Myelomalacia: Let's connect

@jenniferhunter who are the doctors at mayo that have knowledge of this condition? I am looking to find someone at Mayo's rather than my hometown where it is not well known.

@lcsw0799 @sarahmargaret Spine surgeons and Neurologists should have knowledge of myelomalacia and spine disorders due to compression of nerves and/or the spinal cord. If a condition has progressed to myelomalcia, that may be a permanent condition representing permanent damage. During spine surgery, nerves and the spinal cord are decompressed by removing something. In my case, that was a bad disc that ruptured in my neck that grew bone spurs pressing into my spinal cord. I had surgery before permanent damage happened, and I had great results. Every patient is different and may also come with comorbidities that affect the outcome. Healing takes a long time.

I came to Mayo Rochester for my 6th specialist consult and had surgery there. My consultant was Jeremy Fogelson. If you have a spine issue, start with a spine surgeon. They will schedule the other specialists they need in diagnosing such as a neurologist whom they work with routinely. Dr. Fogelson is excellent and has great demand for his appointments. There are other good spine specialists there too. I picked Dr. Fogelson because other surgeons (not at Mayo) were missing my diagnosis, and I read one of his papers that referred to symptoms similar to mine, so I knew he would understand my case.
https://www.mayoclinic.org/biographies/fogelson-jeremy-l-m-d/bio-20055624

I'm not sure if I'm posting in the right place or not. Brand new here! Recently started therapy because of thoracic myelomalacia. I am not sure if the doctor actually confirmed the chronic myelomalacia that was found on the MRI but there is cord compression with t2 intensity in that area. T7-T8 disc compression. I have an appointment in Rochester next month to discuss if surgery is a viable option. I have not had any spinal surgeries but have had spinal issues since I was 16 after an injury. I am being told from the providers and my physical therapist to go to the ER if there are changes in bowel/bladder function, numbness, and being able to walk. But I find that there really isn't much providers can do. My neurosurgeon here in Eau Claire said that surgery would only be an option to stabilize and not return function which is what lead me therapy to cope with this "new normal". My therapist said she was seeing someone who may have mentioned they also had this diagnosis. I'm sorry to here there are others and I'm equally sorry that it seems we are being invalidated and left to our own devices as far as recovery is concerned. It seems that providers have things they would like to say but cannot. It is all very overwhelming and finding a support system is one of my priorities. I just had to buy a cane because walking has become challenging for me. I'm in physical therapy as well to try to maintain a new normal but it seems to be worsening as time progresses. It is unfortunate that being seen sooner for something this serious is not an option. But, I remain confident in the professionals and follow all of their advice. Thank you for your time in reading this.

I am sorry you are dealing with these spine issues. My opinion is that you are definitely on the correct path by going to another provider and within the Rochester system. Again, my opinion is that the therapist you have been working with does not understand the full scope of this diagnosis. (The therapists I went to had not a clue about this disease, if you will, and wouldn't even acknowledge the word, I stopped going because I was worse after several appointments). Finding a provider with full knowledge and expertise is crucial to your well being. You have taken the first step. Best wishes and I hope you find the right doctor.

@msnyder84 Welcome to Connect. I do think your providers are trying to let you hold onto some hope. They don't know exactly what recovery is possible for you, and they are being honest in their thoughts about wanting to prevent further damage and try to stabilize your condition. That is what I was told for my spinal cord compression in my neck (which has been operated on.) The spinal cord has very limited ability to heal from damage according to medical knowledge today. Spinal cord damage can be permanent if some of the nerve cells have died. I know that may be hard to think about, and you'll find ways to adapt. Remember, the paralyzing accident to actor Christopher Reeve? He had a spine fracture causing spinal cord trauma and in time he accomplished a lot that no one thought was possible. He had lost the ability to breathe on his own without a ventilator, and through therapy, he regained that for intermittent periods of time, but it was not the same as an uninjured person's ability to breathe. He also gained a minimal amount of use of his legs in walking if he was supported in a pool with the buoyancy of the water. No one thought that was possible, but he believed and he worked for it. I remember watching that in a special on TV.

As far as thoracic spine issues, there are a lot of spine surgeons who do not work on the thoracic spine levels because of the complication of having the lungs physically in the way to access the spine during surgery. The surgeons who do operate there are the deformity specialists who do very big surgeries to correct issues like scoliosis. You may want to find a surgeon with that expertise whom you trust in case you get into an emergency state of loosing control of bowel and/or bladder. That is why they told you to go to the ER if that happens, because there is a short window of time to decompress the spinal cord to prevent permanent damage and having incontinence become permanent.

Hello Jennifer
Thanks for your response
Sorry for my late response I ‘be grown up with half my C1 missing ( the arc) on the ataxia, limited neck movement grown up with disc deg, spinal stenosis , nerve root compression all cervical C5/C6 C7and then I have gone into spinal cord compression unfortunately spinal surgeon missed this prehaps didn’t look at mri scan properly 2018 . He referred me to neuro thinking brain issue , I failed more tests etc again missed neuro did 2019 mri and said nothing significant
Had to get second opinion saw 2nd neuro failed more tests I’m told muscle neck spasm I’m saying it’s my neck previous possible C5 childhood fracture then asked to see another spinal surgeon, I saw neurosurgeon 2024 who re looked at 2019 mri and there was spinal cord signal , spinal fluid leak &cervical Myelopathy. Neurosurgeon did more scans mri and ct and myelopathy had improved but have melomalicia.

I’m seeing neurosurgeon in a few weeks he said he thinks I have had previous cervical melophay on his letter also that my ataxia is caused by melomalicia and if I’m concerned about loss of function arms and legs we will discuss and look at the merits of surgery at next meeting as at present not clear.
So I think I’m already knackered .
No never had previous surgery I should have though

The loss of function I have never been able to carry a tray, pick things up with fingers etc and had a wierd sensation when walking or when using hands. I now know it was perhaps the melomalicia . I’ve been fighting it with weights etc so I have power but it’s a daily battle , however there are people out there with this condition in wheelchairs and immense pain.

@sarahmargaret Your story is important and helps others know how important it is to advocate for yourself. It's also important to understand that a lot of spine surgeons don't want to take difficult cases or those with greater risk. Upper levels of the cervical spine at C3 and above are riskier because the nerves for life support that service the heart and lungs originate in that area. They can make up a lot of excuses to avoid saying there is a problem that they can fix. All surgeons are not like that, but I've also had my share of surgeons who refused to help me, and my surgery was a simple fix, but it confused several. I did have my surgery at Mayo that resolved the problem. Your surgeon is trying to document everything so it is clear what your present condition is.

I'm sorry you have had loss of function. There is probably no way to know if surgery can help regain any function. You are right in that things could be worse. I hope you'll share your experience as you go forward with treatment. Good luck with your rehab when you get to that stage.

Thanks Jennifer
I trust the neurosurgeon and very proud of him as he wrote to other neurologists at same hospital / colleagues and pointed out.
There is spinal compression etc there is history of falling etc . As someone posted sometimes they don’t like to go against others opinions.

I’ve also had a spinal fluid leak where compression was it’s like a slit on the scan neurosurgeon confirmed spinal fluid leak but not too significant ( but the slit that maybe the Myelmacia ( spelling ) I would like to re name it as …… as it is so difficult. It’s nice we can share on this site. The gent that posted with cane I’m glad you’re still having a bit of benefit with therapy keep fighting it.
I have no joy unless I do squat weights . If we stop fighting it we lose more function

@sarahmargaret I agree. Do everything you can to maintain hope and joy in your life. We're here for you to help share your journey so you are not alone.