. It is a daily torture. If anyone wants to reach out please do I would love to talk to someone suffering like me. It is a lonely world living with this. I hide my depression which is deeper by the day. I always wake up hoping to feel better and I feel worse. Excuse me now I have to go take my daily pain pill for the morning. Good Luck friends.
    Dan

    • January 19, 2020

      Tula Reply

      You should go & see a Neurosurgeon at a University Hospital, i.e., Robert Wood Johnson, New Brunswick, Jersey Shore University/Trauma Hospital, Neptune, NJ, University Hospital/Trauma Hospital, Newark, NJ. It’s really sad but you’ve been seeing the wrong doctors!

  17. August 26, 2019

    suesan arth Reply

    dan, i hear ya! loud and clear too. i am 63 and was in pretty good shape except for a bit of stenosis in my neck and lumbar. i was originally diagnosed with FIBROMYALGIA. i knew damn well it wasnt even close to correct dx, and i said this to the ‘pain management’ doctor who was treating me. due to a situation with my healthcare provider, kaiser permanente, i lost my best pcp and pain management doctor to destinations in other health plans or private practice by virtue of the fact kaiser permanente went out of business in ohio in 2015. the hmo that took over the patients like me hosed us around for a year and then THEY went out of business. the plan was merged with an existing health plan here. we then got to wait nearly a year for appointments because there were not enough doctors, and when we got to see someone it was for 5 minutes. it became plain to me that the pain management group treating me and others were only interested in nerve block treatments for our pain, numbness, lack of balance, etc. this was just a lumbar issue for me until the spring of 2017 when this jackass pain doctor, who had already done 3 nerve blocks on me successfully, decided my symptoms with my arms and hands was fibromyalgia. i left his office and got online to look for a neurosurgeon to help me out. i was already post l/s decomp laminectomy from 2008 but that surgeon was booked 8 months out. i had to see someone at that moment. i found a doctor who, after assessing my arms and hands issue and a diagnostic mri, showed me my neck and what was wrong…i had to have this fixed right away to prevent progression. i had the surgery on my neck 2 years ago. i returned to this doctor to address this and i now see that cervical cord myomalacia has been the suspected problem for 2 years. no one ever mentioned that one to me, it was always stenosis. suffice to say i am guessing i am outside of malpractice for failure to diagnose on the fool who blew me off with fibromyalgia. too bad i am not outside of having negative symptoms of myomalacia. when i looked this issue up i was and still am shocked no one mentioned this issue until now. its obvious that it cant be still in the beginning stage so early treatment is out. looks like i can live my golden years with progressive upper limb paralysis. i too know what you mean by suffering with secret depression. i havent worked since 2008 and had to live on my 401 and savings until i started collecting ssdi. suffice to say i am broke, on food stamps, depressed, in pain, dont want to see anyone or go anywhere. i gained 40 pounds which really bums me out. this is due to inactivity waiting to address a new lumbar issue until the cervical problem was ‘taken care of’. then a third surgery on my lower back so i can walk better and lost that hideous pain, but my arms are crap.i have a full garage of ryobi yard tools i bought for myself several years ago. this summer was the first time i got to use them. i couldnt cut my grass or anything. i have a depressing feeling i am screwed with this cervical issue. i have even gone out on the internet for meds to augment the sparce amount of ultram i have been given, finally. i would really prefer to have this problem corrected so i dont need meds, but i have a feeling that will never happen.i too always expect the next day i will feel better, but it doesnt happen. now i set my alarm to wake me up an hour before i want to get up–this is time to take the first round of lyrica and ultram and wait for the meds to work. i have a feeling i too have gone on to ‘old testament’ long here….but i wanted to tell you i hear you loud and clear, friend….

    • August 27, 2019

      DAN Reply

      Suesan, Breaks my heart to read your story. I know how you feel. Nobody wanted to listen to you either. I have one more appointment next month before I throw in the towel. I am going to try a Spinal Cord Injury Doctor at Hopkins. I already know he is going to tell me nothing he can do. At this point he will probably confirm the Sloppy Choppy Orthopedic “surgeon” damaged my cord during the fusion which I mentioned I knew when I woke up from anesthesia something was wrong. I wish I was a fly on the wall that day!I am sure there are other patients who they injured during surgery and covered it up with erroneous Post Op reports and said the patient refused to wear the surgical collar! Just so they could get 5 STARS in all the BS reviews too many of us depend on that are all crap! So Dr. P and Dr. M from Shrewsbury New Jersey if you ever read this ROT in HELL you MF’s!! Am I still pissed off? Yup Just a little! I would post both their names but eventually I will not be able to work and I can’t afford to be sued by these greedy scum bags and their greedy lawyer buddies!

  18. October 12, 2019

    Gail Bumala Reply

    People, I found a Facebook Group by the name of: Myelomalacia. It’s been great to find people who understand. Come and join us.

  19. November 15, 2019

    Ave Reply

    Good god, I’m in so much pain. They finally diagnosed me with myelomalacia. So if I’m symptomatic in most ways does that mean it’s advanced?

    • November 15, 2019

      Kim Reply

      Now your world of hurt starts but be lucky your not in Australia as they say Myelomlacia is untreatable so no pain tabs for me go home and be happy.Myelomacia sucks

    • November 17, 2019

      Luisana Reply

      Anyone with pain it’s super normal, from what I read and hear our spinal cords are deteriorating. If you haven’t joined Myelomalacia on Facebook k recommend you do. God bless.

      • November 17, 2019

        Kimweir Reply

        Here in Australia we are told to go home and die no pain meds just told to go I never knew I live in a 3 or 4th world country they say Myelomlacia cannot be treated lucky me to live in a country that cares

  20. November 15, 2019

    Ave Reply

    Kim, are u speaking to me? I’ve been in a world of hurt. I also have CRPS, but not sure u r speaking to me. I’m completely freaked out. I drop everything, my legs turn purplish and red, constant headaches and numbness I’m miserable. Can anyone talk to me. I mean just type. I can barely type ☹️

    • November 15, 2019

      Kim weir Reply

      I was wonder how long u had this illness?? As for me about 7years now thank god this is the last year of hell

      • November 16, 2019

        Ave Reply

        What do u mean this is your last year?

        • November 17, 2019

          Kim weir Reply

          I will die in the next 12mounth I hope alot sooner as an ex Pala med I know all the signs and what my body telling me at best I leave this hell

    • November 17, 2019

      Kimweir Reply

      Yes mate I talking to you and anyone least that live in this nightmare to you all am sorry as I lived with this now for over 7years 8 in February that 8 years of hell makes me think what did I do to get this

    • November 28, 2019

      Kim weir Reply

      Yes am talking to you I have Myelomalacia too if I can help you I try and if you need to talk an here so please tell me what you want to know

  21. November 16, 2019

    Ave Reply

    I guess people don’t use this forum much. It’s too bad because I feel like we all need to support each other and share experiences and knowledge. If anyone wants my email please let me know. I’m a chronic pain patient with numerous incurable diseases including Myelomalacia, CRPS/ RSD Fibromyalgia and more. Positive thoughts to all ✌🏻😘❤️

    • November 17, 2019

      Kim Reply

      I almost died last night so writing something nice about this illness is hard every thing about it is bad my Moto brain dieing off so even writing this is a big thing but if I can help you I will ok

  22. November 18, 2019

    Lisa Keyser Reply

    Hi
    5 years ago I had Cervical decompression surgery due to Spinal Stenosis. They explained my cord was being bruised so surgery was needed quickly. It was severe by that time because the only symptom i had was a stiff neck feeling.
    Upon waking up from surgery All heck broke loose and i was screaming from arm pain and had lost use of arms. Thankfully use came back but not without issues.
    Has anyone found any relief from the pain of this? I am under the care of pain mgmt but there has got to be a better way than living in horrible pain the rest of my life. My arms feel like they are on fire, frost bitten and run over by trains all at the same time. Im a tough cookie but im loosing the battle on dealing with this.
    Thanks
    Lisa

    • November 18, 2019

      Kim Weir Reply

      Am in the same boat but worse no pain meds I lived with this now for 7years now and I have a real bad time trying to go to sleep but now I bit down from pain so when I wake up I have lock jaw and all my teeth hurt so now I try not to sleep what a life I live

  23. January 19, 2020

    Tula Reply

    You should go & see a Neurosurgeon at a University Hospital, i.e., Robert Wood Johnson, New Brunswick, Jersey Shore University/Trauma Hospital, Neptune, NJ, University Hospital/Trauma Hospital, Newark, NJ. It’s really sad but you’ve been seeing the wrong doctors!

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