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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.
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@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.