Understanding and Treating Myelomalacia

Also read: Promising New Treatments for Myelomalacia and Spinal Cord Injury 

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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.**

79 Replies to “Understanding and Treating Myelomalacia”

  1. 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

  2. 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?

  3. 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!”

  4. 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.

  5. 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…

  6. 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?

  7. 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.

  8. 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?

  9. 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. 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.

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

  12. 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.

  13. 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.

  14. 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.

  15. 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

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

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

  18. 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.

  19. ? 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.

  20. 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.

  21. 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.

  22. 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.

  23. 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

  24. 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.

  25. 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!!

  26. 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

  27. 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.

  28. 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

  29. 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

  30. 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

  31. 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

  32. 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….

  33. 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!

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

  35. 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?

  36. 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

  37. 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 ☹️

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

  39. 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 ✌??❤️

  40. 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

  41. 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

  42. 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.

  43. 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

  44. 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

  45. 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.

  46. 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

  47. 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

  48. 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

  49. 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

  50. 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

  51. 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

  52. 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!

  53. 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!

  54. Had lol 3 cervical fusion 1 year ago today. Also have myelomalacia, as well as myelopathy. If you Havnt had this type of surgeries you can’t understand the traumatic changes in LIVES.

  55. I had my C5,C6,L4,L5,S1and S2 replaced the doctors say there not a thing they can do for me now and as I live in Australia I cannot get medication of any sort that takes the pain away am glard it my last year here I almost died 3 times now there is no treatment for Myelomolinca but remember I was down to 1.5mm before my operation plus I was blowing up In the Amry so I was a mess to begin with and that was 30years ago so I have had a long run so listen to the doctors a do what they say so you don’t end up like me

  56. A lot of people seem to getting this neck surgery as of late, I feel it has something to do with the microwave transmissions that have building over the years. The doctors are definitely pushing the neck fusions with metal braces and screws. I have put it off for about 5 years using a chiropractor with some results.I feel that this brace may be heating up because of the microwave radiation. As a retired marine engineer, I couldn’t see this little brace or clip mounted between 2 vertebrae as providing much stiffness for fusion. I am curious as t4o the symptoms you were having before the surgery. Mine were visual problems including visual image distortions and shapes that would start small and grow and finally disappear in about an hour, and head area tingling, constant head pressure

  57. I think that if we turn off all the cell towers, drop the weather radar and satellites, this nightmare would end for many people.

  58. Hi Caroline,
    All of us on here apparently are suffering with the same hellish nightmare. There was something in your story I really want to ask you about; the passing out when you turn your head left! I do too. It has progressed to happening sometimes when I tip my chin down too.
    What can you share all the feedback you know about this?
    The last Neuro I saw suggested I was having a spinal siezure; causing a blackout. So that has led to the long list of “testing”, I am not interested in having$$$$$$. But need to know results.
    The honesty of the “we really don’t know”, has me more worried but less inclined to search further for answers. But this issue is a Biggy.
    I don’t want to suddenly pass out and not wake up if can be avoided.
    Please please share more about this part. Thanks, Cin

  59. Hey guys! So I have Scheuermanns Kyphosis which has caused compression fractures and atrophy at T7-8. They also found myelomalacia at that level. I will need to go in for corrective surgery for my kyphosis. I’m just hoping that they plan on decompressing that area as well or what’s the point? I’ll lose my legs at some point and I definitely don’t want that.

  60. My story, my experience with spinal related pain, myelomacia and spinal epidural hematoma. *I’ve found until Dr cuts you open you are not taken seriously on your pain. I’ve been fortunate but it’s been a struggle.
    This is probably all over the place but it’s like unbelievable my journey’s over-whelming and just now doesn’t always take my breath away. .

    My Dr went in to fix my myelomalacia, which was found from the MRI that was to prepare him for a failed back surgery from TLIF we did a yr. prior in the lumbar area.
    *He’d been told 12.5 months previously, radiologist & pain mgmnt Drs (2 total) advised from an MRI there was a large mass, spinal cord was flattened from t10 to lumbar and swollen above, not common to see.
    *I trusted my surgeon when he says your OK to hold off.
    *I was in pain still so that’s why pain Dr requested it and this was 4 months after double fusion surgery, laminectomy,etc.
    *My pain Dr wanted to know why was I in so much pain and he told me I needed surgery from MRI results and again I trusted my surgeons opinion over the others, I was called to come back to the Hospital and do the MRI AGAIN.
    *That mass sat there for a year and I’m convinced it’s the cause of my myelomacia.
    *I’d felt for a yr I was experiencing a neurological deficit with my words being lost. I told my family, my therapists, my boss, my Drs, everyone significant in my every day life, to no prevail.
    *I had to resort to like 4 letter words and my vocabulary diminished to the point I was nervous to have a conversation with people due to I might sound uneducated, uninformed, vulnerable, etc, even seemed over medicated at times, I swayed, I furniture surfed, memory loss and felt I was suffering from a brain deficit.

    *Everyone (mom & reluctantly, and gently my husband) says you always say you hurt, or something is wrong. IF YOU READ TO THE END, YOU’LL SEE a very QUICK TURN ABOUT THAT TOOK place AND a HUGE, “IN YOUR FACE” happening. Oh, how they ate their words, choking even on them (mom lost her nasty attitude, that is just her nature, good as gold after all this for a few months) and they never challenge me now.
    I told them I was angry/bitter with them and myself for convincing me that it was me whining, I was being a baby and they were tired of hearing it. How could I do that to myself and how could they be so inconsiderate and where was the support in my beliefs that were quite serious.
    *What if I told hubby his chest pain was just magnified to him and stop being dramatic while he had a heart attack, I didn’t tell my mom when she had a copd exacerbation needing hospitalized, settle down and maybe you could breathe better, then stop thinking/ talking about it day in and day out.
    *I’m very in tuned to my body and when there’s something new, feeling different, becoming a new pattern, etc, I call the Dr, I’m also emailing along with it and I send photos if necessary. He knows if I call there’s something needing his attention which I appreciate. *So, this summer my surgeon says its time because I called him advising not only is MY LEFT LEG and FOOT STILL NUMB, MY RIGHT TOE, JUST ON THE TIP, HAS THE SAME SENSATION AS THE LEFT. It feels as I just left the dentist and that terrible feeling when the numbness is wearing off, like the tingly hand or foot that fell asleep, it’s dreadful having it on the left leg/ foot for about 5 years. (* they had a podiatrist evaluate it even. Stated I needed surgery. There was quarter sized loose bone fractured in that left foot and they cut a nerve hoping it’d work and correct the numbness, but was advised to wait till after 2/2019 TLIF, because the nerve may not need snipped if the feeling returned. Nerve was unnecessarily cut but I understand its not needed, idk.
    *It didn’t help with any of those but hey, why not add a 2 procedural foot surgery 2 months after spinal fusions- multi level at that and them laminectomies hurt the worst to me.
    *I told him at every interaction not anything is improving that was numb bf 2/2019 TLIF, and still hurting from 1st surgery, and I felt worse with new and same symptoms.
    *I was made to doubt myself and suck it up, quit being a drag, so dramatic and theatrical.
    *I felt maybe I’m being a baby but this past late April, early May, I felt no more, I can’t do this any more, i don’t know what’s going on but I’m not okay.
    *I was loyal to my surgeon, felt he was the most knowledgeable on what was needed and he was the only one I’d let get into my spinal area because I felt he knew what was in there and was very familiar with it and he knew what work was done.
    He says we will fix you 7/14/2020.
    *So he says he fixed the myelomacia and 4wks later, I awoke from a nap and I’d thought immediately, wow, I feel no pain period, from my surgery, which pain is a constant for a long time after.
    * I THOUGHT how AMAZING to FEEL THIS WAY, PAIN FREE, NOT MEDICATED OR ANY THING, TRULY PAIN FREE. I wanted to keep that feeling but realized my independence would be lost.
    *It’d been decades since feeling pain free and then I went to get off the bed and found I had paralysis in my mid section only and it was so hard to walk from no hip and upper thigh muscle control.
    *Within a week, I was wheel chair bound. That was right after 7/14/2020’s correction for 2/2019 surgery, the failed back surgery fix and then he added another double fusion.
    *So making it 4 fusions in all that 7/2020 surgery, with laminectomy in the thoracic, to protect the cord from the spreading of myelomacia (more spinal cord injury).
    *Another MRI showed more nerves being damaged so he says I can fix this.
    *So, I have another surgery 9/15/20, now he has me titanium fused on a few more and laminectomies completed (very painful procedure in my opinion) from s1 to t9. *Approximately 1/2 of my spine now is titanium, almost a dozen levels, since my 1st spine surgery 2/5/2019, less than 2 yrs.
    *So, his promise to fix me, feeling very positive and excited, but scared.
    *On 9/15/2020, I showed up for my surgery,
    and had more fusions and laminectomies. ***AND TO EVERYONE’S SURPRISE, I WOKE UP PARALYZED as A PARAPLEGIC and MY FAMILY, AND MYSELF WAS TOLD I’D NEVER WALK AGAIN. MY MOM WAS THINKING A REST HOME CLOSER TO HOME WOULD MAYBE BE BEST FOR ME. SERIOUSLY- NOT THE RIGHT THING TO SAY. Nobody, hardly any friends would/will talk to me because they felt awkward, I assume. So I say why even talk about it, talk about what we used to, give me the gossip, but nope, nothing! I forgive them.

    *Hubby says, about a week into this new prognosis at the hospital, I’m proud of you for taking this so well and I don’t know that I could do that. I told him and them I knew better, this isn’t permanent, they were wrong. I felt like just chill, soak up my new environment and get the nurses, sanitation and cafeteria routines down.
    *I never got excitedable about it when he told me. Unusual for me because the hothead takes over when felt need to protect but I was cool about it. I could still smile, joke, feel happy talking to my husband usually and I never allowed myself to think about things as a paraplegic. When he went home to go to bed for work the next day, the nurse knew I wanted my night meds to knock myself out. I awoke each morning at 530am to be hand washed, dressed, hair and makeup done bf pt therapy arrived at 8am, occupational therapy at 630-7am.
    *I definitely am the wrong person to tell that I’d never be able to walk and be my hyper-active self that can handle 5 issues, while loving on the doggy (referred to as “my girl”), making dinner, doing dishes, laundry, etc.
    I’m adhd so the energy level was just over loaded. They had to ask me to stop and let my muscles relax and recover from my days sessions. I reminded them I’m the youngest by 30 yrs on this floor and understand their concerns but I’m not elderly, I iced my muscles every evening and kept feet elevated with those hose worn they give to reduce swelling.
    *My surgeons focus was why was the myelomacia was causing this, never really explored other possibilities? There is no cure for myelomacia, they can slow it down and he was certain it was all removed that was present, not sure how that works, but my family Dr told me he boasted proudly it was removed.
    **Then he second guessed himself. Telling me this will be permanent likely but he’d not stop looking and consulting. For the record, he was by my side day-and-night, then when out of the woods, if he did not in person hang in my room, then it was by phone at all times of the day, including weekends. When he hung out, it’d be 7am,12am, 5pm, he didn’t have any other priorities other than to try and figure out what happened and apologized often that this had never happened to him before. He’s experienced and has the robotics that guides him, he’s the only one in the state certified enough to use it.

    *Then my blood pressure after surgery wouldn’t rise above 90/40, pulse 40 for hours. Immediately bf i had anemia become present in my blood work.
    **That’s a tell-tell for spinal epidural hematoma, but if recent laminectomy performed its very possible for SEH present if new symptoms, such as I was about to experience. 1 in a million have hematoma in the spines epidural, very rare, but so is myelomacia.
    *I’m 50 and other than my pain and parathesia meds, I take zero maintenance meds and all numbers are in good range with some excellent.

    **I watch hubby battle it and it makes him down on himself if he chooses a pleasure. Hard to watch. I’ll enjoy myself rather than exist miserably if presented with the decision.
    I love my blood work, I feel like it’s a report card.
    I don’t boast out loud because hubby is an uncontrolled diabetic/quintessential open heart surgery patient that I constantly lecture and police his meals (Dr requested that and he agreed). I think mine is genetics also I just don’t like meat, since probably birth. I’m not a vegetarian per say. I eat mainly rabbit food, drink milks and juice, no water, maybe 1 pop sipped every 7 to 10 days, unless needing Sprite for tummy settling. I do eat crushed ice all day, morning to night=Equals MAYBE 1 1/2 cups a day of H20. I prefer a vegetable vs an entree. I don’t eat after a few bites because I’m no longer hungry and hate to feel full, it’s a lazy, sluggish and uncomfortable feeling for me in my own opinion. Never dieter because I’m not going to get down if I fail, again, I will KEEP MY COMFORTS. ANYWAYS, MOVING ON (SORRY)
    *There’s one or 2, I may keep mindful of, slightly aware what I can do or am I willing to do, just to obtain a good status during blood draws, do what we got to do. I refuse to choose or relinquish my comforts and be miserable, in lieu of, good blood panels. of me about an inch, then 15 ft achieved after lunch, so difficult and exhausting and I could sit up on my own, use a slide board to a wheel chair, those type of things. The next day I walked 25 ft then each session had significant progress, next session 81 ft, then on the weekend I raised myself 100% on my own, out of my wheelchair while in parallel bars for safety, I Could not feel if the assistant behind me raised me so they filmed it for me. I knew then, heck yeah,I got this, that Monday I could do 100ftx2, by end of week, walked back to my room (all walker assisted and someone holding my support belt) and my walk was not pretty, but I was doing it, my feet scissored and I’d step on my own feet and wouldn’t even know it. Now, I’m telling hubby let me hold onto you like nothing is wrong and he says wow a few weeks ago, you are pretty much there on my best walking performance saved for public and by hubby’s side. I’d really never know it then goes on to how proud he is with what I’ve been through and the strength and endurance I’ve had to reach inward for.
    *My pt therapist, 30 yrs experience, floor’s physical therapist supervisor. He said I showed so much promise every session, even just from morning to screening sessions, 4 a day, plus my entire evening was working on controlling muscles and training my feet/ankles to face outward. and not criss cross. so we went into the lunch time when everyone was gone. He said I was inspiring with trying everything and beyond, but not putting my self at risk, wink, wink.
    So the nurses put alarms on my bed so if I got myself out of bed and my wheelchair. My therapist, is forever in my heart, his colleagues days he was foolish to try and walk me and 30 days later on 10/14/2020, they allowed me to walk over the threshold when I was discharged. I can now walk the grocery store with a quick rest and a shopping cart in lieu of a walker, for safe keeping with my label of being high risk still. I can’t drive and always have to have my husband or grown son close by if I’m up and about but I can walk from bedroom to kitchen with no assistance from time to time. I have an awful lot of saddle parathesia which makes me miserable and I have brain fog from the lack of blood supply running to and from spine and brain but is improving. I’d never been able to do this even last month, I lost my job BTW in November, my medical was half million and my company which is a telecommunications giant and largest media provider in the US felt the checks needing double signature was enough to finally say its probably cheaper to be sued,however they did, at the end of the day, COME THROUGH FOR ONE OF THEIR OWN, SENT ME A REHIRE LETTER ONCE HEALED, APPROVED ALL PAID DISABILITY, GAVE ME MY REMAINING TIME IN MY 6 mos paid STD THROUGH 12/6/20 and approved 24 Mos PAID LTD which STARTED 12/7/20. I worked there almost a decade after I did a career change, 1st career was 21 yrs, same company, I’m a sucker for loyalty. Anyways my life has been turned up side down and just be careful people. I’ve had some folks that made me feel good and for just a second, but feeling this parawhatever it is because every day is giving myself a goal of summer timedifferent for me, some days I feel I need a wheel chair, rare though, but walker daily, some days I feel like I want to drive or walk on my own, but I know better. Driving is my next challenge and am giving myself till summer. Which I have to go through a driving course with physical therapy at a larger hospital bf driving is allowed, never realized but makes since. I failed to reportin a physical therapy junky, just kidding, but I always ask for it because it does help if loyal to it which I’m not saying it removes all pains and being free of pain mgmnt bc I faithfully fill my pain medication RX and rarely miss a dose, I have to stay in front of this stuff bc it’s so painful still with all them surgeries and procedures. It can increase endurance and strength, I’d gotten to where I could, with control, lower myself and sit in the car’s seat without having to fall into the car’s seat as it was not something I could do since Feb, 2019’s spinal fusion. I also was doing aquatic physical therapy 2x a week, 2 monthly land sessions, for 3 months then covid hit, it is 1 on 1 and he was preparing me to be able to try the gym’s aqua aerobics class, but aqua therapy, just you and your therapist, is just amazing and its low impact, weight controlling, positive body shaping. If any of this is inspiring or for you, scratch that, apologies, I’m not going to finish the beginning of being politically correct with other things on my mind and I chalk it up to my brain deficit. Anyways, i don’t know if my previous persistence having physical therapy helped me through this. My therapist at the hospital, I absolutely can’t think of any way to appropriately thank him or even let him see how deeply and sincerely feel I owe him my life. He told me my last day his colleagues told him he was a fool to even try but he just knew I was different and determined. I have another one up, I’d also been faking my walk for 5 yrs with the left foot being basically of no use to me. Which I mentioned earlier my foot and leg was numb, surgeon didn’t go high enough and I can report that I now feel the toes and occasionally the bottom of my heel since all these surgeries, that is one positive thing from this. Most days I feel all is ok but then occasionally I don’t even want to be awake and I stay asleep for days, hubby says I’ve been asleep since day after Christmas until 1/3/21. He’s probably right. I take my sleeping med at night, wake up, take a small portion, fall asleep to late noon, do it again till he comes home at 430, we have dinner every night door dashed because standing is painful when more than 5 to 10 minutes and severe adema, I’m not asking him to cook dinner after 10 to 12 hrs worked, but then I go right back to sleep after dinner. I don’t look at my phone or respond for days and my son comes over saying what the heck mom! He’s right. I have a new grand baby in April coming, less than a mile from me, so that will keep me awake.
    I’m saddened what others go through.
    I was exhausted to finish this and stopped spell check.

  61. I raced through your post the first time I hungry hope you had included something anything that may help me.!
    The second time I read it slowly feeling all the sadness the glimmers of you like me being willing to take the scraps as good enough less is more
    The years of searching stoic to the pain tolerating the idiots and our I won’t give up or in attitude has left us with waisted years crappy spines no direction debt isolation and a need to shout YES YES IT CAN BE WORSE
    NO NO SURGERY IS NOT A FIX.
    The biggest disservice my doctor’s did for and 2 me was to not face truth any better than I & try to fix unfixable. I knew the risks but took most freely. The crime? Most of the damage was caused unintentionally. Some by unforseen error
    So now do we beg for more of the same?
    I choose to reach out once a year or so then crawl back to my hovel of home a d try to finds symptom relief for myelomalacia non surgical. The only thing holding me up right is a collection of metal corroding along with my spine the worst part is my cervical thoracic kyphosis has my bowling bowl head pulling me over against all odds. The resulting stenosis may get me first!
    It is me now. I need to get off the hamster wheel. I make no promises or apologies anymore.
    I do what I can.some of what I want Life is kinda good that way
    All the odds I bet on getting well are now-lets see what tomorrow brings.
    Wishing you all the best of today and tomorrow brings

  62. I was just diagnosed with c-4-5 myelomacia. It’s been two weeks since the fluke accident that happened with a massage that went wrong. I saw Dr Riew in NYC.
    The first thing he said was that he saw a small white dot on my mri and said Myelomacica. This surgeon is one of the best in the world. He only does Cervical.
    I didn’t know what myelomacia was when he mentioned it but the surgeon said that’s usually not good. When I learned exactly what myelomacia was I freaked out and called the surgeon’s office. The nurse had sent him an email regarding my obvious concerns.
    He started backtracking and said maybe it was just an “artifact” on the mri and he would discuss after a cat scan and EMG.. After accidentally finding this site (thank God) from what I have read I’m still in shock as I learned this yesterday. Can anything be done at this early stage or does this progress regardless of any surgery to decompress the spine? There is very little info on the internet regarding this rare condition. which in itself is scary. After reading these posts and the horrible symptoms from this disease I am scared to death. Can anything be done surgically at this early stage? Or is it useless? Please respond. Feeling hopeless. Any info would be so much appreciated.

  63. I was told by one of the best cervical surgeons in the world that I have myelomacia at c-4 c-5 yesterday 4/16/21. It happened after a fluke accident. It’s only been two weeks since the incident. The surgeon didn’t go into detail about the myelomacia. I didn’t know what myelomacia was until yesterday when I googled it.
    There is virtually no websites mentioned this disease.
    Maybe 10 and half were about dogs. Thank God I came across this website. I am in shock and terrified after reading the posts here. The surgeon did not say any of this. He said there was a subtle white spot on the mri at c4-c5. The radiologist did not see it. From what everyone on the site there is nothing that can be done surgically. Is this 100% true.
    This happened to my neck 3 weeks ago. The surgeon, Dr Riew in NYC is one of the best cevical spine surgeons in the world. He is the only spine surgeon that only does cervical. Am I understanding correctly they even 3 weeks into this there is nothing that can be done? Hopefully someone will respond to this post and tell me the truth. I have read everyone’s story and in a state of shock and despair.

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